A lost life: Coming to terms with haemodialysis

“A lost life’: coming to terms with haemodialysis”

Draft HD paper 5th July 2013

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This is the pre-peer reviewed version of the following article:

Monaro S, Stewart G, Gullick J. (2014) A lost life: Coming to terms with haemodialysis. Journal of Clinical Nursing, 23(21-22);3262-73.

which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/jocn.12577/abstract.

This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.

ABSTRACT

Aims and objectives: The aim of this paper is to describe the essence of the lived experience

of patients and families in the early phase of long-term haemodialysis therapy. Background:

Past qualitative research has taken a long-term view describing established haemodialysis

therapy as it impacts on physical limitations and changes in self-concept, psychosocial well-

being and sense of dignity with subsequent consequences for family roles and financial status.

Design: This study utilised the qualitative approach of Heideggerian Phenomenology.

Methods: 11 patients with end stage renal failure who had recently initiated haemodialysis and

5 family carers engaged in semi-structured interviews. These were recorded and transcribed

verbatim and analysed using an hermeneutic framework. Results: The essence of the early

dialysis experience was a ‘lost life’ and participants were overwhelmed by shock and grief.

This appeared to result from a lack of mental and physical preparation for dialysis as a long-

term management strategy. A loss of sense of self, loss of spontaneity and personal freedom

and loss of social connectedness challenged the participants’ ability to contribute to family and

community. Changed body sensations ranged from improved wellness to a sense of depletion

and fatigue. Family caregivers found the caring role was unremitting and required intense

vigilance. Conclusions: Patients and family members in the early phase of dialysis may have

difficulty perceiving a positive future. Relevance to clinical practice: A greater focus on

preparation for the possibility of dialysis, and frameworks of care that support adjustment to

this new way of life are of vital importance. Family presence during HD and support groups

for patients and family should be actively facilitated.

Keywords; ESRD, haemodialysis, phenomenology, family, caregivers



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INTRODUCTION

Chronic kidney disease is a worldwide health problem resulting in a substantial burden of

illness and premature death (White 2008, Kidney Health Australia 2012). Although dialysis is

the mainstay of end stage renal disease (ESRD) management, the process of adapting to long

term dialysis is not well understood. In 2010, approximately 19000 Australians (850/million

population) received renal replacement therapy with just over half being either peritoneal

dialysis or haemodialysis (HD) dependent (Clayton et al. 2011).

As people approach ESRD and the prospect of dialysis treatment, it essential that health care

providers develop management plans that consider the possible responses of individuals to their

diagnosis and prospective therapies (Cukor et al. 2007). An understanding of the early

experience of haemodialysis will assist in this early care planning.

BACKGROUND

ESRD is associated with physical challenges and functional decline, which can be

overwhelming and may impact greatly on available healthcare resources and workload

(Francisco et al. 2012). Prior to the commencement of dialysis, patients describe changes in

their self-concept, psychosocial well-being, sense of dignity, roles within the family and

sources of stress. There are also concerns about financial status, physical symptoms and

limitations, fear of impending dialysis and its potential impact on family life (Harwood et al.

2005, McCarley 2009, Bayhakki & Hatthakit 2012).

Most qualitative studies have focussed on patients receiving longer-term maintenance HD

(Chan et al. 2008, Ginieri-Coccossis et al 2008, Chan et al. 2009). The focus of this study,

however, is on the introduction of the patient to HD, as this stage of illness management is not

as well understood. Given the acknowledged disruption to the lives of patients and families at

this early stage, more understanding of the patient and family’s experience could inform

nephrology nursing practice and enhance patient and family support. This paper describes the

experiences of a cohort of people with ESRD and of close family members as they embarked

on HD in a tertiary referral hospital in Sydney, Australia.



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METHOD

Design

Phenomenology was first proposed as a descriptive approach by Edmund Husserl (1913) and

was further developed by Martin Heidegger, who outlined his interpretative phenomenology

in his seminal work “Being and Time” (1927/1996). Heidegger, an existential philosopher,

aimed to go beyond Husserl’s description of phenomena as merely a pursuit of knowledge

(epistemology). He instead sought to interpret the meaning of being-in-the-world. Heidegger

conceptualised this meaning of being (ontology) as a shared human understanding, determined

by the personal concerns of people and related to things within their world (Heidegger,

1927/1996; Mackey, 2005).

Heideggerian phenomenology was chosen as the mode of enquiry because chronic illness

has emerged in the nursing literature as a family experience that challenges previously known

ways of being-in-the-world. This method has the potential to assist with meaningful, patient

and family-centred health care planning. It has been used to explore the experience of diseases

such as HIV, chronic obstructive pulmonary disease (COPD) and chronic heart failure and has

proven helpful in explaining the central issues for patients and families (Gullickson 1993, Sloan

& Pressler 2009, Gullick & Stainton 2012, Kennedy 2012).

Phenomenological interpretation of interview transcriptions requires the researcher to go

beyond the literal meaning of the participants’ words to identify both the ‘fore-structures’ (the

researchers’ prior awareness and understanding of the phenomena) and the themed meanings

to be found within the data (Mackey 2005). It also requires the researcher to accept and value

the stories told by the participants as their reality and understanding of an experience (Koch

1999).

Data Collection

Purposive sampling was employed to recruit 11 patients who had commenced HD within the

previous three months, and five family caregivers. Reasons for patients or family members not

recruited appear in Table 1. The aetiology of ESRD was wide-ranging. The median age of

patient participants was 40.5 years and caregivers, 64 years. All participants had sufficient

command of English to meet the requirements for informed consent and interview. Participant

characteristics are described in Table 1.



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Each participant was engaged in one conversational-style interview. Data were collected

between June 2008 and March 2010. Thirteen interviews were conducted face-to-face within

the renal unit and three by phone with speakerphone capacity. All interviews were digitally

recorded and transcribed verbatim.

Data Analysis

As a research method, Halling (2008) explains phenomenological analysis as a three-stage

approach where the researcher moves back-and-forth between experience, abstraction and

reflection. The first stage examines the participants’ narrative description of an experience. We

began by reading and rereading the interview transcriptions. The second stage identifies themes

that are common to the phenomenon across experiences. In the early stages of our analysis,

each researcher coded the interview data separately. Themes emerging from the data were then

brought together and reviewed for consensus by the researchers.

The third stage explores philosophical and universal expressions of humanness within the

experience by exploring what it is about human nature and human relationships that create the

meaning of the phenomenon for the person (Finlay 2009) (see diagram 1). Heidegger utilised

the notion of a ‘hermeneutic circle’ (Dilthey 2011); a circle of understanding that gives

structure to the process of finding shared meaning. This process requires the researchers to

seek the ‘essence’ of the experience – a sense of shared, essential meaning that underpins the

nature of being for the participants in the situation. Using this essence as the central point for

interpretation, Heidegger identified a “backward and forward movement” (1927/1996, p6)

between individual participant quotations held against the person’s larger narrative, the stories

of other participants and the researchers’ own prior understandings of the phenomenon. For the

researchers, testing these emerging ideas through a process of reading and rereading, writing

and thinking, allowed development of a rich description and interpretation of the shared

meanings of the experience. (See Fig. 1)



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Rigour

A wide range of criteria are available for the evaluation of rigour in qualitative research

(Sandelowski 1986, Koch 1994 & 1996, Maggs-Rapport 2001, Fleming et al. 2003, Whitehead

2004). In this study, we utilised the quality framework of de Witt & Ploeg (2006), informed by

‘expressions’ of rigour rather than criteria, to draw attention to the unique characteristics of

interpretive phenomenology. These include a balanced integration between the careful,

comprehensive preparation of transcripts, the intensity and reflective nature of participants’

experiences and the interweaving between the philosophical interpretation and the participants’

voice. Resonance is demonstrated in the participant narratives with compelling examples of a

changed life-world and expressions of the numerous limitations, fears and challenges

participants faced. These changes have highlighted important areas for actualisation noting

possibilities for practice change. To ensure objectivity and minimise bias, the interviewers had

no significant association with participants either by direct or indirect patient care. In

preparation for this study, three clinical nurse consultants and one clinical nurse specialist

completed a focused, phenomenological research training program (Gullick & West 2012)

including instruction in qualitative interview techniques. Participants were reassured that the

purpose of the interview was to ascertain their personal journey and experiences and that there

were no right or wrong answers (openness) (de Witt & Ploeg 2006). The incorporation of a

semi-structured interview guide ensured a common approach to questioning (see Table 2). All

interviews were audiotaped for later transcription and interpretation. The researchers returned

frequently to the full recordings and transcripts to check the context and challenge their

perceptions about quotations.

Ethical issues

The hospital’s Human Research Ethics Committee approved the study protocol. Participants

were provided with an information statement and gave written consent prior to participating in

the research project.



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RESULTS

1. Shock and grief

Participants described shock and grief at their loss of kidney function and their need for life-

saving therapy. Though it can be difficult to predict the timeline from diagnosis to the initiation

of dialysis, most participants were aware of their declining kidney function. However, very few

participants were able to recall having engaged in specific discussions about dialysis as a likely

treatment option in the near future.

Sylvia was shocked by what she perceived as unexpected invasive medical management. She

explained, “I was going to a doctor for five years… he never told me a word about this.” Carer,

Janelle, also related a lack of understanding of husband Joe’s kidney disorder:

Every time...they say ‘Joe, your kidney’s weak’, that’s as far as they go… six months ago his kidney collapsed completely and you have to start dialysis. Never been prescribed any tablet ...injection or anything.

Sharon had no recollection of dialysis discussions until she went to her general practitioner on

an unrelated matter and found that dialysis was imminent. When Sharon was forced to confront

the immediacy of dialysis, she was overwhelmed and fearful of lifelong incapacity or early

death:

It was the fear of the unknown. I thought I was going to be an invalid for the rest of my life and... I was saying ‘No Mum, I’m going to die’… I was thinking about leaving my husband and leaving my son.

Frank had discussed the possibility of HD with his specialist, who suggested a likely time frame

that did not match the eventual reality “We drew a graph and he said I had six years before

they [kidneys] did pack in but ... it only lasted about two or three months.”

The participants themselves tended to be unrealistic about the timing of impending dialysis,

making mental preparation even more difficult. As a result, there appeared to be limited

opportunity for timely introduction of pre-dialysis education or the establishment of permanent

dialysis access. This left participants feeling ambushed by their circumstances.

Bob and his family were ambivalent about starting dialysis, but a heart attack forced him to

confront dialysis as a permanent management strategy. His experience of emotional shock was

heightened by the multiple body systems involved at the time:



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I started having these angina attacks… every hour. The arteries were blocked… within 15 minutes he had me in the operating theatre and had the system put in for the dialysis and put stents into the (coronary) arteries and I had… pneumonia… they put the tube down the throat… It has been a really dramatic experience for me.”

The shock resulting from the sudden need for dialysis for these individuals, and confronting

the possibility of death without dialysis, turned their world upside-down. Caregiver Kerry

commented:

I was talking to a lady... she’s quite traumatised, she said ‘One day your life’s normal and the next day everything’s different. Your husband’s in a life-threatening situation and it’s like pressing a switch from night to day and the world changes’.

For some participants, there had been limited recollection of medical or lifestyle management

to precede dialysis, and some patients could not recall any discussion about renal replacement

therapy. This raises an important question about when to implement appropriate interventions,

how to create opportunities to reinforce the gravity of the situation and how to assist with the

physical and emotional preparation of the deteriorating patient.

2. Loss of sense of self

Participants described a loss of personal autonomy and self-sufficiency and those losses did

not sit well with their previous sense of self. It was not just the loss of self-sufficiency, but also

the loss of ability to contribute to others and the resulting burden on family. Mary, an older

widow dependent on her busy daughter explained, “You’ve lost your independence... you

depend on other people all the time”. Vanessa lived with her brother whom she believed

provided her with no practical help. Asking for assistance from people other than family placed

dependence in a different dimension for Vanessa, “I’ve got to now ask... for help from my

friends... I’m finding it difficult to do”.

For some participants, their embodied view of themselves as young and physically competent

was lost; they were no longer able to perform in previously known ways. They described a loss

of ability to meet their own basic needs and, consequently, felt helpless and vulnerable. For

some male participants, their gendered construct of identity was severely challenged and in

Peter’s case, this led him to feelings of worthlessness:

A lot of blokes would be suffering with depression... like I felt… Feeling useless, that they’re no good for anybody anymore... I’ve always been independent... felt that it



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was a man’s place to support his family and ever since I’ve been sick I’ve been relying on the family to keep me going... F---ing useless! I should have died [crying] and it would have been better for everybody ‘cause it’s so hard on everyone now.

3. Loss of spontaneity and personal freedom

There was a sense of containment or even imprisonment associated with the initial HD period.

HD usually only restricts movement during the actual treatment, but for some, the subsequent

fatigue and loss of confidence meant the impact went beyond the HD session. Mary explained,

“[Dialysis] restricts me... I just can’t get out anymore”. Frank’s family were taking the dialysis

experience “in their stride”, but for Frank, the loss of possibilities were a source of sadness.

“We can’t really get up on a weekend and just shoot through to the country… you’re bound to

go back to hospital…”. Bob needed to reconsider his ability to drive as his health worsened,

“Even going down the road… I felt that I wasn’t capable. I’ve been driving for 50 years and it

is a big thing. You lose that feeling of... freedom”.

Many participants were already worrying about the future limitations dialysis might place on

their ability to take holidays. Kerry (mother of Denise) explained “When [Denise] was on PD

we used to travel... but with haemodialysis you can’t”. Sharon also noticed the lack of ability

to ‘escape’ when one is physically ‘tied’ to a HD machine “My sister will go off in the car and

I’ll think to myself, ‘She can go anywhere!’…”. These concerns were genuine because

arranging holidays for people on HD can be difficult due to the limited availability of holiday

placements in Australia. Holidays must be planned well in advance, and depend on the

discretion of the receiving dialysis unit. Kerry explained:

[Other dialysis units] won’t give you a set time… One person... had a wedding in Queensland… they’d be trying for nearly five months to get a date confirmed [for dialysis]... and they couldn’t get it.

HD may also impose significant limitations on work and retirement plans. For people like

Vanessa who needed to be financially independent, dialysis imposed unanticipated financial

stress:

I’m not working… I get part superannuation and part disability… I have assets which bring me over the threshold… I have liabilities like mortgages, investments so I’m going to have to re-look at my finances… I don’t have anybody else to rely on.



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4. Changed body feelings

Commencement of HD resulted in both positive and negative sensations within their changed

body. Some participants reported their body feeling better in its daily function. Sharon, who

was initially terrified of dialysis, fearing disability and death, actually found that it improved

her feeling of wellness, “My health is just so much better… I feel good. I’m not sleeping in the

afternoon, I’m holding a decent conversation and I’m eating well”. Peter noted, “…since I’ve

had dialysis I’ve felt much better. You could live. It got rid of all the fluid and… the sick

feeling”. This was in contrast to Frank’s experience where his body felt depleted. “... the

dialysis drains you right out... I was worrying about my blood pressure… I can feel it, you get

headaches...”. Sylvia experienced fatigue, “I go home and sit in my armchair and I go to

sleep”. This variation in reported physical effects is important for clinicians when providing

information about what to expect when initiating HD.

5. Reframing family roles

Data analysis revealed that the caring role was unremitting and required intense vigilance. It

was crucial that the person on HD adapt to significant lifestyle changes, including the need to

accept and receive care and the resulting change in relationship dynamics. Many of the

participants were buffered against the perceived burden of their care by the strong sense of

reciprocity (give and take), constancy and love they received from their spousal carers. Carla

framed her caring as something she chose to do and consciously conceived it as positive, “If

you’re going to take care of your husband… I think you have to want to do it... this is a thing

I’ve chosen to do and I will do so as long as Peter’s with us.”

There were fewer feelings of reciprocity amongst non-spousal carers and as a consequence

there seemed to be a greater perception of burden. The quality of pre-existing relationships

appeared to influence the response to caring. Daughter, Annette struggled with her feelings of

anger, guilt and resentment resulting from her mother Mary’s illness:

I feel guilty ‘cause I was Dad’s girl ...I would have walked over hot coals for my father, he expected nothing…, but Mum expects everything… My mother’s always been very good at emotional blackmail… she’s just transferred her dependency from my dad to me… The ACAT [Aged Care Assessment Team] said that she was high dependency… She said, “If you put me in a home I’ll just starve myself to death”.



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The demands of dialysis also seemed to polarise relationships with non-spousal relatives and

friends so they were either supportive or distanced themselves. Garry was disappointed and

shocked at his own family’s lack of interest in his health: My partner’s family has been… 100%

more supportive than my own... I’m just shocked… either they’re finding it hard to deal with

or they just don’t want to deal with it.

It may well be that when participants felt this way their confidence in close relationships was

undermined. Two participants were concerned that their relationships would not withstand the

illness and its consequences. Sharon felt that her relationship would not be strong enough to

bear both her diagnosis and dialysis:

In the beginning, I was worried… we’ve been married 28 years... I just thought it might be too much for him and he might leave me... if he did that, I’d just be devastated… but… he sort of got into it.

Garry also lacked confidence in his relationship with his pregnant partner who was already

giving so much of herself to the care of their child: “...it’s physically and emotionally

exhausting for her. She’s been good to me and I really appreciate it but there’s only so much

someone can go through… It’s been a strain on our relationship”.

Carer Janet had always been confident in her spousal relationship but felt her husband

was concerned about the loss of intimacy. She had to reframe the importance of sex in their

relationship:

I’m way younger than him…. sex... that’s not everything. We had our times… I keep saying “who cares, stop thinking about that... we have six beautiful children”. He said “I know you say that because you don’t want to hurt me” and I can see the guilt in him.

For others, the issue of living organ donation complicated family dynamics further. Some

participants were reluctant to ask family members to consider organ donation. Others were

particular about whom they were prepared to approach. For example, Frank would accept a

kidney donated by his wife but not his adult child. Garry’s family had initially said they were

willing to consider donation but had avoided further discussions. Vanessa’s brother didn’t want

to be involved at all and Sharon was unwilling to accept a kidney from any relative.



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6. Loss of social connectedness

Many participants felt the loss of social connectedness. Janice pointed out that these losses

encompassed both work and leisure activities “All my friends keep ringing me saying ‘Come

back [to Bingo]...’ and I’d say ‘I’m frightened’”. The loss of social connections affected both

patient and carer. Kerry (mother of Denise) explained, “I did a lot more active things… we

were involved with a few more groups… and I’m not anymore, not involved with anything

really”. It was clear that the dialysis experience could be all-consuming. The time involved

with HD and the fatigue that followed often challenged the individual’s capacity to plan and

maintain previous social activities. Vanessa’s interview clearly illustrated a loss of spontaneity

with connectedness:

[Dialysis] takes [all day] and then at the end of the day I couldn’t be bothered… so I don’t ring people… I just want to stay home... on my own… [but] I can’t neglect my friends… they have been very supportive… When I’m on dialysis… that’s when I’ve got the time to ring. I’ve got to plan when I do see somebody… make sure it doesn’t interfere with the dialysis.

Paul, Sylvia’s carer, accepted the loss of connectedness, social status and broader community

contribution that resulted from the initiation of dialysis. He had to prioritise Sylvia as his most

important commitment. Paul reflected that:

I used to be president of the RSL social club… I had to give it away ‘cause she’s not able to go… Every six weeks we used to have a trip… but she just couldn’t continue… Well I couldn’t do two things, she comes first.

The essence of the experience of commencing HD for participants in our study was a profound

sense of loss. This was expressed through their initial feelings of shock and grief, loss of sense

of self, spontaneity, freedom and well-being and loss of family and community roles. So

overwhelming was the impact of dialysis that several participants grieved for a ‘lost life’.

Sylvia explained, “I’ve got no life. I’ve got to come here three times a week”. Garry pointed

out “I’m only 33 … I didn’t have any worries… It was a good life but now… so much has

changed… you really want your life back”. In a similar vein, Vanessa commented “It’s like a

loss of a life... the life you knew is no longer able to be like that. So it’s a grieving process”.



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DISCUSSION

Heideggerian Hermeneutic Phenomenology has allowed an understanding of the complexity

of the early HD experience, situated as it is within the everyday concerns of people. The essence

of the experience, ‘a lost life’, emerged from the supporting themes which were well-developed

and richly described by the participants. The inclusion of family members strengthened the

data allowing multiple perspectives on the experience of loss and confirming ESRD as a family

experience. This sense of a ‘lost life’ sits in contrast to what some may expect as a sense of

relief associated with receiving life-saving treatment. The losses were multifactorial: physical,

emotional and social.

Whilst there is a vast body of work around outcomes for dialysis and ESRF, the findings of

this study are novel in their focus on the early dialysis experience and the impact on family

members. It was clear that decisions regarding dialysis required careful consideration and

collaboration between the individual, close family members and health care providers.

However, a recent meta-synthesis analysing patient and family decision-making in Chronic

Kidney Disease reported a lack of choice about treatment options (Morton, et al, 2010). This

was attributed to medical contraindications, physician preference and a lack of information on

treatment options. Other barriers to treatment choice were resource constraints that determined

factors like hospital versus home dialysis. In our sample, the rapidity of pre-dialysis decline

was also a major factor.

It appears that for those individuals who choose dialysis over conservative care, successful

transition depends on their willingness to consider all treatment options, their participation in

individualised pre-dialysis education and counselling, the proactive creation of vascular access

and timely initiation of dialysis (Iles-Smith 2005, Gutiérrez et al 2009, Davison 2011).

People with ESRD and their families require a considerable amount of preparation for HD. Our

findings may assist the health care team to understand the emotional and physical difficulties

arising from therapy that is invasive, restrictive and painful. Often the diverse needs of HD

patients and families exceed the capacity and scope of practice of the renal team, particularly

the HD nurses, and draws attention to the benefit of interdisciplinary and social input (Dermody

& Bennett 2008).



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A meta-synthesis of qualitative work (Bayhakki & Hatthakit 2012) identified a healthy social

life as an essential feature of the process of adaptation to HD. Our participants were interviewed

early in the HD experience, were still on in-centre dialysis and had yet to re-establish their

social world. For a range of chronic illnesses, a more balanced life is possible where the

development of alternative models of health care create patient-centred approaches to care

delivery (Jeon et al., 2010). Addressing the lag in dialysis commencement that contributes to

social losses during deteriorating health, and a more proactive facilitation of home dialysis are

examples of areas for improvement.

Those patient participants who did not identify strong family support appeared to have greater

difficulty coping with the demands of dialysis. In a robust study of the effects of social support

for dialysis patients, a perceived discrepancy between expected and received social support

was associated with increased mortality (Thong et al. 2007).

Providing care and support for people on dialysis is demanding and stressful for families. Many

of them may even consider their renal failure a ‘family’ disease because of the impact which

extends far beyond the individual receiving the treatment (Clarkson & Robinson, 2010). Long

term management can involve families undertaking a range of complex activities which may

include active facilitation of HD at home. People on HD may also rely on family members for

assistance with activities of daily living and transport. This level of involvement places

considerable pressure on personal relationships, and may also incur feelings of anxiety,

depression and fatigue and isolation from other family members and friends (Tong et al. 2008).

Our study, and other published findings highlight the effects of chronic illness on close family

and friends suggesting that they too share the burden of dialysis and need ongoing support

(Parlevliet et al. 2012). In addition, younger caregivers appeared to experience more caregiver

burden due to decreased reciprocity. Similar findings of younger, non-spousal caregivers was

reported by COPD carers (Gullick & Stainton 2012)

The great sense of loss expressed by our participants may signal a need for incorporation of

psychological support into this initial phase of dialysis to facilitate improved coping,

particularly where family support networks are not strong. In addition, formal patient and carer

support networks were not visible to our participants and several suggested the availability of

such support would have been beneficial to them, prior to and after initiation of treatment. Such

networks could provide an avenue to explore and express emotions through conversation or



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writing; activities that have been shown to lessen the intensiveness and invasiveness of chronic

illness, to decrease stress and anxiety, and to restore a degree of balance and normality in the

person’s life (de Ridder et al. 2008, McCarley 2009).

Some patients and close family members expressed a mutual need for family presence during

dialysis in the early period and this approach has been shown to a create a perception of

immediate emotional and physical support (Ziegert & Fridlund 2010). This has important

implications for dialysis unit design and culture to allow adequate space for others who want

to be present and staff receptiveness to having additional people in the unit.

The theme of loss involves a temporal understanding of the early experience of dialysis.

Heidegger’s understanding of temporality is not merely a single timeline of past, present and

future, but multiple dimensions of experience; separate pathways that we reach out towards

and see ourselves within (Richardson 2012). The person’s sense of past is the way they see

their ‘self’ already being. That self is made visible through their emotions and it is from this

domain of past that they give meaning to events. Our participants’ new way of life with HD

appeared to challenge their past sense of themselves as free, self-determining beings.

The future of our participants may be framed as the ‘who’ that a person is trying to be as they

reach towards their own potentiality of being (Heidegger 1927/1996) which includes

“stretching all the way out to my death” (Richardson 2012, p.183). The future is also envisaged

through Heidegger’s notion of ‘care’ (1927/1996 p. 249); the personal concerns that shape our

participants’ projection for future possibilities. In his analysis of Heidegger’s philosophy of

freedom, Lee Nichols (2009, p74) explains that we can let our relations with our world dictate

who we are, or it can be acknowledged that I, as a being who can question the meaning of my

own existence, will always have possibilities and, as such it is I who will determine my

existence (Nichols 2009). Our participants’ narratives and their illustration of a lost life in this

early phase of dialysis portrayed a sense of lost future. People appeared so overwhelmed by

the enormity of their changed world that they were not yet ready reframe their existence by

grasping alternative possibilities for themselves.



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Limitations

Due to the semiotic nature of hermeneutic analysis, individuals were excluded from the study

if an interpreter was required for an interview because shared understanding is not guaranteed

across culture and language. This meant that the researchers were not able to explore the

experience of people who were non-English speaking.

The median age of our participants was much younger than that reported in Australian and New

Zealand statistics (ANZDATA) for dialysis commencement (40.5 versus 60.7 years)

(McDonald & Hurst 2011). It is possible that our participant’s experience may differ from that

of older people. Our study would have been strengthened by a larger sample of carers, although

our themes for carer experience were rich and well-developed.

Conclusion

It appears that people may embark upon HD mentally and physically underprepared. A greater

focus on preparation for the possibility of dialysis, and frameworks of care that support

adjustment to this new way of life are of vital importance. Family presence during HD and

support groups for patients and family may assist with transferring some of the load from the

health care system to a more robust social system.

RELEVANCE TO CLINICAL PRACTICE

SUMMARY BOX

1. Acknowledgement of the multiple losses experienced by people initiating HD

2. Consideration of patient and family supports groups and/or clinical psychology

3. Infrastructure to support presence of a family member in the early phase of HD



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Table (1) Study Participants’ Information

Patient Carer Pre-HD Creatinine

Pre-HD Urea

Pre-HD

eGFR

Background and Clinical Features

Harry – declined to be interviewed

Janelle, 59 yrs wife

Creat 1491 Urea 57.7 eGFR 3

73yo male with End Stage Renal Failure (ESRF) secondary to hypertension. Failed peritoneal dialysis (PD). Initiation of HD via temporary haemodialysis catheter until arteriovenous fistula (AVF) matures.

Mary Annette, 52 yrs daughter

472 25.6 8 80 yo female ESRF secondary to analgesic nephropathy. Failed PD. Initiated HD via temporary haemodialysis catheter as patient resistant to AVF.

Peter Carla, 63 yrs wife

328 28.4 18 67 yo male, ESRF secondary to Diabetes Mellitus (DM) and Renal Artery Stenosis (RAS). Failed PD. Initiated HD via temporary haemodialysis catheter after failed AVF.

Denise Kerry, 60 yrs mother

815 38.1 5 30 yo female ESRF secondary to glomerulonephritis (GN). Failed PD. HD initiated via temporary haemodialysis catheter as unable to tolerate needles.

Janice

Husband – unable to be interviewed due to recent stroke.

295 22.5 14 84 yo female with ESRF secondary to hypertension. Failed PD despite multiple catheters. Initiated HD via AVF.

Frank No carer 692 38.9 8 61 yrs, male ESRF secondary to focal sclerosing glomerulosclerosis (FSGN) initiated HD via temporary haemodialysis catheter as AVF not created.

Sharon Husband – not interviewed due to illness.

849 48.1 4 58 yo female ESRF secondary to lithium toxicity. Initiated HD via temporary haemodialysis catheter as AVF not created.

Garry Partner – not interviewed

491 15.8 13 33 yo male ESRF secondary to Immunoglobulin A (IgA) nephropathy. Initiated HD via AVF.

Bob Wife – not interviewed

808 41.2 6 77 yo male Acute on Chronic Renal Failure (CRF) secondary to IgA nephropathy. Initiated HD via temporary haemodialysis catheter.

Vanessa No carer 464 10.1 9 53 yo female ESRF secondary to FSGN. Initiated HD via AVF with multiple



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cannulation problems, forearm steal syndrome and fistula stenosis.

Sylvia Paul, 86 yrs husband

952 29.4 4 78 yo female CRF secondary to Polycystic Kidney Disease (PCKD). Initiated HD via temporary haemodialysis catheter as thigh loop created developed complications.

William No carer 1112 56.8 4 66 yo male CRF secondary to HTN. Initiated HD via femoral temporary haemodialysis catheter after multiple attempts at establishing access.

*Normal values: Serum creatinine 70-110mmol/L, Urea 3-8mmol/L, eGFR >60 mls/min



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Table 2. Interview Guide.

Fig.1. Heidegger’s Hermeneutic Circle

Figure 1. Heidegger’s Hermeneutic Circle

Interview Guide –Patient Participants 1. Can you talk to me about what life was like for you before you developed kidney problems? 2. What things in your life changed after you developed kidney problems? 3. How has dialysis treatment changed things since then? (good & bad things) 4. What are some of the things you need help with while you are having dialysis? 5. What are some of the things that have stood out in your mind about your hospital visits? 6. What were the best things about your hospital visits? 7. What were the hardest things about your illness and hospital visits? 8. How do you think your family has experienced your illness and dialysis?

Interview Guide - Family member 1. Can you talk to me about what life was like for you before your family member developed

kidney problems? 2. What things in your life changed after your family member developed kidney problems? 3. How has dialysis treatment changed things since then? (Good & bad things). 4. What are some of the things they need help with while on dialysis? 5. What are some of the things that have stood out in your mind about their hospital visits? 6. What were the best things from your perspective as a carer, about their hospital visits? 7. What were the hardest things, from your perspective as a carer, about their illness and

dialysis? 8. What do you think is the most important thing that a hospital can provide for family carers?

A lost life: Coming to terms with haemodialysis

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