Susan Jane Alexander BHlth(Nursing) (Honours) RN

Susan Jane Alexander BHlth(Nursing) (Honours) RN

A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers

and Nursing Staff

Thesis submitted in support of a Doctor of Philosophy program of research and study

2009

Abstract Malignant wounds occur infrequently but are always distressing and overwhelming for

patients, caregivers and nursing staff. The successful management of the malodour,

exudate and other symptoms typically associated with malignant wounds is punctuated

by challenges that at times may appear to be relentless. These challenges exacerbate

the psychosocial issues of patients who are already trying to come to terms with a

terminal diagnosis but must now also deal with a wet, smelly wound.

Despite widespread acknowledgement that patients with malignant wounds typically

experience a range of psychosocial problems, this study has revealed that there is very

little formal knowledge of what those problems might be or how best to manage them.

Existing literature contained only minimal discussion of what the experience was like for

those living with a malignant wound or the people who care for them. This study was

designed to investigate the lived experience from the perspectives of patient, caregivers

and nursing staff to provide information that would assist in addressing this gap in our

current knowledge base. In this way, when health care practitioners understand the

totality of the experience for those undergoing it, they will be better placed to enhance

the care provided for those people.

Within phenomenological methodology, interviews were conducted with patients,

caregivers and nursing staff to learn about the experience from those who have lived it.

Data were analysed thematically to extract themes that presented the experience.

Beneath an overarching theme that recognised malignant wounds as ‘an intense and

unforgettable experience’, four major themes emerged:

i) Malodour ii) New mode of being-in-the-world iii) Still room for hope iv) Enduring memories

The information presented by this study will be of assistance in meeting the many

challenges faced by those living with a malignant wound or the people who care for

them.

Thesis: Phenomenology of Malignant Wounds Page ii Author: Susan Alexander

Certificate of Authorship and Originality of Thesis (Declaration) The work contained in this thesis has not been previously submitted either in whole or in part for a degree at Central Queensland University or any other tertiary institution. To the best of my knowledge and belief, the material presented in this thesis is original except where due reference is made in text. Signed: Date:

Thesis: Phenomenology of Malignant Wounds Page iii Author: Susan Alexander

Copyright Statement This thesis may be freely copied and distributed for private use and study, however, no part of this thesis or the information contained therein may be included in or referred to in publication without prior written permission of the author and/or any reference fully acknowledged. Signed: Date:

Thesis: Phenomenology of Malignant Wounds Page iv Author: Susan Alexander

Contents

ABSTRACT ........................................................................................................... I

CERTIFICATE OF AUTHORSHIP AND ORIGINALITY OF THESIS (DECLARATION) ................................................................................................. II

COPYRIGHT STATEMENT ................................................................................. III

CONTENTS ........................................................................................................ IV

LIST OF TABLES AND ILLUSTRATIONS ....................................................... IXI

ACKNOWLEDGEMENTS .................................................................................. XI

LIST OF PUBLICATIONS ................................................................................. XII

ABBREVIATIONS ............................................................................................ XIII

INTRODUCTION .................................................................................................. 1

Terminology 1

Thesis Outline 3

CHAPTER ONE: LITERATURE REVIEW ........................................................... 6

Process 7

Overview of the Malignant Wound Literature 8

Evidence Base 9

Epidemiology 10

Aetiology 13

Presentation 13

Assessment 14

Thesis: Phenomenology of Malignant Wounds Page v Author: Susan Alexander

Caring for the Patient 17 Malodour ...........................................................................................................................19 Exudate .............................................................................................................................23 The Pain Experience .........................................................................................................27 Bleeding ............................................................................................................................29 Psychosocial Issues ...........................................................................................................30 Addressing Psychosocial Issues ........................................................................................41

Patient Perspectives in the Literature 44

Caregiver Perspectives in the Literature 49

Nursing Perspectives in the Literature 50

Models of Illness 53 Biomedical Model .............................................................................................................53 Biopsychosocial (BPS) Model ..........................................................................................55 Biopsychosocialspiritual (BPS/S) Model ..........................................................................56

Conclusion 57

CHAPTER TWO: METHODOLOGY .................................................................. 59

Qualitative Research Paradigm 60 Researcher Stance .............................................................................................................62 Reflexivity ........................................................................................................................64

Phenomenology 67 Development of Phenomenology ......................................................................................68 Phenomenological Concepts .............................................................................................71 Hermeneutic Phenomenology ...........................................................................................72 Phenomenology of Ill Health ............................................................................................74

Research Question 77

Achieving Rigour 77

Ethics 79 Confidentiality ..................................................................................................................80 Researching Vulnerable Populations ................................................................................80

Data Collection 84 Interview Method in Qualitative Research .......................................................................85 Sampling ...........................................................................................................................87 Participant Vignettes .........................................................................................................90 Conducting the Interviews ................................................................................................92 Supplementing the Data Collection Process .....................................................................96

Analysis and Findings 97 Thematic Analysis ............................................................................................................97 The Themes.....................................................................................................................103

Methodology Conclusion 108

Thesis: Phenomenology of Malignant Wounds Page vi Author: Susan Alexander

CHAPTER THREE: MALODOUR ................................................................... 109

‘The Biggest Thing’ 111 Patients ............................................................................................................................111 Caregiver .........................................................................................................................114 Nurses .............................................................................................................................114 ‘The Biggest Thing’: Comparison With the Literature ..................................................116

Social Isolation 123 Patients ............................................................................................................................124 Caregiver .........................................................................................................................124 Nurses .............................................................................................................................125 Social Isolation: Comparison With the Literature..........................................................127

Desensitisation 129 Patients ............................................................................................................................130 Caregiver .........................................................................................................................130 Nurses .............................................................................................................................130 Desensitisation: Comparison With the Literature ..........................................................131

Dealing With the Malodour 133 Patients ............................................................................................................................133 Nurses .............................................................................................................................134 Dealing With the Malodour: Comparison With the Literature ......................................136

Responding Appropriately 138 Nurses .............................................................................................................................138 Responding Appropriately: Comparison With the Literature ........................................139

Conclusion 142

Substantiating Existing Literature 144

Additions to the Literature 144

Implications for Future Research 144

Thesis: Phenomenology of Malignant Wounds Page vii Author: Susan Alexander

CHAPTER FOUR: NEW MODE OF BEING-IN-THE-WORLD ........................ 145

Being-in-the-World 147

Impact of the New Mode of Being-in-the-World 148 Patients ............................................................................................................................149 Caregiver .........................................................................................................................151 Nurses .............................................................................................................................153 Impact of the New Mode of Being-in-the-World: Comparison With the Literature ......154

Seeking Information 163 Patients ............................................................................................................................163 Caregiver .........................................................................................................................164 Nurses .............................................................................................................................164 Seeking Information: Comparison With the Literature ..................................................165

Delaying Presentation 166 Nurses .............................................................................................................................166 Delaying Presentation: Comparison With the Literature ...............................................167

Traumatic Experiences 168 Patients ............................................................................................................................168 Caregiver .........................................................................................................................168 Nurses .............................................................................................................................169 Traumatic Experiences: Comparison With the Literature ..............................................169

Negative Emotions 170 Patients ............................................................................................................................170 Caregiver .........................................................................................................................171 Nurses .............................................................................................................................171 Negative Emotions: Comparison With the Literature ....................................................174

Finding Benefit 176 Patients ............................................................................................................................176 Caregiver .........................................................................................................................176 Nurses .............................................................................................................................177 Finding Benefit: Comparison With the Literature .........................................................177

Emotional Labour 178

Conclusion 182




Recommendation 184

Thesis: Phenomenology of Malignant Wounds Page viii Author: Susan Alexander

CHAPTER FIVE: STILL ROOM FOR HOPE ................................................... 185

Hope 187

Hoping for a ‘Good Death’ 189 Patients ............................................................................................................................189 Caregiver .........................................................................................................................190 Nurses .............................................................................................................................190 Hoping for a ‘Good Death’: Comparison With the Literature .......................................192

Hoping for a Cure 197 Patients ............................................................................................................................197 Caregiver .........................................................................................................................198 Nurses .............................................................................................................................198 Hoping for a Cure: Comparison With the Literature .....................................................199

Responding to Patients’ Hopes 200 Patients ............................................................................................................................200 Caregiver .........................................................................................................................200 Nurses .............................................................................................................................202 Responding to Patients’ Hopes: Comparison With the Literature .................................203

Answering the Difficult Questions 206 Nurses .............................................................................................................................206 Answering the Difficult Questions: Comparison With the Literature ............................207

Denial 209 Patients ............................................................................................................................209 Caregiver .........................................................................................................................210 Nurses .............................................................................................................................210 Denial: Comparison With the Literature ........................................................................211

Complementary Therapies 215 Patients ............................................................................................................................216 Caregiver .........................................................................................................................216 Nurses .............................................................................................................................216 Complementary Therapies: Comparison With the Literature ........................................217

Conclusion 218




Thesis: Phenomenology of Malignant Wounds Page ix Author: Susan Alexander

CHAPTER SIX: ENDURING MEMORIES ....................................................... 222

Memorability 224 Caregiver .........................................................................................................................224 Nurses .............................................................................................................................226 Memorability: Comparison With the Literature.............................................................227

Lengthy Periods of Memories 234 Caregiver .........................................................................................................................235 Nurses .............................................................................................................................235 Lengthy Periods of Memories: Comparison With the Literature ...................................236

Triggers 237 Caregiver .........................................................................................................................237 Nurses .............................................................................................................................238 Triggers: Comparison With the Literature .....................................................................239

Coping With the Memories 239 Nurses .............................................................................................................................239 Coping With the Memories: Comparison With the Literature .......................................240

Good Memories 243 Nurses .............................................................................................................................243 Good Memories: Comparison With the Literature ........................................................244

Conclusion 244




CONCLUSION .................................................................................................. 248

Limitations of This Project 251

Recommendations 252

Finale 255

REFERENCES ................................................................................................. 256

ATTACHMENT A: HREC APPROVAL LETTERS .......................................... A-1

ATTACHMENT B: INFORMED CONSENT PACKAGE .................................. B-1

ATTACHMENT C: SELECTED CODES AND SUB-THEMES ........................ C-1

Thesis: Phenomenology of Malignant Wounds Page x Author: Susan Alexander

List of Tables and Illustrations

TABLE 1: Patient Demographics .................................................................... 89

TABLE 2: Caregiver Demographics ................................................................ 90

TABLE 3: Nurse Demographics ...................................................................... 90

TABLE 4: Stanzas and resultant codes from Jemima’s interview ............. 101

TABLE 5: Strophes and resultant themes from Jemima’s interview ......... 102

TABLE C1: Selected codes and sub-themes for patients, caregiver and nurses ............................................................................................................... C1

FIGURE 1: The world-shattering impact of malignant wounds................... 106

FIGURE 2: The ripple effect from the world-shattering impact of a malignant wound .............................................................................................................. 107

Thesis: Phenomenology of Malignant Wounds Page xi Author: Susan Alexander

Acknowledgements This project could not have been conducted without the invaluable and ongoing support

of Dr Wendy Madsen and Dr Pam McGrath. Their advice and feedback was always

helpful, couched in positive terms and provided the researcher with motivation at times

when it seemed to be in short supply. Thank you Wendy and Pam.

Equally important were the participants who gave so willingly of their time and shared

their experiences with the researcher. Without their input, it would not have been

possible to present the stories of people living with malignant wounds or those caring for

them.

Thanks are also extended to Ms Ros Probert of the Princess Alexandra Hospital

(Brisbane, Queensland) and Ms Robyn White of St Vincent’s Hospital Brisbane (formerly

Mt Olivet Hospice) who supported this research project by referring patients who were

recruited into the study.

Finally, I must extend my utmost gratitude to my partner John. His constant

encouragement, support and understanding contributed in no small way to the

successful completion of this project. I am also grateful for his editorial input which has

helped to shape this report of the study.

Thesis: Phenomenology of Malignant Wounds Page xii Author: Susan Alexander

List of Publications Alexander, S. Malignant fungating wounds: epidemiology, aetiology, presentation and

assessment. Journal of Wound Care 2009; 18: 7, 273-280.

Alexander, S. Malignant fungating wounds: key symptoms and psychosocial issues. Journal of Wound Care 2009; 18: 8, 325-329.

Alexander, S. Malignant fungating wounds: managing malodour and exudate. Journal of Wound Care 2009; 18: 9, 374-382.

Alexander, S. Malignant fungating wounds: managing pain, bleeding and psychosocial issues. Journal of Wound Care 2009; 18: 10, 418-425.

Thesis: Phenomenology of Malignant Wounds Page xiii Author: Susan Alexander

Abbreviations HCP health care professional/practitioner.

ABI altered body image.

BPS biopsychosocial

BPS/S biopsychosocialspiritual

HREC Human Research Ethics Committee.

PTSD post traumatic stress disorder.

ETSD end-of-life traumatic stress disorder.

CBT cognitive behaviour therapy.

Thesis: Phenomenology of Malignant Wounds Page 1 Author: Susan Alexander

Introduction

Health care professionals are aware that malignant wounds are a devastating

complication occurring in a small number of cancers that typically signal advanced and

incurable disease with limited therapeutic options and grave prognosis. Malignant

wounds have been defined by Grocott (1995, p. 240) as ‘the condition of ulceration and

proliferation which arises when malignant tumour cells infiltrate and erode through the

skin’. They generally discharge high levels of exudate, are malodorous, possibly

disfiguring and usually difficult to manage. Patients often describe the impact of a

malignant wound as devastating and capable of shattering their previously familiar

modes of existence. However, despite their ability to forcibly disrupt a patient’s life, little

is known about the psychosocial issues associated with malignant wounds. The

psychosocial domain is an important component of what it means to be a human being.

Issues within that domain typically influence, and are influenced by, the other domains,

commonly perceived to be physical and spiritual. Therefore, to successfully treat the

health conditions of individuals, it is necessary to consider issues within all of the

domains that constitute human beings.

This study was designed to learn more about the issues for those with malignant wounds

and those caring for them. The research question for the study was: what is the lived

experience of malignant wounds according to patients, caregivers and nursing staff?

Terminology For the purposes of this thesis, ‘malignant wound’ refers to non-intact skin involvement

arising from cancerous processes. The wounds may be ulcerative, proliferative or both.

The term does not include lesions or other alterations on skin that is still intact.


Within the literature, malignant wounds have been referred to by a number of different

terms, including ‘fungating wound’, ‘malignant cutaneous lesion’, ‘cutaneous

metastases’, ‘malignant ulcers’ and others. ‘Fungating wounds’ is one of the more

commonly used terms. However, strictly speaking, ‘fungating’ describes a particular

type of wound – one that is proliferating with a ‘cauliflower-like’ (or fungoid) appearance,

as opposed to ulcerative wounds which are erosive and have a crater-like appearance.

Therefore, the term fungating was not adopted for general usage in this thesis because

not all malignant wounds are fungating.

The term ‘cutaneous metastases’ was also not widely used in this thesis because it

described wounds arising from distant tumours that have metastasised to the skin.

However, some malignant wounds are caused by primary melanomas and, hence, are

not metastatic. ‘Cutaneous metastases’ also often refers to lesions such as nodules or

zosteriform lesions or other types of cutaneous involvement that are less invasive than

the malignant wounds focused upon in this study.

Although ‘malignant cutaneous lesions’ is a more accurate description of the malignant

wounds investigated in this study, this term was not adopted for general usage because

it might also include the less invasive types of cutaneous involvement already

mentioned. Accordingly, the plain English term ‘malignant wound’ was adopted to

describe skin ulceration arising from malignancy, whether such malignancy be primary

or metastatic.


Thesis Outline Chapter One of this thesis comprises a review of existing malignant wound literature.

Although this literature is steadily increasing, one of the major findings of Chapter One is

that it focuses on the management of physical symptoms of malignant wounds. Only

minimal attention has been paid to the psychosocial issues of those living with a

malignant wound or the people caring for them. As with so many other disorders, more

is known about the clinical management of people with malignant wounds than about

their psychosocial issues. This study is significant because it aims to address this gap in

existing knowledge by interviewing patients, caregivers and nursing staff and analysing

the information collected to elucidate what the experience was like for those who were

living it. By providing a lens through which readers can view the participants’ worlds, this

study will enable readers to understand the challenges encountered by those living with

a malignant wound and the people who care for them.

Chapter Two will describe the methods adopted to achieve the aim of this study. It will

include discussion on why phenomenology was selected as the appropriate

methodology, how the in-depth interviews were conducted, and the processes adopted

to analyse the data thematically to extract the themes that represented the experience

from the perspectives of those living it. Arising from these methods, an overarching

theme was developed: ‘Malignant wounds – an intense and unforgettable experience’.

It will be represented graphically in Chapter Two as a world-shattering impact as if an

object (the malignant wound) had impacted upon the person’s existence (their world).

Beneath this overarching theme were four themes, each of which will be presented as a

separate discussion chapter in this thesis:

i) Malodour (Chapter Three)


ii) Changed mode of being-in-the-world (Chapter Four)

iii) Still room for hope (Chapter Five)

iv) Enduring memories (Chapter Six)

It is significant to note that three of the themes extracted in this study referred to issues

that were psychosocial – the domain often overlooked by health care professionals in

favour of symptoms in the physical domain. This spotlight on psychosocial issues is

significant because caring for the patient as an integrated entity (as opposed to just a

wound) requires attention to all domains of their existence. Yet, there was only minimal

mention of psychosocial issues in the malignant wound literature and even less

discussion on their possible management. This finding highlights again the need for

greater understanding of the lived experiences of those with a malignant wound and the

people who care for them.

Chapters Three to Six will present the information that achieves the aim of this project.

Chapter Three will discuss the impact of malodour on patients, caregiver and nurses,

their (typically unsuccessful) attempts to manage it, and the psychosocial issues

associated with a physical symptom frequently referred to as ‘the biggest thing’ and

blamed for the social isolation often endured by patients with malignant wounds.

Chapter Four will discuss the impact of a malignant wound, frequently so intense that

patients and caregivers felt as if their previous existences had been shattered and

replaced with new and unfamiliar modes of being-in-the-world designed in accordance

with the dictates of the malignant wound. Although the impact was typically less intense

for nurses, they still described experiences that altered their previously familiar modes of

being-in-the-world.


Chapter Five will discuss the concept of hope amongst people with malignant wounds

and those caring for them. Although hope is generally recognised as a positive

construct, this chapter will demonstrate the tension that sometimes arises when a

patient’s hopes diverge markedly from the viewpoints considered by HCP to be more

realistic. This tension was particularly noticeable in the concept of a ‘good death’ and

patients’ pursuance of complementary therapies as they sought a cure for their

malignant wound.

The final discussion chapter, Chapter Six, will discuss the propensity for malignant

wounds to impact upon caregivers and nurses so intensely that they remember the

details of the case vividly for many years. In some cases, the patients had died more

than twenty years previously, yet nurses were still able to clearly recall all of the details

of the case.

In summary, this study has identified a gap in the existing knowledge base related to

malignant wounds. Ensuing chapters will describe how this study has contributed to

filling this gap. First, however, will be the literature review which identifies the gap that

led to this study.


Chapter One: Literature Review

The ensuing review will reveal that the vast majority of available literature on malignant

wounds dealt with their assessment and clinical management. It will be noted that there

has been little investigation of the lived experience or the psychosocial issues

associated with malignant wounds. Typically, psychosocial issues were only

acknowledged before moving on to management of the physical symptoms.

Accordingly, one of the highlights of this review will be the minimal attention paid to the

management of the psychosocial issues associated with a malignant wound.

This chapter will commence with a description of the process adopted for the review and

a brief overview of the reviewed literature. After noting the focus on clinical

management, the strength of that evidence will be discussed, culminating in the finding

that there has been little robust research on which practice guidelines might be based.

The ensuing section on epidemiology offers one of the reasons for this lack of research

as being the deficiency of accurate statistics on the incidence and prevalence of

malignant wounds. The chapter will then provide a background to the topic, briefly

overviewing the pathophysiology, presentation and management of malignant wounds,

as discussed in the literature. However, as one of the major findings of this review is the

lack of investigation into psychosocial issues associated with malignant wounds,

discussion will pay greater attention to the limited literature that is available on that topic.

Finally, discussion will briefly review the recognition amongst a growing number of HCP

that effective care is best provided through a holistic model of care that integrates all of

the domains of an individual’s existence – the so-called biopsychosocialspiritual model.

Of course, in order to implemenent a biopsychosocialspiritual model of care, it is


essential to understand the totality of an experience, including the largely previously

overlooked psychosocial issues.

Process The review of the literature commenced prior to data collection and analysis and

continued throughout the project in simultaneity with other tasks. Some researchers

recommend that existing literature not be reviewed until after data collection and

analysis to prevent the review from influencing these procedures (Burns & Grove 2005;

Munhall 2001). However, it was considered that this possibility would not be likely in this

study as preliminary research had already indicated that there was very little literature on

the lived experience of malignant wounds from the perspectives of patient, caregiver or

nursing staff.

Literature for this review was obtained from a number of different sources. Using the

search terms ‘fungating’ and ‘malignant wound’, the following electronic databases were

searched: CINAHL, Cochrane Library, Internurse, Liebert Online, LWW Nursing and

Sports Medicine Collection, Medline, MediText, Proquest, PubMed, Springer Journals

Online and Wiley InterScience. A hand search was also conducted of Wound Practice

and Research, the official journal of the Australian Wound Management Association, and

a number of wound management and palliative care textbooks. Also reviewed was Dr

Patricia Grocott’s (1999) doctoral thesis An Evaluation of the Palliative Management of

Fungating Malignant Wounds, within a Multiple-Case Study Design. The period

searched was 1990 to 2009. Subsequently, the reference lists of the accessed articles

were hand searched. This search was extended to prior to 1990. However, less than

5% of the reviewed articles were pre-1990. Only English language papers were


considered. In total, 264 journal articles, nine book chapters and one thesis were

reviewed.

The reviewed literature is summarised in ensuing sections. For further discussion on the

contents of existing malignant wound literature, please refer to Alexander (2009a,

2009b, 2009c, 2009d).

Overview of the Malignant Wound Literature Preliminary expectations were confirmed after reviewing the literature and it was found

that there was minimal discussion of the psychosocial issues associated with malignant

wounds. The majority of existing malignant wound literature focused on the physical

effects of the wounds and their clinical management. However, many of the authors

writing on the physical effects of malignant wounds also recognised the dearth of

information on psychosocial effects and the need for further research into these issues

(Piggin 2003; Schulz, Triska & Tonkin 2002; Wilkes, Boxer & White 2003).

Only one article was found that discussed in detail the impact on nursing staff of caring

for patients with malignant wounds (Wilkes, Boxer & White 2003). Only two articles were

found that investigated what it was like to experience a malignant wound from the

patient’s perspective (Lo et al 2008; Piggin & Jones 2007). One other article also

identified some psychosocial issues of patients but did so in conjunction with the trialling

of an intervention program (Lund-Nielsen, Muller & Adamsen 2005a). A thesis by Dr

Patricia Grocott (1999) also discussed some of the lived experiences of patients with

malignant wounds but the major focus of the thesis was on dressing performance.

There was no literature on the effects on caregivers of caring for somebody with a

malignant wound. Beyond the literature on malignant wounds were some articles that


discussed psychosocial issues associated with chronic wounds, facial disfigurement and

other assaults on individual body image (Clarke & Cooper 2001; Coull 2003; Henderson

2006; Newell 1999; Piff 2000; Price 2000; Rumsey, Clarke & Musa 2002; Rumsey,

Clarke & White 2003; Sen, Ross & Rogers 2001). It is reasonable to expect that some

of these issues would also apply to patients with malignant wounds. Like the malignant

wound literature, many of the authors writing about chronic wounds similarly lamented

the neglect of psychosocial issues which were typically overshadowed by a focus on

clinical management (Hollinworth & Hawkins 2002; Jones et al 2006; Jones 2008).

Evidence Base Even though the literature on the management of malignant wounds was substantial, the

vast majority of the articles relied almost entirely on anecdotal reporting, case studies or

expert opinion as there has been little formal research into the topic (Grocott 2007;

Hampton 2008; Lazelle-Ali 2007; Lund-Nielsen 2001; Noblet 2008; Wilkes 2001). As a

result, much of the contemporary management of malignant wounds comprises

interventions that are random, unstructured and not based on best evidence (Lund-

Nielsen 2001; Vandevelde 2005; West 2007).

A 2007 Cochrane review recognised this deficiency when it highlighted the need for

quality research into malignant wounds as there was ‘insufficient evidence to direct

practice with regard to improving quality of life or managing other wound symptoms

associated with fungating wounds’ (Adderley & Smith 2007, p. 2). The review identified

only two randomised controlled trials amongst patients with malignant wounds but

outlined methodological concerns in both and suggested that the degree of statistical

power was insufficient to justify their clinical usage. The authors also stated that there

had been no significant advances in the management of fungating wounds in the last ten


years and cited another study (Kelly 2002) which had concluded that the material

currently informing practice was scarce and outdated.

Grocott (1999) reviewed the reasons why so little research has been conducted into

malignant wounds. She found that they did not constitute a priority, and nurses in both

Europe and America did not identify them as a key area for research. Suggestions to

explain the lack of priority included the possibility that dyspnea and other immediately

distressing problems might take priority, and the possibility that the non-healing status of

the wound might relegate its importance clinically (Grocott 1999). Ivetic and Lyne

(1990), however, suggested that malignant wounds have not been researched because

they are difficult to study and are not amenable to observation through scientific

methods. One of the reasons frequently proffered for the lack of research into malignant

wounds is the alleged infrequency with which they occur. However, as will be discussed

in the next section, there is actually a dearth of statistical evidence suggesting what the

actual incidence might be.

Epidemiology According to Adderley and Smith (2007), exact statistics on the incidence of malignant

wounds are non-existent as their incidence is not recorded in any population-based

cancer registers. In their place are estimates that vary between 5% and 14% of cancer

patients. However, the usefulness of these estimates is in doubt because of the lack of

standardisation of inclusion criteria. For example, some researchers calculated

incidence as a percentage of metastatic cancers (Lookingbill, Spangler & Helm 1993);

others calculated it as a percentage of total cancers (Lookingbill, Spangler & Sexton

1990), while still others did not include melanomas (Krathen, Orengo & Rosen 2003).

There was also no standardised usage of terms to describe malignant wounds. As a


result, some researchers included intact skin lesions while others only included lesions

on non-intact skin. For example, in their review of sixty seven patients with malignant

wounds, Maida et al (2008) recorded a point prevalence rate of 14.2% However, when

the intact lesions (nodules, indurations and zosteriform lesions) were removed from the

calculations, the prevalence rate dropped to 9%. Alvarez et al (2007) cited results from

a study conducted amongst cancer patients at Calvary Hospital, US, which reported a

prevalence rate of almost 7% for malignant wounds. However, the authors did not

provide any details of the criteria used for this calculation.

Lookingbill, Spangler and Sexton (1990) performed the only meta analysis conducted to

date when they reviewed 7,316 cases of cancer (non-metastatic and metastatic but

excluding melanomas) in Pennsylvania and reported a frequency rate of 5%. However,

the researchers suggested that the actual figures were higher because some malignant

wounds may not have been reported. In a subsequent analysis of the same data,

Lookingbill, Spangler and Helm (1993) reported a frequency of cutaneous involvement in

420 (10.4%) of 4,020 patients with metastatic disease. The apparent increase in

incidence occurred because melanomas were included in the second analysis and the

incidence was calculated as a percentage of metastatic cancers only. Neither of these

two studies reported the proportion of intact versus non-intact cutaneous involvement.

In light of the available statistics, it is predicted that in excess of 5% of cancer patients

will experience a malignant wound. As cancer treatments improve survival rates and as

human longevity continues to improve, it is likely that the rate of incidence will increase

(Akman et al 2003; Clark 2002; Stokowski 2007; Toner et al 2000).


Although unable to agree on the incidence of malignant wounds, most authors did agree

that the prognosis for patients with malignant wounds was grave and that life expectancy

was often less than six months (Haisfield-Wolfe & Rund 1997). Although there were

reports of individuals living with malignant wounds for many years, these instances were

rare (Price 1996; Saeed, Keehn & Morgan 2004). Saeed, Keehn and Morgan (2004)

reviewed 77 cases of cutaneous metastases over 10 years and reported that 28.6% of

patients had died within the first six months and 75% had died within the first 12 months.

Even worse survival rates have been reported by other authors. For example, Wu et al

(2006) claimed a mean survival of only six weeks following presentation of cutaneous

metastases arising from genitourinary primary cancers. Similarly, Fyrmpas et al (2006)

reported that most patients with primaries in the lung, cervix or oesophagus died within

three months of the appearance of cutaneous metastases. The prognosis for patients

with multiple sites of involvement was even worse. Saeed, Keehn and Morgan (2004)

reported that the survival rates for these patients reduced by 30% compared to patients

with single-site involvement.

Alonso-Llamazares et al (1998) reported that the incidence of malignant wounds in

children is extremely rare and very few cases have been reported. In their 1993

retrospective study of 4,020 cancer patients, Lookingbill, Spangler and Helm found only

two cases of malignant wounds in children.

Accounts of malignant wounds healing were scarce. Lund-Nielsen, Müller and Adamsen

(2005a) reported success in healing a malignant wound but did not provide any details.

Petrek, Glenn and Cramer (1983) reported that three of nineteen breast malignant

wounds healed following radiotherapy but did not provide any further details. The

wounds in the cohort of nineteen women ranged from 1cm to 8cm. Lo, Hsu and Hu


(2007) presented the case of a healed malignant breast lesion but the wound was more

superficial (6 x 7 x 1cm) than those typically discussed in the literature. In any event, as

discussed by Grocott (2003), even if improvement or healing can be achieved,

recurrence is high, and patients might be faced with managing a malignant wound all

over again.

Aetiology Malignant wounds most often arise as a result of:

i) Tumour cells metastasising from local or distant primary tumours; ii) Primary cutaneous tumours; or iii) Direct invasion of a primary tumour into the cutaneous structure (Naylor 2003).

Other, less frequent, causes have been reported. For example, Naylor (2002c)

discussed the possibility of malignant wounds occuring in wounds of long duration

(Marjolin’s ulcer). There is also the possibility that malignant wounds might arise as a

result of tumour cells implanted iatrogenically during surgical procedures such as

mastectomy or other invasive procedures (Cormio et al 2003; Jain et al 2005; Marcoval,

Moreno & Peyri 2007; Moore 2002; Rendi & Dhar 2003; Resnik, DiLeonardo & Gibbons

2006; Saeed, Keehn & Morgan 2004). As cancer treatments continue to improve

survival rates, it is also possible that there will be an increase in the incidence of

cutaneous malignancies arising from radiotherapy treatment for previous malignancies

(Walton & Broadbent 2008).

Presentation Malignant wounds may present as either a crater-like ulcer (destructive process) or

raised nodules similar in appearance to a cauliflower (proliferative), hence the term


‘fungating’ often applied to these wounds. Wounds may also present as a combination

of both ulcerative and proliferative (Carville 1995).

Often, the first sign of skin involvement is the development of discrete, non-tender skin

nodules resulting from tumour proliferation within the skin structure. It may also present

as erythematous plaques or areas of alopecia (Seaman 2006). Eventually, the

cutaneous abnormalities may combine and develop into a malignant wound. As these

cancerous processes advance, massive skin damage may result from the disrupted

blood and lymph vessels, the disorganised micro-circulation, coagulopathy, buildup of

waste, oedema, hypoxia and necrosis (Dowsett 2002; Naylor 2002b). Malignant wounds

can grow rapidly and may enlarge noticeably within a 24 hour period (Collier 2000).

Malignant wounds may occur anywhere on the body and have been reported in sites as

diverse as the nail bed, eyelid, scrotum and ear (Saeed, Keehn & Morgan 2004). Breast

tumours metastasising to the breast or chest wall are the most common occurrence in

women (39-62%) (McDonald & Lesage 2006), while cutaneous metastases from primary

lung cancers are the most frequent occurrence in men (Rubinstein et al 2000). Other

common sites include head and neck (24-33.8%); back, trunk, or abdomen (1-3%); groin

or axilla (3-7%); and genitals (3-5%) (McDonald & Lesage 2006).

Assessment As it is beyond the scope of this thesis to discuss the assessment of patients with

malignant wounds in detail, this section will provide a summary of discussion within the

literature. Recognised within the literature was the importance of a comprehensive,

sensitive and non-judgemental assessment of the patient, particularly in the case of a

disorder as devastating and complicated as malignant wounds. The assessment should


inform the development of an individualised treatment plan, as well as providing the

baseline against which interventions can be evaluated (Draper 2005; Moody & Grocott

1993; Naylor 2002c; Seaman 2006). Effective communication is of paramount

importance and the patient must be provided with the opportunity to discuss and be

involved in all aspects of her/his treatment (Wilson 2005).

The assessment should be ongoing and incorporate all domains of the patient’s illness

experience (not just the malignant wound), how they are coping and the ongoing impact

on the lives of themselves and their families (Haisfield-Wolfe & Rund 1997; Naylor

2002a; Neal 1991; Pudner 1998; Wilson 2005). It should include their nutritional status,

self-care ability, psychosocial issues (depression, body image, sexuality), past health

history, current morbidities, allergies, social support, strengths and coping abilities,

spiritual and cultural needs. It is encumbent upon health care professionals to listen

attentively to the patient’s story in order to understand their experience and how it has

impacted upon their sense of self and their being-in-the-world (McGrath 2001; Sen, Ross

& Rogers 2001). ‘Being-in-the-world’ is a term commonly used by phenomenologists to

describe the totality of an individual’s existence. It incorporates physical, psychosocial

and spiritual domains, and the individual’s relationships with all of the things in those

domains and within the world in which s/he exists (Walton 1999). This concept is

defined and discussed in greater depth in Chapter Four.

Laverty (2003) highlighted the importance of comprehensive, individual assessments

when she reported on long-held assumptions that had subsequently been proven to be

false. She compared the benefits of listening to each individual mastectomy patient, to

determine what the loss had meant for them, with the practice of HCP who assumed

they already knew what women were going through, based on previous work relating to


women’s views of their breasts. As a result, she cautioned HCP against adopting pre-

conceived assumptions when assessing patients and encouraged them to assess each

patient as an individual – a ‘clean slate’ each time – in order to ensure a more accurate

picture of the person and the impact of the disorder on their existence; their ‘being-in-

the-world’.

One of the major components of assessment, of course, will be the assessment of the

malignant wound itself. However, as highlighted by other researchers (Grocott, Browne

& Cowley 2005; Haisfield-Wolfe & Baxendale-Cox 1999; Naylor 2002a; Schulz et al

2009), the sheer complexity of these wounds, the symptom burden, their uniqueness

and the rapidity with which they might alter makes the development of a universal

assessment tool an extremely complicated process. Current wound assessment tools

do not address the complexity of malignant wounds nor do they take into account the

profundity of their impact upon patients, caregivers and clinicians. Furthermore, current

wound assessment tools are designed to assess wounds that are expected to heal. As

a result, their usefulness in the assessment of malignant wounds is limited.

Grocott (1999) recognised these complexities during her in-depth investigation of the

assessment of people with malignant wounds. As a result of her research, she

developed an assessment tool that was flexible and captured the concerns of each

individual living with the problems. Grocott based her assessment tool on the TELER

(Treatment Evaluation by Le Roux’s method) assessment tool because it identified

individual needs, defined management goals in conjunction with the patient and

recorded outcomes at both individual and group levels while maintaining the focus on

the individual. Even so, in recognition of the complexity and uniqueness of each wound,

she still highlighted the need for individualised assessment.


More recently, researchers in Ontario have developed an assessment tool specifically

for patients with malignant wounds. The Malignant Wound Assessment Tool (MWAT)

has undergone validity testing through a Delphi process with an international expert

panel from Canada, US, UK, Denmark and New Zealand. Its domains include: clinical

wound features, physical effects, and emotional and social impacts (Schulz et al 2008,

2009). However, the researchers recognised that further testing of the tool by patients

and caregivers is required and that such feedback may increase the complexity of the

existing tool. The researchers also emphasised that the tool was not designed to assess

symptoms comprehensively but to guide clinicians in determining which symptoms

required a more in-depth assessment.

Caring for the Patient The literature noted that the management of patients with malignant wounds presented a

considerable challenge to all involved in the provision of care because each wound was

unique, difficult to treat, often incorporated a variety of problems and was capable of

impacting dramatically upon the patient’s quality of life (Bates-Jensen, Seaman & Early

2006; Haisfield-Wolfe & Rund 1997; Laverty 2003; Naylor 2002b; Nazarko 2006; Neal

1991). Because of their grave prognosis, malignant wounds were generally accepted as

non-healing (Hughes et al 2005; Lotti et al 1998) and care was typically provided within a

palliative framework which focused on symptom control, patient comfort, maximising

quality of life and minimising the impact of psychosocial issues (Dowsett 2002; Fairbairn

1993; Naylor 2005; Williams 1997; Vandevelde 2005).

The symptoms of malignant wounds most commonly mentioned in the literature were:

malodour, exudate, pain and bleeding (Dowsett 2002; Naylor 2002c; Nazarko 2006).


The literature on each of these symptoms and their management will be summarised in

ensuing sections. Infection was also noted as a constant threat because of the

presence of devitalised and decaying tissue which promoted bacterial growth while

inhibiting leukocyte phagocytosis of bacteria (Carville 2005; Hampton 2008). These

problems were often inter-related and reacted together to worsen the outcome for the

patient. For example, infection with staphylococcus aureus or pseudomonas may

exacerbate pain and odour and cause rapid extension of the wound by degrading

collagen and other extracellular components required for granulation and re-

epithelialisation (Grocott 2003; Reynolds 2000).

Other psychosocial effects included: depression, embarrassment, shame,

stigmatisation, loss of confidence and esteem, fatigue, dysomnia, impaired mobility and

activity levels, anorexia, nausea, dyspnea, and social isolation (Bird 2000a, 2000b;

Lund-Nielsen, Müller & Adamsen 2005a; Piggin 2003). Other physical effects discussed

by several authors included discomfort of pruritus and lymphoedema often associated

with malignant wounds (Grocott 2007; Lisle 2001).

Another issue raised by some authors was the difficulty encountered by patients and

their carers in meeting the cost of dressings (Schulz, Triska & Tonkin 2002; Wilkes

2001), resulting in sub-optimal attempts to manage the wound. It was often the case

that medical expenses were increasing at a time when income was decreasing as a

direct result of the illness. However, financial hardship was an aspect of the cancer

experience not often considered within the biomedical realm as it was relegated to the

private world of the patient. This relegation is unfortunate as financial hardship has the

ability to impact significantly on the patient’s response to treatment and quality of life if

s/he is unable to afford dressings, medication, adequate nutrition, travel to and cost of


appointments and the myriad other expenses associated with severe and chronic illness.

In Australia, there are schemes established to subsidise some of these expenses.

However, as pointed out by McGrath (2001), they are not well publicised and the

‘discovery’ of their availability appears to be the responsibility of the patient.

The remainder of this chapter will review the literature on the major physical issues

associated with malignant wounds (malodour, exudate, pain and bleeding), before

leading into discussion of the much less substantial literature on psychosocial issues.

As well as reviewing the literature, it is the intention of the ensuing sections to highlight

the perspectives of those living with a malignant wound and the people who care for

them. It is also worth noting that the vast majority of the information contained in the

literature and reviewed below was presented from the perspectives of HCP.

Malodour Of all the effects of malignant wounds, the smell was described as the factor causing

most distress to patients and their carers and families (Carville 2005; Clark 2002; Draper

2005; Fairbairn 1994; Naylor 2005; West 2007; Wilson 2005; Young 2005). From a

nursing perspective, malodour was also described as being the most difficult symptom to

treat (Bates-Jensen, Seaman & Early 2006; Finlay et al 1996; Grocott 2002; Probst,

Arber & Faithfull 2009; Schiech 2002).

Impact of Malodour

Malodour may be only a small part of the overall cancer experience but authors

highlighted the importance of never under-estimating its psychological effects and

potential to wreak havoc on the lives of patients and their families (Haughton & Young

1995; Jones 2008). West (2007), for example, reported on the case of a patient with an

anal lesion who was unable to sit or walk comfortably and was frequently in excruciating

pain, yet it was the malodour that caused him most distress.


According to Van Toller (1994), humans have a profound and deeply ingrained aversion

to malodours. However, the aversion is not limited to biological factors as malodours

have a social stigma as well (Goode 2004; Young 2005). As a result, patients with a

malodorous wound often experience distress, shame, embarrassment, and depression,

as well as suffering nausea and loss of appetite at a time when optimum nutrition and

quality of life are important (Fleck 2006; Hack 2003; Kelly 2002; Wilson 2005). That their

malodour may render them unworthy of social interaction – either in their own eyes or

the eyes of others – is one of the most devastating aspects of malignant wounds (Young

2005).

The health benefits of a strong social support network are well demonstrated (Detillion et

al 2003; Karnell et al 2007; Sammarco 2001; Schou & Hewison 1999). However, as the

malodour and discharge associated with a malignant wound continue to breach social

boundaries, the opportunities for social interaction become limited. As discussed by

Jones (2008), patients may become reluctant to venture out in case their wound leaks or

the malodour becomes noticeable. Friends and family are also affected and may be

repelled by the uncontrollable noxious smells and substances emanating from the

patient’s unbounded body. Malodour may also permeate clothing, furnishings and be

detectable throughout the residence (Paul & Pieper 2008). Sexual relations and

intimacy may cease altogether if a spouse is unable to tolerate the malodour and

changed appearance of their wife or husband (Wilkes, Boxer & White 2003).

Aetiology of Malodour Another consequent of the lack of research into malignant wounds was the uncertainty

surrounding the cause of malodour. However, there were some suggestions within the


literature which, albeit not supported by robust scientific evidence, were credited with

contributing to the malodour common in malignant wounds:

i) Devitalised tissue has lost the ability to attack invading bacteria through the

process of leucocytic phagocytosis (Hampton 2004). As a result, it provides an

excellent medium for the growth of aerobic and anaerobic bacteria whose actions

catabolise proteins in the necrotic tissue, causing a smell likened to that of rotting

flesh (Nazarko 2006).

ii) Secondarily, the volatile fatty acids produced by the invading microoganisms

themselves contribute to the pungent odour (Goldberg & McGinn-Byer 2000;

Schiech 2002).

iii) Dressings saturated with wound fluid, blood, pieces of necrotic flesh and

bacterial byproducts will also contribute to malodour (Schiech 2002).

iv) If an ulcerating malignant wound extends into a body cavity, the resulting fistula

can increase both the odour and exudate associated with the wound (Naylor

2005).

Whatever the source of the malodour, there is little argument about its likely impact upon

the patient. This impact will be an important component of the assessment which will be

discussed in the next section.

Assessing Malodour Authors have recognised the huge impact that malodour can have on a patient’s quality

of life and the consequent need to manage it effectively. However, the preliminary step

in the development of a management plan – assessment – is particularly difficult in the

case of malodour. It is difficult to assess objectively and there are no instruments

available with which it can be accurately measured (Bale, Tebble & Price 2004; Lazelle-


Ali 2007). As a result, malodour is usually measured subjectively which exposes

assessment to a number of variables, including inter-rater variability and the possibility of

presbyosmia in older patients (Draper 2005; Hack 2003).

In clinical practice, as it was the patient who would be most impacted by the malodour,

Draper (2005) and Collier (2000) recommended that the patients’ subjective assessment

should be the one used to guide nursing interventions. Others, however, have

suggested that patient assessment is less than ideal because they may become

desensitised to malodour over time. This issue of desensitisation will be discussed in

greater detail in Chapter Three where it will be noted that this study and much of the

literature does not support the proposed theory of desensitisation.

Treating Malodour Although a range of interventions was discussed in the literature, the antibiotic

metronidazole appeared to be the treatment of choice for reducing malodour. Numerous

anecdotal reports submitted by other authors attested to the effectiveness of

metronidazole and the relief expressed by patients for the reduction in malodour, often

within only a few days (see, for example: Alvarez et al 2007; Bates-Jensen, Seaman &

Early 2006; Brusis & Luckhaupt 1989; Cooley 1995; Finlay et al 1996; Kuge et al 1996;

McDonald & Lesage 2006; Naylor 2002c; Newman, Allwood & Oakes 1989; Vandevelde

2005).

Although the anecdotal evidence for the effectiveness of metronidazole was

overwhelming, there has been little formal research into its effectiveness in reducing the

malodour of malignant wounds. Only two randomised controlled trials (RCT) have been

conducted. The first trial found that the smell was ‘significantly less after metronidazole


than after placebo’ (Ashford et al 1984, p. 1232), while the second trial found

metronidazole gel to be one hundred percent effective in eliminating malodour (Bower et

al 1992). A corresponding reduction in malodour in the placebo arm of both trials was

attributed to increased nursing attention during the period of the trial. However, both

trials were underpowered because of the low numbers of participants. Their robustness

was also questionable because of methodological concerns about the level of blinding,

the security of the randomisation code and the lack of baseline comparability.

As a result, the reported effectiveness of metronidazole in the literature relied on case

study and anecdotal reporting. Although these forms of evidence are considered by the

scientific community to be low level evidence, the large number of reports of its

effectiveness cannot be overlooked. The anecdotal evidence has shown that the vast

majority of malodorous wounds cease to be malodorous following application of

metronidazole. Any adverse effects are typically minimal and outweighed by the

benefits of a reduction in malodour. In contrast, there are very few reports suggesting

that metronidazole is ineffective in reducing malodour. This argument raises the

question of whether it is ethical to deny somebody the chance to improve their quality of

life while investigations are conducted to determine why that intervention is effective.

Exudate After malodour, coping with excessive levels of exudate was the second physical

symptom causing most anxiety for patients with malignant wounds and those caring for

them. The large amounts of exudate produced by malignant wounds, sometimes in

excess of a litre per day, are notoriously difficult to manage. They usually necessitate

frequent dressing changes which increases the risk of damage to the fragile peri-wound

skin (Nazarko 2006) already weakened through the actions of caustic toxins and other


substances found in chronic wound fluid (Bishop et al 2003; Bradley 2004; Dowsett

2008; Goldberg & McGinn-Byer 2000). Even so, dressing regimes are often ineffective

and patients and their carers are faced with the ongoing need to launder the clothing and

bedlinen soiled by the uncontrolled exudate (Grocott 2000a; Naylor 2005).

Impact of Exudate The importance of controlling exudate was highlighted by authors who discussed the

impact of leakage, soiling, frequent dressing changes or reinforcement, peri-wound

maceration and odour on the already negatively impacted physical and psychosocial

self-conceptualisations of patients (Clark 1992; Grocott 2003). Patients described their

lives as being taken over by dressing changes, leakage of exudate, soiling and laundry

(Grocott 2000a). For example, one patient was so embarrassed by the leaking exudate

that he remained motionless for long periods of time to ensure he did not disturb the

dressing and allow the exudate to escape. This self-imposed restriction not only

reduced his quality of life directly; it also exposed him to the risk of developing pressure

ulcers which would result in yet more wounds and decrease his quality of life even

further (Boon, Brophy & Lee 2000). Banks and Jones (1993) reported on the case of a

71 year old man whose exudate from nasal carcinoma ran back into his mouth. Not

surprisingly, his condition was exacerbated by anorexia and by the psychosocial impact

of facial disfigurement.

Other problems associated with heavy exudate production included anaemia and other

metabolic imbalances occurring as a result of ongoing fluid loss (Hastings 1993; Lotti et

al 1998; Thomas & Vowden 1998). Draper (2005) and Lee et al (2006) also raised the

possibility of large volumes of exudate rapidly diluting topical substances applied to the

wound to reduce malodour, alleviate pain or fight infection. However, there was no

evidence presented to support these claims.


Aetiology and Composition of Exudate Excessive levels of exudate are caused by a number of inter-related factors, including:

leakage of fluids from the disorganised and highly permeable tumour vasculature; the

secretion of vascular permeability factor by tumour cells (Haisfield-Wolfe & Rund 1997;

Naylor 2005); catabolism of tissue by bacterial proteases; and the inflammatory

processes associated with infection (Collier 2000; Hastings 1993).

Exudate comprises a variety of substances, including: water, nutrients, electrolytes,

inflammatory mediators, white cells, growth factors and waste products. However, the

levels at which some of these substances are present may differ depending on whether

the wound is acute or chronic. For example, research has demonstrated that chronic

wound exudate contains higher levels of pro-inflammatory mediators and protein-

digesting enzymes, such as matrix metalloproteinases (MMP), but lower levels of tissue

inhibitors of metalloproteinases (TIMP) (Wallace & Stacey 2008). Because these

imbalances tend to favour tissue degradation rather than repair, healing will be retarded

(Bishop et al 2003; Cutting 2002; Rajan & Murray 2008; White & Cutting 2006; World

Union of Wound Healing Societies 2007).

Coping With the Exudate Dressing malignant wounds frequently presents major challenges. Despite advances in

wound management, the literature recognised that there were still no ideal dressing

products for malignant wounds (Draper 2005, Grocott 2000a; McManus 2007; Naylor

2008). Instead, it was noted that it was often only the nurse’s creativity that ensured the

success of dressing regimes and contributed to the maximisation of the patient’s quality

of life (Carville 1995; Goode 2004; Lisle 2001).


Murphy’s (2006) case study of a patient with a tumour adjacent to his laryngectomy

stoma is a good example of the creative management of a difficult malignant wound. In

this instance, nurses designed a dressing regime comprising a hydrogel sheet cut to the

shape of the wound and a lyofoam T dressing around the baseplate of the laryngectomy

tube. The patient was able to resume social interaction and retain his independence

until his death. Similarly, Carville (1995) reported on the ability to improve a patient’s

quality of life through the creative management of a very complex case involving a sacral

tumour, pressure ulcers on the hips (grade IV) and knees, a rectovaginal fistula, a

thoracic sinus, and abscesses in the chest wall and iliac fossa.

One of the reasons cited for the unsuitability for malignant wounds of many modern

dressing products was their design in line with the moist wound healing theory. This

theory, first postulated by Winter in 1962 (McManus 2007), was developed for

application to acute wounds where healing was the ultimate goal. Unfortunately, the

theory does not transfer quite so well to malignant wounds where healing is generally

not the objective and the wound site is often already excessively moist (Grocott 2000a;

McManus 2007). In place of the moist wound healing theory, Bishop et al (2003)

recommended a ‘moisture balance’ theory to facilitate optimum wound management.

There may even be a case, as suggested by several authors, for dry wound healing in

certain instances of palliative wound management (Bradley 2004; McManus 2007; World

Union of Wound Healing Societies 2007). The retention of eschar on a wound for which

healing is unlikely may relieve patients from the burden of having to cope with a wet,

smelly wound in the last few weeks of life.


It is not the intention of this thesis to discuss dressing products in detail as there is

already excellent literature available on this subject (see for example: Alvarez et al

2007; Carville 2005; Lund-Nielsen, Muller & Adamsen 2005b; Naylor 2005; Nazarko

2006; van Leeuwen, Houwerzijl & Hoekstra 2000; Wilson 2005). There are also many

products from which to choose, including: charcoal, foams, alginates, hydrofibres.

Suffice to say that appropriate products should be capable of absorbing large volumes of

exudate without causing any further trauma to the peri-wound skin, capable of reducing

malodour while maintaining as much body symmetry as possible and available in sizes

large enough for use on the typically large and irregularly shaped fungating wound.

Ideally, they should be capable of being left in situ for longer periods of time, reducing

the inconvenience and discomfort associated with frequent dressing changes.

Selecting an appropriate dressing regime can have benefits beyond assisting the control

of malodour and exudate. It can also assist in reducing the pain experienced by the

patient during and between dressing changes. The literature on malignant wounds has

recognised the importance of the pain experience for patients with malignant wounds.

The discussion will be enlarged upon in the next section.

The Pain Experience Discussion in the literature recognised the complexity of pain and the individual nature

with which it was experienced by different people. It was recognised that the experience

of pain incorporated both discriminative-sensory (location of the pain and how it feels)

and affective (meaning, emotional, cognitive) dimensions which could be selectively

influenced by psychological and emotional factors (Strasser, Walker & Bruera 2005), as

well as sociocultural expectations around pain tolerance and expression (Freund &

McGuire 1999).


This multi-dimensional nature of the pain experience was recognised by the founder of

the modern hospice movement, Dame Cicely Saunders, when she described the

concept of ‘total pain’. She reminded HCP that psychosocialspiritual pain was as

important as physical pain and, accordingly, must be included in assessment and

management if care was to be effective. Palliative patients are already enduring

immense suffering and pain. If interventions focus on their physical pain and deny them

the ability to discuss and validate their psychosocial and spiritual pain, their existing

burden of suffering will be increased.

Whilst recognising the importance of the inter-relatedness of all dimensions of an

individual’s existence and the impact each may have on the experience of pain,

discussion in this section will focus on physical pain for which there was substantial

discussion in the literature. Discussion on the affective factors contributing to the pain

experience, for which less literature was available, will be included in the section on

psychosocial issues.

The only study on the incidence or severity of pain associated with malignant wounds

found that thirty eight percent of patients with malignant wounds (n=13) experienced

wound pain. This study, piloting the development of a staging system for malignant

wounds, did not enlarge upon the pain experience but stated that 23% (n=3) of the

cohort reported pain less than five on the visual analogue scale (VAS), while 15% (n=2)

reported greater than five on the VAS (Haisfield-Wolfe & Baxendale-Cox 1999).

The causes of physical pain in malignant wounds were noted to be varied. They

included: pressure from the tumour mass on other body structures; swelling as a


consequence of impaired capillary and lymphatic drainage; recurrent infections; damage

to nerves by the advancing tumour; chemical agents released by tumour cells that irritate

nerve endings; and wound care procedures (Grocott, Browne & Cowley 2005; Naylor

2005; Queen et al 2002).

Managing Pain Apart from the opioids and other analgesics typically administered systemically to relieve

cancer pain, a number of authors reported success in the use of topical opioids, both

during dressing changes and for analgesia in the intervening periods (Alvarez et al 2007;

Back & Finlay 1995; Bates-Jensen, Seaman & Early 2006; Grocott 2003; Naylor 2002a).

Naylor (2001) also recommended the use of complementary therapies as an adjunct in

reducing the total pain experience. They included: relaxation, massage, visualisation,

distraction and aromatherapy.

Bleeding Many authors noted the tendency for malignant wounds to manifest bleeding and clotting

irregularities as a result of the abnormal vasculature in the advancing tumour. Altered

peri-tumour angiogenesis and coagulopathy often resulted in tortuous thin-walled

vessels, dilated endothelial-lined lacunae and arterio-venous connections (Lotti et al

1998) that bled easily and resisted haemostasis. The possibility of life-threatening

haemorrhaging was also discussed (Carville 2005; Pereira & Phan 2004). For patients

in the latter group, Gagnon et al (1998) recommended that a strategic plan be developed

because the event can occur without warning and be very distressing for those involved.

Prevention of bleeding events was recommended through gentle cleansing and

protection of the fragile wound tissues. However, bleeding may still occur and strategies

to control it differed according to whether the bleeding was minor, moderate or severe.


The preceding discussion has provided an illustration of the physical impact of malignant

wounds upon patients and those caring for them. The ensuing section will enlarge upon

that experience by discussing the psychosocial issues and their inter-relatedness with

the physical symptoms. This inter-relatedness and its consequent mutuality of effect

heightens the significance of the gap in existing literature arising from the minimal

attention to psychosocial issues associated with malignant wounds (Goode 2004;

Grocott 2000b; Laverty 2003; Schiech 2002).

Psychosocial Issues In the articles that did mention psychosocial issues, it was usually a case of recognising

their existence before moving on to clinical management of the physical issues. For

example, the UK National Health Service produced a PRODIGY Guidance Clinical

Knowledge Summary on the management of malignant wounds in 2007. Although the

assessment section of the document mentioned the need to assess psychosocial issues,

the management section discussed physical aspects only and offered no guidance

whatsoever on how the identified psychosocial issues might be addressed (Goode

2004). The significance of this dearth of information has been highlighted by a number

of authors who recognised that it was often the psychological impact of disfiguring

disorders that was more severe than the physical impact (Hampton 2004; Laverty 2003;

Lewis-Jones 2000; Neil & Barrell 1998; Piff 2000; Sen, Ross & Rogers 2001). Enoch

and Price (2004), for example, found that, for the majority of patients with chronic

wounds, it was usually not the wound itself that caused them most concern but the

psychosocial issues associated with it and the consequent impact on quality of life. Yet,

there has been little investigation into the lived experience of malignant wounds or the

psychosocial issues associated with that experience.


There has been some investigation into the psychosocial issues associated with chronic

wounds, however, and it is reasonable to expect that some of these issues will also

apply to individuals with malignant wounds, if only because those wounds are also

chronic. For example, Neil and Munjas (2000) observed that HCP often concentrated on

the wound but did not acknowledge the profound life changes and day-to-day challenges

faced by those with chronic wounds. They conducted a phenomenological study into the

experience of living with a wound that does not heal and found that participants felt that

they had ‘become the wound’ as it became the focal point of their existence and ‘took

over their lives’ (p. 36). Because of the wound, the participants’ lives had been severely

disrupted and they had a different way of being-in-the-world than healthy, wound-free

people (Neil & Munjas 2000).

Similarly, Langemo (2000) investigated the lived experience of pressure ulcers and

found they had a profound impact upon the lives of participants. Although the

experiences of the eight participants demonstrated some similarities, each individual

assigned meaning to the experience in a unique way. Hence, the meaning of the

experience of living with a chronic wound often extended far beyond the wound itself and

could only be comprehended by listening to the experiences of patients.

In addition to the literature on chronic wounds, there was also literature recognising the

importance of psychosocial issues in cancer and other chronic diseases. Steele and

Fitch (2008) studied the experiences of women with gynaecological cancers. Of the top

ten issues raised by the women, the authors found that eight related to psychosocial

issues. Schou and Hewison (1999) studied the lived experience of cancer and found

what they referred to as a ‘lack of adequate consideration of the social aspects of the


cancer illness experience’ (p. 1). They discussed a huge number of aspects of the

cancer experience which were often addressed inadequately or not at all within the

biomedical realm. These aspects related mainly to the disruption of patients’ previous

existences and their attempts to adapt to the new mode of being-in-the-world. The

authors also highlighted the responses of HCP who frequently had little concept of the

experiences their patients were enduring and their need to be treated as a person-with-

an-illness, rather than as an illness. Because they had overlooked the importance of

psychosocial issues for patients, the HCP remained unaware of the capacity of these

issues to impact significantly on the lives of patients and those who cared for them.

Although the lack of attention to psychosocial issues was recognised in the literature,

there were some encouraging signs that the situation is improving. For example, the

Institute of Medicine in America released in October 2007 its report Cancer Care for the

Whole Patient: Meeting Psychosocial Health Needs which highlighted the importance of

psychosocial issues amongst cancer patients. Even so, the authors acknowledged that

attention to psychosocial health needs was the exception, rather than the rule, in

oncology services (Nelson 2007).

Although there were very few articles that addressed the patients’ experiences of living

with a malignant wound, the majority recognised the intensity of the experience and the

likelihood that psychosocial issues would be similarly intense. Murphy (2006), for

example, graphically illustrated the distressing nature of malignant wounds with the

following quote from Doyle (1980):

Can we begin to imagine what it must feel like for a patient to see part of his (sic) body rotting and to have to live with the offensive smell from it, see the reaction of his (sic) visitors (including doctors and nurses) and know that it signifies lingering death.


Perhaps unsurprisingly, two issues that were cited by researchers as affecting patients

with malignant wounds were altered body image (ABI) and self-perception. Both

concepts are important components of an individual’s being-in-the-world – the main topic

of discussion in Chapter Four. It will also be noted in Chapter Four that participants in

this study did not mention the terms ‘ABI’ and ‘self-perception’ specifically. However,

they were still included for discussion in the thesis because much of what participants

did say about their changed way of life could still be considered to be related to these

concepts. In addition, it was considered that their identification in the literature as

potential issues for patients with malignant wounds further justified their inclusion for

discussion.

Altered Body Image Kelly (2002) recognised the ability of malignant wounds to impact severely upon an

individual’s body image when she described them as ‘the ultimate insult to body image’

(p. 323). However, the topic of altered body image and malignant wounds has received

little attention in the literature. Accordingly, ensuing discussion will incorporate some of

the literature on ABI that could conceivably apply also to patients with malignant

wounds.

Existing literature has recognised the devastating impact that (ABI) and disfigurement

can have upon an individual and their sense of self (Harcourt & Rumsey 2006; Newell

1999; Price 2000; Rumsey, Clarke & Musa 2002). According to Turner (1996), chronic

body-altering diseases were recognised as alienating people, not only from their social

environment, but from themselves as well as they no longer recognised their previously

familiar bodies.


Although the subject of altered body image has received extensive coverage in the

literature, there has been very little research into body image and wounds of any

aetiology (Atkinson 2002). Henderson (2006) reviewed the theories of altered body

image available in existing literature but found none that were capable of addressing the

complexity of the issues typically associated with chronic wounds.

Body image is a complex perception that will be constructed differently by each

individual. It has been defined as ‘a mental representation of one’s own physical

appearance, based partly on self-observation and partly on the reactions of others’

(Colman 2006). Thus, it can be seen to result from a complex interplay between the

physical appearance of one’s body and sociocultural expectations about how it should

appear and function (Clarke & Griffin 2008). When any of these factors is disrupted,

tension results. Although this tension has massive potential for damage (Newell 1999),

Lewis-Jones (2000) noted that the true extent of that suffering was typically under-

estimated by all but the sufferer.

Discussion within the research literature has noted the interplay because the

psychosocial impact of ABI and an individual’s physical body. Our bodies are the

physical manifestation of our being-in-the-world. The skin of our bodies represents the

boundary between our inner selves and the external world with which we must interact

on a daily basis. Oftentimes, our selves are judged (at least initially) by the appearance

of this surface through which we are presented to the world. As a result, it is important

that this surface continues to comply with social expectations. There are a number of

social norms governing the appearance of our bodies and its skin boundary. They

include the expectation that the contents of our bodies remain ‘bounded’ within the body

and that our skin remains largely intact and visually presentable (Bird 2000a; Lazelle-Ali


2007; Lewis-Jones 2000; Neil & Barrell 1998). In the majority of cases, our expectations

are met; our bodies function normally, we take them for granted and barely notice them

(Atkinson 2002; Gadamer 1993; Hack 2003). When we have a chronic wound, however,

particularly one that is large, repulsive and malodorous, this boundary (and the social

norms associated with it) is breached. This contravention will be exacerbated in

instances where the normally internal contents of the body spill uncontrollably into the

external world through the breached boundary (Austin & Santamaria 2004; Douglas

1970; Kristeva 1982). This concept of ‘unboundedness’ will be discussed in greater

detail in the ensuing section on self-perception. For now, discussion will focus on the

changed appearance of people with chronic wounds and how they are affected by such

changes.

For those whose malignant wounds are highly visible, ABI may be even more intense

than for those whose wound can be disguised or concealed. Grocott (2003) and Newell

(1999) both acknowledged that malignant wounds on the head and neck are capable of

causing major distress to patients in contemporary society where the face is the prime

symbol of self. It is the part of the body most often exposed and the part that is most

often the normative focus of gaze in both private and public contexts (Coupland 2003).

As one’s visible interface with society becomes disfigured, it no longer accords with the

cultural norms that align goodness and human worth with attractiveness and intelligence.

Newell (1999) argued that the greatest fear for these individuals was not of the changed

body per se, but of the responses of others who often stare at those who are disfigured

or disabled. Such fears often lead to patients becoming increasingly housebound and

isolated as they avoid mixing with others (Clarke 1998) and their social competency

skills decline (Clarke & Cooper 2001).


Although not discussing a malignant wound, Christine Piff (2000) told a poignant story of

her own struggles to cope with disfigurement arising from facial cancer. She related the

changed self-image, the associated isolation and rejection and her unpreparedness for

and lack of understanding of what was happening. Just as distressing for her was the

lack of understanding displayed by loved ones and health professionals who expected

her to be ‘launched back into society’ (p. 64) and to carry on with her life as if nothing

had changed. Of course, this was impossible because things had changed.

Although Christine had lost so much (her looks, her identity, her ability to eat and drink

or communicate as she used to), what disturbed her most was the total lack of

understanding of her dilemmas displayed by any of the health professionals whom she

consulted. The doctors were delighted with their surgery and the brilliant prostheses

they had designed for her but, at no time, did anybody ask how she was feeling.

Nobody appeared to understand how her many losses were intensified every time

Christine was expected to relate to somebody with a ‘perfect face, complete and whole’

(Piff 2000, p. 64). She felt totally alone and coped by learning to ‘put on my brave face,

smile my crooked smile, wipe my runny nose and cry in my pillow on my own every

night’ (Piff 2000, p. 64-65).

Similarly, the distress associated with living with a malignant wound may be heightened

for female breast cancer patients or those with gynaecological or genital malignant

wounds. Not only do they have an unbounded wound constantly reminding them of the

progress of their terminal disease but their distress is compounded by the location of the

tumour in a very feminine, intimate and private part of their body (Bird 2000a; Dowsett

2002) as illustrated by the following quote:

‘…the visible marker of disease that literally eats through the body surface … the patient will be embarrassed by the smell of necrotic tissue, by soiling and oozing


from the tumour surface and by the indignity of having a sensitive part of the body destroyed … ‘ (Finlay 1999, cited in Grocott 1999).

The odour, discharge and ugliness of malignant wounds are the very antithesis of the

modern Western ideal of femininity which pictures women as clean and attractive with a

perfect, blemish-free body (Atkinson 2002; Bird 2000a; Bredin 1999; Clarke 1998; Cook

1999; Neil & Barrell 1998). Embarrassment and distress will be heightened even further

when this private (but no longer recognisably feminine) part of their body is constantly

exposed to the gaze and invasive treatment of a whole range of health care

professionals (Naylor 2002b; Wilkes, Boxer & White 2003; Cook 1999).

A study by Lund-Nielsen, Muller and Adamsen (2005a) reported on women’s

descriptions of how malodorous and oozing wounds triggered anxiety and led to

changed self-image, low self-esteem and feelings of unfemininity. This article will be

discussed in greater depth in an ensuing section reviewing patient perspectives in the

literature.

The importance of these issues for some patients is illustrated by their reluctance to

seek medical assistance because they are afraid of the prognosis, embarrassed by the

location of the wound or ashamed of the unboundedness of their bodies (Clark 1992;

Goode 2004; Lazelle-Ali 2007; Lo et al 2008; Mekrut-Barrows 2005; Neal 1991; Noblet

2008). Many such patients will only seek medical advice when the wound is advanced

(Collier 2000; Dowsett 2002; West 2007). For these patients, coping with the physical

problems unaided is less burdensome than facing their psychosocial anxieties. This

issue of delayed presentation will be discussed in greater detail in Chapter Four.


Self-Perception One’s perception of one’s self was recognised as contributing to ABI. It also has

received some discussion in the literature, including some authors who have discussed it

in relation to patients with malignant wounds. Prefacing the review of this literature will

be a brief discussion on the concept of self-perception and the influence of social norms

upon its construction.

As already noted, we expect our bodies and our skin to behave in accordance with

social norms, including the expectation that the contents of our bodies remain ‘bounded’

within the body (Austin & Santamaria 2004; Douglas 1970; Hampton 2004; Kristeva

1982; Lawton 1998) and that our skin remains intact and presentable. As long as we

continue to comply with these expectations, our self-perception remains secure. Should

we contravene these expectations, however, albeit through no fault of our own, we

become painfully aware of our contraventions. Consequent to this cognisance that our

previously reliable body is contravening the ubiquitous and omnipotent social norms

governing presentation and containment will be a changed, probably no longer secure,

self-perception.

Discussion in the previous section focused on visual presentation and how changes

affected body image. Discussion in this section will focus on bodily functions, typically

unboundedness, and how it affects self-perception. Bodies that spill their internal

contents uncontrollably into the external world have been described as ‘transgressive’

(Connolly 2001), ‘deviant’ (Turner 1996), or ‘unbounded’ (Lawton 1998). It was noted by

Douglas (1970) that the internal contents ‘by simply issuing forth have traversed the

boundary of the body’ (p. 145). It is as if the smells and fluids that should be contained

within these bodies have breached their own boundaries and are now invading the


boundaries and spaces of the people around them (Lawton 1998). As a result, they are

often perceived in terms of diminished human status or, even, as ‘abject’ – a word used

by Kristeva (1982) when referring to bodies with uncontrollable discharge. She

described ‘abject’ as perverse, as that which ‘disturbs identity, system, order. What

does not respect borders, positions, rules’ (Kristeva 1982, p. 4). Regardless of the

reason for the unboundedness, such people are not eligible for restoration to full human

status unless and until the unboundedness can be corrected (Lawton 1998). In the

meantime, the patient typically experiences an altered self-perception.

Lawton (1998, p. 129) observed that such altered self-perception frequently manifested

as a ‘total loss of self and social identity once an individual’s body became severely and

irreversibly unbounded’. Such patients often withdrew from their family and exhibited a

form of ‘social death’, ‘psychic death’ or ‘total withdrawal’ as they were unable to cope

with this new mode of being-in-the-world. It was almost as if the ‘self’ had dissociated

itself from the body and left an ‘empty shell’ (Lawton 1998, p. 130). She was led to

theorise that personhood was ‘fundamentally dependent upon the possession of a

physically bounded body’ (p. 131). If it was not possible to rebound the body, it was

frequently managed by containing it in a private room, the walls of which became the

new physical boundaries for those patients whose altered body and new mode of being-

in-the-world meant that they were no longer capable of corporeal self-containment.

Douglas (1970) is another author who has investigated the concepts of filth and

defilement in the context of the human body and social transgression. She spoke of the

fear of ‘dirt’ and impurity amongst ‘primitive religions’ whose followers believed that

horrible disasters would ‘overtake those who inadvertently cross some forbidden line or

develop some impure condition’ (p. 11). Because ‘all bodily emissions, even blood or


pus from a wound, are sources of impurity’ (Douglas 1970, p. 46), it was thus the case

that people with wounds were also dirty, impure and unwhole. Such people were

typically outcast because they did not conform to social expectations and, thus,

threatened the righteousness of society. Douglas refrained from offering a universal

definition of ‘dirt’ as the constituents of ‘dirt’ would be determined by those doing the

defining (Douglas 1970, p. 12). However, like the later work by Kristeva (1982), Douglas

(1970) did correlate dirt with disorder and the destruction of existing patterns governing

social communities. Consequently, its elimination can be perceived as restoring order to

the environment, as achieving conformity. Unfortunately, for those whose bodies do not

conform, their transgression will remain until such time as the contravention can be

resolved, order restored and conformity re-established (Douglas 1970; Kristeva 1982).

Although secularisation of contemporary Western society has overturned some of the

earlier religious beliefs, this has not been the case for dirt and impurity which have

merely been transferred to the fields of hygiene and aesthetics. The old definition of dirt

as ‘matter out of place’ endures, along with the revulsion for those who do not conform

(Douglas 1970, p. 48).

Clarke (1998) suggested that, instead of ostracising those unable to meet prevailing

social standards, society should be more tolerant and understand that the fault does not

lie with the sufferer. However, he also noted that such large scale change in social

attitudes is generally a long process. In the meantime, it is likely that those who cannot

comply with the social norms will continue to experience marginalisation by those who

judge others in accordance with their ability to comply with social expectations (Clarke

1998; Price 2000). On the other hand, those who are able to maintain a more person-

oriented and non-judgemental approach are more likely to be able to provide care that is


compassionate and holistic. These and other strategies for assisting patients to deal

with their psychosocial issues will be discussed in the next section.

Addressing Psychosocial Issues As a direct result of psychosocial issues receiving only scant attention in the malignant

wound literature, there was a corresponding lack of information on how they might be

addressed. One intervention suggested by Lund-Nielsen, Muller and Adamsen (2005a)

for patients with malignant wounds was simply listening to the patient and allowing them

to express their feelings about their illness and its effects on their lives. As there was

little other discussion on addressing the psychosocial issues of patients with malignant

wounds, the ensuing discussion will rely on interventions recommended for patients with

chronic disorders.

Knowing that their story has been heard and acknowledged can be very helpful in

enabling patients to resolve their psychosocial issues (Bredin 1999; Hack 2003; McGrath

2001). Many people undergoing the cancer experience also find strength in talking with

others going through similar experiences and through using their own experience to

assist others (Wenzel & Steeves 2008). One of the main benefits of these sometimes

informal support groups was the ‘normalisation’ of what patients and their families were

going through. According to McGrath (2001), the provision of a safe space where they

could discuss their experience with somebody who had already ‘trod the same path’ was

perceived as a meaningful and valuable contribution to their ability to cope.

Providing people with permission to discuss certain subjects, particularly those of an

intimate nature, is an important step in facilitating these discussions. Oftentimes,

patients have matters they wish to discuss but are waiting for cues from HCP to indicate


that such topics are important and may be discussed. If these cues do not arise,

questions may remain unaddressed because patients have formed the opinion that HCP

do not think they are appropriate topics for discussion.

Even if psychosocial issues are raised by patients, however, they still may be

circumvented by HCP who are reluctant to deal with them or simply do not know how

best to address them (Fairbairn 1994; Lund-Nielsen, Muller & Adamsen 2005a). The

tendency amongst nurses, for example, to be more comfortable when providing the

traditional physical aspects of nursing care than in providing psychosocial support has

been noted by a large number of authors (see, for example: Atkinson 2002; Clarke &

Cooper 2001; Fulton 1996; Hollinworth & Hawkins 2002; Neil & Munjas 2000; Stewart

2003; Wilkes 2001; Young 2005). Wilkes (1998) supported these findings and

suggested that nurses appeared to have been socialised into the philosophy of having to

perform physical tasks to be considered effective. This phenomenon was illustrated by a

student nurse, participating in an investigation of nursing and the biopsychosocial model,

when she said: ‘I’d like to find time for odd things, like patients’ psychological well-being’

(Fulton 1996, p. 39-40). The researcher suggested that this student (and others) was

being socialised into a not uncommon hospital ward philosophy where physical tasks

were given higher priority than those in the psychosocial domain.

Contrary to this belief, listening to the patient and validating her/his experiences and

worth as a human being are an essential part of the caring work provided by nurses

(Cook 1999; Hollinworth & Hawkins 2002; Wilkes 1998). They are also an essential part

of the provision of psychosocial support. Time and again in the literature reviewed for

this study were excerpts from participants’ interviews expressing appreciation for the

ability to just speak to health care professionals and know they had been heard. To


listen to somebody and validate their worth as a human being is not difficult and requires

no special training but this simple intervention can have potent effects on patient

outcomes. In most cases, the narrator is not seeking advice or answers to their

problems, just an opportunity to be heard – and validated. Unfortunately, the benefits of

these ‘unquantifiable’ interventions are often not recognised by management simply

because of their incommensurability (Wilkes, Boxer & White 2003).

Participants in Hollinworth and Hawkins’ 2002 study of nurses caring for patients with

chronic wounds found that ‘knowing the patient’ enabled them to better understand the

meaning for the patient of having that wound. This understanding enabled the nurses to

develop treatment plans that recognised the individuality of each patient and were more

likely to record successful outcomes. The authors suggested that patients’ greatest

problems were related to the inability of nurses to hear what the patients were saying

within the context of their lives.

In a healthcare environment where some authors have suggested that the primacy of

biomedicine is still evident (Forster & Stevenson 1996; Martinez 2002), it was

encouraging to note the attempts by some organisations to promote the importance of

listening to patients as they narrated their experiences. For example, Macmillan Cancer

Support in the United Kingdom recently conducted the Macmillan Listening Study which

focused on patients’ voices to obtain information on their views towards cancer research

and the priorities for research (Wright et al 2006). The UK Department of Health (2004,

cited in Jones 2008) has also published a document recognising the importance of

patient perspectives on chronic illness experiences. Similarly, the consensus document

on wound exudate released by the World Union of Wound Healing Societies reinforced

the need to listen to the concerns of the patient. The importance of listening to patients’


voices was also one of the aspects of palliative care highlighted by the founder of the

modern hospice movement, Dame Cicely Saunders (Bradburn & Maher 2005). These

authors supported the notion that, despite its lack of technology, the simple act of

listening to another human being may be a potent intervention in reducing the intensity

of their psychosocial issues.

The remainder of this chapter will discuss the few articles addressing the lived

experience and psychosocial issues of patients with malignant wounds. It will also

discuss the limited literature presented from the perspectives of the nurses who care for

them.

Patient Perspectives in the Literature Although a number of articles mentioned psychosocial issues associated with the lived

experience of malignant wounds, only three articles were found that dealt with them in

any depth. Lund-Nielsen, Muller and Adamsen (2005a) used semi-structured interviews

to learn how malignant breast wounds affected the femininity, sexuality and daily life of a

cohort of twelve women. The authors did not provide the interview question guide but it

was noted that the majority of questions allowed for only closed answers. Their study

was conducted in conjunction with the evaluation of a four-week intervention program,

comprising evidence-based wound care and psychosocial support. The psychosocial

support took the form of a weekly one hour conversation with a clinical nurse advisor in

conjunction with the dressing change. The focus of the dialogue was on the influence of

the malignant wound upon the women’s daily lives, their self-image, sexuality, femininity,

choice of attire and relationships.


The women in the study described how malodorous and oozing wounds triggered

anxiety about leakage and prevented them from wearing feminine attire, as well as

causing them to suppress their need for physical/sexual or social interaction. They

expressed feelings of powerlessness because they felt as if their bodies were rotting and

there was nothing they could do about it. Because of their changed self-image, low self-

esteem, and feelings of unfemininity, most of the women shunned interaction, and

remained at home where they felt safe from the unexpected (and unacceptable)

activities of their changed bodies.

The enhanced focus on wound care procedures in the intervention enabled the women

to feel more feminine and to not be constantly reminded of the presence of the wound.

They were also less anxious about the possibility of exudate leakage or of malodour

becoming detectable which enabled them to resume social relationships. The

participants also expressed their appreciation for the opportunity to discuss their

concerns with the clinical nurse advisor which rendered them less confronting (Lund-

Nielsen, Muller & Adamsen 2005a).

Piggin and Jones (2007) were the first authors to conduct a study aimed specifically at

illuminating the lived experience of malignant wounds from the perspective of the

patient. They were concerned that the current understanding of malignant wounds was

predicated on the perspectives of health care professionals rather than patients and that

there was little acknowledgement of the existential meaning for patients living with a

malignant wound. Within a phenomenological methodology, the authors used

unstructured interviews to collect stories of the experiences of five female breast cancer

patients with malignant wounds. Their research question was: ‘What is the experience


of living with a malignant fungating wound?’ After analysing the data, the authors

extracted the following themes:

i) Representing the worst part of the patient’s cancer; ii) Living within a body that cannot be trusted; iii) A changing relationship with the patient’s family and friends; and iv) A loss of identity while continuously striving to be normal, yet feeling different.

The fact that all the themes related to psychosocial issues highlighted the inter-

relatedness of the physical and psychosocial domains of the participants. Even though

the wound was causing changes to their physical bodies, the need for those bodies to

remain viable meant that the deterioration associated with the malignant wound signified

an existential threat. In line with the findings of studies into disfigurement and chronic

body-altering disorders, altered body image was a major issue for participants (Piggin &

Jones 2007). The authors also highlighted the huge disparity between the patient’s

subjective experience and the HCP’s objective assessment which often meant that the

individual meaning ascribed by the patient was not comprehended by the HCP.

Accordingly, rather than focusing on objective measurements, they encouraged HCP to

develop a heightened awareness of the impact of the wound for the patient on day-to-

day living, identity and purpose (Piggin & Jones 2007).

It is prudent to evaluate the contents of research reports. In this instance, the authors

considered their small sample size to be a limitation as it did not allow generalisation.

However, generalisation is not a typical criterion of qualitative research. It also would

have been helpful if more verbatim quotes from participants had been included to add

credibility to the themes extracted by the researchers. Notwithstanding these criticisms,

it is considered that some of the findings outlined in the article provide useful insight into


the experience of living with a malignant wound. They are discussed in greater detail in

Chapter Four of this thesis.

Lo et al (2008) conducted a study to ‘explore the experience of cancer patients living

with a malignant fungating wounds (sic)’ (p. 2699). They conducted ten in-depth

interviews with patients (six female, four male) in Taiwan. Although the interviews were

described as semi-structured, the question guide provided by the authors contained

broad, open-ended questions designed to elicit the experience from the perspective of

patients. The data were analysed thematically within a grounded theory methodology.

The authors acknowledged that grounded theory is typically adopted when researchers

are attempting to develop a theory. However, they claimed that it could also be used as

a pragmatic tool for studies investigating and describing social situations (Lo et al 2008).

A major finding of the study was the importance of including a wound specialist on the

multi disciplinary oncology team. The following five themes were also extracted:

i) Declining physical wellbeing; ii) Wound related stigma; iii) Need for expert help; iv) Strategies in wound management; and v) Living positively with the wound.

Similar to Piggin and Jones (2007), the themes extracted by Lo et al (2008) related

predominantly to psychosocial issues as participants relegated the importance of

physical issues in their hierarchy of concerns.

Other findings from Lo et al (2008) included social isolation because of the malodour and

the stigmatisation associated with having a cancerous wound. Unfortunately, the


stigmatisation resulted in patients attempting to self-manage their wound and not

seeking medical attention until the wound was well advanced. Participants also

described how the lack of information from HCP caused anxiety and affected their ability

to understand what was happening to their bodies. Following the intervention of the

wound care specialist, they had expressed more satisfaction with wound care

procedures and a greater understanding of the wound and its likely progression.

According to the authors, access to sensitive, knowledgeable and skilled care reduced

patients’ anxiety and enabled them to view the future more positively.

Although Grocott’s (1999) thesis focused on the development of a methodology for

evaluating the performance of wound dressings, she also included some discussion on

the experiences of patients living with malignant wounds. She found that exudate

management was the dominant issue for patients and described as pivotal the

relationship ‘between exudate and the other wound management problems, including

the psychosocial aspects’ (Grocott 1999, p. i). As a result, she stated that effective

wound dressings were an essential component of the care provided to patients if the

impact caused by soiling was to be reduced. Overall, Grocott found that ‘The impact on

the individual of a fungating wound was explained in terms of the stigma attached to

public disability and a general revulsion in society for uncontrolled body fluids’ (1999, p.

i). Whilst recognising that the experience would be unique for each patient with a

malignant wound, she also stated that it would be characterised by ‘extreme physical

and psychological distress’ (Grocott 1999, p. 9). Despite the intensity of this distress,

however, Grocott noted the absence of individual patient experiences in the literature.

Outnumbering the articles on the lived experience of malignant wounds were those

recognising the scarcity of this information and calling for research into the experience


so that it might be better understood (Goode 2004; Grocott 1999; Laverty 2003). Piggin

(2003) suggested that phenomenological research would be beneficial in illuminating the

nature and meaning of living with a malignant wound, while Schulz, Triska and Tonkin

(2002) suggested that understanding the intensity and impact of the symptoms on the

lives of patients would be an extremely valuable addition to existing literature. Although

Wilkes, Boxer and White (2003) explored the stories of nurses caring for patients with

malignant wounds, they acknowledged also the need for patients’ stories to be told.

Caregiver Perspectives in the Literature Patients with malignant wounds were not the only ones whose lived experiences have

been overlooked. Even though the family is increasingly being recognised as the unit of

care in palliative care (Addington-Hall 2002; McGrath 2001), the lived experiences of

those caring for patients with malignant wounds are yet to be investigated. Beyond

noting that families of patients with malignant wounds also experienced extreme physical

and psychological distress, there has been little mention of the effect of malignant

wounds on families and caregivers (Grocott 1999; Lo, Hsu & Hu 2007). Young (2005)

did suggest that the appearance of a malignant wound may be more distressing for

caregivers than the patients who are usually more distressed by the meaning that the

wound has for them and its impact upon their lives. However, prior to the current study,

there has been no attempt to investigate from the perspective of family/unpaid

caregivers the experience of caring for a loved one who is dying while simultaneously

trying to cope with the associated smell and the constantly soiled clothing, bedlinen and

sodden and smelly dressings. Piggin and Jones (2007) recognised this deficiency when

they suggested that phenomenological studies exploring the lived experiences of family

and lay caregivers might facilitate the provision of supportive care of patients with

malignant wounds.


Some elements of the caregiving role in general have already been well-researched and

are discussed in greater detail in Chapter Four of this thesis. They included: the high

levels of ‘burnout’ amongst caregivers; their higher levels of morbidity when compared

with non-caregiving populations; and the propensity for their suffering and stress to be

even greater than the person for whom they are caring (Dumont et al 2006; Goldstein et

al 2004; Grande et al 2009; Kinsella et al 2000; Salmon et al 2005; Siefert et al 2008;

Walker 2002). It has also been noted that most patients are embedded within a familial

web upon which they depended for psychosocial and physical support and that the care

provided by lay caregivers far exceeded that provided by hospitals or HCP. Accordingly,

as suggested by Solomon (2008), the importance of also providing support for lay

caregivers is self-evident if they are to continue providing support for the patient.

Nursing Perspectives in the Literature Within the literature were a small number of articles that mentioned the impact on

nursing staff of managing patients with malignant wounds. Palsson, Isovaara and

Norberg (1995) studied the experiences of nurses treating cancer patients at home. It

was significant to note that the only specific cancer condition identified as ‘especially

trying’ was malignant wounds (p. 68). Even so, apart from identifying that the

management of malignant wounds was challenging for nurses, the majority of articles

did not describe the experience in detail (Lloyd 2008; West 2007; Young 1999).

Wilkes, Boxer and White (2003) were the only authors who had conducted an

investigation specifically into the lived experiences of nurses caring for patients with

malignant wounds. However, even though this study did provide some important insight

into the experience of caring for a patient with a malignant wound, much of the


information presented related to nurses’ perceptions of patients’ experiences, rather than

nurses’ experiences per se. Data were collected in semi-structured telephone interviews

and analysed via content analysis and coding to extract themes that illustrated the

experience. The two major themes were:

i) Supporting and maintaining the patient as a person; and ii) Personal challenge to caring.

The authors reported that nurses described malignant wounds as being difficult to

manage, frequently personally distressing and often leading to feelings of guilt or

inadequacy if they had been unable to manage the wound in what they considered to be

a satisfactory manner. They were particularly affected when caring for somebody of

their own, or their parent’s, age or when children were involved. Nurses identified

patient isolation and altered body image as significant challenges to their provision of

care. On the whole, nurses strove to maintain the patient’s dignity and not lose sight of

the person they were treating, even though the wound appeared to have maliciously and

overwhelmingly intruded upon the lives of all those involved with its management.

Typically, the nurses dealt with their own psychosocial issues through peer support,

debriefing and counselling (Wilkes, Boxer & White 2003).

Wilkes, Boxer and White (2003) also found that, because of the nature of the work,

much of the caring work of nurses looking after patients with malignant wounds

remained hidden. This hiddenness prevented nurses from discussing their own

reactions and feelings publicly and, at times, also prevented them from discussing

patients’ concerns with them. The authors questioned whether this hiddenness was in

the best interest of either nurses or patients and suggested that it was detrimental to the


nurse-patient relationship. They suggested that revealing the emotional impact on

nurses would enable them to understand the patient experience more fully. The concept

of the hidden work of nursing is discussed in greater detail in Chapter Six.

Another concept raised by Wilkes, Boxer and White (2003), when discussing the care of

patients with malignant wounds, was that of emotional labour. Emotional labour is a

term coined by Hochschild in 1983 when she studied the emotion work of flight

attendants who were required to display certain emotional states to passengers, even if

those states were not authentic. At the same time, they were required to suppress what

they were genuinely feeling. Hochschild (1983) discussed the possible consequences of

individuals being required to perform emotional labour over extended periods of time,

while a study conducted by Gross and Levenson in 1997 investigated the possible

physiological consequences of suppressed emotions. These consequences will be

discussed in greater detail in Chapter Four. Later theorists (Gray 2009a, 2009b; James

1989, 1992; Smith 1992) applied the concept of emotional labour to nursing, as nurses

are also required to display inauthentic emotions while simultaneously repressing their

authentic emotions. Although theorists acknowledged there were differences between

the two occupations, they also highlighted a number of similarities and supported the

findings of Hochschild (1983), particularly with regard to the largely unacknowledged

consequences of emotional labour. A number of additional consequences pertaining

specifically to nurses were subsequently identified by Carmack (1997). These

consequences will be reviewed in Chapter Four when the concept of emotional labour is

discussed in more detail.


Models of Illness Throughout the literature review process, it became evident that malignant wounds had

the propensity to influence all domains of an individual’s existence. As a result,

consideration was also given to models that would support explanation of the multi-

directional, multi-dimensional nature of factors occurring within and across the domains

of human existence.

Biomedical Model ‘Biomedicine’ is the name given to medical care that focuses on symptoms and

treatments within the biological (physical) domain, to the almost total exclusion of factors

in other domains. According to some theorists, the biomedical model has been the

dominant medical model since the mid- to late eighteenth century (Engel 1977; Foucault

1973). It is beyond the scope of this thesis to consider the circumstances that enabled

biomedicine to achieve its dominance. However, a brief but enlightening discussion is

provided by Taylor (2005, pp. 889-890). More in-depth discussion is provided by

Foucault (1973) who argued that the biomedical ‘gaze’ had become so powerful during

the mid- to late eighteenth century that most, if not all, alternative conceptualisations of

health and illness were discredited and/or overlooked in favour of the dominant

biomedical model.

Despite its dominance, biomedicine was not without its detractors, most of whom

criticised it for its narrow focus on factors within just one domain of human existence.

George Engel was one such critic. Engel had become disenchanted with the biomedical

model that typically reduced a malfunctioning human to her/his symptoms of disorder.

He believed that this reductionism rendered biomedicine as inadequate to explain or

treat the complex array of malfunctions that could occur either singly or multiply to the

complex human organism. Although biomedicine had undoubtedly made many


advances in combating disease, Engel (1977) pointed out that there were even more

potential malfunctions in the human organism that biomedicine had totally overlooked

because its adherents only attended to those symptoms occurring in the biological

(physical) domain. He also suggested that the biomedical tendency to treat everything

in the context of the biological domain had resulted in instances where biomedicine had

caused even more harm to patients than had their original disorder.

Engel (1977) described biomedicine as a cultural imperative that, because it had

achieved the status of dogma, became resistant to change and its shortcomings were

easily overlooked. In a dogmatic milieu, the model becomes inflexible, and the variables

(symptoms) are moulded to fit the model. Those variables that cannot be moulded are

excluded (reduced) (Engel 1977). However, as Engel (1977, p. 134) stated:

‘Reductionism is particularly harmful when it neglects the impact of nonbiological

circumstances upon biological processes’.

Although not outlining them as explicitly as Engel, Parsons had drawn similar

conclusions in 1951 when he conceptualised health as a necessary component of any

social system, thus highlighting the interrelatedness of individuals and the social milieu

in which they lived and interacted (Cooper, Stevenson & Hale 1996b, p. 7). Later

theorists agreed with both Engel and Parsons. Stroebe (2000, p. 8) claimed that most

illnesses are ‘the result of an interaction of social, psychological and biological events’.

Similarly, Sadler and Hulgus (1990, p. 185) noted: ‘All dimensions of the clinical realm

are interdependent and reciprocal’. According to Engel (1977), what biomedicalists

treating only one domain did not realise was that the other domains were probably still

influencing the treated domain, thus possibly negating the HCPs’ efforts.


Biopsychosocial (BPS) Model Having criticised the biomedical model so stridently, Engel (1977) outlined what a new

holistic medical model might look like. He noted that inclusion of psychosocial and

cultural, as well as physical, factors was an indispensable feature of a new model.

Engel’s new model – the biopsychosocial (BPS) model – was based on systems theory

which acknowledged that each system affects, and is affected by, the other systems in

the model (Campbell & Rohrbaugh 2006). These multiple and reciprocal interactions

have been discussed by several authors (Forster & Stevenson 1996; Sarafino 2006),

including Cooper, Stevenson and Hale (1996b, p. 5) who stated that each of the

components ‘exist complementarily, each one affecting and being affected by change

and variation in another’. They also noted that the BPS model ‘moved away from the

earlier, dominant biomedical model towards a much broader understanding that

endorsed a multi-level account of health and illness’ (Cooper, Stevenson & Hale 1996b,

p. 3). Depending upon the circumstances (in health or illness), however, one domain

might be more prominent; this prominence waxing and waning as circumstances

change. Regardless of which domain was prominent, it would still continue to affect, and

be affected by, the other domains (Fulton 1996). Adding to the complexity was the

recognition that there are no clear distinctions between the boundaries of each domain;

the boundaries are blurred and will remain so as the domains continue to influence each

other (Engel 1977).

Thus, because it facilitated the physician entering the patient’s world and gaining a

deeper understanding of the impact of the illness upon the individual, the BPS model

was recognised by Sadler and Hulgus (1990, p. 186) as a ‘more comprehensive system

of medical practice than the biology-dominated biomedical model’. Like all large scale

changes, however, particularly those aimed at unseating entrenched ideologies,


acceptance of the BPS model has been steady but not rapid. Arising from these new

conceptualisations of health and illness (as well as concomitant sociocultural

dynamism), however, some theorists are questioning whether even the BPS model is

adequate. For example, Martinez (2002) stated, ‘As these new considerations eclipse

some of the more traditional and mechanistic goals of medicine and psychiatry, the

health professions are seeking frameworks more inclusive and robust even than Engel’s

with which to conceptualize their goals and try to reach them’ (p. 128). One of the

alternative frameworks gaining increasing and widespread support is the

biopsychosocialspiritual (BPS/S) model, which expands upon the BPS model through

recognition of the spiritual domain (Brady et al 1999; Campbell & Rohrbaugh 2006;

Cooper, Stevenson & Hale 1996b; Hiatt 1986; Martinez 2002; Winiarski 1997b).

Biopsychosocialspiritual (BPS/S) Model Hiatt (1986) was the first to recommend the inclusion of the spiritual domain which he

described as ‘that part of the person concerned with meaning, truth, purpose, or reality –

the ultimate significance of things’ (Hiatt 1986, p. 737). Because of its significance to

individuals, he claimed that spirituality was a principal determinant of the health-related

attitudes of both patient and HCP. Similarly, Brady et al (1999) found that spirituality

was as important as physical wellbeing when measuring quality of life. Importantly, their

study (and others) demonstrated the ability of factors in the spiritual domain to influence

(and be influenced by) factors in the other domains. As a result, they claimed that

spiritual wellbeing ‘would enable people to endure a significant symptom load and still

enjoy life’ (Brady et al 1999, p. 424). Like Hiatt (1986) who recognised spirituality as a

determinant of health-related attitudes, the findings of Brady et al (1999) led them to

describe the spiritual domain as a ‘potentially important clinical target’ (p. 417) that

should be included in any model of health and illness.


As stated by Winiarski (1997b), every aspect of life has biomedical, psychological, social

and spiritual components that influence each other. What is important to recognise is

that the domains interact mutually and multiply (Brady et al 1999; Campbell &

Rohrbaugh 2006; Cooper, Stevenson & Hale 1996a, 1996b; Engel 1977; Forster &

Stevenson 1996; Fulton 1996; Hiatt 1986; Martinez 2002; Sadler & Hulgus 1990;

Sarafino 2006; Winiarski 1997a). What is also important to remember is that no one

person can ever be aware of all of the changes that are occurring in all of the domains

all of the time (Forster & Stevenson 1996).

Thus, in view of the complexity of the human organism and the complexity of the

sociocultural milieu in which each one lives, it is not likely that simple models will be

sufficient to conceptualise and explain health and illness, particularly when a disorder as

complex as a malignant wound is added to the equation. The preceding discussion has

reviewed the multi-directional, multi-level, multi-dimensional nature of health and illness.

In doing so, it has highlighted the need to take account of events in each domain of an

individual’s life and how those events are likely to impact reciprocally upon the other

domains. This level of complexity cannot be accommodated within a simple model. In

short, it has been recognised within the literature that management of any illness

episode is best achieved through a holistic model.

Conclusion In summary, the review of the literature has demonstrated that there has been little

formal research into the clinical management of people with malignant wounds and even

less into the psychosocial issues. Malignant wounds are often devastating for patients

and family and personally distressing for nurses. Because little is known about


psychosocial issues, there is a corresponding lack of suggestions on how they might be

addressed. Yet, as discussed within the literature, because illness typically impacts

upon all domains of an individual, treatment is best provided through a holistic approach.

However, in the case of malignant wounds, it will be difficult to provide holistic treatment

until such time as there is a greater understanding of the effects of malignant wounds

across all domains, not just the physical which has been the focus of the literature to

date. This study contributes to filling the gap in our current knowledge base by

illuminating the experience from the perspectives of patients, caregivers and nurses and

offering some suggestions for addressing the identified issues. The methodology used

to investigate these issues is outlined in the following chapter.


Chapter Two: Methodology

This chapter will discuss the methodological framework within which the project was

conducted. Discussion will occur in two distinct phases. The first phase will discuss the

strategies planned to achieve the objectives of this project, while the second will discuss

the operationalisation of those strategies and their consequent results.

Included in this first (strategic) phase of the chapter will be a preliminary discussion on

the characteristics of qualitative research and the major assumptions underlying this

project. Following will be a discussion of the methodology and methods selected for

data collection and analysis. Phenomenology was selected as the methodology for this

project because it is acknowledged as an ideal vehicle for investigating lived

experiences. A discussion on its development and major concepts will be presented.

The selection of in-depth (conversational) interviews as the data collection method for

this project was influenced by a number of factors that will be discussed in this chapter.

Primary amongst these reasons was the project’s aim of understanding a complex

human experience and the recognition that some of the patients recruited for this study

could be considered to be vulnerable. Accordingly, a review was conducted of the

literature on the ethics of researching vulnerable populations, the results of which will

also be presented. These and other ethical requirements complied with by this project

will mark the commencement of the second phase of this chapter.

The second (implementation) phase of this chapter will also discuss the sampling

procedures adopted and how the interviews were conducted. Its major focus, however,

will be the analysis of the data and the themes that arose from that analysis, each of

which will form a separate discussion chapter in this thesis.


Qualitative Research Paradigm Paradigms are the frameworks employed by researchers to guide their inquiries (Glesne

1999). They are usually either qualitative or quantitative, although some researchers

combine aspects of both paradigms in mixed methods research (Creswell 2003). The

qualitative paradigm is generally selected by researchers whose objective is to gain an

understanding and description of certain phenomena from within their natural settings

(Denzin & Lincoln 2003a). According to Schwandt (2003), it is particularly suitable for

gaining understanding of the phenomena that contribute to the richness and complexity

that is human life. As the aim of the current study was to understand a complex human

experience, the qualitative paradigm was considered to be the most appropriate.

Justification for this decision and presentation of the major assumptions underlying this

project will be outlined in the ensuing discussion.

Qualitative researchers recognise that every human is a complicated individual, living a

complicated life in a complicated, unpredictable and dynamic world in which a multitude

of phenomena may be experienced at any one time and from within which their own

personal and unique worldview is created (Raggatt 2006). Referred to as ‘tortoise shells’

that we carry with us throughout life (Riessman 2008, p. 139), these worldviews are the

frameworks within which phenomena are interpreted to arrive at a meaning that is both

unique and personal (Cagnetta & Cicognani 1999; Czarniawska 2007). The only

worldview that an individual will know fully will be their own and they will be the only one

able to do so. Qualitative researchers acknowledge the existence of individual

worldviews and their impact upon the interpretive and meaning-making processes of

humans. As a result, when they conduct research with humans, they do so within the

natural setting of the researched to ensure that the phenomenon of interest is studied

within an environment similar to the one in which it occurred and to facilitate greater


insight into the worldview of the participant. In recognition of this inherent uniqueness,

qualitative researchers accept that there can be no ‘universal’ humans. As a result, they

make only limited claims of universality or generalisability (Denzin & Lincoln 2003a).

Because the interpretations reached by an individual will be unique to that individual,

qualitative researchers accept that there is no one ‘true’ or ‘correct’ interpretation of any

phenomena (Denzin & Lincoln 2003a). Instead, they acknowledge that there will be as

many interpretations of a phenomenon as there are people interpreting it. As a result,

rather than seeking the truth of any matter, qualitative researchers prefer the concepts of

correspondence or verisimilitude (Bruner 1986). Verisimilitude refers to something that

appears to be true. According to Bruner (1986), it is a useful concept in instances where

it is not possible to prove the truth of a phenomenon.

Qualitative researchers recognise the constructed nature of human knowledge and that

such constructions are unavoidably influenced by the individual, their worldview and the

sociocultural milieu in which they live (Denzin & Lincoln 2003a; Esterberg 2002). They

view all human knowledge as partial, contextual, perspectival and constantly in a state of

flux as new information is commingled with existing information. As such, no one is able

to perceive anything from a presuppositionless and totally objective stance (Bernstein

2002; Johnson 2000; Nagel 1986; Popper 1957; Schmidt 2006; Taylor 2002; Zaner

1970).

Having accepted that total objectivity is not possible and that researchers will inevitably

influence the research they are conducting, it is encumbent upon them to identify as

many prejudices as possible and recognise their influence on the research (Andrews


2007; Craig & Huber 2007; Huber & Pinnegar 2007; Warnke 2002). Acknowledging the

stance of the researcher and reflexivity are both useful modalities in such endeavours.

Researcher Stance For the purpose of this project, researcher stance and reflexivity are treated as two

separate, but interlinked, entities. Researcher stance refers to the existing beliefs and

understandings that the researcher brought to the study. Reflexivity refers to the

researcher’s acknowledgement of how these beliefs and understandings influenced the

study, as well as identifying other pre-understandings that became apparent during the

course of the study.

The researcher’s pre-identified biases and preconceptions arose from her own

experience of nursing a patient with a malignant wound in 2006. Bill had a malignant

wound in his groin arising from a melanoma. As it was the first time the researcher had

encountered a malignant wound, she did not have any preconceptions at that stage.

Bill’s wound was extensive, malodorous and exuding to the extent that it required

dressing three to four times every day. Bill and his wife (Lucy, who subsequently

participated in this study as a caregiver) did not cope well with the wound, but neither did

the staff at the regional Queensland hospital where he was an inpatient. Unfortunately,

because of the infrequency with which malignant wounds were seen at the hospital, the

majority of nursing and medical staff were not well-versed in their care. Having

searched the literature for some guidance on managing Bill’s care, this researcher

became acutely aware of the lack of robust evidence informing the management of

patients with malignant wounds, particularly psychosocial issues. The difficulties

encountered, the poignancy of the case and the lack of literature and guidance prompted

the researcher to investigate the lived experience of malignant wounds.


As a result of this experience, the researcher became aware of her assumption that

malignant wounds are always distressing and difficult to manage, that malodour is often

an issue and that the impact upon lay caregivers may be almost as intense as it is for

patients. The researcher acknowledged that she was particularly affected by the

distress of the patient and his unwillingness to accept that he was dying which

problematised many of the conversations around his treatment and prognosis. She also

formed the perception that HCP tended to concentrate on the wound itself because

acknowledging the patient as a person might entail dealing with psychosocial issues

which would be uncomfortable for the HCP and were generally beyond the primarily

scientific scope within which care was provided. The subsequent review of the

malignant wound literature and discussions with other nurses affirmed most of these

preconceptions. One notable exception was Bill’s reluctance to accept his prognosis.

Other major biases were concerns about contemporary Western biomedicine which was

perceived as having transformed care into a marketable commodity and setting higher

priorities on economic and bureaucratic outcomes than on patient outcomes; on

technology than on compassion; on rapid diagnosis and throughput; on standardised

and categorised treatments than on treatments individualised for the specific patient

circumstances. In an environment more concerned with economic outcomes than

human outcomes, the researcher perceived that opportunities for patient-centred

treatment plans were markedly reduced.

Finally, a bias against inequitable and uninformed sociocultural norms was also

identified, particularly the norms that hold ill people responsible for their illness and

expect them to recover in a timely fashion. If they fail to do so, they are typically labelled


as malingerers or somehow personally defective, even though the disorder may be

beyond their control. Such people are generally suffering already; to stigmatise them

further through uninformed social constructs serves only to increase that suffering.

Reflexivity Reflexivity is recognised for its usefulness in identifying biases and the influence of pre-

understandings (Ahern 1999; Finlay 2002; Malacrida 2007; Watt 2007). It was adopted

throughout the course of this project as the researcher attempted to ‘step back’ from her

usual way of experiencing the world in order to identify and understand the factors that

influenced what she heard and how she interpreted it when generating insight and

reaching conclusions. The importance of reflexivity was recognised by Lupton (1994, p.

13) who described it as ‘almost mandatory’ in qualitative research.

As part of the process of achieving reflexivity, the following questions (suggested by

Esterberg 2002) were addressed on an ongoing basis throughout the project:

a) What are the researcher’s biases and preconceptions? b) What are the researcher’s investments in particular issues and in particular ways

of seeing the world? c) What does the researcher already think she knows and does she know it? In answering these questions, the researcher identified a number of pre-understandings

and beliefs in addition to those she had already acknowledged prior to commencing the

study (see previous section on ‘researcher stance’). She acknowledged that her style as

a nurse was to be more emotionally oriented, than task oriented. Even so, she made a

conscious effort not to judge nurses who appeared to be task oriented, particularly as

the researcher had not personally experienced the stories that the nurses were relating,

and was aware that she could not be sure of her reactions unless she was in a similar

position. For example, the researcher disagreed strongly with the attempts of some of


the nurses to force their patients to follow pre-determined dying trajectories. However,

she took great care not to let that disagreement show during the interviews or when

writing up the results. To ensure she maintained that neutrality as much as possible, the

researcher continually reviewed her writing to check that it was non-judgemental and, in

the case of any contentious issues, supported by the literature.

Similarly, the researcher refrained from judging those nurses who openly stated that they

concentrated on the wound rather than the patient because they believed it made them

better able to perform their job and was less likely to result in them becoming

emotionally attached to the patient. (This task was made easier for the researcher when

she realised that even those nurses who professed a task orientation were still affected

by the distress of their patients with malignant wounds). Instead, she remained open-

minded and concentrated on what the participants were saying. She remained aware

that her opinion of the nurses’ actions was not germane to the research process.

The researcher acknowledged that she was probably more sympathetic towards the

patients and the caregiver, than she was towards the nurses. This may have been

because she was a reasonably new nurse, or it may have been because she had many

years’ experience as a patient herself. However, the researcher believed it was

because, even though everybody involved with a malignant wound was likely to be

affected by it, the distress would be greater for the patients because they could never

walk away from it and, ultimately, it would be responsible for their death. The researcher

was also more sympathetic towards the patients because she had observed other

nurses focusing on physical management because they did not know how, or want, to

deal with psychosocial issues. The researcher was determined not to fall into that

category but, instead, to treat the patients as entire and complex entities, rather than just


a wound. The researcher also experienced greater desire to comfort the patients and

caregiver because their distress was more evident and immediate. Although some of

the nurses had been distressed (and may still have been), that distress was less obvious

and may have been mediated somewhat through time. As a result, even though she

was respectful and friendly with every participant, her ‘caring nurse’ persona was

probably more evident when interviewing patients and the caregiver.

The researcher also acknowledged the possibility of a hierarchical imbalance, albeit

unintentional. For example, there was greater likelihood of a ‘level playing field’ with

other nurses. However, the patients and caregiver may have viewed her as an ‘expert’,

particularly as she was aligned with a university and conducting PhD level research.

Because she was aware of this possibility, the researcher attempted at all times to be

friendly and informal (but respectful), and to ensure that all participants were as much at

ease as possible.

Having identified her biases and pre-understandings, the researcher was then left with

the task of reducing their impact upon the research. She agreed with the stance taken

by a number of authors (Nagel 1986; Schmidt 2006; Schwandt 2003) that it is impossible

to completely eliminate the influence of one’s biases and pre-understandings. However,

their impact upon the research was minimised through the researcher adopting the

process of ‘bracketing’. Bracketing requires the researcher to put the identified biases

and pre-understandings to one side and interpret, as much as possible, the data and

developing findings with only minimal influence from the biases and understandings

(LeVasseur 2003). Cohen, Kahn and Steeves (2000, p. 86) described the goal of

bracketing as reducing ‘as much as possible the bias the researcher brings to that

dialogue. The goal of the hermeneutic phenomenological researcher is to be able to


report things as they appear to be as encountered in the field and documented in the

field text, rather than as the researcher would have them be.’ Thus, by bracketing these

influences, the experiences of the participants were heard and analysed, unencumbered

(as much as possible) by the researcher’s own standpoint. As the concept of bracketing

is an important part of phenomenological research, it will be discussed in greater detail

in the ensuing section on methodology.

Throughout the research, it was never just a case of the researcher being pleasant to

the patients and caregiver because she wanted the information they were able to

provide. She actively wanted them to gain something from the encounter. It seemed

that they all did because they were grateful to her for listening to their stories. In the case

of the caregiver, the researcher was able to offer something more tangible because she

discussed with her the possibility of seeking assistance to deal with her distress, along

with the reassurance that being in need of support was not a character weakness.

Having discussed the paradigm within which the research was conducted and the major

assumptions underlying the project, discussion will now turn to the specific components

of the design and conduct of this project, commencing with the methodology.

Phenomenology Given the sensitive nature of the topic, the methodology for this study needed to be one

that would allow a rich description of the experience while also being sensitive enough to

allow compassionate elicitation of intimate information from a vulnerable population. At

the same time, the methodology needed to be capable of conforming to academic

principles. Phenomenology was selected as the methodology capable of achieving

these objectives.


Phenomenology involves the in-depth study of phenomena as they are experienced

subjectively. It is less interested in what happened or how it happened but, rather, what

the experience was like for those experiencing it (Cohen, Kahn & Steeves 2000; van

Manen 1990, 1999). Phenomenology has been described as having ‘a good deal to

offer palliative care research’ (Seymour & Clark 1998, p. 130) and as an appropriate

methodology for understanding how people experience ill health (Cohen, Kahn &

Steeves 2000; Madjar & Walton 1999).

Although there are a number of different forms of phenomenology (for example:

transcendental, naturalistic, existential, genetic, realistic), the two most recognised forms

are: descriptive (eidetic) phenomenology which describes lived experiences; and

interpretive (hermeneutic) phenomenology which interprets lived experiences to

explicate the meaning embedded within them (van Manen 1990). The two crucial

features of phenomenology are: the primacy of the individual’s perspective; and the

suspension (bracketing) of pre-existing beliefs (Waksler 2001), both of which are

expanded upon below. (Refer to the previous section on ‘reflexivity’ for an introductory

discussion on the concept of bracketing).

Development of Phenomenology Edmund Husserl is credited with bringing phenomenology into popular usage early in the

twentieth century. This traditional form of phenomenology stipulated that phenomena

could only be understood through bracketing the natural world and disconnecting

(disengaging) from its taken-for-grantedness to transcend subjectivity and enter a pure

consciousness. In theory, this new perspective would facilitate the ‘unconcealment’ of


the essence of the phenomenon of interest (Earnshaw 2006; Grbich 2007), enabling the

implicit to be made explicit.

However, Husserl’s version of phenomenology was criticised by later phenomenologists

for its decontextualisation of the phenomenon under investigation. They argued that

since meaning resided in context, the reduction of a phenomenon to its essence stripped

it of its meaning (Elbaz-Luwisch 2007; Ely et al 1997; Ricoeur 2006; Rudebeck 2001). A

single event is capable of infinite meanings depending upon the context within which it is

encountered and, importantly, the background of the person who is perceiving it

(Schmidt 2006; Zaner 1964, 1970). So, although the pure essence of a thing has been

revealed, it has no meaning and must be recontextualised before a meaning can be

applied.

The practice of bracketing was further criticised by the existential phenomenologists –

Sartre, Merleau-Ponty and Heidegger. Similar to the preceding discussion on the

impossibility of achieving total objectivity, the existential phenomenologists also argued

the impossibility of bracketing ourselves from our natural worlds (Zaner 1964) or, thus, of

ever completely transcending our personal point of reference (Drew 2001; Nagel 1986;

Papadimitriou 2001; Popper 1957; Schmidt 2006). As declared by Bernstein (2002, p.

273): ‘It is an illusion to think that we can bracket or suspend all our current

prejudgements’. Therefore, because we can never encounter any thing from a

presuppositionless stance (Johnson 2000; Wiener 1998), everything that we experience

will be interpreted through our personal worldview and the sociocultural milieu in which

we exist. As a result, as suggested by the existential phenomenologist Heidegger, the

majority of human knowledge could be considered to be ontological – as opposed to

epistemological – because it is constructed by humans from within a cognitive milieu


influenced by personal historicities and sociocultural discourses (Johnson 2000).

(Ontology is the study of ‘being’; it ‘raises basic questions about the nature of reality and

the nature of the human being in the world’ [Denzin & Lincoln 2003b, p. 245].

Epistemology is the study of knowledge. It questions how we know the world and

examines the relationship between the knower and what is known [Denzin & Lincoln

2003b].)

Taken to its extremes, bracketing suggests a Cartesianesque separation between

consciousness and our bodily being-in-the-world. This practice would expose

phenomenologists to accusations of idealism if they claimed to be able to achieve such a

pure reflective attitude with which to view the world. Even were it possible to do so, the

only pre-understandings and biases that could be bracketed would be those of which the

hopeful transcendentalist was aware. Those of which s/he remained unaware would

continue to influence her/his experience of the phenomena of interest (Schmidt 2006;

Taylor 2002).

More recently, a revised notion of bracketing has been suggested which recognises it as

a temporary suspension of identified pre-understandings and habitual ways of

interpreting the world. By suspending this natural attitude and adopting a

phenomenological (or critical) attitude in its place, phenomenologists circumvent their

preconceptions, facilitating the emergence of perspectives which were previously

concealed but now act to illuminate the meaning of an experience for an individual

(Denzin & Lincoln 2003a; Langemo 2000; LeVasseur 2003; Todres & Wheeler 2001;

Toombs 2001; Walton 2001; Zaner 1970).


Other important concepts of the later phenomenologists included ‘thrownness’ and its

consequent – ‘situatedness’, ‘co-constitutionality’ and ‘fusion of horizons’. Because the

assumptions underpinning this research project include these concepts, they are

discussed briefly hereunder.

Phenomenological Concepts Thrownness recognises that individuals are somewhat constrained by the particular

cultural, historical and familial circumstances into which they are ‘thrown’ which

consequently becomes their ‘situatedness’. Thus, although we are able (or even forced)

to some extent to constitute our own reality, we are limited in what we may become by

the constraints of our thrownness and situatedness (Heelan 2001; Leonard 1994;

Schmidt 2006; Zaner 1970). Although typically unrecognised, these concepts apply to

the life of every individual. They refer to the things that cannot be changed and, as

such, influence how an individual lives her/his life.

Co-constitutionality recognises that a research project is a joint product ‘co-constituted’

by both participants and the researcher, all of whom are influenced by their own histories

and the constraints of their situatedness. There are two dimensions to co-

constitutionality in this thesis. The first is the relationship between the individual and

their worldview as they co-constitute each other; meaning that we are being constructed

by our own worldview at the same time that we are constructing it from within its own

sphere of influence (Koch 1995). The second dimension is the relationship between the

researched and the researcher and the subsequent influence of this constructed

relationship on interpretation of the data (Gilgun 2005; Lopez & Willis 2004).


During the co-constitution of the research, a portion of each participant’s worldview will

fuse with the worldview of the researcher, producing a new worldview for each

interactant. This phenomenon, referred to as ‘fusion of horizons’, creates new and

expanded horizons for all interactants that extend the range of vision, create new

relationships and make other meanings possible (Bernstein 2002; Cohen, Kahn &

Steeves 2000; Dostal 2002; Figal 2002; Lopez & Willis 2004; Moules 2002; Schmidt

2006; Taylor 2002; Widdershoven 1993). Hence, the understanding that occurs when

horizons fuse is an everyday experience as we are continually confronted with new

experiences that are fused with existing knowledge to expand the horizon of our current

knowledge. Again, this concept highlights the ‘construction’ of knowledge, rather than

its ‘discovery’.

The interpretive assumptions underlying the design and conduct of this study suggest

that interpretive phenomenology would be an appropriate methodology. Also known as

hermeneutic phenomenology, it will be expanded upon in the next section.

Hermeneutic Phenomenology Schmidt (2006, p. 10) described hermeneutic phenomenology as ‘the art of

understanding’ (Verstehen), which is an appropriate attribute for a project with the

objective of understanding a specific human experience. The word ‘hermeneutic’ is

derived from Hermes, the Greek god who was responsible for interpreting the meanings

of the gods to humans (Moules 2002). It is an appropriate descriptor for a branch of

phenomenology that seeks to reveal otherwise concealed meanings (Ricoeur 2000;

Streubert Speziale & Carpenter 2003), thus making manifest what is usually hidden in

human experiences (Lopez & Willis 2004).


Through the presentation of richly described experiences, it is the aim of this study that

readers will gain an understanding of previously unknown experiences (van Manen

1990). As the experiences are elucidated and meanings revealed, this and other

hermeneutic studies aim to evoke amongst their readers the experience referred to by

the Dutch philosopher Buytendijk as the ‘phenomenological nod’ (van Manen 1990, p.

27). The phenomenological nod occurs when readers recognise a described experience

as something they have had or could have had and, consequently, ‘nod’ in recognition or

agreement.

An important phenomenological tool adopted by the researcher when collecting and

analysing data was the ‘hermeneutic circle’. It is a metaphor which describes the

dialectic movement between the parts and the whole of the research (Cohen, Kahn &

Steeves 2000). The circle commenced with the researcher acknowledging her

forestructures of understanding and recognising that she already had an anticipation of

the meaning of the data about to be interpreted (Cohen, Kahn & Steeves 2000). Armed

with this preliminary knowledge, the researcher engaged with the smaller parts of the

data in order to better understand the whole. As understanding of the smaller parts

developed, that understanding influenced the researcher’s understanding of the whole

which, in turn, influenced her understanding of the smaller parts. Hence, the circular

motion for which the process is named (Streubert Speziale & Carpenter 2007).

The subjective, interpretive nature of hermeneutic phenomenology means that no true or

correct or final meaning can ever be produced by any interpretive study because there

are always other interpretations that can be drawn – by ourselves or by others (Becker

1997; Bernstein 2002; Clandinin & Connelly 2000; Figal 2002; Josselson, Lieblich &

McAdams 2003; Leonard 1994; Rosenwald 2003; Schmidt 2006; van Manen 1990,


1999). One human phenomenon where the primacy of individual interpretation is

paramount is that of ill health. It will be discussed in greater detail in the next section.

Phenomenology of Ill Health The ensuing discussion on the phenomenology of ill health serves three main facets:

i) It acts as an example of phenomenological understanding; ii) The assumptions discussed illustrate major phenomenological assumptions that

also underpin the analysis of data in this study; and iii) It presents a ‘sensitising’ background discussion to the major topic of

investigation and discussion in this study, itself an ill health experience.

In a world where biomedicine still appears to have primacy in matters related to human

health (Frank 1995; Martinez 2002), the experience and meaning of ill health are often

overlooked concepts. This oversight is unfortunate because it is often the meaning of a

disorder that has more impact upon a patient than the actual disease (Cohen, Kahn &

Steeves 2000; Frank 1995; Gadamer 1993; Kleinman 1988). Phenomenology can

assist in elucidating the experience for individual patients. Rather than just

understanding what is happening to a patient, it enables us to gain an understanding of

how the patient is experiencing the illness and what the meaning is for her/him.

As humans, we experience many things on a daily basis. When these things (our

bodies, for example) operate as expected, we fail to notice them and preserve a taken-

for-granted ‘natural’ attitude towards them. One of those expectations is good health.

We give it ontological primacy by failing to notice it when we have it and, paradoxically,

only notice it when we no longer have it (Freund & McGuire 1999; Gadamer 1993).

Sartre described this attitude as le passé sous silence (passed-over-in-silence) (cited in

van Manen 1998).


However, when the things in our lives become unfamiliar or are disrupted, as in ill health,

our ontological security is threatened as the assumptions which guide our life are

suddenly thrown into doubt and our biographies are involuntarily altered (Clarke & Griffin

2008; Crossley 2003). In these instances, the natural attitude is discarded and the

disorderly (or diseased) thing is suddenly foregrounded and no longer taken-for-granted

(Becker 1997; Johnson 2000; Lyons 2007). We are suddenly very aware of that part of

the body that is no longer functioning as expected; it becomes objectified, ‘other’ and no

longer trustworthy (Becker 1997; Freund & McGuire 1999; Miczo 2003; Shildrick 1997)

and we may find ourselves mourning our previous (but unnoticed) existence-in-harmony

(Hepworth 2003).

In ill health, activities are experienced differently and new understandings are required to

facilitate adaptation to the changed body and a new way of being-in-the-world typically

characterised by ambiguity and uncertainty (Becker 1997; Ironside et al 2003; Williams

1984). The illness often becomes the vantage point from which all events are viewed

and through which they are interpreted (Hyden 1997). Accordingly, as sufferers

increasingly objectify their bodies and focus upon their disorder, their lifeworlds typically

become constrained by their narrowed perception (Fjelland & Gjengedal 1994). van

Manen (1998) illustrated this phenomenon when he stated that if humans are to be

attentive of the things in the world in which they are involved, they must be able to forget

their bodies. Unfortunately for the patients in this study, it was impossible to forget their

undisciplined bodies; bodies that refused to comply with societal norms regarding

presentation and the retention of bodily fluids within the body.

If the illness is severe and/or permanent, life may become a dual but discontinuous

reality: life before the illness and life after the illness. It may not be possible to reconcile


the ‘after’ identity with the ‘before’ identity (and the possible ‘future’ identity) even though

they are the same person (Rimmon-Kenan 2002). Afflicted individuals may even feel as

if the person they were before has died and been replaced with this new entity (Becker

1997; Clarke & Griffin 2008; Crossley 2000). Even for those lucky enough to overcome

serious illnesses, they are not always able to restore the taken-for-grantedness of their

body because it and their sense of self has been changed by the illness (Becker 1997;

Crossley 2000).

In the event of a terminal illness, there is the added burden of dealing with a suddenly

diminished future. The infinite days that had previously been imagined as stretching

forever into a distant future are now numbered and the future no longer so distant or

taken for granted. According to Camus (1955), individuals in Western societies tend to

be future-oriented beings; they are always ‘becoming’ towards. Therefore, if the future

they are living towards becomes increasingly non-existent or unrecognisable, their

ontological security is threatened and their temporal orientation thrown into disruption

(Crossley 2000; Schou & Hewison 1999). ‘Lived time’ may speed up or slow down, or

one may feel frozen in time; trapped in a liminal existence and facing an uncertain future

(Brough 2001).

The preceding discussion has shown that the experience of ill health is more than the

physical effects of the disorder. Hermeneutic phenomenology is an ideal vehicle for

illuminating the total experience of ill health and facilitating a greater understanding of

the experience for each individual. It is hoped that such understanding will in turn lead

to better treatment plans for patients with serious, potentially life-altering disorders such

as malignant wounds.


Research Question The research question for this study was: what is the lived experience of malignant

wounds according to patients, caregivers and nursing staff? The broad scope of this

question placed it within the definition of Level I research questions according to Brink

and Wood (1994). Level I questions are appropriate for topics for which there is little

existing knowledge and which are designed to explore the phenomenon of interest

(Krathwohl 1988). They comprise a stem (‘what is’) and a topic (‘the meaning’), as well

as referring to the population to be studied (‘patients, caregivers and nursing staff’).

Achieving Rigour In view of the diverse methods adopted by qualitative researchers, it is unlikely that any

one set of criteria will be appropriate for all qualitative research. Accordingly, the criteria

recommended by a number of qualitative researchers were reviewed before it was

decided to adopt the concept of verisimilitude. A number of authors have recommended

verisimilitude as a measure of rigour in studies analysing participant narratives, including

Bruner (1986) who suggested that verisimilitude was a more appropriate measure than

validity because it focused on the meaning of the narratives, rather than their ‘truth’.

Similarly, Polkinghorne (1988, cited in Bailey 1996) argued that validity when analysing

narratives should be replaced with verisimilitude; with ‘results that have the appearance

of truth or reality’ and that are ‘well grounded and supportable’ (p. 176). Specific criteria

adopted to achieve verisimilitude are outlined below:

1. Rich, thick descriptions were provided that illustrated the lived experiences of

the participants and facilitated readers’ understanding of the phenomenon

from the perspective of those experiencing it. The aim of these descriptions

is to achieve the ‘ah ha’ experience, to invoke amongst the readers, not only

an understanding of the experience, but some consideration of how they


might themselves respond in a similar situation (Glesne 1999; Barone 1995).

Substantial quotes were presented from participants’ narratives to support

these thick descriptions, and to demonstrate that it was the participants’

stories (rather than the researcher’s) that were being presented in the

findings.

2. In accordance with the recommendations of Denzin and Lincoln (1994),

confirmability was achieved through the maintenance of a reflexive journal to

enable elucidation of the researcher’s own subjectivity and biases (as

outlined in the ‘researcher stance’ and ‘reflexivity’ sections above), as well as

providing an audit trail of the decision-making processes and how

interpretations have been constructed. As analysis continued and the sub-

themes and themes emerged, contact was maintained with both project

supervisors who continued to review the evolving findings, and make

comments and suggestions for improvement or refinement.

3. In accordance with the recommendations of Rubin and Rubin (1995),

transparency was achieved through explicit descriptions of the methods used

to collect and analyse data (please refer to the ensuing sections on ‘data

collection’ and ‘analysis and findings’). Through the provision of descriptions

of the setting and procedures, a context has been provided that will assist

readers to achieve a greater understanding of the lived experience of

malignant wounds. In this way, the reader will gain a sense of verisimilitude

as they visualise the interaction and gain a feeling for the cognitive and

emotive state of the interviewee (Ponterotto 2006).

4. In accordance with recommendations by Richardson (2003), crystallisation

was achieved through multiple data collection sources (patients, caregivers,

health care professionals).


This section concludes the first phase of this chapter which has discussed the strategies

planned for the conduct of this study. The ensuing phase will discuss the

operationalisation of those strategies and their consequent results.

Ethics Ethical approval for this study was received from the Human Research Ethics

Committees (HREC) of Central Queensland University, Princess Alexandra Hospital,

Blue Care and St Vincent’s & Holy Spirit Health. Copies of the letters of approval are

attached as Attachment A. The informed consent package approved by Central

Queensland University for each of the cohorts is attached as Attachment B. In order to

meet the individual requirements of each of the health agencies, the informed consent

package was altered slightly for each agency by which ethical approval was granted.

Applications for ethical approval were submitted to hospitals in and near the home town

of the researcher. However, they either refused to participate in the study or stated quite

categorically that they never treated any patients with malignant wounds.

In view of the sensitive nature of the research question, the interviewer adopted extra

precautions during the interviews. For example, at the commencement of interviews in

the patient cohort, the researcher ascertained from participants their understanding of

their illness as a guide to the terminology to be used and matters that might be

discussed. Before and during the interviews, particularly when interviewing patients, the

researcher checked with participants to ascertain their willingness to continue. At the

conclusion of interviews, the interviewer checked again that participants were not

experiencing any discomfort and chatted with them for a few minutes to reassure herself


that the participants were not noticeably displaying any discomfort as a result of the

interview process. At no time did any of the participants request that the interview be

ceased. There were no instances where participants expressed discomfort or requested

that certain matters not be discussed.

Confidentiality The disks on which interviews were recorded for this project are kept in a locked box

stored on the Bundaberg campus of Central Queensland University in accordance with

the conditions outlined in the National Ethics Application Form submitted to the HREC of

each institution through which participants were sought for this study. Copies of this

data and all transcriptions are stored on the personal drive of the researcher in the

Central Queensland University computer network. Every one of these files is protected

with a password known only to the researcher. All participants in this project were

referred to by a fictitious given name. There was no identification of any participants, nor

was there any disclosure of information which could be considered likely to identify any

of the participants.

Researching Vulnerable Populations Given the sensitive nature of the research and the probable ill health of participants in

the patient cohort of this study, the researcher was cognisant that such participants

would probably be considered to be vulnerable. Accordingly, prior to conducting

interviews, the interviewer attended a workshop on research amongst vulnerable

populations, particularly those (or their parents) who might have a life-limiting condition.

Topics covered in the workshop included: cohorts of participants considered

‘vulnerable’; surveys versus interviews; initiating interviews (determining what the

participant knows about their condition); monitoring emotions of participants; choosing

words carefully; listening attentively; researcher disclosure and follow up. The


researcher also reviewed the literature on the ethics and recommended methods for

conducting research amongst vulnerable populations. The results of this review are

summarised hereunder.

There is widespread agreement within the literature that palliative patients are vulnerable

(Agrawal & Danis 2002; Barnett 2001; Bradburn & Maher 2005; Casarett & Karlawish

2000; Daneault et al 2004; Hutchinson, Wilson & Wilson 1994; Krouse, Easson &

Angelos 2003; McGrath et al 2005; Pessin et al 2008; Williams et al 2006).

Unfortunately, because of this vulnerability, there are prevailing perceptions that

research amongst vulnerable populations is unethical and difficult and that vulnerable

people should not be requested to participate in research (Casarett 2005; de Raeve

1994; Lawton 2001; Raudonis 1992). Although there is no empirical research to support

these preconceptions (Dyregrov 2004; Newman, Walker & Gefland 1999), their influence

has been significant as it has hindered the development of improvements in the

provision of care to vulnerable populations because they have been excluded from

research aimed at improving patient care (Casarett & Karlawish 2000).

As several authors (Aoun & Kristjanson 2005; Casarett 2005; Hopkinson, Wright &

Corner 2005; Stevens et al 2003) have pointed out, there is a lack of robust evidence on

which to base clinical decisions and develop guidelines in palliative care. At the same

time, research in palliative care remains relatively under-developed (Dean & McClement

2002; Penrod & Morrison 2004) and palliative patients under-represented in research

(Wright et al 2006). Obviously, if the interventions offered to the dying are to be

improved, it is vital that research be conducted – with the dying. Without research, there

is a risk that palliative patients will be exposed to unproven therapies or therapies

appropriate for other cohorts but not so easily transferable to palliative patients (Boult et


al 2003; Ferrell 2004; Hudson 2003; Jubb 2002; Ling, Rees & Hardy 2000; McMillan &

Weitzner 2003; Penrod & Morrison 2004; Richards, Corner & Clark 1998).

In contrast to the prevailing perceptions that research with vulnerable populations is

unethical, some recent publications have suggested that unethical practices might, in

fact, reside in not conducting research amongst vulnerable populations. For example, a

recent Cochrane systematic review (Adderley & Smith 2007) argued that depriving

palliative patients of the benefits to be gained from research was ethically questionable.

Other authors have argued that, based on the Declaration of Helsinki, not offering

palliative patients the opportunity to participate in research was unethical (Krouse,

Easson & Angelos 2003).

In addition to the literature suggesting that research amongst vulnerable populations is

not unethical, there is a large body of literature providing evidence that such research

may be of benefit, not only to the research community, but to participants as well. Apart

from the generic benefits of increased knowledge and improved health interventions,

numerous authors have provided evidence of specific benefits for participants, such as

therapeutic, cathartic, educational, empowering, gaining new perspectives, and altruistic

(Corbin & Morse 2003; Dean & McClement 2002; Dyregrov 2004; Gilbert 2001; Glesne

1999; Kennedy Bergen 1993; Lee & Kristjanson 2003; Papadimitriou 2001; Scott et al

2002). The literature was replete with participant statements such as: ‘… thank you so

much, I never get a chance to talk about this’; ‘… it’s been great … your questions really

gave me a chance to talk about it in the open’ (Dickson-Swift et al 2006, p. 859); ‘I found

great relief in talking about what I had been through’ (Barnett 2001, p. 158); and ‘It has

helped me put things in perspective … I didn’t realise how much I had bottled it up

(Rowling 1999, p. 173).


In view of the abundance of empirical evidence in support of research amongst

vulnerable populations, the fact that the power of prevailing perceptions has been strong

enough to restrict research amongst vulnerable populations is regrettable. However, the

argument against research is weakened even further when it is considered that there is

negligible empirical evidence of risk. Of the more than one hundred articles on the topic

of research amongst vulnerable populations reviewed for this project, there were very

few reports of adverse instances (Casarett 2005). Additionally, in twenty years of

research amongst vulnerable participants, Morse (2000) stated that none had requested

counselling as the majority had found the experience to be beneficial. Indeed, Corbin

and Morse (2003) concluded that ‘qualitative research using unstructured interviews

poses no greater risk than everyday life …’ (p. 335).

Unfortunately, despite the vast body of literature demonstrating that research amongst

vulnerable populations was not unethical, the researcher for this study experienced great

difficulty in convincing gatekeepers that access to palliative patients was not only likely

to be non-maleficent but might also be of the benefit to the patients. Similar difficulties

have been recognised in the literature where HCP gatekeepers have been described as

the greatest barrier to recruiting participants. It was assumed that access was denied for

a variety of reasons, including a desire to protect their patients and the assumption that

patients might be reluctant to spend any of their remaining time talking to a researcher.

Unfortunately, even though these actions may be well-meaning, they also raise issues of

paternalism and reduced patient autonomy (Addington-Hall 2002; Ewing et al 2004;

Hudson 2003; McMillan & Weitzner 2003). In view of the extensive legislation enacted

to protect patient rights, this issue of reduced autonomy is somewhat paradoxical.


Patients should be given the opportunity to decide whether or not to participate. This

decision is not one that should be made for them by a third party.

As highlighted by Krouse, Easson and Angelos (2003), allowing gatekeepers to

determine who will participate in research also runs the risk of biased findings as data

will only be collected from those participants that HCP have deemed to be suitable for

research. It is possible that the views of those most unwell and closest to death will

remain unknown and their needs unmet (Ewing et al 2004) as inaccurate theories and

assumptions prevail (Lee & Renzetti 1990).

In order to add to the existing literature on the subject of research amongst vulnerable

populations, the views of participants in this study were sought at the conclusion of the

interview. Not one of the eighteen participants reported experiencing any adverse

effects. Instead, participants in the patient cohort made comments such as: ‘… I can’t

see a reason that you wouldn’t want to [participate in research] …’ and ‘I can’t see any

non-benefit, it’s easy enough to talk …’ Similarly, the caregiver denied that she had

experienced any adverse effects and invited the interviewer to contact her for more

information or return for a further interview. Nurses also denied experiencing any

adverse effects. Generally, they recognised the need for greater understanding of what

nurses experience when caring for patients with malignant wounds. Consequently, they

were happy to provide the information that would foster such understanding: ‘… if it can

be useful that there’s recognition of the trauma [for the nurses]’.

Data Collection In recognition of the sensitive nature of the topic and the exploratory nature of the study,

unstructured, open-ended interviews were selected as the most appropriate method of


data collection. Such interviews are often referred to as narrative interviews because

they follow the format of inviting the participant to tell their story of the experience of

interest. According to Hansen (2006), interviews are the appropriate method for

exploratory research because they facilitate a level of in-depth data collection not

achievable through any other method. They support the collection of rich data from

which thick descriptions of participants’ life experiences can be constructed (Holstein &

Gubrium 2004; Plunkett 2001; Yardley 1999).

The value of interviews to qualitative research will be expanded upon in this section.

Also discussed will be human cognitive processes of both narrators and listeners as the

experience of interest is narrated and each party makes meaning of what they are

saying/hearing. The final part of this section will comprise a report of the sampling

procedures used and how the interviews were conducted, recorded and transcribed. All

of the assumptions discussed in the ensuing sections also apply to the current study.

Interview Method in Qualitative Research According to Nunkoosing (2005), recognition of their value in obtaining rich information

about life experiences has seen in-depth interviews becoming the most widely used

method of generating data in social science research. They are particularly useful for

research aimed at understanding illness experiences. For, if we are to understand how

a person has constructed the meaning attached to their illness, we must first understand

their lifeworld (Benner 1994). In-depth interviews are possibly one of the best methods

for gaining such insight, particularly in palliative care settings or instances of chronic

morbidity where it is often physically easier for participants to talk than it is to complete

questionnaires. More importantly for this study, Hollway and Jefferson (1997) described


the in-depth interview as the method of choice for researchers investigating sensitive

subjects.

In-depth or narrative interviews are inevitably characterised by ambiguity, subjectivity

and nuances in interpretation between participant and researcher as each narrates and

receives the data through their own worldview (Fontana & Frey 2003). Even when

collecting information from an informant first-hand, the researcher is aware that the

information has already been subjected to the influences of the individual’s worldview. It

is known with some certainty that human memories do not remember what is seen and

heard per se but, instead, organise this sensory data into coherent formats based on the

individual’s past experiences (Johnson 2002; Lynn et al 1998). We do not simply

retrieve events from our memories; we (re)construct them in the light of interceding

events and contemporary circumstances (Crossley 2000) and may even fill in any gaps

in memory with imaginative constructions (Lynn et al 1998). In much the same way that

an artist portrays an image through her/his own creative subjectivity, so the finished work

of a narrator will be presented through the narrator’s creative subjectivity (Shakespeare

2005).

Hence, even before the interviews started, the researcher was aware that the

experience of interest had been transformed through interpretation on the part of the

interviewee and would be transformed yet again as its telling was subjectively

constructed in the act of narration (Gubrium & Holstein 2002; Lyons 2007; van Manen

2001). Simultaneously, as the researcher heard the story, she did so through her own

assumptions and preconceptions and influenced the emerging narrative through her

presence and the ways in which questions were asked (Riessman 2008). Already, the

tripartite enterprise between the researched, the researcher and the information they


exchanged was obvious as they interwove aspects of their individual worlds in an

exquisite dance of interaction, creating an intersubjective space between them where

meaning could be constructed.

Hearing effectively through these multiple layers of complexity necessitated active

listening on the part of the interviewer. As she listened intently and authentically, the

researcher attempted to temporarily suspend her own convictions and assumptions as

she listened to how her participants constructed meanings within the contextuality that

shaped and reshaped their worlds (Holstein & Gubrium 2004; Mishler 1986). At the

same time, she avoided the temptation to diagnose, judge, filter out what she considered

irrelevant, advise, placate, daydream or concentrate on other aspects of the interview

(Clinchy 2003; Figal 2002; Svertsen 2004; Taylor 2002; Wengraf 2001).

Another advantage of active listening is its signal to interviewees that the researcher is

interested in what they are saying and is validating their right to be heard (Huber &

Pinnegar 2007; Rosenthal 2003). This issue was important because the researcher was

mindful that participants were so much more than a means to a research end. They

were human beings sharing their life experiences with another interested human.

Sampling Sampling was purposive as only English-speaking, cognitively competent adults with

malignant wounds (or their caregivers or nursing staff) were eligible to participate. Staff

at each of the agencies from which ethical approval had been received were requested

to present the information package to patients with malignant wounds. Interested

persons were invited to contact the researcher if they wished to participate in the study.


When potential participants contacted the researcher, interviews were arranged at a time

and location of the participant’s choosing.

Difficulties were experienced in recruiting participants into both the patient and caregiver

cohorts of this study, mainly because gatekeeper HCP were reluctant to refer patients

for participation. The researcher attempted to overcome these barriers on many

occasions. She maintained regular (weekly or fortnightly) telephone, postal and e-mail

contact with all three agencies. Despite incurring a 900 kilometre round trip on each

occasion, she also visited the three health agencies in person on three separate

occasions in 2008. At these times, she made contact with the project liaison officer to

discuss the project, to enquire whether they had any suitable participants, and to check

they had adequate supplies of the information package. On six separate occasions,

staff advised they had patients or caregivers who fitted the study profile but would not be

referring them for recruitment as they believed it was not in the best interests of the

patients/caregiver. A mailout was conducted to forty six Blue Care sites in mid-2008.

Although some staff at those sites did contact the researcher, they either advised they

had no patients with malignant wounds, had recently had patient/s with malignant

wounds but they had died, or stated that they were caring for patients with malignant

wounds but did not believe it was in the patients’ best interests to be referred for

possible recruitment into the study.

Ultimately, only three patients were referred by two health agencies (Princess Alexandra

Hospital and St Vincent’s Hospital, Brisbane). The project liaison officer at each agency

provided the potential recruit with the information package. Once the potential recruit

had indicated her/his willingness to be involved, the project liaison officer then contacted

the researcher and provided the contact details for the patient. The researcher then


contacted each patient by phone, discussed the project, ensured they had received and

read the information package, then made arrangements to conduct an interview at a

time and place of the participant’s choosing.

The recruitment of caregivers was also affected by low patient recruitments as it had

been hoped that patients would have caregivers who would also be willing to participate.

However, as only three patients were interviewed, none of whom had lay caregivers, that

avenue for recruiting caregivers did not eventuate. The one caregiver who was

interviewed was already known to the researcher.

Eight nurses were recruited following the mailout to forty six sites from one health

agency (Blue Care) which had, primarily, been aimed at recruiting patients and/or

caregivers. One nurse was recruited from Princess Alexandra Hospital (as a result of

the regular contacts to determine whether any potential recruits had been identified) and

the other five nurses were already known to the researcher as having some experience

in caring for patients with malignant wounds. One of these five nurses regularly

presented at education sessions on wounds at the end of life; two were palliative care

nurses working in Sydney who had presented a paper on malignant wounds at a

conference in 2007; and the remaining two nurses were colleagues that the researcher

had worked with in the past, both of whom were known to have had experience caring

for patients with malignant wounds. None of the nurses interviewed had cared for any of

the patients interviewed in the patient cohort of this study. The demographics of the

participants are shown in the following three tables.

Patient Name

Gender Age Duration of Wound

Site of Malignant Wound

Length of Interview

Gerry M 87 Two years Left face/scalp 57 minutes


Gwen F ≈ 70 Four years Right breast 72 minutes Jemima F 56 Six months Right breast 76 minutes

Table 1: Patient demographics

Caregiver Name

Gender Age Circumstances of Care Length of Interview

Lucy F ≈ 70 Caring for her husband for two years who had a malignant wound in his left groin

82 minutes

Table 2: Caregiver demographics

Nurse Name Gender Age Hospital/Community

Length of Interview

Janice F 39 H 47 minutes Marion F ≈ 50 H 42 minutes Barb F ≈ 50 H 58 minutes Loretta F ≈ 50 H 56 minutes Linda F ≈ 24 C 56 minutes Roxanne F ≈ 55 H 36 minutes Mandy F ≈ 50 H 44 minutes Abby F ≈ 50 C 39 minutes Leanne F ≈ 50 C 46 minutes Cindy F ≈ 40 C 42 minutes Megan F ≈ 40 C 42 minutes Celia F ≈ 45 C 48 minutes Diane F ≈ 45 C 42 minutes Lynnette F ≈ 50 C 76 minutes

Table 3: Nurse demographics

Participant Vignettes Vignettes for the patients and caregiver are presented hereunder. Due to the number of

participants involved, vignettes are not presented for the nurse participants.

Gwen Gwen was an independent, feisty lady in her early seventies. She informed the

interviewer (but with a smile) that she would not answer any questions that she did not

like and would stop the interview if she wanted to. The researcher agreed with these

conditions. Gwen had never married and had no children. When not in the hospice, she

lived with a nephew who, she said, ‘did well to put up with her’. The nephew was her

only remaining family member. Gwen had migrated to Australia from Newcastle-upon-


Tyne many years previously and had always worked in secretarial positions. She

resented her chronic fatigue and the loss of her independence, but was quite delighted

that she had outlived the medical prognoses which had predicted that she would die in

2004.

Gerry Gerry was an 87 year old man who had never married and had no children. He had

lived with his parents all his life. When his father died in 1959, Gerry continued living at

home to look after his mother until she died at the age of 89. A devoutly religious man,

Gerry expressed a desire to be reunited with his mother in heaven. Even so, he still

seemed to be longing to live for many more years, and spoke of how he would have

liked to live to 100 years of age. Gerry had worked in government service positions

since leaving school, and was very proud to have received a medal from the Governor of

Queensland for 43 years service when he retired. Gerry wanted his story to be told, not

only because he wanted HCP to have a greater understanding of his experience, but as

a warning to others to avoid over-exposure to the sun. Gerry attributed his malignant

wound to many years spent swimming and sunbathing – without adequate sun

protection.

Jemima Jemima was 56 years of age. She was divorced with three adult sons. Like Gwen,

Jemima was also fiercely independent and resented the intrusion of the malignant

wound which had changed her life and made her so dependent upon others. Having

previously always worked to support herself, including owning several businesses, she

was particularly upset at now having to survive on welfare payments. Although

recognising that she was palliative, Jemima still stated her intention to prove the doctors

wrong and outlive their prognoses. To this end, she and her sons were actively seeking


information about treatments that would either cure the malignant wound or slow its

progression.

Lucy Lucy was in her seventies. She had two adult daughters who both lived 400 kilometres

away. Lucy had looked after her husband, Bill, for two years. During that time, she had

done all she could to care for him, but still continued to wonder what she might have

done differently to help him even more. Lucy was sad, but not upset, during the

interview. She wondered why that ‘terrible wound’ had happened to them, and

considered that it was not yet finished with her as it continued to influence her life. In an

effort to escape some of the memories of their ordeal, Lucy had wanted to relocate away

from the home she had shared with Bill before he died. However, she had not been able

to afford to move. Lucy attributed her poor health (angina, arthritis) to her caregiving

experience.

Conducting the Interviews All the interviews for this project were conducted and transcribed by the principal

researcher. With the exception of Gwen (patient), all other interviews were recorded

onto an SD card. The interview with Gwen was not recorded as she expressed concern

about how the information might be used in the future. In this instance, the researcher

took notes in shorthand during the interview and wrote copious notes immediately after

the interview of all that had transpired. As a result, although much of Gwen’s interview

transcript is verbatim, it does not include everything she said, nor does it include pauses

or non-lexical verbal utterances (‘er’, ‘um’) typically sprinkled throughout recorded

speeches. Although the omission of these speech components results in a slightly

different transcript, it is the contention of the researcher that it still represents, with a high

degree of verisimilitude, the interview experience between Gwen and the interviewer.


Interviews were conducted in a range of settings. Two of the interviews with patients

occurred in the patient’s single rooms in a private hospice. The interviews took place in

the middle of a sunny afternoon on a Sunday in May 2008, at a time when many patients

were resting, so there were few interruptions, and the atmosphere was peaceful and

unhurried. Both rooms had windows overlooking landscaped gardens. By contrast, the

interview with the third patient occurred mid-morning on a weekday in November 2008,

in a noisy shared general ward in a large and very busy public hospital, with few

windows revealing the outside world. There were also a number of interruptions, as

nurses monitored the patient or performed interventions, or tended to other patients in

the ward. As the nurses had to walk past the participant’s bed to care for the other

patients, there was quite a bit of pedestrian traffic during the interview. Despite the

noise and busyness of the ward and the interruptions, the participant continued with her

narrative. As she said, she had a lot to say, and this was the first time anybody had

invited her to tell her story. Again, there was little need for the researcher to do

anything, other than to listen actively and attentively to the participant’s narrative, while

blocking out the interruptions and noise.

The interview with the caregiver occurred mid-afternoon on a public holiday in the

caregiver’s own residence in a pleasantly presented and landscaped retirement village.

Once again, the caregiver was eager to tell her story, both because she had a lot to say

and because it was the first time anybody had shown any interest in her story. She

continued to plie the researcher with coffee and biscuits bought specially for the

interview, and presented some photographs that she had taken as her husband’s

malignant wound progressed. Again, it was seldom necessary for the researcher to say

anything. Instead, she listened actively and attentively to the story told by the caregiver.


Interviews with nurses occurred in a number of different settings. One interview

occurred in an office in the large, busy public hospital mentioned previously; one

occurred in an office in a smaller public hospital; two occurred in a meeting room

overlooking pleasant landscaped gardens in a hospice in Sydney (New South Wales);

one occurred in the researcher’s office at university; and one occurred at a specialist

clinic in the researcher’s home town. The remaining eight interviews occurred at a

number of Blue Care sites on the Sunshine Coast, in Brisbane, and Beenleigh

(Queensland). Four of these interviews tended to be a little more rushed than those with

patients and caregivers, because the nurses were being interviewed during working

hours. However, the remaining four interviews occurred outside working hours, when the

nurses had more time to devote to the interview. Despite the time constraints, nurses

appeared to have a story to tell, and it was seldom necessary for any researcher input,

other than an occasional prompt or request for clarification.

Although every interview was different, they did have some characteristics in common.

Each interview was preceded by a pre-interview phase in which the researcher

introduced herself, reinforced the rights of participants, requested permission to record

the interview and provided a brief overview of the purpose of the research. If informed

consent forms had not already been signed, signatures were obtained in the pre-

interview phase.

The interview commenced with some introductory sentences in which participants were

invited to tell their story of their experience of living with, or caring for somebody with, a

malignant wound. As the interviews were unstructured, there was only one interview

question: ‘please tell me what it has been like for you living with (or caring for somebody


with) a malignant wound’. Participants were invited to share all their thoughts and

perceptions and as much information about the experience as they felt willing to divulge

during the interview. Where necessary, probes were used to elicit additional data about

specific aspects; for example, ‘please tell me more about …’

As the participants became more comfortable in the researcher’s presence, so they

revealed more and deeper information about their experience. Typically, as the

interview progressed, the need to use probes reduced considerably. In many cases, it

appeared that the ‘flood gates’ had opened and it was seldom necessary (or, at times,

even possible) for the interviewer to say anything else. Instead, she listened actively

and attentively to all that the participants had to say. There was little need for the

researcher to resist any urges to filter information or to interrupt the participants as she

was very interested in what the participants had to say and eager to hear their stories.

As a result, she only entered the conversation if the participant asked a direct question,

or on the few occasions when prompts were required.

At the conclusion of interviews, summaries were often provided and main points

reinforced as both interviewee and interviewer worked towards finalising the interview.

Participants were always thanked for their time and their stories but they also thanked

the researcher for listening and showing interest in their experiences. Although each of

the participants expressed sadness at their approaching deaths, none became upset

during the interview. Similarly, the caregiver, although appearing sad and careworn,

was not upset at any stage of the interview. Neither were any of the nurses upset at any

time during the interviews.


All recorded interviews were transcribed verbatim as soon after the interview as

possible. Transcription remained close to the spoken version and included pauses,

intonation, repetition and non-verbal aspects of the interviews. In the transcripts, pauses

are represented by underlined spaces (_____ = a pause of five seconds). Ellipses (…)

represent breaks in the narration where irrelevant text has not been included.

Even though the interviews were transcribed verbatim, it was acknowledged that the

data have already been transformed – from the live, dynamic, emotion-charged

interaction between human beings, to a textual and necessarily less ‘lifeful’ re-

presentation of that event. Features of the interaction not transferable to textual form

were lost as the transcriptions became a recorded event of a life experience (Riessman

2008).

Supplementing the Data Collection Process Methods of supplementing the data collection process included the recording of detailed

field notes and the maintenance of a personal reflexive journal in which was recorded

the researcher’s experiences, thoughts and ideas as she proceeded with the project.

Watt (2007) described the reflexive journal as a place for analysis to begin and a means

of discovering things in one’s head that one was not aware of until they were committed

to paper. In line with the recommendations of other researchers, the field notes were

written regularly, promptly and in as much detail as possible (Fontana & Frey 2003).

The notes reflected the researcher’s recognition of the importance of employing all her

senses (not just sight and hearing) whilst in the field.

The process of writing often also stimulated other thoughts, as well as providing an audit

trail of how knowledge was constructed during the project. It facilitated the identification


of preconceived notions and provided the opportunity to reflect on subjectivity to

understand how these factors influenced the research process. The reflexive journal

enabled the researcher to ensure that she was seeing more than just what she

wanted/expected to see and to be aware if she was being judgemental or evaluative or

simply presuming to think that she knew what the participants were saying without

checking. For example, the researcher was aware of her preconceived assumptions

about the social stigma and levels of distress likely to be associated with a disfiguring,

smelly, leaky permanent reminder of approaching mortality. However, rather than

prejudices, she considered these assumptions to be sensitising concepts that fostered

the development of a sensitive, mutually beneficial relationship with her participants.

Despite these preconceptions, the researcher remained open-minded towards her

participants and listened actively to what they had to say.

Analysis and Findings Analysis commenced during data collection and continued throughout the project in

simultaneity with other tasks. As noted by other authors, the preliminary analysis which

occurred during interviews and transcription was a useful process for revealing emerging

themes and identifying areas for follow-up or further investigation (Grbich 2007; Ochberg

2003). Wengraf (2001) described this preliminary stage as an opportunity not to be

missed as the exact circumstances will not occur again. In recognition of the value of

the analysis occurring during these phases, the researcher conducted and transcribed

all interviews herself so as not to miss this valuable component of the analytic process.

Thematic Analysis Thematic analysis is the process of extracting themes to illustrate phenomenological

insights. Themes are described as ‘recurrent categories that reflect the shared

experiences and practices embedded within the interview texts’ (Ironside et al 2003, p.


174) to provide the ‘flavour’ of a lived experience (Rubin & Rubin 1995). They may be

extracted either within or across individual cases (Riessman 2008). Themes are not

intended to abstract, nor to generalise, but to represent an integrated part of a larger

whole. No one theme can encapsulate entirely a lived experience but together they can

create an illustration of the experience of interest. van Manen (1990) described them as

a tool for explicating the meaning of an experience; as ‘knots in the webs of our

experiences, around which certain lived experiences are spun’ (p. 90).

Like the entire analytic process, the process of extracting themes occurred through a

number of stages. It commenced with the identification of codes which would inform the

later development of sub-themes and themes. Blaikie (2000, p. 239) described codes as

‘labels placed on discrete happenings, events, and other instances of phenomena’.

They are used to mark interesting sections of the data and may include actions, objects,

key phrases and emotions (Hansen 2006).

One researcher who has many years’ experience in analysing narratives (including

those about sensitive topics) is Riessman (1993, 2000, 2002, 2008; Riessman & Speedy

2007). She believed that the line-by-line coding typically adopted by thematic analysts

often fragmented participants’ narratives and, at times, resulted in codes that were

decontextualised and virtually meaningless. When trying to analyse long, heart-rending

narratives, she found herself ‘struggling’ to code them (Riessman 1993, p. vi). She

stated: ‘I found myself not wanting to fragment it into distinct thematic categories but to

treat it instead as a unit of discourse’ (Riessman 1993, p. 44). She believed that

‘(t)raditional approaches to qualitative analysis often fracture these texts in the service of

interpretation and generalization by taking bits and pieces, snippets of a response edited


out of context. They eliminate the sequential and structural features that characterize

narrative accounts’ (Riessman 1993, p. 3).

In her quest to find what she considered to be better models for representing analysed

discourse, Riessman (1993) reviewed the theories of a number of other narrative

researchers – including Labov, Ginsburg and Gee – and experimented with their

methods for analysing narratives. Eventually, she adopted Gee’s (1991, cited in

Riessman 1993) method of analysing narratives by stanzas (rather than line-by-line

coding) because she believed that method retained more of the participants’ meaning.

Gee (1991, pp. 23-24, cited in Riessman 1993, p. 51) had described stanzas as follows:

‘Each stanza is a particular “take” on a character, action, event, claim, or piece of information, and each involves a shift of focal participants, focal events, or a change in the time of framing of events from the preceding stanza. Each stanza represents a particular perspective, not in the sense of who is doing the seeing, but in terms of what is seen; it represents an image, what the “camera” is focused on, a “scene”.’

This method of coding by stanzas has subsequently been used by a number of

researchers when analysing narratives, including Mishler (1995), Gregg (2006) and Tsai

(2007). They have all defined stanzas in terms of a group of lines about a single topic.

As the topic changes, so a new stanza is commenced. Riessman (2008, p. 93)

described them as ‘typically four lines long (but length can vary) and about a single topic

– a particular “take” on a character, action, or other feature of the narrative – a

“vignette”’.

Following careful review of the work of all these researchers, Riessman’s (1993, 2008)

methods of coding narratives by stanzas were adopted for this study. Coding

commenced with the researcher again listening to the interviews and reading the


transcriptions to identify codes within the interview stanzas that would inform the

development of themes and sub-themes at subsequent stages. Stanzas not relating to

the malignant wound were not analysed. For example, Gerry spent a few minutes

discussing religion. Although the interview was transcribed verbatim, those stanzas

were not included in the analysis process. Numerous examples of stanzas are included

in each of the discussion chapters. However, for the purpose of illuminating the analytic

process being discussed in this chapter, two of Jemima’s stanzas (stanzas 3 and 4 are

included hereunder as examples:

‘… I notice that, um, very predominantly that I hate to be with someone sitting next to me and they can, um, and there’s an odour like that coming from the wound, you know’ (Jemima). ‘… now when I go home, it’s going to need dressing all the time and I’ll need help because I physically can’t see or manage it the way it is, you know, because of the way it’s opened, um’ (Jemima).

Once the codes had been identified, the stanzas from which those codes emerged were

grouped into strophes. These strophes were grouped into parts which eventually

became the sub-themes. Although the sub-themes were artificially delineated into

different categories, the actual delineation is seldom so definite or two dimensional and

the sub-themes typically overlapped. In the next stage of analysis, returning from the

part to the whole, these sub-themes were examined to facilitate the emergence of

overall themes that described the experiences of those living with a malignant wound or

the people who cared for them. Attention was then returned to the sub-themes which

were reviewed in light of the developing themes and overarching theme. In this way, as

the researcher moved between the parts and the whole within the hermeneutic circle

process, themes emerged that captured the nature of the experience, even if the actual

themes were not elucidated by any one participant. It was as if the researcher was


extracting the very essence of an experience, then flavouring it with various meanings to

produce the unified meaningful whole. Each time the data were viewed either as a

whole or in parts, they looked different because of the picture that was emerging and the

growing knowledge and continually changing perspective of the researcher.

To elucidate this process further, the stanzas and their codes from Jemima’s interview

are presented in Table 4.

Strophes Stanzas Codes

1 1 Prelude to the wound

2 2, 3,12, 13, 15-18, 29, 39-42, 44-49 Malodour

3 4, 5 Looking after the wound

4 6, 19 Progression of the wound

5 7, 8, 14 Treatment

6 9-11, 38, 43 Lack of information

7 20 Aetiology

8 21, 24 Outliving prognoses

9 22, 23, 26, 27, 30 Wanting to go on living

10

25 Pain

11 28 Social network

12 31, 33, 34-37 Psychosocial impact of the

wound

13 32 Financial concerns

14 39 Physical impact of the wound


15 40 Genetics

16 46, 47 The interview experience

17 50 Finalising the interview

Table 4: Stanzas and resultant codes from Jemima’s interview

Table 5 shows the strophes and their resultant sub-themes from Jemima’s interview.

Strophes Sub-themes

1-4 Prelude to the wound

5-8 Dealing with the wound

9-14 Impact of the wound

15-17 Research and the future

Table 5: Strophes and resultant themes from Jemima’s interview

A selection of the codes and sub-themes for all patients, the caregiver and some of the

nurses are presented in Attachment C. Rather than include all the patient codes, only

those that were mentioned twice or more are shown. Also in the interests of brevity, only

the codes and sub-themes for six of the fourteen nurse participants have been included.

The codes and sub-themes of the remaining nurses are available. However, it is

considered that those presented in the attachment provide a general overview of the

matters typically discussed by all nurse participants. Again, only those codes that were

mentioned two or more times have been included.


Throughout the analytic process, as the codes were identified and the themes and sub-

themes emerged, the researcher maintained contact with one or both of the project

supervisors who commented frequently upon the processes and the developing themes.

For example, the theme of ‘still room for hope’ was initially called ‘hope versus reality’ in

recognition of the conflict between patient hopes and what HCP often viewed as their

more realistic expectations. However, as the analysis continued, it became evident that

there was so much more to this concept of hope as a greater understanding developed

of how patients operationalised hope in circumstances that others have described as

devastating. As a result of this developing understanding, and in consultation with both

supervisors, this theme was renamed ‘still room for hope’.

One of the biggest challenges during the analytic process was trying to tell the stories of

the participants in a scholarly manner while still portraying the pathos expressed by all of

the participants. Although wondering at times if it was possible to achieve both goals,

with the support of the project supervisors, the researcher was eventually satisfied that

she had been successful. Part of the driving force to achieve these goals was the

affirmation of the participants in the patient cohort that their stories were important and

needed to be told so that others would understand what the experience was like. The

caregiver expressed a similar sentiment, and stated that she would not like to see

anybody else endure what she had – unsupported. Nurses were similarly resolute about

the need for the intensity of their experiences to also be recognised.

The Themes Across the three cohorts, it was obvious that malignant wounds had the propensity to

impact enormously upon the lives of those affected by them. Patients and caregivers


described living lives dominated by the demands of the malignant wound; lives that had

been violently transformed as their previous, familiar existences were suddenly and

irrevocably replaced by the new, unfamiliar and unwelcome existence. Although nurses

typically did not experience the impact with the same intensity as patients and the

caregiver, they still described malignant wounds as ‘extraordinarily impactful’,

‘confronting’ and ‘emotionally draining’. This propensity to impact significantly upon the

lives of those affected facilitated the development of an overarching theme of:

‘Malignant wounds – an intense and unforgettable experience’ which was represented

graphically as a world-shattering impact. An apt illustration might be a meteor

(malignant wound) striking a world (individual) and shattering it (figure 1). Although the

patient bears the brunt of the impact, the ripple effect could be seen to affect caregivers

(first wave) and HCP (second wave) (figure 2). Even though the succeeding waves

reduce in intensity, the first and second waves are still of sufficient intensity to endanger

the stability of the caregiver and HCP. At the same time as they were dealing with their

own effects from the impact of the malignant wound, caregivers and HCP are typically

expected to also assist the patient to reassemble the viable (but tainted) remnants of

her/his world in an attempt to salvage a meaningful existence before the pieces dissolve

forever.

Below the overarching theme, the sub-themes were classified into either physical or

psychosocial domains. Distinguishing between physical and psychosocial domains in

this way should not be perceived as a Cartesianesque attempt to delineate mind and

body. It was simply the case that the sub-themes tended to be of either a physical or

psychosocial nature. Even so, the physical sub-themes frequently overlapped and

influenced those in the psychosocial domain and vice versa.


From the sub-themes, four themes were distilled that encompassed the ‘essence’ of the

experience for patients, caregivers and nurses. The four themes are: malodour; new

mode of being-in-the-world; still room for hope; and enduring memories. The final

theme, sadly, is only relevant for caregivers and nurses. Each of these four themes will

become the major topic of discussion in the ensuing discussion chapters.


← Sub-themes (remnants) →

Figure 1: The world-shattering impact of malignant wounds.

Individual World/Existence

Physical domain

Psychosocial domain

Theme:

Malodour

Themes:

New mode of being-in-the-world

Still room for hope

Enduring memories


Figure 2: The ripple effect from the world-shattering impact of a malignant wound.

Nurses

Caregiver

Patient

MW


Methodology Conclusion This chapter has discussed the qualitative research paradigm within which this study

was conducted and argued why that paradigm was considered to be the most

appropriate. As part of that argument, major assumptions of qualitative research which

also applied to this study were highlighted. The methodology selected for this project

was phenomenology because it was believed to be an ideal vehicle to explore the lived

experience of malignant wounds. It is a methodology also recognised for its value in

researching sensitive phenomena, such as those experienced by people living with a

malignant wound or those caring for them. Of the various types of phenomenology,

hermeneutic phenomenology was selected for this study because of its focus on

interpreting a lived experience from the perspectives of those living it. A discussion on

the phenomenology of ill health was included to: exemplify phenomenological

understanding; illustrate major phenomenological assumptions which also applied to this

study; and provide a ‘sensitising’ background discussion for the major topic of this study

– an ill health experience. Included in the ethics section was a discussion on research

amongst vulnerable populations to highlight the researcher’s cognisance of the possible

increased vulnerability of some of the participants. The prevailing assumptions raised in

this discussion about research amongst vulnerable populations were also offered by the

researcher as one possible reason why she experienced difficulty in recruiting

participants into the patient and caregiver cohorts. Despite the difficulties, participants

were recruited, interviews were conducted and the data subjected to thematic analysis to

facilitate the development of themes which represented the experience from the

perspective of those experiencing it. Discussion of the manner in which the analysis

was conducted led into presentation of the four major themes, each of which will form

the major topic of discussion in ensuing chapters.


Chapter Three: Malodour It is widely recognised within existing literature that malodorous conditions have the

ability to seriously erode the quality of life of patients and those caring for them. The

difficulties experienced by people trying to live normally whilst enveloped within a putrid

odour emanating from their own bodies are beyond question. What is not so readily

recognised, however, are the many ways in which malodour may affect a patient and the

intensity with which they might impact. These effects mean that patients with

malodorous conditions are faced not only with trying to live surrounded by a pervading

and offensive smell, but trying also to cope with the many and varied negative sequelae

associated with it.

The impact of malodour is usually so pervasive that its effects are not restricted to the

physical domain but, instead, may occur in all domains of an individual’s existence. For

example, the social domain is likely to be impacted by the social stigma afforded to bad

smells. People with malodorous bodies do not conform to the contemporary Western

social norm that dictates people should not smell offensive. Therefore, when someone’s

body does not conform to these expectations, they may be judged to be deviant and

perhaps no longer worthy of full human status. All too often, this reduced status is linked

inescapably to a diminished respect for the thoughts and feelings of those no longer

considered to be fully human. Their new less-than-human status makes it easier to

marginalise them and render them blameworthy for their condition. As if dying is not bad

enough, patients with a malodorous malignant wound may also be expected to shoulder

the additional burdens of the guilt associated with contravening social norms, as well as

living with a putrid smell that prevents them ever forgetting the terminality of their

condition.


This chapter will discuss the findings from the study that highlight the impact of malodour

upon patients with malignant wounds and those caring for them. It will argue that for

those for whom malodour was an issue, the impact was extensive and saw malodour

typically being described as the most significant issue. Despite malignant wounds being

characterised by myriad distressing symptoms, it was malodour that was frequently

described by the participants as worse than any of the other symptoms, including

excruciating pain. As a result, despite numerous interventions trialled in an attempt to

make patients more comfortable, it was often only eradication of malodour that enabled

patients to regain any quality of life.

A subsidiary issue that arose during investigations for this chapter was the issue of

whether desensitisation to malodour occurs over time. As a result of the information

reviewed, this chapter will further argue that desensitisation, if it does occur, is an

infrequent occurrence. However, it is also acknowledged that this topic is an area that

will benefit from further specific research to provide a clearer answer.

Analysis of the data revealed the following sub-themes, each of which will be discussed

in ensuing sections:

i) Malodour being ‘the biggest thing’ (impact); ii) Social isolation; iii) Desensitisation; iv) Methods for combating the impact of malodour; v) Responding appropriately to patients with malodorous wounds.

Discussion of each sub-theme will commence with an introductory preamble, followed by

presentation of the perspectives of patients, caregiver and nurses relating to that


particular sub-theme. These perspectives will then be compared with discussion in

existing literature. Together, the sections will present a detailed picture of the

experience of malodour and what it might be like for those living it. The first section will

discuss the recognition amongst participants and other researchers that malodour is

often the worst aspect of a malignant wound.

‘The Biggest Thing’ Participants in this study who were affected by the malodour of malignant wounds

agreed that it was the worst aspect. Typically, they raised the topic early in the interview

and returned to it several times during the ensuing dialogue. Their perspectives are

presented hereunder.

Patients Malodour was not a major issue for all of the patients interviewed. Although there was a

malodour associated with the wounds of both Gwen and Gerry, they described it as not

significant and being well-managed by HCP. However, for Jemima, for whom malodour

was a major issue, it was emphatically described as being the most significant one.

Jemima had experienced severe and unrelenting pain in the past but even that level of

discomfort was eclipsed by the distress she experienced as a result of the offensive

malodour emanating from her own body. This significance was reflected in Jemima’s

early and ongoing reference to malodour throughout the interview and in her concluding

summary.

Jemima described her malodour as being ‘the biggest thing’. In her opening sentences,

as Jemima commenced the description of her malignant wound experience, she stated:

‘I guess the greatest thing to me is that I notice the smell of it and the odour …’ (Jemima).


Later in the interview, when asked what measures could ease the experience of living

with a malignant wound, Jemima returned to the topic of malodour yet again when she

replied:

‘… eradicating smell …’ (Jemima).

For Jemima, who had a life-long preference for sweet-smelling surroundings, her

offensive malodour caused her extreme distress. She described her embarrassment at

the thought that others could detect her malodour:

‘… I notice that, um, very predominantly that I hate to be with someone sitting next to me and they can, um, and there’s an odour like that coming from the wound, you know’ (Jemima).

About midway through the interview, Jemima had expressed elation at finally gaining

relief from her severe and unrelenting pain. She described her relief as ‘like winning the

Lotto’ and returning ‘a lot more of my own, um, independence’. Even at this level of

discomfort, though, she felt that the pain was tolerable. Malodour, however, was

another matter:

‘… it’s not that it’s causing me pain, discomfort, blah, blah, you can live with things like that. It’s definitely, definitely the consciousness and the smell … the fact that everyone associates it like bad hygiene … that is predominantly I guess my, my biggest thing’ (Jemima).

Jemima was well aware that her malodour meant that she was contravening the societal

norm that dictates that people should not have an offensive smell. However, as a

woman, the breach was even more poignant for Jemima because she believed that the

standards for women were higher than those for men. She stated that:


‘… you notice it more I guess as a woman than what you do as what a guy would’ (Jemima).

Jemima was also aware that, because of her malignant wound, she had contravened a

number of other social norms. She accepted the blame for these contraventions and

internalised her multiple failings: becoming sick; failing to recover; emitting an offensive

malodour; spilling offensive bodily contents uncontrollably into the external world; failing

to live up to Western demands that women be sweet-smelling and attractive. Perhaps

because of Jemima’s guilt at contravening so many social norms, it might not be

surprising to learn that she also shouldered the blame when chemotherapy was

unsuccessful, stating:

‘I failed chemo … I haven’t made any progression on it and they decided not to, not to, um, do any more chemo’ (Jemima).

Later, as Jemima was summarising her narrative, she returned to the topic of malodour

once again:

‘… as I said, I guess the greatest thing is the odour … If I was sitting at the table and someone’s there and thinking, you know, “are they noticing this, is this uncomfortable for them?” And, you know, all you just lift your arm up or something and you suddenly smell it and you think “oh no”, you know, it’s definitely got to be the, the odour factor … That’s the major thing … you know that that odour’s there’ (Jemima).

She finalised her interview with the following statement:

‘… always make certain the windows are open and that so it’s just, er … you are very conscious of it’ (Jemima).


In all, of forty eight stanzas related specifically to Jemima’s malignant wound experience,

nineteen related to malodour. The next most numerous issues were lack of information

and psychosocial issues, each of which was mentioned in five stanzas. In view of its

frequent recurrence and the fact that malodour was raised in the opening and closing

sentences of the interview, it was apparent that its impact upon Jemima was significant.

Or, as described by Jemima, it was: ‘my biggest thing’.

Caregiver Malodour was also a significant issue for the informal caregiver. Lucy (caregiver)

described the malodour from her husband’s (Bill) malignant wound as ‘terrible’ and

capable of permeating the entire residence:

‘The odour was terrible. It was terrible … As soon as you walked into the room, you could smell it’ (Lucy).

Lucy discussed Bill’s embarrassment at his malodour. He had always been a very clean

person and, consequently, was ashamed of the offensive odour emanating from his own

body:

‘… that was very embarrassing for him, really’ (Lucy).

Lucy described Bill’s malodour as so pervasive that she could still smell it in their

residence, even though it was three years since Bill had died.

Nurses Nurses also described malodour as being one of the worst aspects of malignant wounds

from their patients’ perspective. Similar to Jemima (patient), Celia described the odour

as ‘the biggest thing’, while Diane and Leanne described it as ‘devastating’. In the

opening sentences of her interview, Loretta identified malodour as one of the ‘main


problems’ of malignant wounds. It was typically described in terms such as ‘rotting

flesh’:

‘… it was putrid, absolutely putrid, this smell would just knock the socks off you and it was just rotting flesh …’ (Abby).

Nurses discussed the physical impact of malodour upon themselves:

‘… hard to breathe ___ as you took the wound down further, the dressing down further, the odour became, became more, you know, more fresher I suppose, far stronger’ (Loretta).

They described the malodour as pervasive and cognised that it clung to their clothing

and their bodies:

‘… typical fungating smell of the wound and you walk out of someone’s house and you think, you know, it’s like cigarette smoke. You think you go to the next house and people can smell it. It’s got like that ___ that smell of death to it … It gets up your nostrils and basically in the pores of your skin …’ (Linda).

Nurses also described instances where others had been repelled by the malodour

clinging to their person:

‘… my husband came over to say, to say “hello” and I just, I can remember him reeling back as I opened the car door and he just said “oh”’ (Celia).

For Linda, these vestiges of the malodour served to remind her of the wound even when

she was no longer on duty:

‘… and you think, even when I get home, I think I can still smell it … it puts images in your mind of the wound and at the end of the day, you’ve stopped work and then I start thinking about the wound, thinking what can I do? What can I do? … So, you’re not ___ cutting off from work’ (Linda).


The offensiveness and pervasiveness of the malodour ensured its memorability:

‘… it’s a smell that never leaves you’ (Mandy).

In summarising the perspectives of participants in this study, it can be stated that

malodour had impacted significantly upon the majority of participants in this study. Not

only did participants typically raise the subject early in their narratives, they returned to it

frequently and often included it in their concluding remarks.

‘The Biggest Thing’: Comparison With the Literature Nurses in the current study were not alone in recognising the significance of the impact

of malodour for patients with malignant wounds. Researchers in existing literature have

also declared it to be the worst aspect of malignant wounds for patients, mainly because

of the offensiveness of the malodour and the complex issues involved (Alvarez et al

2007; Benbow 1999; Carville 2005; Clark 2002; Draper 2005; Fairbairn 1994; Kalinski et

al 2005; Mercier & Knevitt 2005; Moody 1998; Naylor 2002c, 2005; Price 1996; Queen et

al 2002; West 2007; Wilkes 2001; Williams & Griffiths 1999; Wilson 2005; Young 2005).

Frequently likened to the smell of rotting flesh, the malodour emanating from malignant

wounds has been described as ‘putrid’, ‘fishy’, and like ‘spoiled meat’ (Maida, Ennis,

Kuziemsky & Trozzolo 2008). The offensive nature of the malodour typically evokes a

gagging or vomit response so strong and over such large distances that people will

avoid coming into close proximity (McGregor et al 1982; Van Toller 1994).

In contemporary ‘deodorised’ Western society, there is an expectation that bodies will

not be offensive, either visually or olfactorily (Lawton 1998; Lazelle-Ali 2007).

Unfortunately for those whose bodies do not conform to this social norm, there is little


tolerance or understanding (Lawton 1998). According to van Toller (1994), humans

have a profound and deeply ingrained aversion to malodour. Consequently, any person

whose body emits an offensive smell is immediately stigmatised and branded as

somehow less human because they no longer meet societal expectations (Young 2005).

They become different, ‘other’ because, as noted by Frank (1995, p. 31), ‘stains and

smells are stigmatising’. There is also no hesitation in placing the blame for such failures

firmly upon those responsible. As Douglas (1970) declared: ‘A polluting person is

always in the wrong. He (sic) has developed some wrong condition or simply crossed

some line which should not have been crossed …’ (p. 136). The transgressor is further

reprobated because, not only has s/he crossed the line, s/he has endangered the order

and patterns of society (Douglas 1970).

The stigmatised person, knowing that s/he has breached societal conventions,

experiences anguish and guilt at her/his failure to live up to the expected standard

(Clarke & Griffin 2008; Piggin 2003; Turner 1996), even though the ‘failure’ is beyond

their control. These feelings of guilt reinforce the internalisation of stigmatisation and the

sufferer comes to believe that s/he deserves to be stigmatised because of her/his own

personal failing (Goffman 1963). Of course, as highlighted by Hack (2003), it would be

more equitable to question the dominant ideology that dictates that only people who do

not smell are accorded full human status. Unfortunately, changing dominant ideologies

is far from easy and generally only occurs across succeeding generations (Clarke 1998;

Price 2000). In the meantime, it is easier to blame individuals than to question the

standards against which they are being judged.


Because existing literature has discussed the topic of malodour to a greater extent than

other symptoms of malignant wounds, the ensuing discussion has been divided into sub-

sections to highlight the impact on each of the cohorts participating in this study.

Impact on Patients Existing literature has recognised the ability of malodour to impact significantly on the

quality of life of patients with malodorous conditions. Apart from the offensive malodour

itself, patients frequently experience a range of negative emotions, including shame and

embarrassment. West (2007, p. 138), for example, presented the case of a patient who

felt ‘disgusted and embarrassed by the malodour from his lesion’ and would shower at

least five times every day in an attempt to alleviate it. For many such patients, malodour

and the stigmatisation attached to it are worse than even severe pain.

Comments in existing literature about the ‘devastating’ impact of malodorous wounds

upon patients and their families (Bird 2000b; Draper 2005; Hack 2003; Hampton 2008;

Haughton & Young 1995; Lloyd 2008; McMurray 2003; Moody 1998; Nazarko 2006;

Young 2005) were affirmed by sentiments expressed by participants in the current study.

Like patients cited in existing literature, Jemima (patient) described enduring

excruciating pain. Yet, for these patients, even the distress associated with such high

levels of pain was not as great as the distress caused by their malodour (West 2007).

Often, the pain being experienced by these people can only be satisfactorily alleviated

when the malodour is also eliminated (Bale, Tebble & Price 2004; Kelly 2002; Price

1996). Price (1996) presented the case of a patient who was dyspneic and in

considerable pain but it was the malodour from her malignant wound that caused her the

most distress. Similarly, it was only once his malodour had been eradicated that another

patient was able to talk about the future and about rebuilding relationships with his family

(West 2007).


Despite the significance and complexity of malodour, however, the majority of the

current knowledge base for malignant wounds is confined to their clinical management

and the biological causes of malodour. Amongst the in excess of 250 articles reviewed

for this project, very few addressed the actual experience of living with or caring for

somebody with a malignant wound. Even though a large number of authors had

identified numerous psychosocial issues likely to be associated with a malignant wound,

there was a paucity of detailed discussion on these issues. Perhaps resulting from this

lack of recognition of the totality of the lived experience of malodorous wounds, there

was also a dearth of discussion on how to manage the associated psychosocial issues.

Literature on the causes of malodour and how to combat it is substantial. Unfortunately,

the same cannot be said about the management of the psychosocial issues associated

with a malodorous wound – a topic about which we know very little and about which very

little has been written. In the majority of cases, authors merely acknowledged the

likelihood of psychosocial issues as a prelude to their discussions on the clinical

management of the physical aspects of malodorous wounds.

The psychosocial issues identified in the literature included a wide range of negative

emotions associated with the malodour of malignant wounds. As these emotions also

applied to the totality of the malignant wound experience, they will be discussed in detail

in the section on negative emotions in the next chapter. However, there were some

effects specific to malodour, including the possibility that patients may experience

nausea, loss of appetite and resultant weight loss at a time when optimum nutrition and

quality of life are important (Hack 2003; Holloway 2004; Kelly 2002; Lloyd 2008; Nazarko

2006; Price 1996; Wilson 2005). Patients with malodorous wounds also frequently

reported feeling ‘unclean’, overwhelmed (Fleck 2006) and rejected by family and friends


(Hack 2003). They also reported the curtailment of sexuality and intimacy with spouses

who were unable to tolerate the malodour (Fleck 2006; Kalinski et al 2005; Lawton 1998;

Naylor 2002b; Young 2005). Like Jemima (patient) in the current study, a participant in

Piggin and Jones’ (2007) study described how she deliberately arranged seating to

maximise the distance between herself and others in an attempt to lessen the chances

of her malodour being detected.

The presence of malodour may also heighten the misery of palliative patients as it

serves as a constant reminder of their cancer and the terminality of their condition (Price

1996). The offensiveness of any malodour may also be particularly salient for those

patients with malodorous facial wounds, for whom the cause of the smell is within close

proximity to their nasal passages (Benbow 1999; Edwards 2000).

Although not discussing malignant wounds specifically, other authors have highlighted

the distress experienced by patients with malodorous wounds or other disorders

commonly associated with bodily malodour (Edwards 2000; Hack 2003; Queen et al

2002; Williams & Griffiths 1999). They recognised the ability of malodour to erode an

individual’s quality of life and recommended that clinicians never under-estimate the

ability of malodour to wreak havoc on the lives of patients and their families (Benbow

1999; Fleck 2006; Haughton & Young 1995; Jones 2008; Price 1996). Although

discussing venous leg ulcers, participants in Jones’ (2008) study discussed their

malodour as ‘like dying flesh’ and being able to ‘smell yourself rotting away’. Similarly, a

participant in a study of individuals with traumatic leg ulcers described holding her breath

and wondering what others thought of her malodour (Alexander 2006).


Impact on Caregivers In the current study, Lucy (caregiver) discussed the effects of her husband’s malodour

upon them both. However, there was no literature with which to compare her discussion

as the effects of malodour upon caregivers has received minimal attention in the

literature. Any reports including the impact upon caregivers are typically restricted to

simply mentioning that the caregiver is also affected by the malodour. None of the

articles discussed this impact in any depth but Clark (1992) did mention that the

offensive malodour may be the lasting legacy with which the caregiver remembers the

deceased.

A small number of authors also mentioned the propensity for caregiver distress to be

triggered by pleasant aromas that may have been used in previous attempts (usually

unsuccessful) to mask the malodour (Clark 1992; Haughton & Young 1995; West 2007).

Masking aromas mentioned included vinegar, coffee, vanilla, eucalyptus, perfume and

aromatherapy fragrances (Ferris & Von Gunten 2005; Nazarko 2006).

Impact on Nurses Although by no means extensive, there was some discussion in the literature about the

impact of malodour upon nurses, both physically and psychosocially. Wilkes, Boxer and

White (2003) explored nurses’ experiences of caring for malignant wounds. They found

that nurses reported difficulties in coping with and tolerating malodour and often felt

nauseous upon entering the home of a patient with a malignant wound because of the

pervading and offensive malodour. Like the participants in this study, Edwards (2000)

and Benbow (1999) claimed that malodour lingered on nurses’ clothing and they could

still detect it hours after visiting the patient. One nurse in the study by Wilkes, Boxer and

White (2003) described the malodour as being difficult to eradicate even after removing

her gloves and washing her hands. Unlike Linda in the current study, none of the nurses


in previous studies linked the lingering malodour with constantly reminding them of work,

particularly the malignant wound and how it might best be managed. This phenomenon

is worthy of further research to determine whether it is widespread, or whether Linda’s

experience was an isolated instance.

Nurses were very aware of the distress experienced by patients as a result of their

malodour. Unfortunately, this distress frequently had a flow-on effect for the nurses. In

the current study and within the literature, nurses used the word ‘heartbreaking’ to

describe their own reactions to the circumstances of their patients. Abby, for example,

described as ‘heartbreaking’ her observation of a husband and family trying to cope with

a patient’s ‘putrid’ malodour from a malignant breast wound. Similarly, Wilkes et al

(1998) found that nurses experienced stress when they observed the depersonalisation

of patients with a malodorous malignant wound. The nurses in West’s (2007) study also

reported difficulty in coping with malodour and described it as ‘an extremely challenging

aspect’ of a patient’s care (West 2007, p. 139). They described feeling ‘heartbroken’

and discussed their struggle to provide adequate psychological support for the patient

while trying to deal with their own personal distress.

Discussion in this section has highlighted the impact of malodour upon patients,

caregivers and nurses. It was typically described as being offensive and pervasive and

often resulted in nurses remembering the malodour long after the patient had died. As a

result of its impact, myriad negative sequelae were typical. One of these, social

isolation, will be discussed in the next section.


Social Isolation Social isolation was another issue recognised in the literature as being capable of

contributing significantly to the personal distress experienced by both patients with

malignant wounds and the nurses caring for them. Nurses cited in existing malignant

wound literature described the social isolation of their patients as being one of their

greatest challenges, while nurses in the current study described it as being worse than

pain.

This thesis has already mentioned our ‘deodorised’ contemporary Western society

where offensive smells are unacceptable. One of the consequents of these expectations

is the stigmatisation and/or alienation afforded to those who do not conform, with little

thought given to the origin of the malodour. Such alienation is frequently exacerbated by

the patient themselves as they withdraw from any form of social contact in an attempt to

lessen the possibility of others detecting their malodour. Unfortunately, the alienation

occurs at a time when patients and caregivers are most in need of support from others.

What is yet to be investigated is whether patients withdraw solely because of the

malodour, or whether other issues might also contribute to the withdrawal. For example,

the stress associated with their approaching death might also contribute to the self-

imposed isolation.

Patients in this study denied that social isolation was an issue for them. However, in

view of the fact that the caregiver and many of the nurses in this study did consider

social isolation to be a major issue, it must be considered that perhaps the experience of

the patients in this study may not have been indicative of the experiences of the majority

of patients with malignant wounds. The perspectives of participants on this sub-theme

are presented hereunder.


Patients Jemima did not consider social isolation to be an issue for her. However, she still

discussed her preference for avoiding social occasions whenever possible, to avoid

inflicting her malodour on others:

‘… if the boys [sons] have got business people, I always make certain I’m not there unless they’ve’ said, they want me there …’ (Jemima).

Even then, Jemima ensured she was seated as far away as possible from the visitors

and maintained that distance despite requests from her son to move closer.

Neither Gwen nor Gerry described social isolation as being an issue related to malodour.

In fact, both were elderly, single and had few living relatives. They both described

themselves as being loners even before the advent of the malignant wound. Although

Gwen and Gerry admitted that the malignant wound had restricted their ability to

socialise, that restriction was not attributable to malodour and neither considered it to be

a major issue.

Caregiver In contrast to the patients in this study, social isolation did appear to be a significant

issue for Lucy and her husband. As his malodour became increasingly offensive and

more difficult to eliminate, Lucy observed Bill confining himself to their residence. He

was reluctant to leave it in case others were able to detect his malodour. At the same

time, fearful of the reactions of others, he began to actively discourage people from

visiting their residence:

‘And that’s a thing that he really worried about was, er, people smelling it. He used to hate people coming to visit him because he knew ___ he could smell it himself and he was embarrassed that they could smell it too ___ that was very embarrassing for him, really’ (Lucy).


As a result, both Bill and Lucy became socially isolated. Although Lucy had the option of

alleviating some of her own social isolation by visiting friends and relatives away from

the residence, she was reluctant to leave Bill alone for long periods of time as he

frequently required her assistance to manage the malignant wound and she found

herself worrying about what might have occurred in her absence.

Nurses Like the caregiver, nurses in this study also considered social isolation to be a major

issue for their patients. They empathised with their patients and experienced personal

distress, particularly in poignant cases such as those where even close family members

were either discouraged from visiting or unwilling to do so. One nurse described as

‘heartbreaking’ her observation of one patient’s husband and two teenage children trying

to cope with the malodour and the patient’s self-imposed isolation in one room of the

house:

‘… she was totally isolated from the point of view of being a marital partner, from being a parent … and she was truly living it by herself’ (Loretta).

When small children were involved, the situation was even more distressing:

‘They’d run away from her [their mother] and it must have been shocking for her’

(Lynette).

Sometimes, relatives would not visit because they found the malodour to be

overpowering. Oftentimes, the only contact was via telephone.


‘… I can remember patients where relatives would not come to visit them because of the smell and they would ring us and say “how is Dad today … I can’t come because I can’t stand that smell” …’ (Marion).

Even for those who did visit, the malodour often precluded any opportunity for physical

contact:

‘… the bad odour and not being able to kiss them or cuddle them or be affectionate and, often, if there’s younger members of the family involved, they don’t even want to go near them, the poor things’ (Diane).

However, friends and family were not the only ones reluctant to visit patients with

malodorous malignant wounds. Nurses in the current study discussed instances where

HCP also avoided such patients because they were repelled by the malodour:

‘… nurses who couldn’t even go in the room to look after these patients … saying “I can’t stand going in there, the smell’s too much for me” …’ (Marion).

Unfortunately, such reactions increased the embarrassment of the patient and added to

their social isolation:

‘… embarrassing for the patients as well because they get, they get isolated …’ (Marion).

Because she realised the importance of social contact when a person is unwell,

particularly if that person is dying, Marion went out of her way to visit those patients who

were avoided by other hospital personnel:

‘… that’s why … I made an effort to go in there more often … if someone’s neglected, I would definitely want them to feel like, especially at the end of his life’ (Marion).


At the same time that people were avoiding the person with the malignant wound, the

alienation was often exacerbated by the patient. A combination of shame,

embarrassment and the fear of the reactions of others often led to patients secluding

themselves in one part of their residence and refusing to accept visitors:

‘In the end, she was living in the garage because she didn’t want to face people’ (Megan).

Mandy spoke about one of her patients, a ‘very young man’, who refused to let his family

visit:

‘… refused to let his family into the room to see him because of the, he knew that it was a fungating tumour that had a prolific odour …’ (Mandy).

However, once the malodour was controlled:

‘… when we finally found a dressing and some appropriate things to get rid of the odour, he then let his young family and his wife in and I think he, he died about a week later’ (Mandy).

Social Isolation: Comparison With the Literature There was recognition in existing literature that social isolation was one of the sequelae

commonly experienced by people with malignant wounds. Authors discussed how

friends and family, repelled by the noxious malodour, or not knowing how to handle the

distressing situation, often reduced the frequency and duration of visits at just the time

when social support was most crucial (Clark 1992; Draper 2005; Lloyd 2008; Seaman

2006; West 2007). At the same time, fearful that their wound may leak or the malodour

become noticeable, patients often became increasingly reluctant to venture far from

home (Lloyd 2008). It was also reported that patients actively discouraged people from

visiting because they would rather endure isolation than have others detecting the


malodour which frequently permeated furniture and was detectable throughout the entire

residence. West (2007), for example, reported on a patient who refused to allow visitors

because of the offensive malodour associated with his malignant wound.

One consequent of the increasing isolation is the possibility that individuals may come to

feel discredited, devalued, rejected and dehumanised (Turner 1996). Eventually, they

may become social outcasts (Van Toller 1994).

The impact of social isolation may not be restricted to the psychosocial domain,

however, as it has also been shown to impair physical functioning. Detillion et al (2003)

cited work by a number of authors showing that the stress arising from social isolation

had a deleterious effect on immune function which impaired wound healing,

cardiovascular and cancer outcomes. They found that patients with access to a strong

support system exhibited improved outcomes across a range of morbidities.

Conversely, loneliness correlated with impaired physical and psychosocial outcomes.

There was also recognition, by nurses in the current study and in existing literature, of

the phenomenon of HCP avoiding patients with malodorous conditions. Alvarez et al

(2002), for example, reported on the tactics employed by some HCP to minimise their

exposure to repugnant odours. They described how HCP rearranged their schedules so

they could avoid visiting patients with malodorous conditions. Moreover, it is not

unknown for the isolation imposed upon people with malodorous conditions to extend

even beyond family, friends and HCP. Two authors reported on instances of malodour

affecting other patients in the hospital or hospice in which a person with a malignant

wound was an inpatient (Lawton 1998; Yi 2007). Lawton (1998) reported that patients

avoided wards containing patients with malignant wounds or requested early discharge


because they could not cope with the malodour. She observed that ‘smell created a

boundary around the patient, shunting others away’ (Lawton 1998 p. 133). Eventually,

staff at the hospice where Lawton was observing, tended to admit patients with

malodorous wounds directly into side rooms to lessen the impact of the malodour upon

other patients. Unfortunately, while protecting other patients, this action exacerbated the

isolation of the patient with the malignant wound.

Discussion in this section has highlighted that social isolation of patients with malignant

wounds is a well-recognised phenomenon, capable of adding to the already

considerable distress being experienced by patients and their families. Although some

authors have raised the possibility of people becoming desensitised to bad odours over

time, the ongoing social isolation of patients with malignant wounds tends to suggest

that, if it does occur, desensitisation is not a common occurrence. Neither does existing

literature support the likelihood of desensitisation occurring. This topic and the debate

surrounding it will be discussed in the next section.

Desensitisation There is some discussion in existing literature of the possibility of people becoming

desensitised to bad smells. A small number of authors has suggested that, with the

passage of time, patients and carers become somewhat acclimatised to the smell and

notice it less. However, there is no consensus on this issue and other authors have

declared that it is impossible to become desensitised to the odours typically emanating

from malignant wounds. From the perspectives of participants presented hereunder, it

will be noted that some participants in the current study supported this latter contention

but none supported the desensitisation theory.


Patients Desensitisation does not appear to have occurred in Jemima’s case as she left no doubt

that she remained constantly aware of her malodour. She even discussed her

perception that it was becoming worse as summer neared and the climatic temperatures

continued to rise:

‘… you notice, like, it’s heating up now, coming to summer, you know, you worry more consciously of what, the wound …’ (Jemima).

Jemima’s description of malodour as ‘my biggest thing’ and her ongoing reference to it

throughout the interview suggested that her sensitivity to her malodour had not declined

in the five months since the wound had developed.

Caregiver Although Lucy did not specifically discuss desensitisation, it appeared evident from her

discussion that neither she nor Bill became acclimatised to the smell over time. If

anything, the malodour worsened as the malignant wound progressed. Lucy’s statement

that she can still smell the malodour three years after Bill’s death suggested that she

remained fully sensitive to it during his illness.

Nurses Nurses in the study maintained that patients and caregivers did not become desensitised

to the malodour from malignant wounds unless there was a physical cause for the

anosmia:

‘A lot of the head and neck people have lost their sense of smell, especially if they have trachies or things, have had radium…’ (Abby).

However, the malodour still remained detectable by family, friends and HCP:


‘… but, um, their family do and everyone else’ (Abby).

The fact that malodour remained such a major problem for patients, caregivers and

nurses suggested that there was little evidence of desensitisation.

‘… you can’t get rid of it, can you, the odour?’ (Cindy).

Desensitisation: Comparison With the Literature Among the authors who suggested that people become desensitised to malodour over

time was Lawton (2000, p. 126) who suggested that her patient ‘appeared to have

become more or less oblivious to her own smell’. Another author (Moyle 1998) stated

that patients quickly became acclimatised to the odour. On the other hand, West (2007,

p. 138) presented the report of an anal cancer patient who was ‘fully aware of his

malodour and frequently apologised for the smell’. It was also suggested by Fleck

(2006) that the inability to acclimate to malodour could possibly result in an even greater

sensitivity to it. Finlay et al (1996) contributed to the argument when they suggested that

HCP frequently assumed that patients had become used to and unaware of the smell

from their lesions. That HCP did not often follow up their assumptions with patients to

determine whether they were correct was unfortunate because the findings of Finlay et

al (1996) clearly demonstrated that patients remained acutely aware of their malodour.

Van Toller (1994) acknowledged that there is some deterioration in the human sense of

smell as people age (presbyosmia) which might result in some odours being less

detectable amongst the elderly. However, he also declared that people never become

desensitised to the putrescine and cadaverine emitted from malignant wounds and even

the elderly would continue to detect them. Putrescine and cadaverine are the

compounds responsible for inducing the vomit or gagging reflex often experienced when


people detect the malodour from a malignant wound. By-products of the bacteria

responsible for catabolising amino acids, these pungent compounds are frequently found

in abundance in the rotting flesh of animal carcasses and human corpses and are

responsible for their distinctive odour (Van Toller 1994).

If desensitisation is unlikely, consideration should be given to alternative theories.

Goode (2004) and Finlay et al (1996) recommended that consideration be given to the

possibility that patients remain excruciatingly aware of their malodour but are too

embarrassed to discuss it. Alternatively, patients might report lower malodour scores

because admitting to the intensity of the malodour is equated with acknowledging the

seriousness of their condition.

In view of the foregoing discussion and the lack of support provided by participants in

this study, it is the contention of this thesis that it is unlikely that desensitisation will occur

to the malodour emitted from malignant wounds. Evidence upon which this contention is

based is summarised below:

i) No participants in this study reported becoming desensitised to the malodour

from malignant wounds.

ii) Already recognised as a major problem within existing literature, malodour was

also described by almost every one of the eighteen participants in this study as a

major problem. If desensitisation had occurred, malodour would not be such a

big issue.

iii) The well-recognised social isolation of patients with malignant wounds suggests

that desensitisation, if it does occur, is not a frequent occurrence.


iv) Very few authors supported the desensitisation theory. Those that did support

the theory did not pursue alternative explanations for the apparent

desensitisation.

v) Numerous authors have described patients, caregivers and HCP remaining

acutely aware of the malodour until the death of the patient.

The argument that desensitisation is an unlikely occurrence for those living with a

malignant wound strengthens the obligation of HCP to reduce malodour and enhance

the quality of the remaining life of patients and their caregivers. However, it is also

recognised that, because of its pervasive and persevering nature, the eradication of

malodour is a complicated process, frequently involving the trial of a number of different

methods before success is achieved. The next section will briefly discuss attempts to

reduce the impact of malodour from malignant wounds.

Dealing With the Malodour Participant perspectives for this sub-theme are presented from patients and nurses only

as the caregiver did not express any comments about attempts to deal with malodour.

Patients During the interview, Jemima discussed the lengths she went to in an effort to prevent or

lessen the detection of her malodour by others:

‘… I’m very much conscious of it … I sit a bit further away and, or make certain that windows are open always on that side, like, I wouldn’t not have the windows open if they were going to check my breasts … that’d be the first thing I do. So I changed, I changed myself I guess …’ (Jemima).

Jemima also talked about some of the interventions that had been trialled to combat her

malodour. The only intervention that had achieved any success was the application of


highly absorbent dressings in such a way that a complete seal was achieved around the

wound. Even then, the malodour became instantly detectable as soon as the seal was

broken.

‘Whereas the moment you lift a corner of it and you, you know, you know …’ (Jemima).

Nurses Nurses recognised the importance of controlling malodour as they strove to enhance the

quality of life of the patient and family:

‘… odour was unbelievable and managing the odour was one of the primary things that we needed to do to make it quality of life for the staff in the ward, for himself and for his visitors’ (Roxanne).

They worked hard to find a dressing regime that would control the malodour:

‘It must be very embarrassing for them and that’s why we try very hard to get a dressing that ___ will be odour-proof for our patients’ (Mandy).

Even so, Leanne (nurse) admitted that much of what they did was based on previous

experience, intuitive guesswork and trialling new regimes:

‘A lot of it’s trial and error because what works for one person may not obviously work with the other’ (Leanne).

Some nurses used stoma products to try and contain the malodour and exudate within a

sealed environment. Other nurses tried a wide range of dressings. Charcoal and silver

were found to be of some benefit occasionally but their expense meant that usage was

often rationed. The only intervention recording a reasonable level of success in

eliminating or reducing malodour appeared to be the antibiotic metronidazole. However,


even metronidazole was not effective in all cases. Other interventions mentioned by

nurses in this study included: peppermint oil; povidone iodine; deodorisers; vanilla; and

kitty litter.

Apart from trying to reduce the impact of malodour upon the patient, nurses also

discussed their attempts to reduce its impact upon themselves. As discussed

previously, nurses felt that the malodour had permeated their bodies and clung to their

clothing. As a result, they felt the need to scrub themselves and their clothing to remove

the malodour:

‘… as soon as I got home every day, you’d have to take everything off, wash everything in Napisan, shampoo and had to, you know, keep … all the car seats sprayed because the odour was just horrendous’ (Celia).

To avoid the malodour being detected by others, some nurses took a change of clothes

with them when they were visiting patients with malignant wounds:

‘I actually used to take a change of clothes, a new uniform after I’d seen her first thing in the morning and go and change somewhere … and just put it in a bag because the odour was so bad …’ (Celia).

Other nurses adopted strategies such as leaving their patients with malignant wounds to

the end of their shift:

‘I’d have to nearly always leave her to the last client which was around midday, oneish because you do have the smell in your clothes and if you have to go from that to another client, er, it’s a little hard …’ (Diane).

Some nurses adopted physical measures to reduce the effect of malodour upon

themselves:


‘… I put Vicks up my nose to go in …’ (Abby).

Others even altered their breathing patterns while dressing a malignant wound in order

to avoid inhaling the noxious fumes:

‘… you sort of have to [takes a deep breath in] take a deep breath and breathe out … you’d do something [takes another deep breath] … it was necessary to do that, otherwise you’d be passing out from not getting enough oxygen’ (Loretta).

Dealing With the Malodour: Comparison With the Literature Existing literature contained many experiential reports of managing malodour associated

with malignant wounds, and some of the common clinical management techniques were

outlined in Chapter One. This section reviews the literature relating to the effects upon

nurses as they strove to deal with the malodour but frequently failed. The ensuing

discussion is restricted to nurses only as there were few accounts in the literature of

attempts by patients or caregivers to combat malodour.

Of the myriad challenges associated with caring for patients with malignant wounds,

malodour is typically renowned by clinicians as being the most difficult to treat and for

persistently resisting the majority of efforts aimed at eradicating it (Alvarez et al 2007;

Bates-Jensen, Seaman & Early 2006; Finlay et al 1996; Grocott 2002, 2003; Hampton

2008; Kalinski et al 2005; Moody 1998; Price 1996; Schiech 2002; Vollstedt 2000; West

2007). Even so, the importance of trying cannot be over-stated. Haughton and Young

(1995, p. 959) were emphatic in their discussion of the responsibility of nurses to use all

their skills to assist patients to cope with ‘the pervading legacy of a malodorous wound’.


Both in the current study and within the literature, nurses were aware of the distress

being experienced by their patients with malodorous malignant wounds. Because they

recognised their responsibility to at least attempt to ameliorate that distress, nurses went

to great lengths to try and eliminate the malodour and improve the quality of life of

patients and their families. Often, it was only this creativity and innovativeness that

resulted in successful reduction of malodour. In many other instances, however, even

the best efforts of nurses were unsuccessful and they were left with feelings of guilt,

inadequacy and frustration because they had been unable to assist their patients in

ways that were acceptable to them. They often felt as if they had ‘let the patient down’

(Wilkes, Boxer & White 2003, p. 76). These psychosocial responses of nurses to their

inability to effectively manage their patients’ malignant wounds will be discussed in

greater detail in the next chapter, along with strategies for managing them.

Apart from the psychosocial impact, nurses were also affected physically by malodour.

In the current study, nurses discussed methods they had employed to minimise the

physical effect of patients’ malodour upon themselves. These methods included:

masking the odour; altering their rosters; changing their clothing; and scrubbing

themselves, their clothing and motor vehicles after visiting a patient with a malodorous

malignant wound. One nurse even described instances where she had altered her

breathing in an attempt to reduce her inhalation of the malodour and its consequent

gagging reflex. However, there was little discussion in the literature against which to

compare the physical impact or the methods used to combat it. The only two instances

where this issue was mentioned were handwashing in an attempt to remove the

lingering smell (Wilkes, Boxer & White 2003); and one nurse who sprayed lemon aerosol

in front of her when entering the ward of a patient with a malignant wound (Lawton


1998). This issue of the physical impact of malodour upon nurses, together with their

attempts to overcome it, is an area where further research might be enlightening.

It was clear that nurses recognised the ability of malodour to erode their patients’ quality

of life and diminish their sense of personhood which frequently resulted in social

isolation. In instances where malodour was controllable, many of the other symptoms of

the malignant wound also became less severe and the patient more willing to resume

social contact as they considered themselves to be worthy once more of participating in

relations with others. However, when it was not possible to control the malodour, nurses

frequently felt personally guilty and were distressed at the impact of the malodour on

their patients’ sense of self. They were cognisant of the damage that might be caused to

their patients by this diminished personhood, particularly as it was occurring at a time

when quality of life and relationships were paramount. As a result, nurses strove to

maintain the personhood and dignity of patients with malignant wounds. In so doing,

however, they frequently found themselves struggling with the issue of how to respond

to malodour. They wanted to respond sensitively but were also cognisant of the need for

honest communication if the patient/HCP relationship was to be effective. The next

section will discuss the difficulties experienced by HCP as they attempted to combine

sensitivity and honesty when communicating with patients with malignant wounds.

Responding Appropriately Participant perspectives in this section are presented from nurses only as this sub-theme

was not raised by either patients or the caregiver.

Nurses Nurses discussed the tension frequently experienced when considering how to respond

to their patients’ malodour. The majority of nurses believed that they should be honest


with their patients and not deliberately mislead them. Even so, they admitted trying to

lessen the extent of the malodour for the sake of the patient:

‘… attending to a dressing and trying to be all normal … it’s all fine, no worries, Mr S, it’s all beautiful, no worries …’ (Barb).

At times, patients or their families had requested nurses to subdue their responses:

‘… we were asked to try to control our facial expressions because she felt so, um, overwhelmed …’ (Loretta).

In this instance, the nurse complied with the request because she believed she was

acting in the best interests of the patient. On other occasions, however, nurses believed

that patients were asking direct questions about their malodour not because they wanted

truthful answers but because they wanted to hear that it was not detectable. In these

instances, nurses did not want to dash patients’ hopes but neither did they want to be

dishonest. They described these situations as like walking a tightrope as they attempted

to determine what would be the most appropriate response in the circumstances.

Although specifically discussing response to malodour in this section, this issue of

balancing patient hopes against what HCP considered to be a more realistic outlook also

represents a major theme of this study. As such, it will be discussed in greater depth in

an ensuing chapter.

Responding Appropriately: Comparison With the Literature The issue of responding appropriately was also recognised in the literature which

contained reports of nurses struggling with decisions about how they should react when

treating patients with malodorous conditions. Lee et al (2006) recommended that

clinicians not react to the malodour to avoid offending or alarming the patient. Similarly,


Lloyd (2008) cautioned that displaying feelings might cause concern and anguish to the

patient and family. However, other authors have discussed reasons why a subdued

response may not always be the appropriate one.

While recognising that any response to malodour should be sensitive, it may also be

important for some patients that the presence of malodour is recognised and raised for

discussion by a clinician (Bertero 2005; Rumsey, Clarke & Musa 2002). If an issue is

not raised by the ‘experts’, patients may judge that issue as being not worthy of

discussion. They may assume that they are ‘making mountains out of molehills’ and the

issues, although causing them extreme distress, would not be welcomed by the busy

clinician. As noted by Bertero (2005), some patients need permission, or at least need

to know that their issues are important, before they are prepared to discuss them. In

these instances, an open and honest discussion of their malodour could be viewed as

giving patients permission to discuss the issues that were important to them.

It is also possible that attempts to minimise the effects of a patient’s malodour might be

interpreted as a lack of acknowledgement of the intensity of the experience for the

patient (Young 2005). Patients may feel unimportant and under-valued as a

consequence of others failing to recognise their pain and discomfort (Cook 1999).

Aranda (2001) illustrated this theme with the example of a woman who was confused

and felt isolated because those around her pretended that her wound did not smell, even

though she was painfully aware that it did. This ‘polite’ repression of her concerns

prohibited her from discussing the malodour with HCP and discussing ideas she had for

reducing it.


If clinicians are not honest with their patients, the implication is that they are being

dishonest. In these instances, the patient may wonder what other falsehoods are being

fed to her/him. Even though this ‘bending of the truth’ may be well-meaning and aimed at

avoiding harm or distress to the patient, it still constitutes dishonesty and, possibly,

paternalism (Costello 2004). Moreover, patients may not be the only ones to suffer in

such less-than-honest interactions. Clinicians hiding their feelings beneath a patina of

normality may be causing detriment not only to the clinician-patient relationship but to

themselves as well as they cannot conceal from themselves the inauthenticity they are

introducing into their relationship with the patient (West 2007; Wilkes, Boxer & White

2003).

Probably because of the complexities and individualities involved, there was little

guidance in existing literature regarding how HCP should respond to malodour.

Perhaps, as always, the answer lies in getting to know the patient and understanding

her/his feelings towards the malignant wound. By developing a trusting relationship

between HCP and patient, the clinician will come to know and understand the level and

type of information required by the patient and family and the appropriate manner in

which it should be delivered.

Although dated, Fairbairn’s (1993) suggestion – of discussing these matters in an

honest, realistic and sensitive fashion – is still relevant. Support for this approach was

also provided by Seaman (2006) who suggested that it is more helpful for clinicians to

sensitively acknowledge the presence of malodour and then discuss how it will be

managed than to deny or minimise its effects. Another example of an appropriate

response was provided by West (2007) who reported a conversation between a senior

nurse and a patient with an offensive malodour emanating from his anal malignant


wound. By sensitively exploring the patient’s response to the malodour and what he

thought about it, she was able to discern the factors that were causing him the most

angst and to deliver appropriate information in a sensitive manner. Using these

methods, nurses were able to provide psychosocial support through the simple act of

listening to their patients, allowing them to tell their stories and validating their right to do

so and to feel the way they did.

Discussion in this sub-theme has also explored the emotional labour that nurses perform

as they struggle with decisions about how to respond appropriately to their patients with

malodorous conditions. This concept of emotional labour has arisen in several sub-

themes of this study. It will be discussed in greater detail in Chapter Four.

Conclusion The preceding discussion has demonstrated that malodour is often recognised as the

worst aspect of a malignant wound, frequently being described as even worse than

excruciating pain. Malodour was also recognised by HCP as being one of the most

difficult symptoms to treat and as being responsible for increasing the social isolation of

patients with malodorous conditions. Although a number of methods of reducing

malodour were reviewed, only the antibiotic metronidazole appeared to be noticeably

successful. However, it is not just the malodour itself that causes problems; more often,

it is the meaning of the malodour for each individual patient that causes the most

distress. As such, when caring for a patient with a malodorous malignant wound, it is

important to remember that the effects will be more than physical. Unfortunately, the vast

majority of existing literature is restricted to the clinical management of physical issues

and, although the existence of psychosocial issues is recognised, there is very little

literature on how to address them. Attributed to this lack of information was the


phenomenon, noted both in the literature and in this study, of HCP avoiding or denying

the psychosocial issues of their patients with malodorous conditions because they were

unaware of the best methods of dealing with them. Instances were also reported of HCP

avoiding patients completely because they found the malodour to be so repugnant.

Apart from marginalising them, such action also served to disempower patients by

reducing their opportunities to discuss with HCP their malodour-related issues and

methods by which they might be resolved. The situation is even worse for lay caregivers

as there is no literature on the impact upon them of caring for somebody with a

malignant wound. Consequently, there is little recognition that the impact of a malignant

wound is capable of violently transforming not only the being-in-the-world of the patient

but that of lay caregivers also. It is upon this concept of a new mode of being-in-the-

world that discussion will be focused in the next chapter.


Additions to the Literature 1. Although the possibility of

desensitisation to malodour has been debated in the literature, none of the eighteen participants in this study subscribed to this possibility. It seems more likely that, if desensitisation does occur, it is an infrequent occurrence and may be caused by physiological deficits (anosmia).

2. Discussion of the difficulties faced by nurses when attempting to overcome the physical effects of malodour, often described as pervasive, when treating patients with malignant wounds.

3. All of the information presented from the perspective of the caregiver is new as this study is the first to explore the experiences of lay caregivers caring for somebody with a malignant wound.

Substantiating Existing Literature 1. Previous studies have recognised that

malodour is often the worst issue for patients with malignant wounds and the one causing the most difficulty for nurses.

2. Although myriad interventions are trialled in an attempt to improve the quality of life of patients with malignant wounds, it is often the case that improvements can only be obtained once malodour is controlled.

3. Social isolation is frequently a sequelae for patients with malignant wounds as others are unsure how to react or unwilling to be exposed to the noxious odours. At the same time, the patients also tend to withdraw as they are embarrassed by the odours emanating from their own bodies.

4. Nurses experience myriad psychosocial effects when caring for patients with malignant wounds.

5. One of the psychosocial effects for nurses occurred as they tried to decide how to respond appropriately to their patients’ malodour. They wanted to be honest with their patients but without exposing them to the full horror and repulsiveness of their wounds.

Implications for Future Research 1. Psychosocial issues for patients arising from the malodour associated with malignant wounds. 2. Strategies for addressing the malodour-related psychosocial issues of patients with malignant

wounds. 3. Impact of malodour (physical and psychosocial) on lay caregivers caring for somebody with a

malignant wound. 4. Strategies for addressing the malodour-related issues of lay caregivers caring for somebody with a

malignant wound. 5. Physical impact of malodour on nurses. 6. What is the propensity for lingering malodour to remind nurses of work, even when they are off

duty? 7. Methods used by nurses to address the physical impact of malodour. 8. Investigation into the likelihood of desensitisation occurring amongst patients with malignant

wounds and those caring for them.

Contributions of this Chapter


Chapter Four: New Mode of Being-in-the-World Apparent very early in the collection of data and their subsequent analysis was the

extent of the impact of a malignant wound upon the lives of those living the experience.

Patients and caregivers described the impact of a malignant wound upon their existence

as being so intense that they were suddenly thrust into new relationships with

themselves, with others and with the world within which they existed. In short,

everything had changed and they found themselves confronted with a new mode of

being-in-the-world.

It will be argued in this chapter that the impact of a malignant wound was typically

perceived as ‘world-shattering’ by the patients and caregiver as the old and familiar

relationships and modes of existence were violently disintegrated and replaced with new

and unfamiliar ones. Participants felt they had little input into this new mode of being. It

was as if their lives were suddenly being dictated by the malignant wound and its

demands. Such radical changes frequently resulted in feelings of loss, confusion,

disbelief and distress as victims mourned their old, familiar mode of being-in-the-world.

Although some attempted to come to terms with the new mode and its concomitant

unfamiliarity and threats, such adaptations generally take time – a commodity that was

typically in short supply for the patients with malignant wounds. The impact on nurses

was noted to be generally less severe than that reported by patients and caregivers.

Even so, they still described effects that suggested that their being-in-the-world had

been, and was continuing to be, affected by the malignant wounds of their patients.

Serving as a preface to the presentation and discussion of data in this chapter, will be an

introductory discussion on the concept of being-in-the-world. Following on from this


introductory prelude will be discussion of the sub-themes revealed in the analysis of the

data:

i) Impact of the new mode of being-in-the-world; ii) Seeking information; iii) Delaying presentation; iv) Traumatic experiences; v) Negative emotions; vi) Finding benefit.

Discussion on each sub-theme will commence with an introductory preamble, followed

by presentation of the perspectives of patients, caregiver and nurses. These

perspectives will then be compared with discussion in existing literature. Together, the

sections will present a detailed picture of how the being-in-the-world of participants was

changed by the malignant wound.

Another concept that was not specifically articulated by the participants, but which was

evident in their discussion, was that of emotional labour. Initially coined in 1983 in

Hochschild’s study of flight attendants, emotional labour refers to the work of those who

are required to display certain emotional states which are likely to be inauthentic, while

simultaneously suppressing the emotions that they are genuinely feeling. It was evident

in this study that nurses were performing emotional labour when they discussed themes

such as ‘responding appropriately’ (discussed in Chapter Three), ‘negative emotions’

(discussed in this chapter) and ‘answering the difficult questions’ (discussed in Chapter

Five). In recognition of this significance for nurses caring for patients with malignant

wounds, the concept of emotional labour has been included for discussion in this

chapter.


Being-in-the-World Being-in-the-world is an existential term often used in phenomenology and introduced

into popular usage by Heidegger. It refers to the way in which people exist, interact with,

and are connected to, the world in which they already and always live (Draucker 1999;

Earnshaw 2006; van Manen 1990). An individual’s being-in-the-world represents the

totality of their existence, incorporating the physical, psychosocial and spiritual domains

of that existence. The words are hyphenated to indicate their interconnectedness and

interdependence (Wilding & Whiteford 2005).

The being-in-the-world of each one of us is influenced by our worldview. The concept of

worldview has already been discussed in Chapter Two but a brief overview is provided

below. Cagnetta and Cicognani (1999) described worldviews as cognitive schema

evolving throughout an individual’s life and containing the assumptions and paradigms

for the progression of that life. It was also noted that Riessman (2008, p. 139) had

referred to them as ‘tortoise shells’ that we carry with us throughout life. It is through this

unique and personal worldview, that events are interpreted by each individual to arrive at

a meaning that is similarly unique and personal (Czarniawska 2007). The construction

of one’s worldview is an ongoing process that occurs at a gradual pace and somewhat

sub-consciously while things are running smoothly. However, if a major trauma – such

as serious illness – is encountered, the process of worldview construction becomes

deliberate and foregrounded. Its consequent effect on that individual’s being-in-the-

world may be profound (Becker 1997; Tedeschi & Calhoun 2004).

Our bodies represent the physical manifestation of our cognitive worldview and its

influence on our existential being-in-the-world. Because of this inextricable link between

our cognitive worldview, our existential being-in-the-world and our physical bodies, any


physical defect of the body is, in turn, likely to also impact upon the person’s

existentiality – their being-in-the-world. Depending upon the extent and visibility of the

defect, it may result in an altered body image (ABI) and/or altered self-perception. Both

these concepts have already been discussed in Chapter One where they were

recognised as attributes influencing the construction of each individual’s being-in-the-

world. Also recognised in that chapter was the need for further research into ABI and

self-perception in the context of malignant wounds.

This research will demonstrate that when an individual has a physical defect as

overwhelmingly confronting and intrusive as a malignant wound, the impact upon their

being-in-the-world is likely to be similarly overwhelming. Adapting to a new mode of

being-in-the-world is usually a complicated and lengthy process as the affected

individual wrestles with the enforced changes and their reactions to those changes

(Telford, Kralik & Koch 2006). When the changes are as profound as those imposed by

a malignant wound, successful adaptation may be an impossibility.

Impact of the New Mode of Being-in-the-World This first sub-theme discusses the impact of the malignant wound upon participants’

being-in-the-world. The discussion is also intended to be an overarching illustration of

the impact of the malignant wound, prior to discussing some of the issues in more detail.

Every person interviewed for this study described malignant wounds as impacting

significantly upon their lives. For the patients and caregiver, the impact wrought

profound, unwelcome and irrevocable changes to the way they lived their lives; to their

being-in-the-world. Coming to terms with these changes was a challenge met with

varying degrees of success. For the nurses, the impact was typically less profound, but

they still described it as significant and often leading to changes in themselves, both


personally and in the way they practiced nursing. The perspectives of participants on

this sub-theme are presented hereunder.

Patients One of the major aspects of the changed mode of being-in-the-world for patients related

to their perception of the wound representing the end of their lives:

‘So, it’s, it’s, er, the natural instinct to want to live isn’t it? And I … you get a little depressed when you think your days are … are nearly over … I’m 87 … That’s only 3 years off 90, another 10 and I’d be 100 wouldn’t I?’ (Gerry).

Unfortunately, not only were their lives coming to an end, but there were myriad

unwelcome changes to contend with in the meantime. Prior to developing his malignant

wound, Gerry had been a very fit and healthy man who had always followed a healthy

lifestyle. He did not like the new mode of being-in-the-world forced on him by the

malignant wound. Gerry had become a very unwell man, unable to do anything for

himself and trying to cope with a malignant wound that covered at least half of his head

and had been infested with maggots on four occasions.

Like Gerry, the wound representing approaching death was also a significant

psychosocial factor for Jemima. She stated quite emphatically that, at 56, she was too

young to be dying, particularly in such an unpleasant manner. There were still so many

things Jemima wanted to do and she wanted to go on living. Like Gerry, not only did the

malignant wound signify approaching death, its presence prevented Jemima from

enjoying the time she had left:

‘There’s things I haven’t done and I haven’t achieved and there’s things I wanna do and my family haven’t …I don’t feel my life’s where it should end or finish at the moment …’ (Jemima).


Jemima did not like the changes wrought by the malignant wound upon her previous

mode of being-in-the-world. Previously, she had been hard-working, self-supporting,

cognitively alert, fit and healthy. Now, since the advent of the malignant wound, Jemima

was extremely unwell, in pain and could do almost nothing for herself. Worst of all was

the offensive malodour from her malignant wound which caused her extreme distress.

Her prior excruciating levels of pain had recently been brought under control but at what

she considered to be a cost to her previously alert cognition. She attributed her current

dull and confused cognition to the large doses of morphine required to control her pain.

Jemima described her confusion and inability to apply herself to anything for more than a

few minutes:

‘… the morphine zaps my head … I get so confused and muddled up … there’s nothing that I can really sit down and apply myself to, um, either my hands are shaking … I just sit at something for two minutes and then I want to cook or I want to walk around or I don’t know what I want to do and then I want to do gardening and then I can’t do that because I can’t get down, the pain … my head’s not so good, you know, it belongs to someone else. I’m sure it does’ (Jemima).

Jemima’s fatigue and cognitive impairment prevented her from managing the businesses

she had owned for a number of years. She felt that all her energy was being expended

on trying to cope with the effects of the wound, whereas she would have preferred to

concentrate on making the most of the time remaining to her. Being unable to manage

her businesses also meant that Jemima experienced financial difficulties. As a

consequence, she was forced to rely on welfare which caused her shame as she had

always worked prior to developing the malignant wound:


‘I always worked in the past and looked after myself, you know, but now I have to try and manage on disability allowance which is ___ about $602 or something a fortnight’ (Jemima).

Exacerbating this situation for Jemima was the associated loss of independence as she

now had to depend on others for assistance because the wound had robbed her of her

ability to care for herself, particularly now that the demands associated with caring for

the malignant wound were so intense. Loss of independence was also a significant

factor for Gwen. Previously fiercely independent and immensely proud of her ability to

manage on her own, Gwen expressed her frustration at no longer being able to do so

and having to rely on others:

‘I hate to admit it but I couldn’t have managed without help from my friends … I miss being able to drive. It is another thing that has impacted upon my sense of independence’ (Gwen).

Caregiver Like the patients in this study, Lucy (caregiver) was also impacted by a malignant wound

to the extent where she felt that her being-in-the-world was changed forever. She was

forced to watch as her previously passive and gentle husband transformed into

somebody who was verbally aggressive and frequently angry.

‘He was always a very docile sort of person … He was very, very placid person but as soon as he got that, he turned, sort of, I don’t know, his whole character changed … it changed his whole life, that did. And he was sort of always, always very independent person …’ (Lucy).

Lucy no longer recognised her husband of fifty years and described her new mode of

being-in-the-world as ‘like living with a stranger’. As Lucy stated, the malignant wound

had impacted violently upon both their lives and continued to dominate them both with its

constant demands:


‘… got up many times through the night of course. I never got much sleep … up and down for him all the time … You’d no sooner clean him up and, then, you’d have to clean him again, wash all the clothes, you know, I don’t know how much washing I did those days. Terrible … showering him all the time, then helping him to dress him and, then doing his, um, dressings all the time, it was a full time job …’ (Lucy).

Although Lucy described her caregiving as a ‘full time job’ on two separate occasions,

perhaps ‘full life job’ might have been a more apt description. Lucy felt that she had no

time for herself in this new mode of being-in-the-world. Instead, all her time was taken

up with catering to the ever increasing demands of the malignant wound. Even on those

rare occasions when she was not directly involved with caring for the wound, it was still

dominant in her thoughts:

‘… when I went out, I mean, I had to hurry up and not stay out long, so, in case anything happened when I was out, you know … when it got worse, I didn’t go anywhere really’ (Lucy).

Lucy admitted that the impact of the malignant wound upon her being-in-the-world had

been immense:

‘Well, it was starting to get me really down … I don’t know how I coped’ (Lucy).

Some of the nurses in this study agreed that the impact on caregivers was often

immense:

‘The more difficult the wound, yes, the more difficult it is for any caregiver … their whole life goes too because ___ comes around the wound, keeping the place clean and odour free and the person comfortable, so their whole life gets changed on a ___ five cent piece as well’ (Loretta).


Nurses Although the impact of malignant wounds was not as intense for nurses as it was for

patients and caregivers, it was still significant:

‘… because I was a new grad, just in the first twelve months, it was pretty horrific … really was, for me’ (Janice).

‘… sixteen year old [patient] that we had, that was very devastating, very devastating … that one, that one was devastating to us. The day we found out what had happened, I don’t think there was a dry eye … we’re only human’ (Mandy).

Nurses were emotionally affected as they empathised with family members who could

see and smell their loved one ‘rotting away’:

‘… I think it takes a big toll on a family to see that rotting flesh …. Look at them, they’re rotting … They see it getting bigger and bigger … they watch …’ (Abby).

They were also affected by the experiences of their patients:

‘… it’s horrific for them to get maggots … they know that they’re there and they can feel them crawling and that’s, that’s just a horrible, horrible thing for someone to know that they’ve got maggots crawling in their head, um, and it’s very, very nasty … That’s an awful thing for families and, yeah, that’s pretty cruel’ (Abby).

The social circumstances of their patients often also caused emotional angst for nurses:

‘… I guess the fact that her, her age and the two small children and, um, yeah, it was the whole situation was just … pretty um, just generally extremely upsetting, really, really, upsetting …’ (Celia).

‘… really young people with an end stage diagnosis and tiny children and complex psychosocially and just, you know, little kiddies and, so, those things for me would impact me professionally and personally …’ (Barb).


One nurse was so affected by her patient’s distressing condition that she perceived the

development of physical symptoms of her own:

‘… I developed some physical symptoms where I swore I had a lump beneath my arm and I was at the doctor’s and “oh, you’re here again”. “No, just check”. I was sure that, you know, you, you start to sort of, ‘cos there for the grace of God go I, basically’ (Lynette).

Comments from participants in this study have left no doubt that the impact of a

malignant wound upon an individual’s being-in-the-world is typically overwhelming. As

will be shown in the ensuing discussion, these comments align with similar sentiments of

pervasiveness and intensity expressed by participants in other studies.

Impact of the New Mode of Being-in-the-World: Comparison With the Literature The literature that is available on the impact of malignant wounds typically described

them as having a devastating or traumatic impact upon the lives of patients and those

who care for them (Goode 2004; Grocott 2000a; Lazelle-Ali 2007; Lloyd 2008; McMurray

2003; Naylor 2005; Pudner 1998; Schulz et al 2009; Vandevelde 2005; Wilkes 2001).

They were described as dominating the lives of those affected. Like Gerry and Gwen in

the current study, participants in other studies also cognised malignant wounds as a

visible and inescapable reminder of their approaching death (Bird 2000b; Goode 2004;

Grocott 2003; Hampton 2004; Lo et al 2008; Naylor 2002b; Neal 1991; Piggin 2003;

West 2007; Young 2005).

The patients and caregiver in the current study blamed the malignant wound for forcibly

transforming their previously familiar being-in-the-world. Participants in other studies

have reported similar experiences and found themselves ruminating for extended

periods of time over the distressing nature of their loved one’s death and the changes


wrought by the malignant wound on the lives of those involved. As if dying was not bad

enough, to be dying in such a horrendous manner led many patients and their caregivers

to wonder if they were being punished (Lawton 1998). The caregiver in the current study

stated that her husband thought he was being punished but he did not know why.

There was some discussion in the literature on the impact of malignant wounds on

patients and nurses. Therefore, in the interests of clarity, the ensuing discussion has

been separated into perspectives of patients, caregivers and nurses.

Patients Reports within the literature have described significant symptom burdens associated

with malignant wounds and entreated clinicians to never under-estimate the seriousness

of their impact upon those affected. Physical symptoms commonly identified within the

literature were: malodour; pain; exudate; pruritus; bleeding; uncomfortable and

asymmetrical dressing; fatigue; anorexia; nausea. A wide range of negative emotions

associated with the new mode of being-in-the-world was also identified and will be

discussed in an ensuing section. Even so, the majority of the literature discussing the

impact of malignant wounds was presented from the perspectives of HCP. Only three

articles were located that discussed the impact from the perspectives of patients. These

articles were included in the literature review (Chapter One) but are summarised

hereunder to reinforce the impact of malignant wounds as perceived by patients.

Lund-Nielsen, Muller and Adamsen (2005a) investigated the psychosocial issues of

female breast cancer patients with malignant wounds. The women in the study

described the impact of the malignant wound upon their being-in-the-world in terms of

anxiety about leakage, altered body image, low self-esteem, reduced femininity and


social isolation. They also reported feeling powerless because their bodies were rotting

away and there was nothing they could do about it.

Piggin and Jones (2007) noted that there was minimal information on the lived

experience of malignant wounds and what the impact might be upon the being-in-the-

world of patients and their carers. They also noted that most of the information that was

available was presented from the perspective of HCP who did not always appear to

acknowledge that their assumptions might not be an accurate or adequate reflection of

the actual experience. After conducting an in-depth investigation into the lived

experience of malignant wounds from the perspective of the patient, Piggin and Jones

(2007) found that there were indeed vast differences between the assumptions of HCP

and the actual experience as discussed by patients. Furthermore, like other authors,

they also found that the uniqueness and complexity of malignant wounds problematised

the generalisation of assumptions across patients (Haisfield-Wolfe & Rund 1997; Laverty

2003; McMurray 2003). As a result, they recommended that HCP focus on individualised

reports of the impact of a malignant wound and the meanings constructed by individual

patients as they tried to come to terms with their new mode of being-in-the-world.

Importantly for the current study, the four themes arising from Piggin and Jones’ (2007)

research all fell into the psychosocial domain and represented the impact of a malignant

wound in terms of a changed mode of being-in-the-world:

i) Representing the worst part of the cancer; ii) Living within a body that cannot be trusted; iii) A changing relationship with the patient’s family and friends; and iv) A loss of identity while continuously striving to be normal, yet feeling different.

A later study by Lo et al (2008) extracted a combination of physical and psychosocial

themes but the balance was in favour of existential issues arising from the impact of a


malignant wound. The work of Piggin and Jones (2007) and Lo et al (2008) reinforces

again the importance of considering all domains of a patient’s existence, not just the

physical.

Although participants did not specifically mention self-perception and altered body image

(ABI), it is reasonable to assume that these concepts, already discussed in Chapter

One, would also apply to the patients in this study. Discussion in Chapter One

considered the consequences for people whose internal contents spilled uncontrollably

from their bodies. Such people were labelled as ‘deviant’ (Turner 1996) or

‘transgressive’ (Connolly 2001), and their wounds described as ‘abject’ (Kristeva 1982).

Lawton (1998) referred to such bodies as ‘unbounded’ because their contents had

breached the body’s boundary (skin). People whose bodies have become unbounded

are commonly marginalised because they do not conform and because they threaten the

good order of society (Douglas 1970).

In this study, Jemima was well aware of her transgression. However, there was little

need for society to marginalise Jemima as, shouldering the guilt of her own failure, she

had already marginalised herself. Similarly, Gerry was sensitive about the wound that

covered half of his face. Even with the wound dressed, he felt safer in the hospital

where HCP were the only people who would view his changed appearance. Sadly for

the patients in this study, there was no chance of them achieving ‘boundedness’ and

being fully restored within society.

Caregivers An area that has received even less attention to date is the impact upon the being-in-

the-world of lay caregivers attending a patient with a malignant wound. Although there

has been an increasing awareness of the impact of the caregiving role in general, yet to


be investigated is the lived experience of caring for a palliative loved one with a

malodorous, constantly oozing and repulsive wound and trying to cope with the massive

workload associated with its management. Discussion in the literature was confined to a

few sentences which suggested that the experience would be distressing (Chaplin &

Curie 2004) and acknowledgement that the appearance of a malignant wound may be

even worse for a caregiver than for the patient (Young 2005). As a result of the lack of

specific information on the impact upon caregivers caring for a patient with a malignant

wound, ensuing discussion will review aspects of the caregiving role in general that

could reasonably be expected to apply also to a malignant wound experience. What is

becoming increasingly clear in this literature is that the caregiving role often has serious

consequences for the caregiver and is replete with difficulties, the extent of which has

been manifestly under-estimated in the past (Kuyper & Wester 1998).

There was recognition in the literature that two of the most traumatic and distressing

events in a person’s life are the loss of a family member (Brazil, Bedard & Willison 2002)

and caring for that family member during the terminal stage of their illness (Hebert et al

2006). Consequently, the caregiving experience is likely to be associated with many

negative sequelae, including higher levels of morbidity when compared with non-

caregiving populations, and the propensity for the suffering and stress of caregivers to

be even greater than the person for whom they are caring (Bishop et al 2007; Dumont et

al 2006; Goldstein et al 2004; Grande et al 2009; Kinsella et al 2000; Ohman &

Soderberg 2004; Siefert et al 2008; Walker 2002). There is also evidence that chronic

stress, such as that associated with palliative caregiving, may contribute to compromised

immunity, greater cardiovascular morbidity and slower wound healing (Hebert & Schulz

2006; Kinsella et al 2000; Murrant et al 2000; Solowiej, Mason & Upton 2009).


The far-reaching effects of serious illness were recognised by family participants in a

study by McSkimming et al (1999, p. 178) when they referred to the disease as ‘our

disease’ to reflect its dramatic effects on the being-in-the-world, not only of the patient,

but of other family members also. Like Lucy in the current study, caregivers in the study

by McSkimming et al (1999 p. 179) described themselves as being ‘constantly in

caregiver mode’. They reported ‘putting their lives on hold’ while caring for their loved

one.

The risks associated with such a preoccupation with the caregiving role were highlighted

in the literature which recognised the tendency for caregivers to become so consumed

with the caring role that they neglected to care for themselves (Grbich, Parker &

Maddocks 2001; Hebert & Schulz 2006). It was noted that this neglect had ramifications

not only for the caregivers but for the person for whom they were providing care (Murrant

et al 2000; Ohman & Soderberg 2004). According to Kuyper and Wester (1998), most

caregivers only asked for assistance when they had reached a crisis point and were no

longer capable of managing. They concluded that partners ‘often have more serious

problems than one might suspect’ (p. 250), while Grbich, Parker and Maddocks (2001)

stated that the emotional stress experienced by caregivers appeared to be more

complex than previously thought.

According to the literature, the factors that increased the risk for adverse effects

amongst caregivers included being an elderly caregiver with low levels of social support

who was caring for a seriously ill patient with psychological pathology. That risk was

heightened even further if the caregiver also had existing morbidities (Bishop et al 2007;

Brazil, Bedard & Willison 2002; Dumont et al 2006; Goldstein et al 2004; Grbich, Parker

& Maddocks 2001; Harding & Higginson 2003; Hebert et al 2006; Hebert & Schulz 2006;


Kinsella et al 2000; McMillan 2005; Stajduhar et al 2008). Unfortunately for Lucy

(caregiver) in the current study, all of these risk factors for increased caregiver burden

applied to her.

Yet another adverse indicator for Lucy’s caregiving burden can be found in research that

has revealed that a stressful and difficult caregiving experience often leads to poorer

physical and mental health even after the cessation of active caregiving (Bishop et al

2007; Brazil, Bedard & Willison 2002). However, as there has been little research into

the long-term effects on caregivers of caring for somebody with terminal cancer, there is

a consequent lack of knowledge about how long such effects might last. It has already

been noted in this thesis that Lucy is still experiencing difficulties related to her

caregiving experience even though it is now three years since Bill’s death.

Unfortunately, the implications from the research that has been conducted are that Lucy

might continue to experience adverse effects from her caregiving experience for many

years to come (Bishop et al 2007).

Nurses The challenges involved in caring for a patient with a malignant wound are also capable

of impacting upon the being-in-the-world of nurses. Numerous authors have recognised

malignant wounds as difficult to manage (Bird 2000b; Lloyd 2008; Lo et al 2008; Murphy

2006; Neal 1991; West 2007; Wilkes 2001; Young 1999) but it was the psychosocial

difficulties that appeared to have the greater and more enduring impact. In a discussion

subsequent to her interview for this study, Barb stated that malignant wounds are

‘always incredibly distressing and impactful’. Nurses in other studies have expressed

similar sentiments. For example, West (2007) described as ‘heartbreaking’ for nurses

the experience of looking after a patient with a malodorous malignant wound. Another

nurse described being ‘shattered’ because she had not been able to protect an eight-


year-old child from the sight of her mother’s malignant wound haemorrhaging (Wilkes,

Boxer & White 2003). Similarly, Lloyd (2008) reported feelings of anguish and

apprehension amongst nurses caring for a patient with a large, extending malignant

breast wound.

An article by Palsson, Isovaara and Norberg (1995) was reviewed in Chapter One where

it was noted that nurses treating cancer patients at home described malignant wounds

as ‘especially trying’ (p. 68). What was significant was that it was the only condition so

labelled. Nurses in that study described feelings of fright and nausea when caring for

patients with malignant wounds, while nurses in other studies have described them as

personally distressing (West 2007; Wilkes, Boxer & White 2003) and traumatic (Young

1999).

The stress experienced by nurses was often amplified in instances where they were able

to identify personally with their patients with malignant wounds or when the patient’s

social circumstances were particularly poignant. If patients were of a similar age as the

nurse or her parents, or if the patient had children of similar ages to the nurse’s own

children, they were often led to wonder how they would cope in similar circumstances

(Palsson, Isovaara & Norberg 1995; Wilkes, Boxer & White 2003). If patients were

young, nurses often experienced feelings of meaninglessness and unfairness (Palsson,

Isovaara & Norberg 1995).

As noted by Lynette (nurse) in the current study, this distress was sometimes manifested

not only emotionally but physically as well. This phenomenon of nurses experiencing

similar physical symptoms when exposed to patients in distressing situations has been

referred to by Morse and Mitcham (1997) as ‘compathy’. They described compathy as a


significant but neglected phenomenon and defined it as: ‘an involuntary distress

response in the caregiver that mirrors patient distress’ (p. 649). Compathy occurs ‘when

one person observes another person suffering a disease or injury and experiences in

one’s physical body a similar or related distress’ (p. 649). Lynette was a very

experienced nurse but the impact of her patient’s distress and the complexity of the case

still affected her both physically and psychosocially.

There has been some discussion in the literature on the advisability of matching the

complexity of cases to the experience of the nurse. For example, Hampton (2008)

suggested that care of patients with malignant wounds required an experienced nurse,

while West (2007) noted that better care was provided to a patient with a malignant

wound by a nurse who was experienced in managing difficult and malodorous wounds.

These sentiments were supported by the comments of the two newest nurses in the

current study. Linda had described her sense of being overwhelmed by the demands of

the malignant wound and her belief that the overwhelmedness had impaired her ability to

source information in an objective fashion. Another less-experienced nurse, Janice,

discussed the experience as ‘horrific’, particularly because it was her first experience of

a malignant wound. In view of these comments and the undoubtedly confronting and

overwhelming nature of malignant wounds, one of the recommendations arising from

this study is that the care of patients with malignant wounds only be assigned to

experienced nurses with, perhaps, a less-experienced nurse assisting as a means of

gaining experience. Alternatively, if there is no option other than to assign a patient with

a malignant wound to a less-experienced nurse, care should be taken to ensure that

sufficient support mechanisms are provided to facilitate the early and effective

management of any consequent distress. Healthy, constructive reflection is an


important part of professional nursing practice but the experiences of the new nurses in

this study were more suggestive of distress, than they were of reflection.

The preceding discussion has illustrated the overall impact of malignant wounds upon an

individual’s being-in-the-world. Discussion in ensuing sections will highlight specific

aspects of that experience.

Seeking Information It tends to be the case in Western society that patients seek sufficient information about

their illnesses to enable them to make informed decisions. This need was commented

upon by several participants in this study.

Patients Jemima stated that the lack of access to information about malignant wounds and what

she might expect in the future was one of the barriers impairing her ability to come to

terms with her new mode of being-in-the-world:

‘… they tell you nothing of what to expect and when you ask … you get nothing … I have no idea of what, what, what it is … not having information available to know just what’s going on there, you know, what’s happening there is a mystery’ (Jemima).

Instead, she spent a lot of time researching malignant wounds and searching for a cure.

Although she had acknowledged that HCP had deemed her to be palliative, she was still

hopeful that she might find a cure somewhere. The concept of hope and the difficulties

often experienced when trying to foster it were also discussed by a number of the

participants interviewed for this study. Their comments will be discussed in greater

detail in the next chapter.


Caregiver Lucy did not specifically mention lack of information as being a problem for either herself

or Bill. The major problem for Lucy was that the information they did receive was not the

information Bill wanted to hear. Bill was seeking somebody who would tell him that he

could be cured. Instead, all of the HCP who he did consult told him there was nothing to

be done, and the only care that could be offered would be palliative.

Nurses Nurses recognised patients’ need for information. They also recognised the importance

of providing the information in an appropriate manner. In some instances, however,

finding an appropriate way to deliver certain information was not an easy task. For

example, Barb discussed her conversations with patients and their families about the

possibility of an arterial haemorrhage which would probably result in the patient’s death.

Barb recognised the need to provide the information in a succinct manner but, at the

same time, with compassion and sensitivity. Even so, she was personally affected by

the stressful nature of such discussions:

‘The challenge is how, how do you express that in, in a way that informs yet doesn’t completely freak out? … that’s a ___ constant challenge. It’s the hardest, it’s the hardest conversation to have but it’s not just a one-off conversation … the whole conversation and discussions around the imminent life limiting nature of that has got to be, er, constant conversation. It’s draining. I just find that exhausting. Because each time you go, you need to continue to have that conversation … you’ve really got to take a deep breath in order to have a conversation like that. My heart’s in my throat when I’m having a conversation which is so confronting. I mean it’s awful … I have a sense of how, it doesn’t matter how I try to, to say the words, they’re …’ (Barb).

‘… if you’re too, um, blunt ___ they feel accosted by it’ (Loretta).

It was evident that participants in the current study placed importance on the ability to

access appropriate information about their malignant wound experience. As will be


shown in the ensuing discussion, however, existing literature did not reflect a similar

level of importance.

Seeking Information: Comparison With the Literature The scarcity of discussion in existing literature suggested that authors did not accord a

high level of importance to patients’ ability to access appropriate and accurate

information about malignant wounds and what they might expect in the future. The issue

was mentioned specifically in only one article. Participants in Lo et al (2008) complained

about the minuscule information provided by HCP about their wounds. Patients

correlated this lack of access to information about malignant wounds with increased

anxiety about what was happening to the wound and what might happen in the future. In

contrast, Lo et al (2008) noted that ‘access to sensitive, knowledgeable and skilled care

made the participants feel much better about their wounds …’ (p. 2705) and more able

to adapt successfully to their new mode of being-in-the-world. Similarly, in the current

study, Jemima (patient) was quite certain that access to accurate and comprehensive

information about her malignant wound and what to expect would have been of

assistance to her as she attempted to come to terms with the many changes wrought by

the wound.

Although not discussing malignant wounds, several authors have recognised the

importance of providing information to patients if they are to make informed decisions

about their care. They also highlighted the importance of recognising the individualised

needs of each patient for information. Not all of the patients wanted all of the information

all of the time, but it appeared that most of them would like it delivered in a sensitive

fashion (Berger et al 2000; Callahan, Maldonado & Efinger 2003; Fried & Bradley 2003;

McSkimming et al 1999; Tulsky 2005). These comments suggest that the provision of


comprehensive information to patients with malignant wounds may be an important

aspect of their treatment not previously recognised by HCP or in the literature. One

method recommended for overcoming the apparent lack of information was the

development of a trusting relationship between HCP and patients which would enable

the HCP to determine each patient’s need for information and might aid in easing some

of their distress.

Although seeking information was important for some participants, some of the nurses

mentioned instances where patients had actively not sought information because they

were afraid of the diagnosis and the confronting nature of their new mode of being-in-

the-world. As a result of these fears, some patients had delayed seeking medical advice

and attempted to manage their malignant wounds on their own. This topic will be the

subject of discussion in the next section.

Delaying Presentation Delayed presentation was a phenomenon often noted in the literature and also by some

of the nurses in the current study as they discussed instances of patients with malignant

wounds delaying consultation with HCP until such time that the deterioration in the

wound forced them to do so. This phenomenon was not reported by any of the patients

or the caregiver in this study as they sought early and ongoing advice. A small number

of nurses, however, did discuss their observation of patients with malignant wounds who

had delayed presentation.

Nurses Nurses described instances where patients had delayed seeking treatment because they

were afraid of the diagnosis or embarrassed, either by the repulsive appearance of the

malignant wound or the sensitivity of its location:


‘… a very elderly lady, well, she just didn’t come, didn’t present because she was, um, too embarrassed to show anyone’ (Mandy).

‘They just don’t do anything until it’s way too late, and, um, then you’ve got something huge to deal with’ (Leanne).

Delaying Presentation: Comparison With the Literature Although only two nurses in the current study discussed the phenomenon of delayed

presentation, it is an aspect of the malignant wound experience that has received some

coverage in the literature. For example, Jones (1998) presented the case of an elderly

lady who attempted to manage her malignant breast wound for many months and only

consulted her doctor after her daughter became aware of the malodour and suspected a

pathological process. Other case reports included attempts to manage exudate with

toilet paper or by reducing fluid intake (Lo et al 2008).

Although there has been no research conducted to investigate reasons for delayed

presentation, some authors suggested that patients concealed their wound and delayed

seeking treatment because they were ashamed of the repulsive, malodorous malignant

wound. Like nurses in the current study, nursed cited in the literature suggested that the

delay may be related to fear of the prognosis or to embarrassment over the location of

the wound (Clark 1992; Collier 2000; Goode 2004; Haller 2004; Kwong et al 2007;

Lazelle-Ali 2007; Lloyd 2008; Lo et al 2008; Madjar 2001; McMurray 2003; Mekrut-

Barrows 2005; Neal 1991; Noblet 2008; Pudner 1998; Queen et al 2002). In all these

instances, the patients were so distressed with their new mode of being-in-the-world that

they would rather endure social isolation than the negative emotions associated with

allowing others to become aware of the full extent of their wound (Clark 1992; Dowsett


2002; Lloyd 2008). This area is one that is worthy of further research to elucidate more

fully the reasons for delayed presentation so that malignant wounds might be detected

earlier and the incidence of traumatic experiences either reduced or addressed more

effectively. The propensity for malignant wounds to be characterised by specific

traumatic experiences will be discussed in the next section.

Traumatic Experiences There were only a few specific traumatic experiences discussed by patients and the

caregiver as they dealt with their new mode of being-in-the-world. For them, the entire

experience was generally so traumatic that it was difficult to isolate particular instances

as being especially traumatic. Similarly, the nurses also recognised that caring for

patients with malignant wounds was traumatic in itself. However, they were able to

articulate some instances that had been especially so. The participants’ perspectives on

these traumatic experiences are presented hereunder.

Patients For Gerry, the most traumatic experiences were the four instances where his malignant

wound had become infested with maggots:

‘… while I was asleep in bed in the daytime … the flies, must have crawled up underneath the bandage and laid its maggots in my eye and that happened four different times…’ (Gerry).

He was relieved that the purchase of a mosquito net had prevented any further

infestations.

Caregiver For Lucy, a specific traumatic experience occurred in the early development of her

husband’s malignant wound when he was nearing the end of radiotherapy treatment:


‘… really made him very, very sick … but he kept on with it, hoping that it would do some good … he got third degree burns … Actually, the burn was worse for him than what the sore was … more painful ...’ (Lucy).

Nurses Nurses described caring for patients with malignant wounds as being amongst the most

complex and traumatic cases they had managed:

‘Right up there, near the top …’ (Barb).

‘We kept the numbers of staff going in there to an absolute minimum because of the, it was just so traumatic’ (Celia).

Even so, they were still able to describe events that had been particularly traumatic:

‘…as the nurse was talking to her, her eye literally just ___ plopped out … there was no real debriefing at that time … she came back and talked about it a lot in the office … the vision of that constantly’ (Loretta).

‘… by the time she died … I could put my fist inside her chest …, one day I was there and her sternum just lifted out … and it was horrific …’ (Abby).

Not surprisingly, such traumatic experiences caused extreme distress, both for patients

with malignant wounds and for those caring for them.

Traumatic Experiences: Comparison With the Literature Unlike the nurses in the current study who described specific instances of traumatic

events, nurse reports within the literature tended to be of a more generic nature. For

example, Young (1999) and Wilkes, Boxer and White (2003) both described caring for

patients with malignant wounds as traumatic overall but did not discuss instances that

were especially traumatic. Because traumatic experiences were not discussed

specifically, there was a corresponding lack of discussion on the importance of

debriefing or other support in such instances. However, as suggested by the comments


of nurses in this study, such support would probably be a valuable addition to their own

ability to support patients with malignant wounds. This issue is discussed in greater

depth in Chapter Six.

Not surprisingly, the trauma associated with the attempts to manage a malignant wound

resulted in many negative emotions for patients, caregivers and nurses. These

emotions will be the topic of discussion in the next section.

Negative Emotions The negative emotions experienced by patients living with a malignant wound and those

caring for them may have been varied but they tended to share one common feature –

intensity. As shown within the perspectives presented below, such emotions typically

exacerbated the distress associated with the malignant wound and worsened the

experience for all involved.

Patients Patients described a range of negative emotions associated with the new mode of being-

in-the-world forced upon them by the malignant wound: shame; embarrassment;

frustration; anger; fear; anxiety; and depression. Jemima’s shame and embarrassment

resulting from her offensive malodour were discussed in the previous chapter. However,

she was also frustrated and angry because she believed that the HCP caring for her

were not well-versed in the care of malignant wounds. As a result, she experienced

anxiety about her future, how the wound might develop and what further changes might

be wrought upon her being-in-the-world. Gerry experienced anxiety because he knew

he was approaching the end of his life and was concerned that he might experience

pain. He was also conscious of the fact that his wound covered most of his face and


head and felt ashamed of his appearance so that his new mode of being-in-the-world

was characterised by altered body image and social isolation.

Caregiver In Lucy’s new mode of being-in-the-world, not only did she have her own negative

emotions to deal with, but she was frequently on the receiving end of her husband’s

negative emotions as well. Lucy believed that Bill’s anger and frustration were straining

their relationship but she persevered because she knew that there was nobody else to

care for him:

‘But, I knew I had to do it, there was nobody else to do it …’ (Lucy).

Even so, despite the long hours she had devoted to caring for Bill and the physical and

psychosocial impact upon her own being-in-the-world, Lucy still experienced feelings of

frustration, inadequacy and guilt at her inability to provide better care for Bill and felt that

she had let him down:

‘I used to get really, really frustrated sometimes, you know, and think, well, you know, what am I going to do, what can I do for him? I can’t do anything ___ I just can’t do anything to help ___ there’s nothing you can do … when he died, I sort of felt guilty … I thought maybe there was more I could have done for him and I didn’t do but …’ (Lucy).

Lucy’s new mode of being-in-the-world after Bill’s death is characterised by lingering

memories of his illness and doubts about whether her own input was sufficient.

Nurses Like the caregiver, nurses also experienced negative emotions as their being-in-the-

world was impacted by the demands of patients’ malignant wounds. They described


experiencing frustration, inadequacy, guilt and even anger because they were not able

to care for the malignant wound in what they considered to be a suitable manner:

‘So, from a clinical perspective, it was very frustrating because I just couldn’t care for that wound as I would have liked … I mean, I just felt so inadequate and so ___ hopeless and helpless that, you know, there wasn’t something more I could do for that leg. Not heal it, but even just manage it …’ (Celia).

‘… frustration, anger, sadness because of giving feelings of ___ “I can’t do anything here, what’s the point?”’ (Lynette).

‘… I just kept hitting a brick wall with it all the time …’ (Linda).

‘… you can just hit a brick wall all the time ... you know, you can just do the best that you can do which sometimes isn’t the best, or good enough … I think, is really band aid stuff …’ (Loretta).

These feelings of inadequacy and guilt often led to nurses questioning their ability to

care:

‘… those things that I tried to implement into this fellow for his care actually made me look at my, my, ability to care … Like made me feel a bit wobbly as in “am I doing the right thing?” … I’m not the most confident people either and it really challenged my ability to care ...’ (Linda).

‘… constant … struggle to manage the level of comfort, trying to, us to try and use all the resources and skill that we have to try and make things manageable but we can’t because it’s ___ it’s an awful experience ... it’s confronting ... it takes you completely out of your comfort zone … the amount of intensity it was to care. It’s incredibly draining’ (Barb).

Nurses’ feelings of inadequacy and frustration were even worse when patients’ beliefs

constrained the limited care that they were able to provide. Some nurses described their

own distress in instances where patients’ religious beliefs had restricted their ability to

provide what they considered to be appropriate care:


‘… probably what was just was traumatic for me was the fact that her and her family belonged to the, um, [religious organisation] and so, because of that, she had always, um, denied any sort of medical intervention … the pain she was in was horrendous and when she wanted, I guess, in her eyes, give in and accept analgesics, her family were … telling her “no” she could not have anything … they weren’t feeling the pain, but, no, they wouldn’t even discuss it with us … just walk out of the room’ (Celia).

‘… the pain issue is a big thing for me too. I mean, you’d only have to think about touching the dressing on his head and he’d be screaming … so then I felt like a bit of a, sort of, stress ball when I came to do the dressing because I knew I was hurting him’ (Linda).

Nurses understood why their patients were angry but they still experienced hurt and

disappointment when they were on the receiving end of the anger. Lynette and Celia

both spoke about a patient whose malignant wound was deteriorating steadily. On one

occasion, a nurse had applied a different dressing and the patient later angrily accused

her of making her wound worse:

‘So there were definite feelings of frustration, and there were also feelings of anger. People were really cranky … the feelings I can remember coming in here were feelings of absolute frustration that nothing you could do was ever right …’ (Lynette).

‘Junior staff needed to feel protected in terms of her outbursts and her anger and it was debriefing after each time before the need to dress the wound, debriefing after the dressing of the wound, incredibly ___ um, emotional drain on, on the girls …’ (Barb).

In some cases, even entire community nursing offices were affected:

‘It affected people who weren’t going in to see her because there’d be a lot of talk about it, a lot of debriefing, a lot of crying, all sorts of things, you know. And, um, so, really, the whole centre, really, at various stages were involved…’ (Lynette).

The location of the malignant wound also frequently led to feelings of unease:


‘… it’s a lady’s breast, or it’s a gentleman’s groin … and here you are, staring at it, for hours…’ (Barb).

It was obvious that the patients, caregiver and nurses in this study experienced a range

of negative emotions as they attempted to cope with the malignant wound and come to

terms with their new mode of being-in-the-world. However, as will be shown in the

ensuing discussion, the majority of existing literature was presented from the

perspectives of HCP only.

Negative Emotions: Comparison With the Literature Existing literature contained little discussion on the identification of negative emotions by

the patients themselves. Instead, discussion was presented from the perspective of

HCP and their expectations about what patients would experience as they attempted to

come to terms with their new mode of being-in-the-world. It was noted, however, that

most of these HCP-identified emotions did actually correlate with the negative emotions

expressed by patients in the current study. Such emotions typically centred around

distress, shame and changes to the individual’s personhood and being-in-the-world

(Bale, Tebble & Price 2004; Bird 2000a; Clark 2002; Cook 1999; Fleck 2006; Hack 2003;

Haisfield-Wolfe & Rund 1997; Hampson 1996; Hampton 2004; Henderson 2006;

Holloway 2004; Kalinski et al 2005; Lazelle-Ali 2007; Lloyd 2008; Lo et al 2008; Lund-

Nielsen, Muller & Adamsen 2005a; Maida, Ennis, Kuziemsky & Trozzolo 2008; Mercier &

Knevitt 2005; Naylor 2005; Piggin 2003; West 2007; Wilkes, Boxer & White 2003). As

usual, though, in keeping with the literature on the psychosocial issues associated with

malignant wounds, once the negative emotions had been identified, there was little

further discussion on their impact or how to manage them.


The subject of negative emotions amongst nurses caring for patients with malignant

wounds has received some coverage in the literature. Like nurses in the current study,

nurses cited in the literature reported being collaterally affected by the distress of their

patients, as well as experiencing their own negative emotions associated with the

challenges of caring for patients with malignant wounds. Despite their best efforts to

manage the malignant wound, they reported experiencing feelings of guilt, inadequacy,

frustration and helplessness when they were unable to manage a wound in a manner

that they considered to be acceptable (Lloyd 2008; Wilkes, Boxer & White 2003).

Arising from these negative emotions, some nurses in the current study were led to

question their own ability to provide care. The resultant lack of confidence in their

professional competence and the negative emotions from which it was generated

impacted significantly upon their being-in-the-world. Similarly, nurses in the study by

West (2007) reported being so affected by their own negative emotions that they

struggled to provide appropriate psychological support for the patient. Others, like

nurses in the current study, were so affected by the intensity of the experience that they

were unable to stop thinking about the malignant wound and the negative emotions it

engendered, even when they were off duty.

One specific instance of negative emotions raised both by nurses in the current study

and within the literature related to cases where patients blamed HCP for the

deterioration of their wound (Davis 1995). Attempts to explain to the patient that the

wound was deteriorating anyway were not always successful, possibly because the

patient did not want to hear or believe what the HCP was saying. Nurses understood

that patients were angry and needed somebody to blame but they still experienced hurt

and disappointment because they were trying to do their best for the patient. However,


not only were their efforts not appreciated in these instances, but the angry accusations

of their patients exacerbated the distress already being experienced by the nurses.

It is apparent that nurses experienced a range of negative emotions when caring for

patients with malignant wounds. Even so, in the midst of these negative emotions and

traumatic experiences, a few nurses were able to derive benefit from their experiences

of caring for patients with malignant wounds. These experiences will be discussed in the

next section.

Finding Benefit It is recognised that the likelihood of deriving beneficial experiences from caring for a

patient with a malignant wound is low. Even though some of the participants in this

study were able to articulate some benefit from the experience, as shown in the

perspectives presented below, such instances were rare.

Patients None of the patients were able to verbalise any benefits from their malignant wound

experience. The changes wrought by the malignant wound upon their previous and

familiar mode of being-in-the-world had been so devastating that they could find no

benefit in the enforced changes or the new mode of being-in-the-world.

Caregiver Lucy was also unable to verbalise any benefit from her experience of caring for her

husband. She described the being-in-the-world of both of them as having been

devastated by the impact of the malignant wound. Not only had the impact of the

malignant wound been significant during the caregiving experience, but it was still

continuing to influence her being-in-the-world three years after the death of her husband.


Nurses Nurses were the only study cohort to conceptualise some beneficial influence on their

being-in-the-world arising from their experiences of caring for patients with malignant

wounds:

‘… just quite inspirational ___ isn’t it, the courage of people? ... we actually have the great privilege, if you can see it as a privilege … of meeting wonderful people in a very difficult circumstance and we have the opportunity of being with them, walking with them, for a little while and from that, I think, we’re given the gift of learning something about ___ humanity and ourselves’ (Loretta).

‘I think it’s rewarding actually because you can make a difference …’ (Roxanne).

The inability to articulate many beneficial experiences from their malignant wound

encounter was not restricted to participants in the current study. As will be shown in the

ensuing discussion, a similar situation was reflected in the literature where there was a

comparable lack of reports of beneficial experiences.

Finding Benefit: Comparison With the Literature Given the complicated nature of malignant wounds and the intensity with which they

tend to impact upon all involved, the fact that few people are able to articulate beneficial

experiences is not surprising. Indeed, if there are to be any surprises, they probably

reside in the fact that some people are actually able to construct a positive experience at

all amidst the trauma and negative emotions typically associated with a malignant

wound. In spite of the improbability of such experiences, however, a small number of

nurses in the current study and within the literature were able to report some beneficial

influences upon their being-in-the-world arising from their malignant wound experience.

Amidst the distress generated by their patients’ circumstances, they reported deriving

positive feelings and a sense of enrichment from their ‘deep human contact’ and from

achieving good outcomes for their patients (Palsson, Isovaara & Norberg 1995; Wilkes,


Boxer & White 2003). Unfortunately, the nurses were the only group able to verbalise

any benefits from their malignant wound experiences. Neither the patients nor the

caregiver in this or any other study were able to verbalise any benefits from their

malignant wound experience. Even though some nurses did report some beneficial

aspects to caring for people with malignant wounds, such reports were rare. As

discussion has shown, it is more likely that nurses would experience negative emotions

or other responses that they did not wish to share with the patient. In these instances,

they performed emotional labour as they tried to suppress their authentic responses and

respond, instead, in ways that would be considered to be more appropriate. Although

there is no literature on the concept of emotional labour in the context of malignant

wounds, some theorists have recognised the importance of recognising and managing

emotional labour within nursing in general. This issue of emotional labour in nursing will

be enlarged upon in the next section.

Emotional Labour The concept of emotional labour was first introduced by Hochschild (1983) who studied

its usage by flight attendants. Emotional labour occurs when people are required to

display certain emotional states which may not be authentic, while simultaneously

repressing their authentic feelings. Hochschild (1983, p. 7) defined it as requiring ‘one to

induce or suppress feeling in order to sustain the outward countenance that produces

the proper state of mind in others’. It has long been recognised that nurses also perform

emotional labour as part of their caring role. What has become obvious in this thesis,

however, is that this emotion work is even more intense in the context of repulsive and

disfiguring conditions, such as malignant wounds (Wilkes, Boxer & White 2003). As will

be discussed hereunder, however, such emotional labour is not without consequences.


Following publication of The Managed Heart (Hochschild 1983), several nursing

theorists adopted Hochschild’s theory of emotional labour and applied it to nursing (Gray

2009a, 2009b; James 1989, 1992; Smith 1992). Although Smith (1992) acknowledged

that the roles of flight attendants and nurses were different, she believed that there were

similarities that supported the application of the theory to nursing work. It is the

contention of this thesis that the emotional labour required from nurses is actually more

intense than that required of flight attendants because nurses are typically required to

deal intimately with people whose emotional states have been heightened through

illness (or, possibly, the knowledge of approaching death). Another difference is that

flight attendants generally deal somewhat superficially with a large number of people,

spending perhaps only a few minutes with each. However, nurses generally spend a lot

of time with a small amount of people; sometimes coming to know them quite well.

Accordingly, although it might be reasonable to transfer the concept of emotional labour

to nurses, it may well be the case that the intensity of that labour and its consequences

is greater than previously acknowledged. Despite these differences, the one thread

woven through all these forms of stress was ‘the task of managing an estrangement

between self and feeling and between self and display’ (Hochschild 1983, p. 131).

This thesis has already reviewed some examples of nurses in this study performing

emotional labour, including attempts to downplay the effects of their patients’ malodour

(Chapter Three) and trying not to let their negative emotions show (this chapter) –

situations they likened to ‘walking a tightrope’. Another example was their deliberations

over the appropriate manner in which to respond to their patients’ questions about the

progression of the wound. This issue of ‘answering the difficult questions’ will be

discussed in greater detail in Chapter Five.


According to Hochschild (1983), the largely previously overlooked consequences of

emotional labour might include: burnout; depersonalisation; loss of sense of self;

difficulty ‘switching off’ from work; and bad faith because people knew they were

presenting emotional displays that they did not genuinely feel. She also suggested that

these effects became more likely as the duration of the emotional labour increased. In

addition to the consequences outlined by Hochschild (1983), Carmack (1997) reported

that nurses also reported: dreaming about patients; having imaginary conversations with

patients; and experiencing altered judgement. James (1989) provided evidence

supporting the contention that suppression of emotions was unhealthy. She also pointed

out that repressed feelings do not vanish; they invariably resurface somewhere else.

Some of these effects were noted by nurses in this study, including the difficulty of

‘switching off’ after work and loss of sense of self as they questioned their ability to

provide care. The issue of inauthenticity was also raised in the sub-theme ‘Responding

Appropriately’ in Chapter Four. Discussion in that section noted that clinicians

suppressing their true feelings might be harming, not only the clinician-patient

relationship, but themselves as well as their inauthenticity could lead to self-branding as

‘liars’ (West 2007; Wilkes, Boxer & White 2003).

Despite the intensity of emotional labour and its typically adverse consequences, it is

frequently overlooked (Steinberg & Figart 1999). This oversight means that the

consequences will be similarly overlooked (and under-remunerated). It is beyond the

scope of this thesis to discuss in detail the reasons for this oversight. Suffice to say,

they primarily relate to gender divisions in emotions and work. Prevailing beliefs about

work are that only physical labour counts as ‘real’ work (James 1989). Therefore,

anything not occurring in this domain (including emotion work) is not ‘real’ work and is


consequently devalued. Furthermore, as emotions and caring are perceived as the

domain of women, emotional labour is devalued even further in a society that still, to

some extent, views women’s work as less valuable than that performed by men.

Compounding the situation still further is the perception that, because women manage

emotions so well, it is a ‘natural’ part of their ‘being’, as opposed to something they have

to work at (Gray 2009a).

However, as stated by a number of authors, emotional labour is not only work in the

strict sense of the word, but is often harder than the physical labour which more often

typifies understandings of what constitutes work (Hochschild 1983; James 1992;

Maunder 2006; Staden 1998). Smith (1992) agreed that caring does not come ‘naturally’

for women. She found that nurses have to work emotionally on themselves in order to

appear to care, regardless of the circumstances. Particularly salient for the current study

was the observation of James (1989) who claimed that the demands of emotion work

with palliative patients and their families could be as difficult (or even moreso) than

physical or other forms of labour. Based on the work of these authors and the findings of

the current study, it is the contention of this thesis that nursing patients with malignant

wounds will exacerbate the intensity of emotional labour performed by nurses.

It is beyond the scope of this thesis to discuss in detail the coping strategies adopted by

workers required to perform emotional labour as part of their employment. However,

they typically included: cognitive (reinterpreting events); behavioural (controlling the

display of emotions); or physical (reducing responses through the use of psychoactive

substances); and support from colleagues and employers (Pugliesi 1999). Others coped

by concentrating on physical tasks (Smith 1992; Fulton 1996). This phenomenon of

task-oriented nurses has also been commented upon in Chapter One (literature review).


One thing that is certain is that the requirement for emotional labour (and the

concomitant need to manage it effectively) is only likely to increase in future, as the

nursing workplace is impacted by higher patient acuity and nursing shortages

(Henderson 2001).

Conclusion The preceding discussion has demonstrated that malignant wounds have the ability to

impact traumatically upon the lives of patients and caregivers, shattering their familiar

modes of being-in-the-world and thrusting them into new and unfamiliar modes.

Although the impact was less intense for nurses, it was still evident that caring for

patients with malignant wounds affected them professionally and personally because of

the intensity and complexity of the malignant wound and the resultant distress for

patients and those caring for them.

Of the six sub-themes extracted from the data, the first discussed the impact of the new

mode of being-in-the-world and set the scene for the discussion of the remaining sub-

themes. It was noted that patients with malignant wounds frequently experienced

difficulty in accessing appropriate information while others, afraid of the information they

might receive, delayed seeking medical advice. One somewhat unexpected outcome

was the finding that, despite the treatment of malignant wounds commonly being

characterised by traumatic experiences and negative emotions, a few nurses were able

to derive some benefit when treating patients with malignant wounds. Unfortunately,

none of the patients or the caregiver was able to articulate any benefit from the

experience.


It was interesting to note that all of the six sub-themes in this chapter related to issues in

the psychosocial domain – a trend not reflected in the literature where discussion tended

to focus on the clinical management of malignant wounds. Yet, as shown in this study, it

is the psychosocial issues that typically are the most numerous and have the greatest

impact upon being-in-the-world, but are also the ones about which we know the least.

Important though it is to provide optimum clinical management of a malignant wound, if

clinicians focus on only one aspect of a disorder, all other domains remain unaddressed

and capable of continuing to influence the one domain that HCP are attempting to

resolve. If all domains are to be addressed, HCP must learn about the totality of the

experience for the individual, as well as learning about their unique, but complex,

individuality; their being-in-the-world. In this way, by recognising the impact of the

disorder upon a patient’s existence, HCP will gain a comprehensive understanding of

what patients are experiencing as they try to cope with chronic morbidity, approaching

mortality and to come to terms with their new mode of being-in-the-world. One of the

issues highlighting this need to recognise the individuality of each patient was the

differing nature of hope amongst patients with malignant wounds and those caring for

them. This concept will be discussed in the next chapter.


Implications for Future Research 1. Psychosocial issues for patients arising from their changed mode of being-in-the-world

following the impact of a malignant wound. 2. Psychosocial and physical issues for caregivers caring for somebody with a malignant

wound. 3. Strategies for addressing the identified issues for patients with malignant wounds and

their caregivers. 4. Are the psychosocial issues of patients with malignant wounds relegated in favour of

physical issues because the physical issues are easier to address, or because the repulsiveness and constant demands of the malignant wound leave little time for consideration of the psychosocial issues? Or, are there other reasons why psychosocial issues tend to receive less attention than physical issues?

5. Investigation of the reasons why some patients delay seeking treatment for a malignant wound.

6. Further investigation into the concepts of altered body image and self-perception in the context of malignant wounds.

Additions to the Literature 1. Greater understanding of the impact of

malignant wounds upon the being-in-the-world of patients, caregivers and nurses.

2. Need of patients with malignant wounds for greater information about their condition and likely prognosis.

3. Presentation of some of the specific traumatic incidences experienced by nurses when caring for somebody with a malignant wound.

4. Contention that the emotional labour performed by nurses caring for patients with malignant wounds may be more intense than previously recognised.


Substantiating Existing Literature 1. Acknowledgement that the

impact of malignant wounds upon patients and nurses is typically immense and frequently characterised by myriad negative emotions and traumatic incidences.

2. Although rare, some HCP were able to find benefit in their experiences of caring for somebody with a malignant wound.

Recommendation That the care of patients with malignant wounds only be assigned to experienced nurses with, perhaps, a less-experienced nurse assisting as a means of gaining experience. Alternatively, if there is no option but to assign a patient with a malignant wound to a less-experienced nurse, care should be taken to ensure that they are provided with sufficient support mechanisms to ensure that any distress is managed appropriately.



Chapter Five: Still Room for Hope Hope is an important part of human life. Although this importance is well recognised in

the literature, there has been only scant coverage of its influence on those living the

experience of malignant wounds. What has been discussed in the literature is the value

of hope as a coping strategy for those experiencing suffering or trauma, including the

distress typically experienced by palliative patients and their families (Herth 1990, 1993;

Holtslander, Duggleby & Wright 2005; Nekolaichuk & Bruera 1998). For these people,

even though death may be imminent, there is still often room for hope as patients hope

for a peaceful and pain-free death or maintain the hope that a cure might be found for

their disorder (Breitbart & Heller 2003). However, although the benefits of hope were

recognised, it was apparent, both in this study and in the literature, that the concept of

hope itself and its operationalisation by individuals was not always understood (McGrath

2004). One of the outcomes of this lack of understanding frequently manifests as

ineffective communication between some HCP and patients.

Representing a major part of the discussion in this chapter will be some of those areas

where communication between patients and HCP became problematic because the

hopes of the patients did not align with what were considered by HCP to be more

realistic views. Given the typically devastating nature of malignant wounds, the fact that

some patients were able to maintain hope could be considered remarkable but its value

was evident nonetheless. Because HCP generally recognised this value, they frequently

experienced tension as they tried to decide between dashing the patients’ hopes and

presenting what they considered to be a more realistic outlook. One such area where

the divergence between the views of HCP and the hopes of patients was particularly

noticeable was in the concept of a ‘good death’. It was apparent that the fixed views of


some HCP did not take into account patients’ rights to make their own decisions and

traverse their pathways according to their own wishes. These differences problematised

communication between HCP and patients as the fixed views of HCP were not

compatible with the hopes of patients. Given the acknowledgement in contemporary

palliative care of the importance of not forcing patients to adopt pre-determined dying

trajectories and accepting, instead, their need to progress in their own way, these fixed

attitudes amongst nurses were somewhat unexpected. Yet to be investigated is whether

these nurses typically responded in this manner or whether, as shown in the preceding

chapter, the impact of the malignant wound was so intense that it altered the nurses’

usual mode of practice.

Serving as a preface to the presentation and discussion of data in this chapter, will be an

introductory discussion on the concept of hope, its importance to human wellbeing and

strategies that HCP might adopt when attempting to foster hope in their patients.

Following on from this introductory prelude will be discussion of the sub-themes revealed

in the analysis of the data:

i) The ‘good death’; ii) Hoping for a cure; iii) Responding to the patients’ hopes; iv) Answering the difficult questions; v) Denial; vi) Complementary therapies.


by presentation of the perspectives of patients, caregiver and nurses relating to that


existing literature. Together, the sections will present a detailed picture of the


experience of hope from the perspectives of those living with a malignant wound or the

people caring for them.

Hope Hope is a multi-faceted, complex, intangible phenomenon. Although it is often described

in terms of an inner, positive force, the precise meaning will be different for each one of

us (Nekolaichuk & Bruera 1998). Furthermore, as each person’s life circumstances

continue to change, so does their concept of hope. These characteristics ensure that

the construction of a universal definition for hope will remain an elusive task (McGrath

2004). Past attempts to define hope have generally resulted in a broad definition, such

as that provided by Herth (1990) who defined it as ‘an inner power directed toward

enrichment of “being”’ (p. 1250).

Despite the difficulties in defining hope, its value to human functioning, especially during

times of suffering and trauma, is widely recognised. It is frequently invoked as a coping

strategy by those confronted with an acute or chronic illness, such as heart disease and

cancer (Herth 1990), and is known to enhance quality of life of both patients and their lay

caregivers (Borneman et al 2002; Herth 2000; Holtslander, Duggleby & Wright 2005;

Nekolaichuk & Bruera 1998). Conversely, hopelessness is typically associated with

depression, suicidal ideation and increased morbidity (Berger et al 2000; Breitbart &

Heller 2003; Nekolaichuk & Bruera 1998).

The importance of hope to palliative patients has been acknowledged by many authors

who recognised the ability of hope to sustain the wellbeing of the terminally ill and their

families during the terminal phase of the patients’ illness (Herth 1990, 1993; Nekolaichuk

& Bruera 1998; Regnard et al 2003). Even when somebody is dying, there is still room


for hope. They may hope for a peaceful and pain-free death or to live until a certain

milestone is reached (wedding, graduation, anniversary, for example). Typically, people

maintain a number of hopes at any one time, some of which may even appear to be

contradictory. For example, although hoping for a peaceful death, palliative patients

may simultaneously maintain a hope for a cure. What is important is that HCP recognise

the significance of hope to palliative patients and foster it through sensitive discussions.

At the same time, however, HCP must remain aware that false hope is as unethical as

false despair – an issue recognised by other authors who stated that a trusted, listening

ear was helpful, whereas offering false reassurances was not (Old 2008; Regnard et al

2003).

Whilst recognising that the balance between truth telling and respecting patients’ hopes

was difficult to achieve, Nekolaichuk and Bruera (1998) claimed that it was usually not

impossible as long as HCP were willing to suspend their own perceptions and

judgements and listen carefully and sensitively to what their patients had to say.

Importantly, HCP are encouraged to not jump to conclusions and to remember that

whatever conclusions they do reach might not be correct and are also likely to change

as the patient’s circumstances change. In this way, by taking account of the patient’s

individuality and changing needs, HCP can work with their patients to sustain hope

without providing false reassurances (Hauser 2007; Regnard et al 2003).

The imprudence of rejecting patients’ hopes outright was illustrated by the renowned

thanatologist, Dr Elisabeth Kubler-Ross (1969) when she referred to the seemingly

unrealistic ‘daydreams’ of some patients. The HCP were sure that the dreams were

impossible but refrained from saying so because they did not want to crush the patients’

hope. Ultimately, when the dreams came true, the patients were not surprised, but the


HCP were. These divergent views and the difficulties that HCP experienced as they

attempted to provide honest information, while still fostering patients’ hopes, will be

discussed in the ensuing sections.

Hoping for a ‘Good Death’ One of the major areas where tension was obvious between the hopes of patients and

the expectations of HCPs was the concept of a good death. In the current study, some

of the patients and the caregiver hoped for a peaceful and pain-free death. Although not

completely forsaking the possibility of a cure, some of the patients seemed to accept that

hoping for a peaceful and pain-free death was more realistic than hoping for a cure.

Nurses also hoped for a good death for their patients. Unfortunately, as will be shown in

the ensuing discussion, some of the nurses had pre-conceived ideas about what a good

death would entail and expected their patients to comply with their expectations which

were, after all, in the patients’ best interests. Or, at least, the patients’ best interests –

according to the nurse. There did not always appear to be much room for consideration

of the possibility that the HCP definition of a good death might not concur with their

patients’ definitions. The perspectives of participants on this sub-theme are presented

hereunder.

Patients As intimated in the previous chapter, the two older patients in this study (Gerry and

Gwen) had accepted their impending deaths. Even so, there was still room for hope as

both hoped for a peaceful and pain-free death:

‘… when the day comes for me to pass away, I’m wondering whether I’ll go through a lot of pain … and trying to endure it …’ (Gerry).

‘I suppose, though, like most people, I hope I don’t suffer’ (Gwen).


By contrast, the younger patient (Jemima) was less accepting that death was the only

outcome. As such, because her hopes were centred on finding a cure, she had not yet

given any consideration to the manner of her dying and what a good death might entail.

Caregiver Lucy had hoped for a pain-free and peaceful death for her husband. In this instance,

however, there was an obvious communication breakdown between Lucy and Bill’s HCP

as Lucy experienced difficulty in persuading the doctor to prescribe what she considered

to be adequate analgesia to ensure a pain-free death. For his part, the doctor was

reluctant to prescribe analgesia because he considered that cognitive alertness was

more important to Bill than relieving pain:

‘I said, “he’s suffering a lot”. I knew towards the end that he was suffering and, [the palliative nurse] said, “I want Dr N to give him something stronger”. But, she said he won’t give it to him because Dr N used to say to me “Bill’s a person that he likes to know what is going on around him”’ (Lucy).

In this instance, Lucy’s hope for a pain-free death for her husband was not realised

because the HCP believed that a good death for Bill would be one where Bill remained

cognitively alert, even if he was in pain. These divergent views created tension between

the caregiver and HCP because neither interactant was able to accept what the other

was saying.

Nurses Because some nurses had their own conception of what a good death would entail, they

wanted to prepare patients for a death that corresponded with these expectations.

Accordingly, they had certain views about how patients should spend the time remaining

to them:


‘… at a time where she sort of really needed to be moving through just really what was happening …’ (Celia).

Some of them appeared somewhat perturbed when the patient did not comply with their

expectations:

‘… it was very difficult from our perspective … in nursing someone who just was denying any sort of recognition of her situation, being able to talk honestly to her and prepare her, you know, for things that were going to occur or could occur. Um, that was very, very difficult …’ (Celia).

‘We were wanting her to spend quality time with her children but she was out trying to get these alternative therapies happening, right to the very last minute …’ (Diane).

Although nurses stated that they were trying to ‘help’ their patients, the spectrum within

which the help was available seemed somewhat restricted at times and determined by

the nurse:

‘… you really want to help “it’s about time you start to face and accept, you know, there are things you need to, want to talk about to your family, or your husband or whatever and you’re not going to have that opportunity and they’re not going to have that opportunity to say things to you because you won’t allow them to talk to you”. So, that was just tricky with that whole denial issue because you wanted to prepare, start preparing her, um ___ but she wouldn’t, just wouldn’t, wouldn’t have it, just wouldn’t have it …’ (Celia).

Because the patient had not concurred with the ideal of the good death propounded by

the nurse, the nurse felt aggrieved and was uncomprehending of the patient’s choices.

At the same time, the nurse appeared unwilling to accept the patient’s right to make her

own decisions and traverse her own pathway in her own way without judgement. There

appeared to be conflict in this instance because the nurse was unable to understand the

patient’s unwillingness to accept that she was dying. Instead, the patient continued to

search for a cure until a few days before her death.


Hoping for a ‘Good Death’: Comparison With the Literature Although it was noted that nurses in the current study and within the literature were

professionals who genuinely cared for their patients, there were some instances where

HCP seemed to be convinced they knew best and were somewhat uncomprehending

when patients remained firmly attached to opposing values and expectations. The good

death concept has been recognised as one area where such conflict was particularly

noticeable. Although HCP hoped for a good death for their patients, the notion of what a

good death would entail was at times determined by the HCP who were subsequently

disconcerted if the dying patient decided not to concord with their pre-determined ideal.

The theme of a good death as perceived by patients with malignant wounds, or those

caring for them, has not been discussed in the literature. However, the palliative care

literature does contain significant reference to the notion of a normative good death and

that literature is reviewed hereunder as it is also likely to apply to patients with malignant

wounds. According to some authors, the ideal of a good death was often to perceived to

be one where the patient and family were accepting of the outcome and progressing

along a pre-determined trajectory in a peaceful, conflict-free and timely fashion

(McDermott et al 2006; McNamara, Waddell & Colvin 1995; Payne, Langley-Evans &

Hiller 1996; Wilkes et al 1998). It was noted, however, that this notion was typically

constructed by HCP in a manner that reflected ‘the ways in which people from more

privileged social and economic circumstances would like their lives to end’ (McDermott

et al 2006, p. 14).

Other authors questioned whether the image of the normative good death was

constructed for the benefit of patients or the HCP, particularly when HCP in other studies

made statements such as: ‘It’s so much better when they fit into the standard “hospice


story” …’ (McNamara, Waddell & Colvin 1995, p. 238). In some of these instances, it

appeared as if there was little room for consideration of the possible emotional

disequilibrium for the patient and family if the patient was forced to die in a manner

discordant with their own ideals (Payne, Langley-Evans & Hiller 1996). Depending upon

the philosophy of the organisation assisting one’s dying, it appeared that one might be

expected to participate in the dying process – but only to the right degree. However, as

shown in the literature (McNamara, Waddell & Colvin 1995; Payne, Langley-Evans &

Hiller 1996, it was often the HCP who decided what the right degree was.

Also evident within the literature were beliefs by many HCP that their good death ideal

could be easily applied to multiple patients (Emanuel, Bennett & Richardson 2007). As

recently as 2006, for example, McDermott et al (2006) recognised the potency and

pervasiveness of the good death notion when they described it as a ‘powerful norm’ that

influenced palliative care professionals. Unfortunately, powerful though it was, the

authors also recognised that this norm was inappropriate in palliative care because of its

one-size-fits-all approach that was as inapplicable to death as it was to all other areas of

human existence. They suggested that there seemed to be little room for consideration

of the possibility that the good death would entail different features for different patients

(Emanuel, Bennett & Richardson 2007; Tulsky 2005).

An unfortunate consequence of such fixed conceptions of ideal patient behaviour is the

tension that may result when clients and families do not comply with this ideal; when

they seek to implement their own version of dying (McDermott et al 2006; Payne,

Langley-Evans & Hiller 1996). McNamara, Waddell and Colvin (1995) stated that it was

not unknown for HCP in these situations to feel aggrieved and accuse the patient of

being disruptive and/or in denial. For example, when patients did not comply with a


hospice-defined good death, nurses in a study by McNamara, Waddell and Colvin (1995,

p. 239) complained that they had been put ‘through hell’ as they tried to control their

patients’ uncontained emotions. One nurse in Wilkes et al (1998) discussed the plans

she attempted to implement to achieve what she considered would be a good death for

the client. She went on to describe as ‘disruptive’ her client’s denial which impacted

unfavourably on the nurse’s ability to implement her plans.

As suggested by Wilkes (1998), one unfortunate outcome of such fixed views might

manifest as substandard patient care as HCP, unable to overcome their disquiet arising

from what they judge to be their patients’ non-compliance, subsequently avoid these

‘deviant’ patients or provide a lower level of care than that provided to ‘compliant

patients’. This phenomenon of HCP displaying a preference for caring for palliative

patients who were dying in the ‘right’ way – one that was peaceful and accepting of the

outcome – was also noted in a study by Payne, Langley-Evans and Hiller (1996). In

these instances, HCP piously believed that they had done the right thing by the patient

by assisting them to die in the ‘right’ way. As a result, they were able to validate their

own self-worth and the system of values they shared with other HCP in the hospice.

Conversely, patients not dying properly in accordance with the pre-determined trajectory

were deemed to be deviant and/or in denial. By problematising them in this way, the

responsibility for the non-compliance was shifted away from the HCP and onto the

patient which was seen as further sanctioning the HCPs’ avoidance of those choosing

not to die in the accepted way (Payne, Langley-Evans & Hiller 1996).

Similar tensions were evident in the current study where nurses wanted a patient to stop

‘wasting her time’ searching for a cure and, instead, use that time to prepare for her

death. The nurses were certain that the patient’s hopes were unrealistic. Because they


were certain that their own views were in the patient’s best interests, however, they tried

to impose them on the patient and were perturbed when the patient refused to give up

hope and accept the views of the nurses. This phenomenon of nurses expecting a

patient to make time to prepare for death has been noted by other authors (Wilkes 1998;

Zimmermann 2007).

The preceding discussion has shown that, at times, HCP have been so convinced of the

rightness of their views that there has been little room for consideration of the possibility

that their expectations might not, in fact, be in the patient’s best interests and that the

patient may wish to traverse a different pathway. It appeared as if the HCP had lost

sight of the patients’ rights to decide what was in their best interests, and had

subsequently become judgemental and expected patients to comply with their fixed

views. What is yet to be investigated is whether the responses of the nurses in this

study were their typical responses or whether the complexity and confrontational nature

of malignant wounds was so intense that it impacted upon their usual mode of practice.

A solution to the problem of the HCP-defined good death was recognised by authors

who acknowledged the importance of fully accepting patient autonomy and relinquishing

control of the patient’s dying to the patient themselves. Instead of relying on a pre-

conceived notion of how somebody should die, they acknowledged that the patient was

in the best position to determine how they wanted to achieve this highly personal and

final act as a living person (Berger et al 2000; Callahan, Maldonado & Efinger 2003;

McNamara, Waddell & Colvin 1995). They recognised that, for some people, a ‘good

death’ may be one where they go out fighting, rather than in peaceful and passive

acceptance. Dylan Thomas (1952), for example, advocated a rageful death when he

said ‘do not go gentle into the good night’ (p. 116). Others may require that all the latest


technology be applied, while still others may prefer a lesser focus upon the technological

imperative. The benefits to patients of assisting them to die in the manner of their own

choosing are obvious but it is not only the patients who will benefit. For those HCP who

have no expectations about how a patient should die, there will be less likelihood of

them feeling aggrieved about the manner in which the patient ultimately chooses to die.

As noted by von Gunten (2006), there is no better way to determine what is important to

patients than asking them. It is not necessary for the HCP to agree with the answer.

However, as suggested by Malloy et al (2008), it is wise that they listen carefully and

respect the patients’ rights to hold their views. If disagreement does occur, instead of

countermanding the patients’ views with those of the HCP, Malloy et al (2008) suggested

that HCP ask themselves whether they are feeling aggrieved because they are not

getting their own way. Here again, the benefit of a trusting relationship between HCP

and patient becomes apparent as HCP will be able to learn what will entail a good death

for the patient and help them to set realistic goals – if the HCP listen carefully and

sensitively to the hopes and desires of their patients before it is too late (Emanuel,

Bennett & Richardson 2007; Old 2008; Steinhauser et al 2000; Tulsky 2005).

In the current study, Gerry and Gwen (patients) could be perceived as complying with

the notion of a good death as defined by HCP. Jemima (patient), however, would

probably be judged as ‘non-compliant’ because she was still seeking a cure and had

voiced the opinion that she was not ready to die yet. Unfortunately for Jemima, her HCP

had already judged her to be palliative and, therefore, might similarly judge her hopes of

a cure to be unrealistic and, consequently, label her as being in denial. According to the

view of reality of the HCP caring for Jemima, hoping for a good death might be one of


the few things she had left to hope for. According to Jemima, however, hoping for a cure

was still a realistic option.

Hoping for a Cure Hoping for a cure was more evident amongst those in the patient cohort of this study as

it seemed that the caregiver and nurses were convinced that a cure was not possible.

Their perspectives are presented hereunder.

Patients The younger patient (Jemima) had a different perspective to her older counterparts,

Gwen and Gerry, who were hoping for a pain-free death. On the one hand, Jemima

acknowledged that HCP had diagnosed her condition as terminal:

‘So, all it’s going to do is get worse because it can’t get better … it had gone to the bones and once it goes to the bones, well, they’re not interested in doing anything except keeping you without pain because they know they can’t cure you, it’s only palliative care …’ (Jemima).

However, she still hoped fervently that the experts were wrong:

‘I’ve just lived past every barrier they’ve given me and I’m just … still telling ‘em I’ll be here in ten years’ time’ (Jemima).

Jemima wanted to go on living because she felt cheated to be dying at such a young

age and there was still so much she wanted to achieve:

‘There’s things I haven’t done and I haven’t achieved and there’s things I wanna do and my family haven’t …’ (Jemima).

Jemima’s hope for a cure was demonstrated by her continuing research into her

condition and any developments in treatment in the hope of finding the longed-for cure:


‘… I do research on myself on just checking what’s happening and what’s advancing overseas … we’re enrolled in so many things overseas, you know, to get information’ (Jemima).

At no time during the interview did Jemima discuss her death. Although admitting that

HCP considered her to be palliative, she was so hopeful of finding a cure (and proving

the experts wrong yet again) that there was no room for consideration of the alternative

outcome – death.

Caregiver Lucy was not hoping for a cure for her husband. She had accepted the doctors’

prognoses and was hoping, instead, for a good death for Bill. Lucy hoped that Bill would

accept what the doctors were telling him, which might have led to him being less angry

and resentful She believed that a calmer attitude on Bill’s part would have made their

remaining time together more pleasant, as well as allowing Bill the opportunity to plan for

his remaining life and his approaching death. As Bill became increasingly unwell, she

hoped that his death would be peaceful and pain-free. Unfortunately, as will be shown in

the discussion on the next sub-theme, Bill did not share her views and this divergence in

their perspectives caused some tension in their relationship.

Nurses Nurses in the current study did not hope for a cure for their patients with malignant

wounds. They accepted that the patients were terminal and focused, instead, on

maximising their comfort and achieving a good death. In doing so, some sought to foster

their patients’ (at times seemingly unrealistic) hopes without proffering false

reassurances – an outcome by no means guaranteed of success and typically fraught

with difficulty and tension.


Hoping for a Cure: Comparison With the Literature Discussion in the literature about hope for a cure amongst patients with malignant

wounds was almost non-existent. The absence of discussion probably relates to the fact

that the majority of the literature was presented from the perspectives of HCP who knew

that malignant wounds were always terminal and, therefore, did not perceive hoping for

a cure to be a realistic option. Like the nurses in the current study, they tended to

consider that patients with malignant wounds who were searching for a cure were in

denial. Even the small number of articles that did present malignant wounds from the

experience of patients did not discuss patients’ hopes for a cure. There was, however,

some discussion on the topic of palliative patients hoping for a cure and that literature

will be reviewed in the ensuing discussion.

The experience of hope amongst palliative patients was investigated by Nekolaichuk and

Bruera (1998). They noted that contemporary Western society expects that medical

science has an answer for all illnesses and that if a cure is not currently known, one will

be found. As a result, ill people tend not so much to ‘hope’ for a cure as ‘expect’ one.

As noted by the authors, however, such all-encompassing belief systems leave little

room for consideration of other hopes if the expected cure is not forthcoming.

In the current study, Lucy’s (caregiver) husband, Bill, subscribed to this ideal. He did not

want to hear and could not understand why doctors were unable to cure him. As a

result, when his expectations for a cure were not met, he felt abandoned. Alternatives

might have been to hope for a peaceful, pain-free death or to hope to be remembered

(Breitbart & Heller 2003). However, as Bill did not accept that he was dying and

continued to adamantly state his opinion that a cure should be possible, there was no

space for him to consider hopes related to an alternative outcome. His hopes


(expectations) were so divergent from his caregiver’s and HCP’s views that

communication between them frequently resulted in conflict as neither party had any

common ground upon which to develop a successful dialogue.

Because many HCP understood the importance of hope, even seemingly unrealistic

hopes, they tried to foster them without proffering false reassurances. The difficulties

they faced in trying to achieve that balance will be the subject of discussion in the next

section.

Responding to Patients’ Hopes In the current study, the caregiver and nurses discussed their attempts to foster their

patients’ hopes while maintaining what they considered to be a realistic outlook. As

shown in the participants’ perspectives presented hereunder, difficulties could arise

when there was marked difference in these views.

Patients Gerry and Gwen had accepted the terminal nature of their condition, so there was

already sufficient overlap between their perspectives and those of their HCP to enable

effective communication. It was a different story for Jemima, however. While her HCP

were trying to communicate with her about her impending death, she was quite sure that

a cure could be found and that she would confound the experts. These divergent

perspectives problematised effective communication between them as neither party was

able to accept what the other party was saying.

Caregiver Although Lucy wanted to foster hope in her husband, she found herself caught between

the HCP prognosis and her husband’s adamant expectation that a cure was possible.

As she tried to act as mediator for the two opposing perspectives, she was unable to find


any common ground that might convince Bill of the likelihood of the doctors’ prognoses.

Because she had accepted the doctors’ prognoses, she was not hoping for a cure for Bill

but, instead, for a good death. Unfortunately, Bill’s hopes for a cure were so all-

encompassing that there was no room for consideration of any alternative outcomes,

even though doctors had attempted to discuss his terminal prognosis with him:

‘When he came back from Brisbane, from radium, a young doctor sat down beside his bed and said where do you want to die, at hospital at home?’ (Lucy).

Hence, it was difficult for Lucy to foster Bill’s hopes in the face of medical prognoses. Bill

did not share the views of his wife or HCP and could not understand why they were

talking about death when they should have been discussing how his malignant wound

might be cured. These divergent views were the cause of some tension in Lucy and

Bill’s relationship:

‘He was always very angry with everybody because he thought that the doctors weren’t doing anything to help him and he ___ couldn’t understand why they weren’t ___ must be ___ he’d say to me “there must be something they can do to help me” … he used to get really angry with me … then he’d say “I’m sorry, I .. didn’t mean, you know, to be angry but I’m ___”… he just couldn’t ever get through his head why there was nothing that they could do for him. As bad as it was, he thought there must have been something they could do for him’ (Lucy).

Lucy tried to help Bill understand the terminality of his situation and reframe his hopes

but he would not be convinced:

‘… I’d say “well, no,” I said “it’s cancer and it’s just not curable”. I said “you’ve had radium and it’s not ___ it hasn’t helped you. Chemotherapy wouldn’t have been any good”. But he, he wouldn’t accept that they, nobody could do anything for him … he said “there must be something somebody can do for me”’ (Lucy).


Bill was frustrated and angry with his doctors because he considered they should have

been able to cure his wound. Instead, they continually asserted to Bill the very thing that

he did not want to hear – that there was no cure. Although Lucy empathised with Bill’s

refusal to accept the HCP prognosis, she was not able to foster his hopes because she

considered them to be unrealistic. She found it emotionally draining to be constantly

telling him that a cure was not possible and frequently incurring his wrath as a result.

Eventually, she stopped trying to convince Bill of the futility of his expectations and

became a passive observer as Bill’s hopes for a cure continued to diverge from the HCP

perspective of the terminality of his condition.

Nurses Even moreso than the patients and caregiver, nurses also experienced tension when

they tried to reconcile their patients’ seemingly unrealistic hopes against what they

considered to be their own more realistic outlooks. They wanted to foster their patients’

hopes but without giving false reassurances:

‘… am I doing her a favour by trying to be optimistic, or should I try to be more honest with her?’ (Celia).

‘… try to give her positive feedback even though you could see it deteriorating. I mean, everything was just getting blacker and not improving at all, but you had to try and stay positive for her’ (Diane).

‘It’s not in fact appropriate culturally to have a conversation that crushes hope … trying to balance that with truth telling ___ and ___ duty of care …’ (Barb).

Some nurses felt they should maintain a positive outlook for the sake of the patient and

family. However, doing so was not without personal cost to the nurses:


‘It’s really hard even for the staff to go out there because, you know, you’ve got to keep a bright face on and everything like that and be positive for the family and it takes a toll on them …’ (Leanne).

One nurse spoke about wanting to give hope to her patient when she realised that there

was no hope:

‘… challenged my belief because the heart’s saying, you know, maybe a miracle can happen, where my head was saying “don’t be so stupid, Linda, reality, reality” … and reality sometimes can be very negative and it’s hard to give hope to somebody … pastor is very positive because he believes the slant of the Christian edict that God can move mountains and heal him and he was giving that false hope to the client where I’m coming in being negative, saying “well, you have got to look at reality” … So, it’s a very hard challenge because I wanted to give them hope but I knew there was no hope …’ (Linda).

Linda’s statement suggested a lack of understanding of the concept of hope which,

primarily, is determined by the person doing the hoping. Not only is it not possible for

somebody to give hope to a patient, but it is also up to the patient to determine where

and whether hope exists.

Responding to Patients’ Hopes: Comparison With the Literature The difficulties experienced by nurses in the current study as they attempted to be

realistic without crushing the hopes of their patients were reflected in comments made

by nurses in existing literature. Tulsky (2005, p. S-96) noted that patients wanted their

HCP ‘to achieve a balance between being honest and straightforward and not

discouraging hope’. Nurses wanted to foster hope because they recognised it as an

important adjunct in the treatment of palliative patients. Sometimes, however, they

considered the hopes of their patients to be unrealistic and, instead of taking the time to

understand the hopes of that particular patient, all too often labelled them as being in

denial.


Often, such conflict arises because nurses do not fully understand the concept of hope

amongst palliative patients. Like most human constructs, hope is a complex and

dynamic phenomenon. It changes and waxes and wanes as life circumstances occur.

In palliative care, hope might be particularly vulnerable because of the rapid and typically

unwelcome changes in patients’ conditions. As each change impacts, patients may

need some time to adapt to their new mode of being-in-the-world. At these times, old

hopes may need to be relinquished or reframed. However, such a process does not

occur overnight and should not be forced. As noted by McGrath (2004), many palliative

patients cycle through a process of hope/despair/hope as they adapt to changes and

attempt to take stock of their new mode of being-in-the-world. As a result, they may not

be hopeful all the time and there may be times when they need to feel despair. In what

she termed the burden of the ‘RA RA positive’, McGrath (2004, p. 25) noted the

imprudence of preventing such patients from experiencing despair and expecting them

to be positive and hopeful all the time. Rather than fostering hope all the time, she

suggested that the challenge resided in remaining open to the changing nature of hope

in the patient and supporting them when they were feeling despair.

Other hope-fostering strategies outlined in the literature included taking the time to

develop a caring relationship with the patient and family and learn about their hopes;

whether they be for a good death, for a cure or to reach certain milestones or attend

important events (de Raeve 1996; Herth 1990; Old 2008). With this greater

understanding of the patient, the HCP will be better able to accept the patient’s

engagement with the acceptance continuum as they come to terms with their terminality

and changing modes of being-in-the-world. Rustoen and Hanestad (1998, p. 19)

described such relationships as a ‘major task’ of professional nurses. It is


acknowledged, however, that relationships of this nature develop over time and, hence,

may not always be possible in the case of patients with malignant wounds.

Also important was the nursing strategy of ‘being there’ or ‘being present’ (Herth 1990,

1993; Malloy et al 2008; McGrath 2004) which recognises the importance of allowing

people to suffer, to be themselves, to endure – but to know that they are not alone in

doing so. Sometimes the simple act of being present may be the only support that can

be offered, but it will frequently be one of the most important.

The preceding discussion has shown that the divergence of views between patients and

their HCP sometimes meant that there was no common ground where effective

conversations might occur. These difficulties were recognised by Nekolaichuk and

Bruera (1998) who stated that holding conversations that are both truth-telling and hope-

fostering may be difficult in clinical practice, particularly in instances where patients are

so consumed with their hopes for a cure that they are unable to comprehend information

that does not fall within their narrow sphere of cognition. Contributing to these

communication problems might be the actions of those HCP who lacked an

understanding of the concept of hope and how to conduct sensitive conversations with

palliative patients. However, even those HCP with effective communication skills often

experienced difficulty in instances where patients asked questions to which they only

wanted certain answers – answers that the HCP would struggle to provide truthfully.

The tension experienced by nurses in these situations will be discussed in the next

section.


Answering the Difficult Questions This sub-theme only applied to nurses in this study as they were the only ones tasked

with answering the questions of their patients with malignant wounds. Their

perspectives are presented hereunder.

Nurses The preceding discussion has highlighted some of the difficult decisions faced by nurses

as they strived to foster hope amongst their patients even though there was little about

which to be positive. That they wanted to do so without proffering false reassurances

contributed to the complexity and sensitivity of the situation. Another area where tension

was obvious was decisions about the best way of answering patients’ ongoing questions

about improvements in the malignant wound. Some nurses believed that patients did

not really want to hear the truth but were actually seeking reassurance that the wound

was improving when, in fact, the reverse was true. As a result, they experienced tension

as they tried to provide answers that were both sensitive and honest; answers that were

truthful but did not crush the hopes of the patient:

‘… what used to make it hard is the fact that every little thing that you did, she wanted to know is it improving “how is it today?” … Asking “does it look any better, is it any smaller?” but it was just exploding before your eyes … She would ask “is it looking better?” every day “how is it looking?”’ (Celia).

Unfortunately, when malignant wounds were worsening on a daily basis, answering a

patient’s questions about improvement was especially stressful. If nurses answered

truthfully – that there was no improvement – hope might be crushed. On the other hand,

if they tried to sustain hope – by saying there was some improvement – they were aware

that they were being dishonest. Barb’s quote (partially displayed in Chapter Three)

provides an example:


‘… trying to be all normal … it’s all fine, no worries, Mr S, it’s all beautiful, no worries, it’s not at all …it’s just an alarming situation, isn’t it?’ (Barb).

Nurses also wondered whether they were lying to protect the patient or to protect

themselves from being exposed to the patients’ distressing reactions if the true extent of

their condition was revealed.

Answering the Difficult Questions: Comparison With the Literature There was limited discussion in the literature on the sub-theme of answering difficult

questions. West (2007) described an instance involving a patient with an anal malignant

wound who frequently asked nurses whether there was any improvement. Nurses

struggled over their answers as they wanted to be honest with him but were also

guarded about their responses in an attempt to avoid offending him. Eventually, a senior

nurse addressed the patient’s questions in a sensitive manner that recognised the

patient’s needs while respecting his autonomy. She explored the patient’s own views on

the wound and whether it was improving and was able to build upon his own knowledge

to deliver additional information in a sensitive and compassionate manner.

In the palliative literature, nurses in one study wondered whether they were ‘doing the

right thing’ when they ‘played the game’ with patients and their families who were

denying their prognoses (Palsson, Isovaara & Norberg 1995, p. 71). They felt that the

right action would be to intervene in family discussions and reinforce the correct

information but were reluctant to do so. Nurses described these situations as like

‘walking a tightrope’ (Palsson, Isovaara & Norberg 1995, p. 71).

As a result of the firmly-entrenched sensitivities in these instances, HCP discussions in

the literature demonstrated that the commonly experienced a range of feelings. For


example, those who were reluctant to reinforce correct information experienced feelings

of cowardice. Others experienced tension and uncertainty between providing what they

knew was a truthful answer and providing the information they thought the patients

wanted to hear, albeit information that the HCP knew was incorrect. In these difficult

circumstances, they wondered whether, in fact, dishonesty might be in the patients’ best

interests.

Similar to the dilemmas around truth-telling are the dilemmas associated with deciding

how much information to provide to patients and caregivers, particularly when answering

the difficult questions. Although the importance of accurate and comprehensive

communication is widely recognised, HCP may be reticent to do so in all circumstances

for fear of crushing the patients’ hope (Rustoen & Hanestad 1998). However, Old

(2008) and Tulsky (2005) stated that the majority of patients and their families

appreciated full disclosure and a realistic prognosis, particularly when it was delivered in

a sensitive fashion. Again, the importance is reinforced of learning about the patient and

how their hopes and desires will influence their need for information (Berger et al 2000;

Callahan, Maldonado & Efinger 2003; Fried & Bradley 2003; McSkimming et al 1999;

Stephenson 2004; Tulsky 2005). Cultural norms may also play an important role in

these decisions as Western society tends to favour truth telling and openness while

other societies (for example, Japanese) tend to prefer more abstract versions of

sensitive information (Emanuel, Bennett & Richardson 2007).

The concept of emotional labour has already been discussed in previous chapters. It is

evident yet again in this chapter in the discussion of the struggles faced by HCP as they

tried to decide how to provide the ‘right’ information in the ‘right’ way. One method for

overcoming these difficulties was suggested by Nekolaichuk and Bruera (1998) who


recommended that clinicians faced with answering the difficult questions should ‘weave

the threads of truth telling and hope into the fabric of care’ (p. 39). Ultimately, as

acknowledged by de Raeve (1996) all patients and all situations are unique; therefore,

all answers should be similarly unique. Even so, it is likely that there will be many

occasions when these strategies are unsuccessful. If the patient is resolutely denying

the seriousness of their illness, they may be incapable of comprehending information

that they do not want to hear, no matter how carefully it is delivered. This sub-theme of

denial represents the topic of discussion in the next section.

Denial Previously characterised as being in a dichotomous relationship with acceptance and as

being either adaptive or maladaptive, more recent research has illustrated that denial is,

in fact, a far more complicated concept that means different things to different people

(Telford, Kralik & Koch 2006). Hence, like so many other facets of human existence,

constructing a universal definition will remain an elusive task. Instead, appropriate

definitions will be selected depending upon the framework in which it is being used

(Chandra & Desai 2007). For the participants in this study, denial typically referred to

the patients’ inability to accept the terminal nature of their illness. Unfortunately, not all

nurses understood fully the concept of denial amongst palliative patients and the

resultant divergent views problematised yet again effective communication between

patient and HCP. The perspectives of participants on this sub-theme are presented

hereunder.

Patients Although acknowledging that HCP considered her illness to be terminal, Jemima’s

ongoing search for a cure and her assertion that she was still going to be here in ten

years’ time implied some degree of denial of the outcome suggested by HCP. The


challenge for HCP in this instance is to accept Jemima’s current position on the

acceptance continuum and to work with her in a non-judgemental and non-

confrontational manner to identify areas where hope might be fostered and more realistic

goals developed.

Caregiver Lucy was not in denial of the terminality of her husband’s condition or his impending

death. However, as shown in previous sections, she was affected by Bill’s denial of the

likely outcome and the resultant tension in their relationship.

Nurses Denial was frequently described as a challenge for nurses in the current study as

patients and family refused to accept the outcomes propounded by HCP:

‘… she was almost in total denial, total denial of her prognosis … that was just tricky with that whole denial issue … being able to talk honestly with her’ (Celia).

‘… this young girl … Unfortunately her sister had passed away about six months before with exactly the same thing, and the parents ___ the mother was sitting there, the father had refused to come because he didn’t believe his daughter was palliative … but the mother was still pushing for what could we do to cure ___ when you could virtually, there was half her face gone … It was very hard and they were in denial, definitely in denial …’ (Mandy).

Nurses believed that their patients’ denial made it difficult for them to raise topics that the

patient did not want to discuss. Diane discussed an instance when a specialist

practitioner had provided comprehensive information to the patient but the patient had

refused to accept it:

‘… the oncologist had explained absolutely everything to her at the beginning … the client was in denial …’ (Diane).


According to some of the nurses, their patients’ denial excluded the possibility of

discussions about a good death or reframing their hopes into more realistic goals. It also

increased the likelihood of nurses experiencing tension as they wondered how to answer

the questions being asked by their patients.

Denial: Comparison With the Literature Denial was identified by nurses, both within this study and within the literature, as one of

the personality traits exacerbating their ability to foster what they considered to be

realistic hopes in patients with terminal illness. Although denial amongst patients with

malignant wounds has received little coverage in the literature, one nurse participant in

the study by Wilkes et al (1998, p. 17) did recognise its significance when she described

it as ‘the most challenging of all problems’.

Denial amongst palliative patients in general, however, is a well-recognised

phenomenon and has received extensive coverage in the literature where HCP

described client and family denial of prognoses as a stressor and a challenge to their

provision of care. Despite this widespread recognition of its existence, however, the

complexity of denial and the uniqueness of each individual means that not only is a

universal definition unlikely, but it is also improbable that there can be a clear

understanding of when and why it might be invoked.

In the past, when denial was perceived as simply the opposite of acceptance, it was

viewed as a temporary coping strategy which, hopefully, would give way to acceptance.

However, if the denial remained unchecked and the patient failed to progress to

acceptance, it was reclassified as a pathological process which prevented patients from

seeking, or adhering to, treatment (Chandra & Desai 2007; Zimmermann 2007). The


thus demonised denial was blamed for impeding: open dialogue on the impending

death; dying at the location of choice; the cessation of futile treatments; advance care

planning; and control of symptoms (Chandra & Desai 2007; Zimmermann 2007).

Importantly, according to Zimmermann (2007), it became instrumental in upholding the

notion of the good death, already discussed in this chapter, primarily because it was

seen as impeding the ‘right way to die’. In these days of increasing patient autonomy, it

seems that there is still a predisposition amongst some HCP for constructing ideals and

expecting patients to conform to them.

Based on this simple definition of denial, those who chose not to openly acknowledge

their dying were all too frequently labelled as being in denial and, consequently, deviant

or non-compliant. It appeared that little thought was given to exploration of the reasons

behind the apparent non-conformation (Stephenson 2004; Telford, Kralik & Koch 2006).

Sometimes, the HCP were so convinced that patients were in denial that they

themselves denied the possibility of other explanations (Zimmermann 2007). They were

so preoccupied with trying to fit the patient into a particular framework (in this case, the

framework of denial), that they did not hear the stories their patients were trying to tell

(Telford, Kralik & Koch 2006).

Having been labelled as being in denial, it then became the patient’s responsibility to

correct the situation, presumably by overcoming their denial and moving towards

acceptance. As highlighted by Telford, Kralik and Koch (2006), however, such labels

may become pathological in themselves as people internalise them and they become a

self-fulfilling prophecy. This is particularly likely when the person imposing the label is a

figure of authority, such as a HCP.


Patients are not the only ones to display denial, however, as the actions of some HCP

suggest that they too are not immune to its influence. Although HCP denial was not

raised specifically by participants in this study, some of the responses of nurses who

were denying that patients had a right to choose their own manner of dying suggested

that denial was not the exclusive province of patients. It is a phenomenon that has also

been recognised in the literature where authors have acknowledged that HCP

sometimes pursued futile cures for their patients rather than experience the

discomforting discussion with the patient in which they were advised of their terminal

prognosis (Chandra & Desai 2007; Emanuel, Bennett & Richardson 2007; Old 2008).

Yet, as has already been discussed, when patients were advised of their terminality and

provided with unambiguous information, they typically expressed gratitude for the

doctor’s honesty which further strengthened the HCP/patient relationship and permitted

patients to make informed decisions (Berger et al 2000; Emanuel, Bennett & Richardson

2007).

More recent research on the concept of denial has characterised it as a ‘normal’

response to overwhelmingly stressful or traumatic phenomena and recognised it, not as

a unitary concept, but as a complicated and dynamic process that is neither good nor

bad (Chandra & Desai 2007; Stephenson 2004). Like the equally complex human

construct of hope, denial can occur at various stages in a serious illness and may

fluctuate as situations change (Stephenson 2004). Its use initially might delay the full

experiencing of certain distressing phenomena until such time as other personal coping

strategies have been invoked (Telford, Kralik & Koch 2006; Stephenson 2004). Denial

may be manifested in many different ways and has been noted to be more prevalent

amongst younger cancer patients than in older cancer patients (Chandra & Desai 2007).


Prior to challenging a patient’s apparent denial, careful consideration should be given to

all factors, including the injudiciousness of forcing patients to face situations before they

are prepared to do so. As usual, one size does not fit all and it will be necessary to

establish a trusting relationship with the patient to assess the best method of working

with any issues around denial. Stephenson (2004) suggested that HCP may also need

to address their own self-awareness to ensure their actions are not motivated by their

own self-interests. For example, the HCP must be sure they are not expecting a patient

to overcome their denial about approaching death simply because they want the patient

to become more accepting and compliant and, subsequently, make things easier for the

HCP. If, after due consideration, it is believed to be in the patients’ best interests to work

through their denial issues with them, Chandra and Desai (2007) suggested that it

should be done gently with strategies such as: restating the problem; looking for

inconsistencies; and seeking other cues that may help the patient deal with these issues.

Telford, Kralik and Koch (2006) recommended listening carefully and compassionately to

patients’ stories of how their illness had affected their lives. Listening in this way and

resisting the temptation to categorise will prioritise the patients’ experience while

recognising the complexity and uniqueness of each individual’s journey. Above all, HCP

should respect patients’ rights to cope at their own pace, even if this includes denial

(Stephenson 2004).

In the current study, Jemima (patient) might be categorised as being in partial denial.

She had acknowledged that HCP deemed her palliative but she was still hoping to prove

them wrong and was yet to accept that she was dying. Lucy’s (caregiver) husband, Bill,

could be considered to be a resolute denier. According to Lucy, he refused to believe

that death was the only outcome and remained firmly convinced that somebody would

be able to cure him, if only he was able to locate that person. When his HCP attempted


to discuss death with him, Bill became angry and wanted to know why they were not

discussing a cure. Lucy believed that, because Bill’s one hope could not be realised,

nothing else was good enough, and Bill’s anger was provoked at the least grievance.

Stephenson (2004) discussed a similar instance where a patient with metastatic rectal

cancer became angry when staff tried to discuss with him the terminal nature of his

illness. In this instance, the author considered that acknowledging the patient’s terminal

prognosis may have jeopardised his hope which represented his own coping strategy.

What this situation required was a sensitive understanding of the reasons for the

patient’s apparent denial, rather than labelling him and consequently expecting him to

overcome his denial.

Nurses in the current study discussed how denial on the part of the patient and/or family

impacted upon their ability to provide care in what they considered to be an appropriate

manner. One of the areas where this tension was particularly noticeable was that of

complementary therapies. Nurses’ responses to this particular difficult question will be


Complementary Therapies Because they were still hoping for a cure and/or had denied the medical prognoses,

some patients pursued complementary therapies in the hope that they would provide the

longed-for cure. Although acknowledging the patients’ rights to seek therapies outside

the mainstream biomedicine, nurses frequently believed that such patients were trapped

in denial. They were also often unsure how to answer patients’ queries regarding the

efficacy of complementary therapies and frequently experienced a range of emotions

when attempting to answer such questions. The perspectives of participants on this

sub-theme are presented below.


Patients Gwen and Gerry did not discuss complementary therapies. However, members of

Jemima’s family were involved in health promotion companies and regularly presented

new interventions for Jemima to trial in an attempt to slow the rapid expansion of her

wound:

‘… one of their manufacturers of something, where they’re getting their own products now, will say, “oh look, this’ll be really good for [patient], have a check into this”, so then we’ve got to start looking at what it breaks down into and what it is …’ (Jemima).

Unfortunately, with the exception of one instance where a supplement may have

facilitated some weight gain for Jemima, the complementary therapies had little, if any,

effect.

Caregiver Lucy did not discuss complementary therapies and it did not appear that either she or

Bill had sought any cures outside mainstream biomedicine.

Nurses Although nurses understood why some patients pursued complementary therapies,

some of them expressed incredulity at the unrealistic hopes of some patients who

pursued therapies that the nurses described as typically futile:

‘… even a week before she passed away, had plans to go and visit someone with some sort of electronic, electrical, electrical therapy who promised her that sort of virtually that was going to fix it and she just really believed that two weeks of this therapy … was going to be the ants pants … it was ridiculous’ (Celia).

‘… tried everything alternative. Had this special water sent to him …’ (Leanne).


They often felt that patients were being preyed upon by unscrupulous therapists and

experienced anger at what they perceived to be unconscionable exploitation of people in

vulnerable situations:

‘… she was into all her positive thinking and all her, um, alternative therapies and ___ I think that too impacts on me from the point of view that I think they can try everything you know, they try, they spend a lot of money on a lot of alternative therapies and yet you can see this hideous wound that’s never going to heal, so that’s sad’ (Diane).

‘… at quite a cost of course and I guess that was an issue that made me very angry ___ to somebody had ___ in my view preyed upon someone …’ (Celia).

Having said that, however, Celia also admitted:

‘… well I would, I’d be out there and I’d, I’d try and swallow and do anything and everything, you know’ (Celia).

Celia’s comments suggested that perhaps she could empathise with her patients’

actions, even though she appeared to be openly critical of them on several occasions.

Her statement implied that she was aware that her perceptions as a nurse would

probably be vastly different to her perceptions if she was to become a patient with a

malignant wound.

Complementary Therapies: Comparison With the Literature There was little discussion in the literature about patients with malignant wounds seeking

complementary therapies. What discussion there was noted that, when palliative

patients compounded their denial by seeking complementary therapies, nurses

experienced a range of emotions, including frustration and anger (Wilkes et al 1998).

These feelings aligned with those of Celia (nurse) in the current study who expressed

frustration with her patient because she would not comply with Celia’s attempts to


prepare her for her death. Instead, the patient was ‘wasting’ what should have been her

death-preparation time (according to the nurse) on the fruitless search for a

complementary therapy that would provide the hoped-for cure.

Although not discussing patients with malignant wounds specifically, nurses in the

literature described situations where palliative patients had requested their opinion of

complementary therapies. Again, they experienced tension between providing what they

knew to be correct information or providing the information they thought the patient

wanted to hear. They were concerned that if they were honest about the complementary

therapies, they would crush the hopes of the patient. On the other hand, if they

sustained the hope of the patient by telling them what they wanted to hear about the

complementary therapies, they were troubled by their less-than-honest replies (Palsson,

Isovaara & Norberg 1995).

Conclusion Already recognised within the literature, the importance of hope to human wellbeing has

been reinforced in the preceding discussion. Hope is widely recognised as a multi-

faceted, dynamic, intangible but valuable component of people’s lives, particularly those

faced with serious illness or other life-disrupting events. Even for those suffering the

devastation of a malignant wound, it was still obvious that hope played an important part

in their wellbeing as they hoped for a cure or a peaceful death or some other goal in life.

What was equally obvious, however, was that the hopes of patients frequently diverged

markedly from what HCP considered to be a more realistic outlook.

Because they recognised its benefits, HCP generally strove to sustain hope in their

patients while simultaneously remaining cognisant of the importance of providing


accurate and comprehensive information. Unfortunately, it was not always easy to

adhere to both principles and HCP often found themselves trying to strike a balance

between the two as they attempted to foster their patients’ hopes without providing false

reassurance. There were several areas where this tension was obvious:

1. Deciding on the degrees of truthfulness (hope-sustaining ↔ hope-crushing); 2. Deciding how much information to provide; 3. Deciding how to deliver the information; 4. Expecting the patient to die according to HCP-defined notions of a good death; 5. Wanting to prepare a patient for death when that patient was obviously in denial; and 6. Deciding how to respond when patients sought complementary therapies.

Of these areas, the one most likely to manifest the tension between patients’ hopes and

HCP expectations was the typically HCP-defined notion of a good death. Some HCP

believed that patients should follow a pre-determined death trajectory. If, however, the

patient did not agree with the HCP’s expectations and elected not to adhere to them,

tension and even conflict could result. One of the attributes that often contributed to the

conflict associated with the HCP-defined good death was that of denial on the part of the

patient and/or family. HCP have been known to label patients who were hoping for a

cure or pursuing complementary therapies as being in denial. By labelling the patients in

this way, it was then possible to blame the patients when the HCP were prevented from

assisting them to prepare for a good death. Denial was also blamed for the difficult

questions that patients asked; questions that were difficult to answer because HCP

believed that only certain information would be welcomed. Aware that the truth might be

hope-crushing, HCP experienced tension as they struggled to provide honest answers

without crushing hope.

In their own way, most HCP tried to support patients’ hopes while maintaining their own

integrity as professionals and their compassion as fellow human beings. However, a few


expressed irritation when their patients declined to comply with expectations. Not only

did these nurses risk being accused of paternalism because they believed that they

knew best, but they were also displaying a concomitant lack of tolerance as they

expected their patients to adopt their viewpoint without simultaneously attempting to

understand better how the patients had arrived at their own viewpoint.

Learning about the patient and understanding their hopes and desires was one of the

strategies recommended for overcoming the tensions commonly associated with

achieving the balance between truth-telling and hope-fostering. As well, HCP were

encouraged to question their own motives and not attempt to steer patients into

frameworks that may not be suitable. In this way, the delicate balance between truth-

telling and hope-fostering, might be sustained.

One hope often expressed by palliative patients is the hope that they will be

remembered after death. Unfortunately, as will be discussed in the next chapter,

although patients with malignant wounds are typically memorable, it is not likely that the

memories their care actually does invoke will be those they might have wished for.


Implications for Future Research 1. This study has demonstrated that nurses are impacted significantly when caring for

patients with malignant wounds, to an extent that they are affected both personally and professionally. What is the possibility that those effects might adversely affect the care the nurse is consequently able to provide to patients with malignant wounds?

2. What is the propensity of patients with malignant wounds to seek alternative therapies? Is this action related to denial of their terminal prognosis?

Additions to the Literature 1. Examination of the good death

concept as perceived by patients with malignant wounds and those caring for them.

2. Discussion on the concept of hope amongst patients with malignant wounds and those caring for them.

3. Even though typically palliative, some patients with malignant wounds still hoped for a cure. Sometimes, this hope occurred in tandem with the hope for a good death should the hope for a cure not be realised. At other times, the hope for a cure was so consuming that there was no room for alternative hopes.

4. Addressing the difficult questions asked by patients with malignant wounds, particularly those relating to improvement in a wound that was clearly worsening.

5. The concept of denial amongst patients with malignant wounds and those caring for them.


Substantiating Existing Literature 1. The importance of hope as a coping

strategy, particularly in times of suffering or trauma.

2. The human constructs of hope and denial are complicated phenomena that typically occur across a spectrum rather than dichotomously. A universal definition for either construct is not feasible as they mean different things to different people.

3. Denial is not the exclusive province of patients; some HCP experience it also.

4. Difficulties in communication between HCP and patients when HCP had fixed views with which the hopes of patients were in marked divergence.

5. Such divergence was particularly noticeable in the notion of a ‘good death’ which was often defined by HCP who expected their model could be applied to multiple patients and were aggrieved when patients chose not to comply.

6. Aligned to the good death concept was the expectation of HCP that patients would take time to prepare for their death.

7. Listening carefully to what patients have to say will increase HCP understanding, lead to better treatment plans and reduce the chance of patients being forced into pre-determined, but possibly inappropriate, frameworks.

8. Difficulties were experienced by some HCP as they attempted to retain what they considered to be a realistic outlook without crushing the hopes of their patients which they considered to be unrealistic.

9. Hope-fostering strategies included: listening carefully and non-judgementally; accepting the patient’s position on the acceptance continuum; and ‘being there’.



Chapter Six: Enduring Memories Acknowledgement that malignant wounds were an intense and unforgettable experience

was reflected in the overarching theme arising from this research project. Up to this

point, however, discussion has focused upon the intensity with which malignant wounds

typically impact upon the lives of patients, caregivers and nurses. It is now time to

consider the second adjective of the overarching theme: the unforgettable nature of

malignant wounds. Even so, the inter-connectedness of both adjectives will be reflected

yet again in this final discussion chapter as it argues that it is the very intensity of

malignant wounds that contributes to their enduring memorability.

The central argument of this chapter will be that because of the intensity with which

malignant wounds impact upon those who care for the patients, the memories of that

experience are typically vivid and easily triggered. This memorability is demonstrated by

nurses’ ability to clearly remember details of patients with malignant wounds even

though the patient may have died many years previously. Frequently accompanying

these recalled memories were the emotions nurses had experienced whilst caring for

patients with a malignant wound. Unfortunately, the majority of those emotions were

negative.

Also argued in this chapter will be that one of the factors contributing to the memorability

of patients with malignant wounds is the ‘hidden’ nature of this type of nursing work.

Although not raised specifically by any of the participants in this study, this topic was

considered significant because it was raised in the malignant wound literature and

because it was recognised as capable of impacting upon the coping skills discussed by

nurses in this study. It is well recognised within the literature that the nature of much of


nursing work is not suitable for public disclosure because its revelation would be

distressing to those who are emotionally stable and in possession of a healthy and

bounded body. Hence, such work remains hidden. Because of the distress, malodour

and deteriorating body parts associated with malignant wounds, the care of such

patients typically falls into this category of the hidden work of nursing. As a result, it is

considered that this issue is relevant to this discussion, particularly as this hiddenness

may contribute to the enduring nature of the memories of nurses caring for patients with

malignant wounds. Discussion on this topic will review evidence suggesting that if

people are unable to talk about their distressing or traumatic experiences, they may be

unable to process them in a healthy fashion.

This chapter will differ from the previous three discussion chapters in two ways. Firstly,

its post-mortem aspect means that only the perspectives of caregivers and HCP will be

included. Secondly, the theme of enduring memories has received negligible attention in

the literature. Consequently, as there is little existing literature against which to compare

the views of participants, this chapter is the shortest of the discussion chapters. There

are some similarities with other chapters, however, as discussion will be arranged

around the sub-themes that were revealed in the analysis of data:

i) Memorability; ii) Lengthy periods of memories; iii) Triggers; iv) Coping with the memories; v) Good memories.


by presentation of the perspectives of patients, caregiver and nurses relating to that



existing literature. Together, the sections will present a detailed picture of the enduring

nature of memories amongst caregivers and nurses caring for patients with a malignant

wound.

Memorability Throughout the interviews conducted for this study, it was obvious that the caregiver and

nurses maintained vivid and enduring memories of the patients with malignant wounds

for whom they had provided care. A previous chapter discussed the intensity of caring

for patients with malignant wounds and the resultant impact upon caregivers and nurses.

It now seems as if the intensity of these experiences has resulted in them being seared

irrevocably into the memory of the caregiver and nurses, ready to be re-experienced with

remarkable clarity whenever a reminder is triggered. Their perspectives are presented

hereunder.

Caregiver Lucy discussed her memories of caring for Bill as his malignant wound progressed. As

noted in previous chapters, she described her caregiving role as a ‘full time job’ and

spoke about how much the wound and its demands dominated every waking moment

and frequently interrupted her sleep as well. Lucy described Bill’s wound as ‘a terrible

thing’ and empathised with his belief that he was being punished for something. She

attributed the caregiving role to deteriorations in her pre-existing morbidities (angina,

back and knee problems). As a result of the intensity of these experiences, Lucy has

vivid memories of the wound and its impact on both their lives.

The vividness with which Lucy was able to recall the details of her caregiving experience

demonstrated the memorability of what was for her an intense and unforgettable

experience. Prior to commencing the interview, Lucy remarked that she had some


photographs to show the interviewer. She advised that she only kept the photographs to

show to other people because they often did not believe the extent of the wound when

she described it. Lucy stated that she never looked at the photographs herself because

she did not need to. She was emphatic that she would never forget that ‘terrible, terrible

wound’ and implied that the sight of it was burned indelibly into her mind.

Lucy admitted that she was still angry at the malignant wound and the changes it had

wrought upon the lives of both Bill and herself. It had eventually cost Bill his life but Lucy

wondered sometimes whether he was the lucky one because she was still living with it.

Even though they were only memories, they were so vivid that Lucy often felt as if she

was still living the experience. Even now, three years after Bill’s death, Lucy continues

to relive the experience, repeatedly thinking about what happened to Bill, how the wound

changed him and wondering why it had happened to them:

‘I often sort of lie in bed of a night and think it sort of goes all through my mind all the time. How, what he was like and how he changed and …’ (Lucy).

Particularly notable was her assertion that it ‘goes all through my mind all the time’,

indicating that she still thinks about the wound on an almost constant basis. At these

times, while she is thinking about the wound, she continues to wonder whether there

were things she might have done differently:

‘…I sort of felt guilty in a way. I shouldn’t have but I felt guilty because I thought maybe there was more I could have done for him and I didn’t do but … I did all I could, you know what I mean?’ (Lucy).

Lucy resented the intrusion of the wound into their lives while Bill was still alive and still

resented it now that he was dead. She stated that the experience had been so awful


she would never be able to forget it, no matter how hard she tried. Lucy wanted to think

about other things and maybe concentrate on enjoying her own life but she felt that the

malignant wound was not finished with her yet and was continuing to exert its malevolent

influence over her life.

Nurses Nurses also discussed the memorability of malignant wounds:

‘This other lady we had who I’ll never forget …’ (Abby).

Sometimes, particular aspects of certain cases made them more memorable:

‘So, because of this religion that denied her any sort of treatment, any sort of dignity, any sort of palliative care pain control, that’s, that’s probably, that and, and the odour was the biggest thing that, um, that I remember this whole circumstance around …’ (Celia).

‘The one that sticks in my mind the most was a very young man that had a melanoma and refused to let his family into the room to see him …’ (Mandy).

They also acknowledged that the degree of impact influenced the memorability of

patients:

‘…a number of people, we have, you know, sort of a dozen people within our mind which we easily recall from our entire career that were incredibly complex and stayed with us … I recall that with such vividness ...’ (Loretta).

‘I remember people in circumstances of complexity and things that I, I struggled with myself personally and professionally … certainly people who were having and experiencing a fungating wound would certainly be up there’ (Barb).


Already discussed in previous chapters were the traumatic experiences often associated

with nursing patients with malignant wounds. These experiences made the

circumstances even more memorable:

‘… the vision of that constantly reliving itself in her memories’ (Loretta speaking about an instance where a patient’s eye had ‘plopped out’ while a community nurse was dressing her facial wound).

‘You know, the first time you see, um, somebody’s, um, carotid artery blow as a result of their fungating wound. You never forget that image’ (Barb).

Similarly, the malodour (discussed in a previous chapter) also contributed to the

memorability of malignant wounds:

‘…that’s the one thing that I remember about fungating wounds that they are always extremely odorous ___ always’ (Marion).

‘…it’s a smell that never leaves you’ (Loretta).

It was evident that the caregiver and nurses considered their malignant wound

experiences to be intensely memorable. Despite the intensity and vividness of such

memories, however, their significance and possibly enduring influence do not appear to

have been widely recognised.

Memorability: Comparison With the Literature Existing literature contained only scant reference to the memorability of caregiver and

nurse experiences. What literature there was suggested that experiences that were

traumatic or intense had greater propensity to be remembered vividly over long periods

of time and to be subject to easy recall. The literature also discussed the possibility that

such memories might even be manifested as symptoms of post traumatic stress


disorder. There was also some discussion in the literature of the possibility of the hidden

nature of much of nursing work contributing to its memorability. Ensuing discussion will

review these possibilities; the former from the perspectives of caregivers and the latter

from the perspectives of nurses.

Caregiver Because there is no discussion in existing literature on the memorability of experiences

associated with malignant wounds, discussion in this section will review literature on the

general effects of caregiving to enable comparison of Lucy’s experiences with those of

other caregivers. Although the existing caregiver literature is substantial, however, it

must also be stated that the vast majority focuses on immediate effects as there has

been little research into the long-term effects upon caregivers from any caregiving

experience (Grande et al 2009). This lack of information on the long-term effects makes

it difficult to presuppose whether the memorability of Lucy’s experiences is indicative of

caregiving experiences in general or whether it is only relevant to those caring for

patients with malignant wounds. Hampering any such presuppositions still further is the

total lack of research into the long-term effects upon caregivers who have cared for a

patient with a malignant wound. A review of the small amount of work that has been

done on long-term caregiving in general, however, has intimated that enduring memories

such as Lucy’s are not uncommon (Bishop et al 2007). This intimation is supported by

the comments of participants in Lawton’s (1998) study who found themselves ruminating

for extended periods of time over the distressing nature of their loved one’s death.

Herth (1993) stated that one of the risk factors for memories remaining vivid in the minds

of caregivers was poor symptom control. This risk factor definitely applied to Lucy as the

exudate and malodour associated with Bill’s malignant wound were poorly controlled

symptoms, resulting in increased distress for them both and increased physical exertion


for Lucy. Towards the end of his life, Bill also experienced uncontrolled pain which

exacerbated again the distress experienced by them both.

One of the few studies into the long-term effects of caregiving was conducted by Bishop

et al (2007). They studied the long-term impact upon caregivers caring for cancer

patients. The study findings – that partners frequently experienced greater emotional

and physical stress than patients – accorded with findings in existing literature. What

was new, however, and described as ‘striking’ by the authors was the finding that the

adverse effects of caregiving were still evident an average of seven years after the

caregiving experience had ended ‘when presumably active caregiving is long over’ (p.

1409). More research is required to elucidate the long-term effects of caregiving but it

appears that Lucy’s enduring memories may not be an isolated example. What is also

unknown, but will be difficult to predict, is the period that Lucy might continue to

experience her enduring memories.

For Lucy, her enduring memories may also be indicative of possible psychological

disorders. Although Lucy herself did not describe her experience as traumatic, some

nurses have suggested that caring for patients with malignant wounds is probably a

traumatic experience for lay caregivers (Chaplin & Curie 2004). In any event, Lucy’s

descriptions of her experiences and the continuing influence of the malignant wound

upon her life are suggestive of a traumatic experience. If this is the case, consideration

could be given to the possibility of caregivers suffering from post traumatic stress

disorder (PTSD) as a result of their caregiving experiences.

The National Institute of Mental Health (NIMH) in America has stated that the serious

illness or death of a loved one can result in PTSD. Symptoms include: flashbacks or


reliving the traumatic experience; not being able to control one’s thought processes;

negative feelings (guilt, sadness, anxiety); feeling alone; dyssomnia; and bad dreams

(NIMH 2009). Without wishing to apply a diagnosis to Lucy, it can still be seen that she

has experienced risk factors that could result in PTSD and is also showing symptoms

that might suggest such a diagnosis.

Rather than PTSD, Porat (2008) has suggested an alternative disorder that might be

applicable to caregivers caring for a palliative loved one: End-of-Life Traumatic Stress

Disorder (ETSD). He proposed that it might be an appropriate diagnosis for caregivers

who were experiencing ‘intense fear, helplessness, irritability, and loss of control’ (p.

957). Its symptoms would be similar to PTSD but, by applying a more specific

description, HCP might better understand what caregivers are experiencing and be

better able to assist them.

Either way, whether it be manifested as PTSD, ETSD or some other mental health

disorder, it is generally recognised that caregiving for terminal patients can be a

traumatic experience. Therefore, if the caregiving experience is exacerbated by the

demands of a malodorous and constantly oozing malignant wound which appears to be

malevolently and inexorably consuming the body of the caregiver’s loved one, it would

be reasonable to expect that the chances of developing a stress disorder would be

magnified. It would also be reasonable to expect that such a disorder might include the

kind of rumination and enduring memories demonstrated by Lucy in the current study.

As there has been minimal investigation of the long-term effects of the caregiving

experience in general and none into the effects of caregiving for a loved one with a

malignant wound, there is no existing literature to support the possibility of caregivers

experiencing PTSD. However, as disorders can only be treated when they are


recognised, research into the possibility of PTSD amongst surviving caregivers might be

helpful in treating future survivors of the caregiving experience.

Nurses Literature on the issue of enduring memories amongst nurses was non-existent.

Consequently, there was no discussion against which to compare the experiences of

nurses in this study. The lack of existing literature was somewhat surprising because

the fact that this topic was raised by every nurse participating in this study suggested

that it was a significant, although seemingly unrecognised, issue for nurses.

Although not necessarily reaching the stage where a diagnosis of PTSD might be

considered, nurses in this study still described memories of malignant wounds that were

enduring. Of the fourteen nurses interviewed for this study, every one of them

mentioned the memorability of patients with malignant wounds. They discussed their

abilities to remember the patients’ names, addresses, circumstances and even the

medications and dressings that had been used to manage the wound. Nurses also

discussed the difficulties they experienced in forgetting such instances and attributed

this memorability to the intensity of the experience.

One reason postulated for the lack of recognition in the literature of the impact upon

nurses caring for patients with malignant wounds is the public revulsion for bodies that

are malodorous, discharging uncontrollably and/or disintegrating. As a result of the

distasteful nature of such work, much of it remains concealed but acknowledged as the

‘hidden’ work of nursing. Although the relevance of this topic to the management of

patients with malignant wounds has been acknowledged in the literature (Aranda 2001;

Wilkes, Boxer & White 2003), it was not raised directly by nurses in this study. What

they did intimate, however, was a lack of opportunities where such matters might be


discussed. As will be shown hereunder, this inability to disclose experiences of caring

for patients with malignant wounds will contribute to the retention of their status as

hidden work of nursing.

There is a paradox between the enduring memories invoked when nursing patients with

malignant wounds and the hidden nature of that work; work that others would consider

repugnant and many would not be able to perform. Unfortunately, this hiddenness

obstructs recognition of the skills employed by nurses when dealing with complex or

sensitive nursing tasks. Another drawback of the hidden nature of this work is the

resultant lack of opportunities for nurses to openly discuss these aspects of their work

(Aranda 2001). Hence, this hidden work frequently becomes the stuff upon which

enduring memories are based. The paradox arises because this work remains hidden

from the public at large but looms large in the memories of HCP, not only because of the

distress and trauma involved but often because there has not always been access to

appropriate mechanisms for HCP to deal effectively with those experiences and the

memories they invoke. Nurses may be successful in their efforts to hide their distressing

work from others but they may not always be so successful in hiding it from themselves.

Existing literature recognised the myriad difficulties often incurred in nursing work and

the tendency for these complex or sensitive aspects to remain hidden (Aranda 2001).

Although these discussions highlighted the emotionally stressful nature of much of the

work done by nurses, they tended to do so from a general and current aspect. There

has been little investigation of the long-term effects on nurses of caring for patients with

specific disorders.


Wilkes, Boxer and White (2003) attempted to apply some specificity to the discussion

when they suggested that nursing decaying bodies, particularly those with malignant

wounds, frequently qualified as hidden work. They suggested that such work was

viewed as distasteful because the subject bodies no longer conformed to the Western

societal ideals of boundedness and should therefore remain hidden, along with the

nursing tasks performed upon them. It might also be argued that the distressing

emotions typically associated with malignant wounds are often also hidden as their

revelation might be uncomfortable for those who are emotionally stable and in

possession of a healthy, bounded body.

Aranda (2001) noted that nurses have tended to acquiesce with these norms by

maintaining the hiddenness of their work, often only discussing it with other HCP.

However, Wilkes, Boxer and White (2003) questioned whether hiding the important work

of nurses was actually in the best interests of nurses and their patients and families.

Similarly, Aranda (2001) suggested that hiding the important, albeit distressing, work of

nurses might harm both nurses and their patients as neither party was willing to discuss

the ‘undiscussable’ and, hence, it would remain concealed but not forgotten. It tends to

be the case, unfortunately, that those aspects of human life which we least like to

recognise and would most like to forget are those that we are most unable to forget

(Crago 1997; Haaken 1998). They endure. Recognising this characteristic, Aranda

(2001) recommended that the hidden work of nurses be revealed in order to facilitate

greater understanding of the experiences of patients, as well as those who care for

them. Such greater understanding could lead to recognition and validation of distressing

and traumatic experiences such that they became less enduring.


Unfortunately, by protecting others from the effects of a malignant wound, nurses may

also be denying themselves an opportunity to deal successfully with the impact of the

wound upon their own being-in-the-world. As a result, their negative memories of a

human-in-distress are compounded by their inability to discuss them with others and, in

so doing, work towards a more positive reframing of their experiences. Fortunately, the

impact of distressing work upon nurses has been recognised and they are increasingly

being provided with the opportunity to debrief or to access formal counselling services

which will assist them to deal with traumatic or distressing experiences (Wilkes, Boxer &

White 2003); to discuss the formerly ‘undiscussable’. Even so, purely because of the

intensity of the experience, it is likely that patients with malignant wounds will remain

memorable for nurses. Ongoing access to support mechanisms will assist nurses to

cope effectively with these memories and render them less intense and negative.

Discussion in this section has demonstrated the ease with which the caregiver and

nurses were able to recall vivid details of their experiences of caring for a patient with a

malignant wound. What was equally obvious was the extraordinary length of time some

of those memories had endured. This aspect of the enduring memories will be


Lengthy Periods of Memories Many of the nurses in this study spoke about the lengthy periods of time over which they

had retained vivid memories of patients with malignant wounds. Because they were the

only cohort experiencing memories spanning many years, however, ensuing discussion

in this section will focus on their experiences.


Caregiver It is only three years since her husband died, so Lucy’s memories are somewhat shorter

than some of the nurses. It remains to be seen how long her memories will remain vivid

but she has already stated that she will ‘never, never forget’ what happened to her

husband.

Nurses The lengthy periods of some nurses’ memories were clearly evident in the interviews:

‘… this was probably in 94, 95, so I’m not talking last week and I can, I can still remember what she looked like, I can still remember what her breast looked like, and I can still remember the smell and I too drive past that house and I can almost not look at it, um, because it, you know, you, you have to try and find some way of disassociating yourself from it …’ (Lynette).

‘…probably about twelve years ago … I’ve never forgotten her and I don’t think I will ever forget her and the sadness and for so long. We were going to her for well over a year … she’s the one I guess who had an ongoing memory and feeling impact for me’ (Loretta).

‘But it’s interesting, though, there are certain people and certain images even now, you know, ten, twenty years later, we can still recall with absolute clarity … they are the sort of things that don’t, they don’t fade … I will never forget their faces, their names, the circumstances of the situation, doesn’t matter how long it is’ (Barb).

‘…this was quite a few years ago and we’re still talking about it’ (Mandy).

‘I remember, we had a client in hospital years and years ago … it just got bigger and bigger and it just sort of, this big hole and you could see inside, into his chin, you know, and you just couldn’t contain it. Every time he ate, it went through into …’ (Cindy).

‘…this lady, you know, she stands out in my mind because her wound was particularly horrible. It was large, probably 7 inches round and just like a dinner plate on her chest wall because the majority of the front of the breast had been eaten away...’ (Marion).


Marion did not specify the period of time over which she had retained this memory.

However, she did state that she had nursed the patient early in a nursing career

spanning over thirty five years. It should also be taken into account that some of the

nurses participating in this study were recent graduates who had not had time to retain

memories over lengthy periods. In years to come, it is possible that they will also be

able to articulate sentiments such as those expressed by the more senior nurses in the

above interview excerpts.

Lengthy Periods of Memories: Comparison With the Literature Perhaps because the memorability of caregiver and nurse experiences has not been

discussed in the literature, it is not surprising that the lengthy duration of those memories

has also escaped attention. Saunders (1997) was one author who did refer to an

instance where the management of a patient with a malignant wound was vividly

remembered by nurses. However, the period since the patient’s death was only one

year. She stated ‘A measure of the vividness of the experience is that even now, nearly

a year later, nurses recalling [the patient’s] wound care procedure are aware of a

pervasive smell’. Even though the period was short, the statement suggested that

nurses’ lingering memories demonstrated the impact of caring for a patient with a

malignant wound.

For some nurses, even though the patients with malignant wounds had died up to twenty

years previously, they still remembered the circumstances well. Nurses recognised that

much of their work was complex and distressing. However, patients with malignant

wounds tended to be the cases that they remembered with intense clarity, as if their care

had ended only a few days (rather than years) previously. Even those nurses who

professed not to be affected by malignant wounds were able to clearly recall the


circumstances of malignant wounds that had been particularly poignant. Roxanne, for

example, had stated that she was not affected by patients with malignant wounds.

However, she did admit that she had been emotionally upset at the death of a teenager

with a malignant wound and was able to remember the patiently clearly even though he

had died over ten years previously.

Perhaps because of the intensity of the experiences of the caregiver and nurses and the

vivid memories they invoked, such memories were easily triggered. The next section will

look at the triggers that invoked those memories.

Triggers Participants outlined the many triggers that brought to mind memories of their malignant

wound experience. Although care may have been provided many years previously, the

triggers led to nurses clearly recalling the circumstances of patients with malignant

wounds for whom they had provided care. The perspectives of the caregiver and nurses

on this sub-theme are presented hereunder.

Caregiver Lucy’s memories of caring for her husband, Bill, were triggered on a daily basis because

she was still residing in the home she had shared with him before he died; a home that

contained numerous triggers that continually reactivated her thoughts and feelings from

the time that she cared for Bill. Even though the malignant wound always seemed to be

in her thoughts anyway, these triggers intensified her memories and she found herself

ruminating over the malignant wound several times every day. Lucy stated that she had

to make a conscious effort to redirect her thoughts away from the wound so that she was

not spending her entire day thinking over what had happened and whether there might

have been anything else she could have done to help Bill. Unfortunately, she was not


always successful, particularly at night when there was little else to distract her thoughts.

Although wishing to leave the residence and relocate to somewhere where her

memories would not be so easily triggered, she was unable to do so as she could not

meet the costs of relocating elsewhere.

Regardless of their origin, one factor guaranteed to ignite Lucy’s memories was bad

smells. Whenever Lucy detected bad odours of any kind, she was immediately

reminded of the offensive and overpowering malodour from Bill’s wound and able to

smell it all over again. She was not certain whether the smell was ‘all in her mind’ or

whether it had actually permeated their residence so pervasively that she might never be

able to eradicate it entirely. Even though the carpets, furniture and curtains had all been

cleaned, Lucy was certain that the malodour was still detectable. She suggested that it

would be impossible for anybody to forget such a strong and offensive smell or many of

the other adverse features of her caregiving experience that were constantly being

revived in her daily life.

Nurses Nurses also discussed the ease with which memories and the associated emotions were

triggered:

‘… and these days, every time you mention, any time anybody mentions the word [religious organisation], or [famous devotee of religious organisation] or any of that, I just ___ I just feel so, so angry’ (Celia).

‘I’ll never forget the house, I drive, even today I drive past that house and it all just comes, comes back to me …’ (Celia).


Nurses even spoke about taking different routes to avoid driving past houses or into

areas that they knew would re-ignite their memories; memories that they typically did not

want to recall because of their negativity.

Triggers: Comparison With the Literature Unlike the nurses in this study, reports in the literature did not discuss specific events or

circumstances that triggered nurses’ memories of patients with malignant wounds.

Again, the fact that there has been no recognition in existing literature of the enduring

nature of the memories associated with unpleasant caring or nursing experiences means

that sub-themes such as triggers have been similarly overlooked. However, nurses in

the current study considered the triggering of their enduring memories to be significant

as they discussed particular events or circumstances that triggered these typically

unpleasant enduring memories. They also spoke of strategies they invoked to avoid

triggering those memories and to cope with them if they were raised. This topic of

coping with the memories will be discussed in the next section.

Coping With the Memories Participant comments for this sub-theme are presented from the perspectives of nurses

only as the caregiver did not appear to have invoked any coping skills or even to realise

that there might be more effective methods of coping with her memories.

Nurses Several nurses noted the lack of formal counselling or debriefing in the past:

‘… there was no real debriefing … at that time and ___ she came back and talked about it a lot in the office …’ (Loretta).

In the absence of formal services, they recognised that talking amongst themselves was

a useful, albeit less effective, alternative:


‘Within the unit itself, you guys would chat … how we managed our feelings of frustration or disappointment’ (Barb).

Nurses spoke about the more recent recognition of the importance of coping

mechanisms when dealing with traumatic or distressing instances, such as those

typically experienced when caring for patients with malignant wounds:

‘… grief counselling and management, so we’re hoping to sort them out to come and give us a little talk and give us some coping mechanisms because, yes, they do take, you do take out the stress from the family…’ (Leanne).

‘For, for the nurses, um, that that be acknowledged, um, and the need for counselling and debriefing is just so, so important’ (Celia).

They believed that such support assisted them in avoiding disturbing memories and to

deal with the memories if they were recalled.

Coping With the Memories: Comparison With the Literature The hidden nature of much of nursing work and the possibility of that hiddenness

contributing to the memorability of such work has already been discussed. Also

discussed was the recognition that revealing the hidden work of nurses would facilitate

open discussion of those experiences that are distressing or traumatic (Wilkes, Boxer &

White 2003). In the form of informal peer support or debriefing, such open discussions

may be sufficient to reduce the potential for harm associated with distressing

experiences. At other times, however, more formal interventions might be required,

including professional counselling.

Nurses in the study by Wilkes, Boxer and White (2003) recognised the benefits of peer

support and counselling when treating patients with malignant wounds. They valued the


support of the health team and the benefits of debriefing each other when issues

became overwhelming. Similarly, nurses in the current study also supported the value of

formal counselling. They remarked that their most distressing experiences were those

that occurred in the days before the benefits of counselling and debriefing were

recognised. With the advent of formal counselling and debriefing, however, they

considered that their more recent instances of patients with malignant wounds were

becoming less likely to result in intensely negative enduring memories. Even so, nurses

stated that they would still remember their patients with malignant wounds simply

because of the terrible manner in which these people were dying.

The nurses are fortunate that their need for support has been recognised. Unfortunately

for Lucy (caregiver), there has been no such recognition and she continues to relive her

experience of caring for her husband’s malignant wound and to live a life that is still

being influenced by the wound. Although Lucy has not requested assistance from her

doctor or other HCP, this may be because she is not aware that assistance is available

and because of her reluctance to complain. She expects that she should be influenced

by her husband’s illness and subsequent death but does not seem to be aware that her

suffering may be more intense than it needs to be.

The possibility was raised earlier in this chapter that Lucy’s symptoms might be

suggestive of post traumatic stress disorder (PTSD). Whether or not this is the case,

cognitive behaviour therapy (CBT) may be of assistance in helping her to reframe her

memories and alleviate some of their repetitive and enduring nature. CBT has been

described by van Emmerik, Kamphuis and Emmelkamp (2008) as the current treatment

of choice for PTSD. Typically, CBT involves identification and cognitive restructuring of

the traumatic events and subsequent beliefs, interpretations and memories that are of a


dysfunctional or catastrophic nature. In this way, the beliefs and memories are modified

so they cease to be threatening or intrusive currently and into the future. Following the

performance of a randomised controlled trial of CBT and structured writing therapy, van

Emmerik, Kamphuis and Emmelkamp (2008) confirmed the efficacy of CBT for PTSD.

Mendes et al (2008) reached similar conclusions when their systematic review of the

effectiveness of CBT in the treatment of PTSD confirmed that CBT was more effective

than supportive techniques.

In Lucy’s case, therapy might concentrate on helping her to realise that Bill’s malignant

wound was not a punishment and was simply a disorder that could occur to anybody.

Similarly, assistance might be provided to assist Lucy to understand that her contribution

to Bill’s care and wellbeing was a monumental task, particularly for an elderly person

who was already experiencing several comorbidities. This approach could assist her to

understand that she has no need to feel guilty over the manner of Bill’s death or the

amount of caregiving she was able to provide. Similarly, if she is suffering PTSD or

depression as a result of her caregiving experience, it should be reinforced to Lucy that

these disorders are not related to any weaknesses on her part but are an

understandable consequence of her intense and unpleasant caregiving experience.

Ultimately, the aim of any therapy would be to assist Lucy to view her enduring

memories with less negativity and intensity and assist her to leave them in the past so

she can concentrate instead on her own welfare. Even so, success cannot be

guaranteed. van Emmerik, Kamphuis and Emmelkamp (2008) noted that, despite its

‘gold standard’ rating, CBT was not successful for a ‘significant proportion of participants’

who still met diagnostic criteria for PTSD post-CBT and at follow up (p. 99). They

cautioned that even a treatment of choice might leave a considerable proportion of


patients in need of further interventions. Mendes et al (2008) noted a similar lack of

universal success with CBT and recommended that each patient be assessed and

treated individually to avoid the phenomenon of fitting the patient to the treatment, rather

than selecting an appropriate treatment for each patient

The aim of the coping skills discussed in this section is to assist in the reframing of

memories and, as a consequence, reduce their ability to cause harm. It may even be

possible, in some instances, to construct some good memories. However, as will be

shown in the ensuing section, in a disorder with the intensity of malignant wounds, the

incidence of good memories is likely to be a rare occurrence indeed.

Good Memories Again, this sub-theme applies only to nurses as the caregiver was unable to verbalise

any good memories from her experience of caring for her husband and his malignant

wound. In view of the intense nature of caring for patients with malignant wounds, it

might seem remarkable that anybody was able to articulate some good memories from

the experience. However, one nurse was able to do so.

Nurses Celia spoke about an instance where a patient who had died with a malignant facial

wound had been embalmed. She considered it very therapeutic for herself and the

family to be able to view the patient as they wanted to remember him, rather than

remembering the manner of his death. As Celia stated:

‘That’s what sticks in your mind is the vision of that person as you last saw them’ (Celia).

As a result:


‘… it was actually the best thing, it was the best thing for the family and for me because everybody could see him and remember him the way he was with this intact face and not remember Dad with this smelly, exudating wound or bag hanging off his, off his chin. They just went in there and sat on the bed and had a chat and it actually was the most ___ healing thing … and so I guess, because clinically it was ___ um, a good outcome as far as from a wound care perspective …’ (Celia).

It appeared that the opportunity to overlay the traumatic memories with something more

positive had been an affirming experience for Celia. At this stage in the interview,

however, she immediately contrasted this positive memory with her memories of the

young mother who had recently died with a malignant wound on her leg. Like most of

the other clients with malignant wounds, there were no positive memories associated

with that particular client.

Good Memories: Comparison With the Literature Celia (nurse) was the only participant in this study who was able to verbalise specific

positive memories related to the management of patients with malignant wounds.

Although there were some instances in the literature of nurses speaking generally about

gaining benefit from the experience, such instances were rare and usually related to

feelings of satisfaction after achieving positive outcomes for the patient. They typically

did not discuss specific instances which invoked good memories. The absence of any

correlative instances in the literature affirms the contention of this thesis that the

experience of the nurse in this study was an isolated example.

Conclusion The preceding discussion has recognised the intense memorability of malignant wounds,

as evidenced by those who have cared for patients with malignant wounds. Despite the

frequency of these intense and enduring memories, however, this theme has not been

recognised previously within the literature. As a consequence, the majority of discussion


presented in this chapter is a new contribution to existing knowledge and there was little

literature against which to compare the perspectives of participants in this study.

Another way in which this chapter differed to preceding discussion chapters was its

applicability only to the survivors (caregivers and nurses), as those with malignant

wounds typically do not survive. Consequently, their ability to develop memories is

severely constrained by the short duration of their remaining lifespan and the intensity of

experiences during that time. It is only those who are able to look back on their

experiences who are likely to develop enduring memories. However, as illustrated by

Lucy who is continuing to ruminate over her experiences, the ability to remember with

such intensity and clarity is not necessarily a beneficial occurrence.

Nurses frequently remarked upon their ability to clearly remember all the details of

patients with malignant wounds for whom they had provided care. They commented that

they were still able to see the wound and smell its malodour as if they had been caring

for it yesterday when, in fact, it was often many years since the patient had died. Even

though all patients with malignant wounds were memorable, some were even more

memorable and distressing for nurses because of their poignancy. For example, nurses

tended to empathise more with young patients with young families or patients of a similar

age to the nurse or her parents. Also likely to influence memorability were events that

were especially distressing or traumatic, including: arteries haemorrhaging, sternums

collapsing or other body parts deteriorating to the extent that nurses could put both

hands into the cavity.

Perhaps because of the intensity with which these memories were formed, it did not take

much to trigger them. For Lucy (caregiver), still living in the residence in which she had

cared for Bill, there were abundant triggers to re-ignite her memories and reactivate her


dysfunctional cognitive processes, particularly at night when there was little else to

distract her. For the nurses, they were reminded of their patients with malignant wounds

whenever they drove past their residences, treated patients in similar circumstances or

when certain aspects relating to those patients acted as a catalyst for their memories.

Fortunately for the nurses, there was recognition that caring for patients with malignant

wounds was often distressing or traumatic and they were increasingly able to access

formal counselling, debriefing or other support services to assist their coping.

Unfortunately for Lucy (caregiver), there appeared to be no such recognition, even

though she was still reliving the experience almost 24 hours per day, seven days per

week. She has been left to cope unassisted with her enduring memories.


Substantiating Existing Literature 1. Importance of

counselling, debriefing, peer support and other coping mechanisms for nurses caring for patients with potentially distressing or traumatic morbidities such as malignant wounds.

2. Even when caring for patients with disorders as potentially distressing or traumatic as malignant wounds, there is still room for some positive experiences amongst nurses.

Implications for Future Research 1. Research is required into the long-term effects of caregiving on caregivers

caring for patients with any morbidity, including one so intense and potentially traumatic as malignant wounds.

2. Related to i) above, what are the predictions for the average length of time over which adverse effects of caregiving might be expected to occur?

3. What is the incidence of post traumatic stress disorder (PTSD) amongst lay caregivers caring for somebody with a terminal illness?

4. What are the long-term effects on nurses of caring for patients with potentially distressing or traumatic morbidities such as malignant wounds?

Additions to the Literature 1. The impact of the experience of caring for a patient

with a malignant wound is so intense that caregivers and nurses are left with vivid memories that are easily recalled even though the caring experience may have occurred many years previously.

2. The memories are frequently accompanied by the (typically negative) emotions experienced at the time.

3. Most of the information presented by nurses is new as the theme of enduring memories is not one that has been discussed previously in the literature.

4. All of the information presented from the perspective of the caregiver is new as this study is the first to explore the experiences of lay caregivers caring for somebody with a malignant wound. Some of the specific contributions are highlighted below.

5. The intense and unforgettable nature of the experience for the caregiver resulted in her thinking about it many times during the day and wondering if there was anything she might have done differently to improve the care she had provided.

6. Caregiver perception that the malignant wound was still influencing her life even though her husband had been dead for three years.

7. Possibility that the intensity of the experience of caring for somebody with a malignant wound might lead to manifestation of symptoms of mental health disorders, including post traumatic stress disorder.

8. Paradox between the hidden work of nursing and the enduring memories often associated with caring for patients with malignant wounds.



Conclusion In achieving its aim of investigating the lived experience of malignant wounds, this thesis

has shown that malignant wounds are an intense and unforgettable experience. The

intensity of the experience was apparent amongst the patients and caregivers who

participated in this study and, albeit to a lesser extent, amongst the nurses who

participated as well. Indeed, it was the intense and unforgettable nature of malignant

wounds that became the overarching theme of this study. Beneath this overarching

theme, were four themes that represented different aspects of the experience:

malodour; new mode of being-in-the-world; still room for hope; and enduring memories.

Each of these themes became the focus of the four discussion chapters in this thesis

which presented the findings from the study and demonstrated its significance.

The significance of this study was demonstrated even before the discussion chapters,

however. It became apparent initially in the literature review which noted that there was

little existing literature on the lived experiences of patient with malignant wounds or the

nurses who cared for them. There was even less knowledge of the lived experiences of

lay caregivers caring for somebody with a malignant wound because there have been no

previous studies into this topic. This study, therefore, makes an important contribution to

addressing this gap in current knowledge.

Other areas demonstrating the significance of this study addressed specific aspects of

the malignant wound experience. Thus, this study affirmed existing malignant wound

literature which recognised malodour as the worst aspect of malignant wounds and

typically the most difficult to treat. Furthermore, aspects of the malignant wound

experience not previously covered in the literature were revealed. These aspects


included the changed mode of being-in-the-world experienced by the patients and

caregiver and the enduring memories experienced by the caregiver and nurses.

Even though the finding that malodour was the worst aspect of malignant wounds was

not new, existing literature tended to concentrate on the physical experience of malodour

and its clinical management. There has been little prior recognition of the psychosocial

issues associated with malodour or how they should be managed. So, even though this

study has affirmed existing knowledge, it has also added to that knowledge by

presenting the previously largely unexamined experiences of patients with malignant

wounds and those caring for them as they attempt to deal with the experience of living

with a malodorous wound. This wide-angle approach to the totality of the experience

revealed another aspect of malodorous wounds not previously reported in the literature,

as nurses discussed their own experiences of how their patients’ malodour had affected

them personally. They also discussed the strategies they had adopted in an attempt to

overcome these effects.

Although recognised as the worst aspect of malignant wounds, malodour was but one of

a number of symptoms that, together, were capable of transforming the being-in-the-

world of patients with malignant wounds and those caring for them. As the difficulties

associated with managing these symptoms increased, patients and caregivers

experienced the loss of their familiar modes of existence as the demands of the

malignant wound thrust them into new and unfamiliar relationships with themselves and

others. Although typically less intense for nurses, the consequences of their malignant

wound experiences still caused some nurses to question their adequacy as

professionals and to alter their clinical practice. They described being personally


affected by their patients’ distress and what they considered to be less than effective

attempts to manage the symptoms associated with the malignant wound.

One strategy which both patients and nurses did find helpful in dealing with the

symptoms of malignant wounds was the concept of hope. A multi-faceted and complex

phenomenon, the importance of hope for people attempting to cope with trauma and

suffering has been widely recognised. Even so, there can be no universal definition of

hope as it means different things to different people. Hopes expressed by people with

malignant wounds included hoping for a peaceful death, hoping to go on living, hoping to

reach a particular milestone or simply hoping to live one’s remaining life to the fullest. At

the same time as recognising the importance of fostering hope amongst their patients,

health care professionals also recognised the importance of providing information that

was both accurate and comprehensive. Unfortunately, there were occasions when

these objectives became divergent and resulted in tension as HCP attempted to balance

what they believed to be realistic information with what they considered to be the

unrealistic hopes of their patients. Nowhere was this tension more evident than in the

concept of a ‘good death’. A number of HCP subscribed to pre-defined notions of what a

good death would entail and experienced tension when their patients refused to comply

with these expectations. This tension was heightened in instances where patients

compounded their HCP-defined non-compliance by pursuing complementary therapies

not recognised in mainstream biomedicine. Such experiences often led HCP to

conclude that patients were in denial; unable or unwilling to accept that the likely

outcome of their illness was death.

The theme of mortality was continued into the final discussion chapter of this thesis as it

adopted a post-mortem perspective with which to discuss the memories of the caregiver


and nurses caring for people with malignant wounds. Memories that, by their very

nature, were described as enduring. These enduring memories demonstrated yet again

the intensity of the malignant wound experience as participants discussed their abilities

to easily and clearly recall memories of the people for whom they had provided care. In

these instances, the memories of the circumstances of their patients with malignant

wounds remained vivid, even though some had occurred more than twenty years

previously. Particularly poignant was the experience of the caregiver (Lucy) who

admitted to lying awake at night thinking about what happened to her husband and what

more she might have been able to do to assist him. This phenomenon of enduring

memories led to the introduction of the possibility that caregivers providing care in such

traumatic circumstances might go on to develop post traumatic stress disorder as a

consequence.

Limitations of This Project There are some aspects of this study that might be considered to be limitations. For

example, the low number of participants in the patient and caregiver cohorts might be

considered a limitation of this project. Low numbers of participants are generally

considered to be a limitation in studies that claim generalisability. However, as this

project does not claim generalisability, the low number of participants may not be an

issue. It is the nature of phenomenological research to provide rich, thick descriptions of

lived experiences. Despite the low numbers of participants in the patient and caregiver

cohorts, this project has still fulfilled that requirement of presenting rich and thick

descriptions of the lived experience of malignant wounds. It is not possible to predict

whether a larger number of participants would have provided different results.


One limitation that does apply to this study was selection of participants in the patient

cohort which was, to some extent, influenced by HCP. It is unknown whether different

stories might have been told by those considered by HCP as being too distressed to

approach about participating in the study.

Another limitation might be the difficulties surrounding researcher influence upon the

interpretation of data and upon the emerging themes. Despite efforts to overcome

researcher blindspots, biases and prejudices, it is never possible to achieve total

objectivity. To reduce, as much as is possible, the influence of the researcher’s pre-

understandings, constant contact was maintained with supervisors who oversaw and

critiqued the developing interpretations and themes. The researcher also maintained a

reflexive journal in which she recorded her pre-conceptions and expectations and how

they might be influencing the emerging themes. Via these methods, the researcher

sought to reduce the influence of this particular limitation upon the study.

Recommendations There are a number of recommendations arising from this study. The first

recommendation is that further research be conducted into the physical and

psychosocial issues of patients with malignant wounds, their caregivers and HCP.

Specific areas deserving of research were presented in detail at the end of each

discussion chapter. They included greater understanding and strategies for managing

the impact of malodour upon patients with malignant wounds and those who care for

them. Also highlighted for further research was the debate about whether patients

become desensitised to malodour over time and an investigation into the reasons why

some patients with malignant wounds delay seeking treatment.


The second recommendation arising from this study is that the care of patients with

malignant wounds only be assigned to experienced nurses. As a means of gaining

experience, consideration could be given to assigning a less-experienced nurse to assist

in the provision of care.

The third recommendation is that HCP widen their scope of assessment and provision of

care when treating patients with malignant wounds to ensure recognition of the

importance of psychosocial issues and the significant impact they may have on the

patient’s being-in-the-world, as well as on any planned interventions. Linked to this

recommendation is the need to acknowledge that caregivers will probably also have

psychosocial issues related to their care of a loved one with a malignant wound, possibly

to the extent that symptoms compatible with a diagnosis of post traumatic stress

disorder (PTSD) may become evident.

Following on from this recommendation, the fourth recommendation is that caregivers

and nurses undertaking a traumatic caring experience have access to support systems

such as debriefing and counselling. In those cases where a diagnosis of PTSD is made,

appropriate interventions should be offered to those who require assistance in coping

with the trauma and its aftermath.

The fifth recommendation is that the findings from this research project be used by HCP

to normalise the experiences of those living with a malignant wound or those caring for

them. As this study has shown, the experience is intense and unforgettable. That it is

often also traumatic has been acknowledged by participants in this study and others. As

a result, those living the experience should be reassured that feelings of distress and

despair are not abnormal. Similarly, existing literature has acknowledged that caring for


a patient with a malignant wound is a challenging experience and that many

interventions will not be successful. Accordingly, when caregivers and nurses know they

are providing optimum care, they have no need to feel guilty or inadequate if those

interventions fail. It may well be the case that they are doing the best that they are able

to but the havoc wrought by the malignant wound simply overwhelms their abilities.

Following on from this recommendation, the sixth recommendation is that the findings

from this research project be integrated into patient and HCP education to enable

greater understanding of the totality of the experience and what interventions might be

appropriate if the care provided to patients is to be optimised.

Recommendation number seven is that an enlightened approach be adopted towards

the integration of complementary therapies in the management of malignant wounds.

Existing research has demonstrated that complementary therapies have a role in

palliative care, particularly in supporting patients with psychosocial issues that may not

be amenable to successful treatment by the majority of contemporary biomedical

methods. They may, however, be more likely to respond to complementary therapies

such as meditation, relaxation, guided imagery, music therapy, diversion therapy,

aromatherapy, prayer and spirituality.

The eighth (and final) recommendation is that greater attention be paid to the possibility

of tension arising between patients and HCP when patients’ hopes diverge from views

that HCP maintain are more realistic. It is important that any such tension be defused as

soon as possible as it has the potential to adversely affect both patient and HCP and

cause serious damage to the HCP/patient relationship, resulting in an impairment in the

level of care that is provided. This area is another worthy of further research with a view


to enhancing the clinical practice of HCP through a greater understanding of patients’

experiences, expectations and the cognitive processes that affect and are affected by

those experiences and expectations.

Finale In conclusion, HCP are entreated to recognise that for patients with malignant wounds,

the experience is likely to be intense. Myriad symptoms typically abound, of which

malodour and psychosocial issues are likely to be the worst for the patient. However,

the effects of malignant wounds will not be restricted to patients, as caregivers and

nurses are also likely to be affected by the experience of caring for somebody with a

malignant wound. By recognising the potentiality for the effects of malignant wounds to

be intense upon all those involved, HCP will be better placed to provide holistic care for

the patient and caregivers, as well as invoking strategies to safeguard their own

wellbeing.


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Attachment A: HREC Approval Letters

Thesis: Phenomenology of Malignant Wounds Page A-1 Author: Susan Alexander

Attachment B: Informed Consent Package

Thesis: Phenomenology of Malignant Wounds Page B-1 Author: Susan Alexander

Susan Alexander BHlth(Nursing) (Honours) RN MRCNA Faculty of Sciences, Engineering and Health

Central Queensland University BUNDABERG Q 4670

Telephone: 4150 7082 (b/h) or 4154 2164 (a/h)

0400 578 641 (mobile) Dear Participant A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff You are being invited to take part in a study of people living with malignant wounds. The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. Please refer to the attached Information Sheet for more details about the study. Please be aware that your participation in this study is totally voluntary. You may withdraw from the study at any time. You may choose not to answer any question(s) or provide information without giving a reason. If there is anything in this form or in the accompanying Information Sheet that you do not understand, please contact me on the numbers listed above. Please contact Central Queensland University’s Office of Research (Tel 07 4923 2607) should there be any concerns about the nature and/or conduct of this research project. If you are willing to participate in this study, please make sure you read and understand all information contained in this form and the attached Information Sheet. Please signify your willingness to participate by signing and returning to me the consent form printed overleaf. Thank you for your assistance. Yours faithfully Susan Alexander Participant’s Initials Date

Patients





0400 578 641 (mobile)

Information Sheet

Title A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff

Purpose The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life.

Your Participation As a participant in this research, you will be invited to tell your story of the experience of living with a malignant wound and what this means to you. This simply means that the interviewer will talk informally with you about your experience and will listen carefully to what you have to say. There will not be a long list of questions to answer or a lengthy questionnaire to complete. Rather, the interviewer will be interested to hear of your experience in your own words and at your own pace. The interview(s) will be at a time and location of your choosing. The type and amount of information you provide will be completely up to you. As a guide, the duration of the interviews is anticipated to be about two hours but this will depend on the amount of information you wish to discuss and for what periods you wish to be interviewed. If you would prefer, the interviews can be conducted over a number of sittings if this would be more comfortable for you. The interview will be conducted by a researcher who is independent of any hospital with which you have, or presently are, involved. If, for any reason, you wish to discuss this research further, the investigator (as listed at the beginning of this information sheet) will be happy to talk to you. If there are any changes to the methods or to the design of the study, you will be informed of the proposed changes and provided with the opportunity to discontinue participation if you so desire.


Your Information Participation in this study is entirely voluntary and can be terminated by you at any point. Statements made during the interview will be taped and transcribed. Any statements that you make may be withdrawn at any time if you later decide you do not want them included. The interviews will be conducted by a researcher who is independent of any hospital at which you may have received or are currently receiving treatment. Any decisions you make with regards to participating or not participating in this study will have no effect on your treatment within a hospital and/or by health care professionals. If you do decide to participate, confidentiality of your information will be respected and it will not be possible to link anything you say back to you. If any of your information is used in publications, it will be used in such a way that you cannot be identified. The information collected from the interviews will be held in secure storage at a research office under the auspices of the Central Queensland University. The report from the study will be available from the Principal Investigator whose details are shown at the beginning of this sheet.

Outcomes It is anticipated that the results of this research will lead to more satisfying ways of providing care for people with malignant wounds. Although involvement in this research may not provide direct benefits to participants, your participation will make a direct and positive contribution to improving the support services for other patients. Your participation will be greatly valued.

Approval by Human Research Ethics Committee This study has been reviewed and approved by the _____ Hospital Health Service District Human Research Ethics Committee. Should you wish to discuss the study with someone not directly involved, in particular in relation to matters concerning policies, information about the conduct of the study or your rights as a participant, or should you wish to make an independent complaint, you can contact the Coordinator or Chairperson, Human Research Ethics Committee, _____ Hospital on _____.

Concerns Please contact Central Queensland University’s Office of Research (Tel 07 4923 2607) should there be any concerns about the nature and/or conduct of this research project.





0400 578 641 (mobile)

Informed Consent Form (for research undertaken with patients/clients within the _____Health District)

A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. I, consent to take part in the above study. I have read the attached Information Sheet and understand the nature and purpose of this study and any side-effects or risks involves. All my questions have been answered to my satisfaction. I understand that my involvement in the study may not be of direct benefit to me. The opportunity has been given to me to have a friend or relative present when the study was explained. I understand that taking part in the study is voluntary and I am free to withdraw at any time I wish and this will not affect my clinical management. I understand that all information gained in the study will be treated confidentially. I give my permission for this interview to be audiotaped and for notes to be recorded during the interview. Participant Date Witness Date Witness Name (print) I confirm that, to the best of my knowledge, the participant has understood the information provided to him/her, the implications of this information and that the participant will be provided with a copy of this document. Researcher (Susan Alexander) Date

I wish to receive a summary of the findings of the project which can be sent to the following address: Name: Address:





0400 578 641 (mobile) Dear Participant A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff You are being invited to take part in a study of people caring for persons living with malignant wounds. The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. Please refer to the attached Information Sheet for more details about the study. Please be aware that your participation in this study is totally voluntary. You may withdraw from the study at any time. You may choose not to answer any question(s) or provide information without giving a reason. If there is anything in this form or in the accompanying Information Sheet that you do not understand, please contact me on the numbers listed above. Please contact Central Queensland University’s Office of Research (Tel 07 4923 2607) should there be any concerns about the nature and/or conduct of this research project. If you are willing to participate in this study, please make sure you read and understand all information contained in this form and the attached Information Sheet. Please signify your willingness to participate by signing and returning to me the consent form printed overleaf. Thank you for your assistance. Yours faithfully Susan Alexander Participant’s Initials Date

Caregivers





0400 578 641 (mobile)

Information Sheet



Your Participation As a participant in this research, you will be invited to tell your story of the experience of caring for somebody living with a malignant wound and what this means to you. This simply means that the interviewer will talk informally with you about your experience and will listen carefully to what you have to say. There will not be a long list of questions to answer or a lengthy questionnaire to complete. Rather, the interviewer will be interested to hear of your experience in your own words and at your own pace. The interview(s) will be at a time and location of your choosing. The type and amount of information you provide will be completely up to you. As a guide, the duration of the interviews is anticipated to be about two hours but this will depend on the amount of information you wish to discuss and for what periods you wish to be interviewed. If you would prefer, the interviews can be conducted over a number of sittings if this would be more comfortable for you. The interview will be conducted by a researcher who is independent of any hospital with which you have, or presently are, involved. If, for any reason, you wish to discuss this research further, the investigator (as listed at the beginning of this information sheet) will be happy to talk to you. If there are any changes to the methods or to the design of the study, you will be informed of the proposed changes and provided with the opportunity to discontinue participation if you so desire.


Your Information Participation in this study is entirely voluntary and can be terminated by you at any point. Statements made during the interview will be taped and transcribed. Any statements that you make may be withdrawn at any time if you later decide you do not want them included. The interviews will be conducted by a researcher who is independent of any hospital at which the person for whom you are providing care may have received or is currently receiving treatment. Any decisions you make with regards to participating or not participating in this study will have no effect on the treatment within a hospital and/or by health care professionals for the person for whom you are providing care. If you do decide to participate, confidentiality of your information will be respected and it will not be possible to link anything you say back to you. If any of your information is used in publications, it will be used in such a way that you cannot be identified. The information collected from the interviews will be held in secure storage at a research office under the auspices of the Central Queensland University. The report from the study will be available from the Principal Investigator whose details are shown at the beginning of this sheet.








0400 578 641 (mobile)

Informed Consent Form (for research undertaken within the _____Health District)A Phenomenological Exploration of the Lived

Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. I, consent to take part in the above study. I have read the attached Information Sheet and understand the nature and purpose of this study and any side-effects or risks involves. All my questions have been answered to my satisfaction. I understand that my involvement in the study may not be of direct benefit to me. The opportunity has been given to me to have a friend or relative present when the study was explained. I understand that taking part in the study is voluntary and I am free to withdraw at any time I wish and this will not affect the clinical management of the person for whom I am providing care. I understand that all information gained in the study will be treated confidentially. I give my permission for this interview to be audiotaped and for notes to be recorded during the interview. Participant Date Witness Date Witness Name (print) I confirm that, to the best of my knowledge, the participant has understood the information provided to him/her, the implications of this information and that the participant will be provided with a copy of this document. Researcher (Susan Alexander) Date






0400 578 641 (mobile) Dear Participant A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff You are being invited to take part in a study of nursing staff caring for persons living with malignant wounds. The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. Please refer to the attached Information Sheet for more details about the study. Please be aware that your participation in this study is totally voluntary. You may withdraw from the study at any time. You may choose not to answer any question(s) or provide information without giving a reason. If there is anything in this form or in the accompanying Information Sheet that you do not understand, please contact me on the numbers listed above. Please contact Central Queensland University’s Office of Research (Tel 07 4923 2607) should there be any concerns about the nature and/or conduct of this research project. If you are willing to participate in this study, please make sure you read and understand all information contained in this form and the attached Information Sheet. Please signify your willingness to participate by signing and returning to me the consent form printed overleaf. Thank you for your assistance. Yours faithfully Susan Alexander Participant’s Initials Date

HCP





0400 578 641 (mobile)

Information Sheet



Your Participation As a participant in this research, you will be invited to tell your story of the experience of providing healthcare for somebody living with a malignant wound and what this means to you. This simply means that the interviewer will talk informally with you about your experience and will listen carefully to what you have to say. There will not be a long list of questions to answer or a lengthy questionnaire to complete. Rather, the interviewer will be interested to hear of your experience in your own words and at your own pace. The interview(s) will be at a time and location of your choosing. The type and amount of information you provide will be completely up to you. As a guide, the duration of the interviews is anticipated to be about two hours but this will depend on the amount of information you wish to discuss and for what periods you wish to be interviewed. If you would prefer, the interviews can be conducted over a number of sittings if this would be more comfortable for you. The interview will be conducted by a researcher who is independent of any hospital with which you have, or presently are, involved. If, for any reason, you wish to discuss this research further, the investigator (as listed at the beginning of this information sheet) will be happy to talk to you. If there are any changes to the methods or to the design of the study, you will be informed of the proposed changes and provided with the opportunity to discontinue participation if you so desire.


Your Information Participation in this study is entirely voluntary and can be terminated by you at any point. Statements made during the interview will be taped and transcribed. Any statements that you make may be withdrawn at any time if you later decide you do not want them included. The interviews will be conducted by a researcher who is independent of any hospital at which the person for whom you are providing care may have received or is currently receiving treatment. Any decisions you make with regards to participating or not participating in this study will have no effect on the treatment within a hospital and/or by health care professionals for the person for whom you are providing care. If you do decide to participate, confidentiality of your information will be respected and it will not be possible to link anything you say back to you. If any of your information is used in publications, it will be used in such a way that you cannot be identified. The information collected from the interviews will be held in secure storage at a research office under the auspices of the Central Queensland University. The report from the study will be available from the Principal Investigator whose details are shown at the beginning of this sheet.








0400 578 641 (mobile)

Informed Consent Form (for research undertaken with nursing staff/health care professionals within the _____Health District)

A Phenomenological Exploration of the Lived Experience of Malignant Wounds from the Perspective of Client, Caregivers and Nursing Staff The purpose of the study is to increase our understanding of what it is like to live with a malignant wound from the perspectives of patients, caregivers and nursing staff. There is little existing knowledge of what it means to live with a malignant wound and how it may impact upon the lives of individuals and their families. As health care professionals can only provide appropriate, holistic and compassionate care when they understand the effects of the patient’s condition, the current lack of information is restricting the quality of treatment that can be provided. It is hoped that your participation in this study will benefit all people affected by malignant wounds by providing valuable information that health care professionals can use to develop holistic, individualised care plans that will meet the needs of patients and assist in enhancing their quality of life. I, consent to take part in the above study. I have read the attached Information Sheet and understand the nature and purpose of this study and any side-effects or risks involves. All my questions have been answered to my satisfaction. I understand that my involvement in the study may not be of direct benefit to me. The opportunity has been given to me to have a friend or relative present when the study was explained. I understand that taking part in the study is voluntary and I am free to withdraw at any time I wish and this will not affect the clinical management of the person for whom I am providing care. I understand that all information gained in the study will be treated confidentially. I give my permission for this interview to be audiotaped and for notes to be recorded during the interview. Participant Date Witness Date Witness Name (print) I confirm that, to the best of my knowledge, the participant has understood the information provided to him/her, the implications of this information and that the participant will be provided with a copy of this document. Researcher (Susan Alexander) Date


Attachment C: Selected Codes and Sub-themes

Thesis: Phenomenology of Malignant Wounds Page C-1 Author: Susan Alexander

Patients Caregiver Nurses

Codes Sub-themes Codes Sub-themes Codes Sub-themes Prelude to the wound Changed life Prelude to the wound Changed life Balancing hope and

reality Psychosocial impact

Malodour Dealing with the wound Treatment Caring for a loved one with a malignant wound

Malodour Striving to provide optimum care

Looking after the wound

Impact of the wound Progression of the wound

Malodour Psychosocial impact Balancing patient hopes with HCP expectations

Progression of the wound

Research and the future

Seeking successful treatment

Conflict Seeking information Enduring memories

Treatment Relationships Wanting to go on living Balancing hopes (patient) with expectations (HCP)

Holistic care Malodour

Adverse effects of treatment

Reducing social contact

Outliving medical prognoses

Dreams Seeking benefit Answering difficult questions

Lack of information Wanting to live The caregiving role Flashbacks Context of care Responding appropriately

Aetiology Malodour Caring for a malignant wound

Enduring memories Caring partnership Alternative treatments

Outliving prognoses Embarrassment Managing exudate Cannot forget Adequacy Desensitisation Wanting to go on living Loss of femininity Malodour PTSD Dreams Social isolation Living a good, long life Traumatic experiences Social isolation Physical deterioration Unforgettable Delaying presentation Making the most of life Why me? Psychosocial impact Still being impacted Triggers Traumatic experiences Impending death Hoping for a cure Death Triggers Flashbacks Peer support Pain Denial Seeking answers

(meaning) Why us? Memories Counselling

Social network Alternative therapies Hope (patient) Distress Debriefing Psychosocial impact of the wound

Expectations (HCP) Combating malodour for patient

Negative emotions

Financial concerns Laundering Removing malodour from self

Denial

Physical impact of the Lack of sleep Effects of malodour on Lengthy periods of



Codes Sub-themes Codes Sub-themes Codes Sub-themes wound others vivid memories Genetics Neglecting self care Thinking about MW off

duty Good memories

The interview experience

Had to cope Unforgettable

Finalising the interview No support Empathy Cancer prevention Conflict Pain Personal integrity Changed husband Physical impact Fatigue Disbelief Coping strategies Exudate Religion Rapid progression Religion Angina, arthritis Negative emotions Controlling pain Insufficient analgesia Finding benefit Difficult conversations Exudate management What if it were me? Effects on family Anger Unfairness Being blamed by the

patient

Uncertainty Maggots Frustration Admiration Inspiration Learning about the

patient

Sharing the journey Patient as human

being

Compassion



Codes Sub-themes Codes Sub-themes Codes Sub-themes Conflict with carers,

family

Conflicting religious views

Insufficient analgesia Daring to care Heartbreaking Avoidance Patient isolation Haemorrhage Sensitive discussions Complex Multi skilled Being innovative Dressing regimes Desperation Metronidazole Greater effort Difficult for new nurses Magic wand Sadness Helplessness

Table C1: Selected codes and sub-themes for patients, caregiver and nurses

Susan Jane Alexander BHlth(Nursing) (Honours) RN

Documents

Transcript of Susan Jane Alexander BHlth(Nursing) (Honours) RN