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GRIFFITH UNIVERSITY

AUSTRALIAN INSTITUTE FOR SUICIDE RESEARCH AND PREVENTION

PhD candidate

GEORGIANA ANTOCE

CONFIRMATION DOCUMENT

PhD thesis topic:

Stigma and its impact on treatment outcomes in psychiatry

Exploring adaptation to locked wards in acute inpatient settings a qualitative study.

Supervisors:

Professor Diego de Leo and Professor John O�’Gorman

External supervisors: Professor Warwick Middleton (UQ) / Associate Professor Martin Dorahy(Canterbury University)

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ABSTRACT

Stigma is ubiquitous and has significant socio historical roots. The research on stigma has moved fromGoffman�’s 1963 study of the �“spoiled identity�” to elaboration on theoretical models and componentvariables of the stigma phenomenon. The stigma of mental illness has attracted growing attention fromresearchers, definitions have been enlarged to include self and associative stigma and cross sectionaland empirical studies have added knowledge about the concept, its reality, general public views andreactions, associated impact on quality of life, human rights and recovery in mental illness. The livedexperiences of people affected by stigma of mental illness has become a focus of attention in the lastdecade, however there continues to be a paucity of data from qualitative research in this field.

At this stage there is no question about the reality of stigma and discrimination related to people withmental illness, with awareness of variations related to different diagnostic categories. Psychiatry, itsservice delivery models and theoretical underpinnings and the mental health care providers have beenidentified as principal contributing factors in perpetuation and/ or attenuation of stigma related tomental illness. Few studies have focused on the subjective experience of health care practitioners andothers have addressed service related contributors to stigma, such as structural discrimination and thereality of power as a necessary dimension for the creation of stigma.

This paper will present a proposed qualitative study looking at the �“adaptation�” to the locked acutepsychiatric inpatient ward environments, as experienced by providers and recently discharged patients.Broad themes related to stigma and suicide risk (death wishes) will be explored in narratives of suchadaptations, with inductive deductive analysis of emergent data and co creation of theory. The goal is toenrich understanding of the phenomenon of stigma as lived experience in psychiatric health careproviders and patients and explore experiential dimensions of interpersonal, context specificadaptation to psychiatry as practiced in the environment of a locked ward. The methodology will involveconstructivist grounded theory methods (Charmaz 2006).

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TABLE OF CONTENTS

Chapter 1: Introduction�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….4

1.1 Chapter overview�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..4

1.2 Research questions�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…5

1.3 Research strategy and methods�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..5

1.4 Study scope�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….6

1.5 Originality and significance�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….6

1.6 Chapter summary�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…6

Chapter 2: Literature review�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..7

2.1 Chapter overview�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…7

2.2 Literature search strategy�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…. 7

2.3 Stigma of mental illness�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….8

2.3.1 General definition of terms�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…8

2.3.2 The stigma of mental illness its nature, associated aspects and research approaches�…�…�…�…�…10

2.4 Psychiatry and stigma�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…12

2.5 Shifting paradigms in stigma research and in psychiatry�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….16

2.6 Chapter summary�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….17

Chapter 3: Methodology �…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…18

3.1 Introductory notes�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..18

3.2 Goals, objectives and research questions�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..19

3.3 Methodological framework�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…. 20

3.3.1 Qualitative research paradigm�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..20

3.4 Research strategy�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….21

3.5 Research methods�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..22

3.5.1 Sampling�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..22

3.5.2 Data collection and analysis�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..23

3.6 Ethical considerations�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…..24

3.7 Progress to date and projected timeline�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….24

References�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�…�….26

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Chapter 1. INTRODUCTION

1.1 Chapter overview

This chapter discusses highlights in the literature about stigma and psychiatry and discusses the role ofthe proposed study in filling in some of the identified gaps. Goals and methods will be discussed, as wellas original contributions.

1.2 Research question

The presence and significance of stigma in medicine and in psychiatry has become increasinglyrecognized as a specific phenomenon and major contributing factor in the overall outcome of healthcare delivery approaches. Stigma definitions and research methodologies have influenced data aboutstigma and the role it plays in the overall treatment outcome in psychiatry (Arboleda Florez andSartorius, 2005, 2008; Link et al, 2001; Corrigan et al 2011; Thornicroft, 2006, Angermeyer et al 2006).While there has been growing awareness of and significant public efforts at reducing the stigma ofmental illness, available data provides evidence that most paradigms guiding anti stigma campaignsneed re assessment (Stuart, Arboleda Florez and Sartorius 2012). There is a rich body of literature aboutthe prevalence and significance of stigmatizing beliefs in the general public, in psychiatric patients andtheir families and some comparative data about such beliefs as related to specific diagnostic labels andtreatment modalities. From this data, it appears that psychotic disorders are the least understood andmost stigmatized conditions in psychiatry. There seems to be a dearth of literature on stigma relatedprocesses in mental health care providers, on the subjective experience of patients and staff in differenttreatment settings and on the adaptation to the novel �“institutional�” trend in the practice of psychiatry.

Medical research has been dominated by quantitative or mixed methods studies, based on a positivistparadigm allowing for only partial in depth exploration of specific subjective phenomenon and focusingmostly on measurements of observable/ quantifiable variables. Research in the fields of public health,sociology, psychology and nursing has attracted increased use of qualitative methodologies, thusacknowledging multiple perspectives on the same reality (Rusch et al 2009; Verghaeghe et al 2012).General psychiatric research remains dominated by comparative and outcome studies based on�“biological�”, �“technological�”, �“disease�” model explanations for clinical realities and the assumption ofepistemological value of diagnostic labels indicative of underlying pathological processes (Bracken et al2012). Much debate and recent criticism has been generated by the increase in the number of �“labels�”psychiatrists use (DSM V; ICD 10) and by the interface of the profession with the pharmaceuticalcompanies. Inside clinical psychiatry there is a subtle �“split�” between advocates of psychotherapeuticapproaches and �“biological�” psychiatrists, advocating the use of medication and other physicaltreatment methods, both sides falling short of the full appreciation of context. This is a larger topic that

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extends outside of the current research objective, yet is relevant for the existing body of data andprevalent treatment approaches in psychiatry (guidelines, accountability, clinical and legal ramifications,outcome studies and prognostic pronouncements). In addition, healthcare providers are exposed togroup specific stigma issues when facing their own poor health or periods of impairment (Barnett andHillard, 2001; Cain 2000) and questions have been raised about their exposure to associative stigma ascarers of stigmatized population groups.

In regards to services, studies have looked at patient and staff perceptions of specific measuredvariables in locked wards environments (dangerousness, safety, patient satisfaction, use of coerciveapproaches in treatment). Goffman�’s study of the �“total institution�” in the sixties described theorganization of life/ structure and function in institutional care as it applied to large psychiatric asylumsof that time (�“Asylums�”, 1961). Literature related to services trend in psychiatry indicates a growing �“reinstitutionalization�” tendency. Review of this literature has identified the usefulness of �“adaptation�” as ameasure of personal experience and assessment of service related factors affecting treatmentoutcomes. The essence of �“the institution�” can now be seen in the separation of power and in the legalframeworks around clinical practice rather than only in �“bricks and mortar�” structures with entrenchedbehavioral routines. The clinical reality of acute psychiatric care continues to involve involuntaryadmissions and coercive treatment approaches in locked wards and longitudinal studies indicate thatnegative first admission experiences are associated with increased suicidality and poorer overalltreatment outcomes. This reality coexists with emerging consumer dialogues around empowerment andrecovery in �“severe�” mental illness (Chow et al 2013; Quirk et al 2001; Baker and Buchanan Baker 2008;Coleman 2011).

This overall picture leaves one confused by contradictions extant in professional and public discoursesand by what seems to be an unchanged clinical reality for patients of public psychiatric services. It callsfor a broader positioning of research about psychiatry and its stigma in the historical and socio politicalcontext of the current risk aversive culture. This study aims at deeper understanding of livedexperiences and co constructed identities through adaptation in the specific context of inpatient highsecurity, locked wards places of �“structural stigma�” (Hannem 2012) and of clear power separation. Inthis way, its goals are to ground research data in complex real lived experiences for psychiatric patientsand health care providers, further our understanding of the entrenched stigma associated with mentalillness and inform paradigm shifts in psychiatric services and delivery of care models.

1.3 Research strategy and methods

Data will be obtained through in depth and semi structured interviews with staff members nursepractitioners and psychiatrists and recently discharged patients of a locked, high security inpatientward in a public psychiatric hospital. The research strategy of constructivist grounded theory will guidepurposive and theoretical sampling, data collection and analysis and focus group discussions will confirmand enlarge initial emergent themes. These data will be further checked against existing and emergent

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theory through collaborative dialogues with experts in the field and contribute to development of newtheory on aspects of stigma as relevant to the practice of psychiatry.

1.4 Study scope

This study will explore lived experiences of main parties adapting to practiced psychiatry inside lockedwards. Involuntary admissions and use of coercive treatment approaches continue to be part of thecurrent clinical reality in psychiatric practice and has been identified as contributor to stigma and suicidein people with mental illness (Katsakou et al 2007, 2012; Cleary et al 2009; Chow and Priebe 2013). Thisstudy aims to develop new insights into the phenomenon of stigma (broad definition as per Link et al2001) and its complex interface with psychiatry and hopefully translate, through theory creation, intoguides for adjustments in clinical practice.

1.5 Originality and significance

Since Goffman�’s description of the �“total institution�” in �“Asylums�” (1961), there has been limitedqualitative research into the lived experiences of staff and patients in acute high security inpatientwards. Staff members and, in particular psychiatrists, have not been the subject of in depth qualitativeresearch in relation to the experience of stigma/ stigmatization despite being identified as both �“victimsand perpetrators�” in regards to patients�’ experiences. The current study will help understand the livedexperience of those sharing the space of locked psychiatric wards as new �“institutional�” spaces inpsychiatry.

While different psycho social variables have been addressed in recent research, the focus on�“adaptation�” as a complex experience is lacking in analyses of treatment settings and encounters.Adaptation as a broad process allows for less bias in exploration of lived experiences through qualitativemethods.

The definition of stigma for this study will be as promoted by Link and Phelan (2001) to be used when�“elements of labeling, stereotyping, separation, status loss and discrimination co occur in a powersituation that allows the components of stigma to unfold�”. According to this definition, the lockedpsychiatric ward appears to create the conditions for structural stigma (Hannem 2012). The study aimsto explore aspects of �“adaptation�” to this specific reality of stigma, intrinsic in the context of treatmentencounters in locked wards.

The exploration of �“adaptation�” in an enlarged sense might also allow for deeper understanding of thedocumented association between increased suicide risk after discharge from hospital care and theassociation of perception of coercive, disempowering treatments during involuntary first hospitaladmissions with poorer psycho social outcomes.

1.6 Chapter summary

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This study aims to increase the understanding of lived experiences in locked psychiatric wards andconstruct theory on the phenomenon of stigma and suicide as it relates to treatment realities in the new�“institution�”, namely high security wards in acute hospital settings.

Chapter 2: LITERATURE REVIEW

2.1 Chapter overview

This chapter presents data from a broad topic related narrative literature review and gives a preliminarysummary of existing knowledge on stigma and psychiatry to help situate the proposed study.

The data will be structured around themes considered relevant for the purpose of this study and willstart with a clarification of terms. The search strategy will be presented, with a mention that the currentreview is not meant to be exhaustive. It helped define the research questions and locate the proposedstudy in the complex data on stigma and psychiatry.

The topics covered will be: stigma of mental illness; stigma and psychiatry and paradigm shifts in stigmaand in psychiatry. The chapter will end with a summary and discussion of themes considered relevantfor the design of this study.

2.2 Literature search strategy

I conducted a narrative literature review including articles, books and online data focusing on titles withhigh levels of relevance to the topics of stigma and mental illness/ psychiatry. The search covereddatabases of two university libraries, including published articles and e books from 1960 to 2014 fromareas of psychology, psychiatry, medicine, public health, social science, humanities and philosophy.Preference was given to review articles, sources published in the past 10 years, authorship byrecognized experts in the field and innovative approaches or study subjects. The databases accessedwere PubMed, PsycInfo, Web of Science, ProQuest, Science Direct, Scopus, CINAHL and Google Scholar.The search terms used were �‘stigma�’, �‘stigma and mental illness�’, �‘self stigma�’, �‘stigma and psychiatry�’,�‘stigma and psychiatrists�’, �‘coercion and psychiatry�’, �‘recovery and psychosis�’, �‘locked wards and stigma�’,�‘involuntary treatment and psychiatry and suicide risk�’, �‘qualitative research and psychiatry�’, �‘qualitativeresearch and stigma�’. The abstracts of relevant articles were read, with full text reading of reviewarticles, articles considered highly relevant and recently published topical research data. The list ofreferences of full text articles provided additional sources and this broadened the literature reviewedwith reference to cross disciplinary readings overlapping philosophy, systems of thought, sociology andservice development. As much as possible, only articles published in English were included and attentionwas paid to research using qualitative methodology, with attempts to integrate the voluminousliterature in these fields describing results of quantitative studies.

This search strategy is in keeping with the principles of a broad, topic related search of available datarequired for qualitative research and has no claim to comprehensibility or systematic synthesis. It

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provides an understanding of previous research in the field of stigma and psychiatry and will be updatedthough examination of additional literature during the study.

I will present relevant data grouped around the following three broad topics: stigma of mental illness/psychiatry and stigma/ paradigm shifts in stigma research and in psychiatry.

2.3 Stigma of mental illness

2.3.1 General definitions of terms

Stigma.

�“Once you label me, you negate me�” (Soren Kierkegaard). �“Tread softly, because you tread on mydreams�” (Yeats).

The original meaning in Greek of the word stigma refers to a mark or imprint. Foucault (1980) described�“the gaze�” as a means of social exclusion and maintenance of status quo of the established social order.The definition of the term in Goffman�’s synthesis of a decade of social psychology literature, as �“anattribute that is deeply discrediting�” (Stigma: Notes on the Management of a Spoiled Identity, 1963)focused subsequent research on groups of �“tainted�” individuals, their characteristics and the negativeimpacts of stigma on the lives of people affected by it. Goffman articulated �“the need for a language ofrelationships not attributes�” and elaborated on the construction of social identities based on societalstructures and symbolic communication. However, this definition was later criticized as being toonarrow and contributing further to the exclusion of and perpetuation of negative views about a group ofpeople with those attributes. In addition, advocacy groups highlighted that a narrow focus on personalattributes in stigma research shifts the attention away from the larger societal structures responsible fordiscrimination and social exclusion (Link and Phelan 2001; Sartorius and Schulze 2005).

Other definitions describe stigma as �“a characteristic of persons that is contrary to a norm of social unit�”(Stafford and Scott 1986 quoted by Link), �“a characteristic that conveys a social identity that is devaluedin a particular context�” (Crocker et al 1988 quoted by Link 2001) or �“a relationship between an attribute,a stereotype and discrimination�” (Link and Phelan 2001). An enlarged definition provided by Link andPhelan (2001) outlines the components of labeling, negative stereotyping, separation, status loss anddiscrimination, co occurring in �“a power situation that allows unfolding of the stigma process�”.

Further elaborations on definitions of stigma in the literature separate external, explicit stigma andstigmatization from the implicit or self stigma as endorsement of negative stereotypes by the peoplewho are prejudiced (Corrigan, 2001, 2006). Goffman identified the �“courtesy stigma�” as an extension ofnegative beliefs and attitudes towards people associated with stigmatized groups. This has also beencalled associative stigma. Whitely (2005) emphasizes the associated social exclusion intrinsic to theprocess of stigmatization and refers to differential access to social networks, feelings of alienation,socio economic and structural exclusion, which has come to be defined as structural discrimination.Structural stigma has been defined by Hannem (2012) in relation to �“stigmatic assumptions that become

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embedded in social policies and practices�” and Pinel (2004) defined stigma consciousness leading tochanged identity and interactions based on anticipation of stigma.

The literature on stigma has increased exponentially in the last 50 years and covers a variety ofstigmatized situations/ aspects/ groups of people, personal and societal consequences. The voluminousbody of literature on this subject brings into perspective the scale of the phenomenon that has attractedresearch attention from multiple fields of enquiry.

For the purpose of this study, only the literature on stigma of mental illness was reviewed in depth.

Mental illness

Mental illness or psychiatric disorder is defined as �“a clinically significant behavioral pattern that causessuffering, disability or potential loss of freedom�” (APA 2000). It involves �“changes in the way a personfeels, thinks, behaves and interacts with others�”, that are not considered socially normative. In itself, thewordmental is described in the Oxford Thesaurus (2005) as an adjective related to mental faculties ormental disorder, with its opposite identified as the adjective physical. In the same reference guide, theword illness is equated with sickness, disease, malady as opposed to good health. Campbell�’s PsychiatricDictionary (2004) definesmental health as �“psychological well being or adequate adjustment,particularly as such adjustment conforms to the community accepted standards of humanrelationships�”. Oxford Thesaurus gives a much richer definition for the term �“mad�” equivalent withmentally ill, quoting terms such as �“insane, certifiable, demented, not in one�’s right mind, crazy, lunatic,raving, psychotic, psychopathic, away with the fairies, off one�’s head, nuts, bonkers, loony, bananas,gaga, schizoid, not all there, not all there, wacko�”�…Most of these descriptions and the separation ofmental from physical illness are associated with negative stereotyping, are culturally reinforced andcontribute to the pervasiveness and resistance of stigma associated with mental illness.

Historically, the behavioral and linguistic �“differentness�” of people affected by mental illness constitutedthe trigger for such stereotyping and yet, attitudes towards the mentally ill varied from culture toculture and have not always been hostile. Foucault refers to �“the ship of fools�” during the Renaissance,inspiring artists and alluding to mythological meanings and to the access of those thus afflicted toesoteric knowledge beyond reason, which they could impart in symbolic ways. To understand why thementally ill were selected for scientific study in the 17th 18th century, with the birth of the generalhospital, he describes the evolution of systems of thought and structures of power in society, related tothe rise of rationalism, mercantilism and positivism at that time and to the need to manage �“theundesirables�”, who did not conform. For Foucault, the birth of psychiatry as a medical discipline was theresult of emergence of a different societal organization, with power structures that required adequatesocial control and of a scientific enquiry made possible through the physical isolation of the subject ofstudy in segregated places (Foucault 1961, 1973 1974).

Psychiatry is now defined as �“a branch of medicine that deals with the prevention, diagnosis andtreatment of mental and emotional disorders�”. Multiple diagnoses are described in classificationsystems like DSM and ICD and are perpetually revised and updated. The focus on treatment research,mostly dominated by a positivist paradigm and the search for pharmacological or physical methods of

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cure for a supposed underlying pathological process in the brain, has ignored exploration of otherfactors involved in the genesis of psychiatric symptoms and has alienated the subject of such research.

A database search using the terms �‘stigma and mental illness�’ brings voluminous results reflectingresearch into areas connected to stigma and psychiatric patients over the last 50 years/ a similar searchusing �‘psychiatry and stigma�’ brings half of this data and a big part of it is made of duplicates of studiesrelated to measurements of stigma associated with different psychiatric diagnoses. This might indicatethat there is a subtle but real differentiation in the reception and evocative power of terms like �‘mentalillness�’ as an experience of patients and �‘psychiatry�’ as a medical discipline invested in scientificresearch. It may be that the concept ofmental illness is in itself stigmatizing.

Providing these definitions helps clarify some of the conceptual themes in public and professionaldialogues and helps understand the subject of this study.

2.3.2 The stigma of mental illness its nature, associated aspects and research approaches

Stuart, Arboleda Florez and Sartorius conclude in their review of current data in the field that: �“themental illness conveys a master status on the individual that interferes with every subsequent aspect oftheir being in the world�” (2012). Hayward and Bright (1997) in their review of early research on the termindicate that studies by Cummings (1957), Nunnally (1961) and Star (1957) showed that the generalpublic �“feared and disliked the mentally ill and desired to avoid them�” and Farina et al (1971)demonstrated a negative effect of a mental illness label. They indicate that most early research in thearea of stigma was �“based on an empty seat model�” relying on scales and vignette studies to assesspublic beliefs and attitudes and showed that the labelsmental illness (identified as �“being in hospital orreceiving treatment�”),mental patient have negative associations. In their analysis of causativemechanisms in stigma associated to mental illness, there is a mention of �“dangerousness, attribution ofresponsibility, poor prognosis and disruption of social interaction�” among the main factors and suggestthat �“stigma should not be denied, that a more holistic conceptualization of mental illness would havepositive impacts together with a continuum model of emotional health ill health and review ofprognosis and that direct contact with individuals with mental illness might be the main approach tofacilitate a shift in stigmatizing attitudes and behaviors�”. These findings were reproduced in research byLink (1987) and Corrigan (2000). Scheff (1966, 1975) raised the question about the role of labeling in thegenesis of stigma and perpetuation of mental illness symptoms through �”secondary deviance�”. Thelabeling theory was opposed by Gove (1982) and others on the basis of a medical model rationalizationof relapse and denial of any impact of stigma on the course of illness. Link (1987) provided evidence foramodified labeling theory, showing that the negative label of mental illness can exacerbate the existingdisorder for individuals affected. These findings were later reproduced in studies by Link, Cullen et al1987; Link, Phelan, Pescosolido 1999. Public and self stigma have been identified and measuredtogether with associated multiple level impacts on the lives of individuals from the stigmatized groups(Corrigan, 2001, 2002; Markowitz 2001; Link 1987; Wahl 1999;Farina 1973; Phelan et al, 2000; Martin,Pescosolido et al 2000; Druss et al 1998; Link and Phelan 2001; Pincus 1999; Angermeyer and Schulze2001, 2003; Stuart 2007; ).Apart from loss of life opportunities, there is restricted access to housing, jobsand promotions, insurance, appropriate medical care, an increase in criminalization and involuntary

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treatment approaches, perpetuation of prejudice, fear and exclusion from meaningful socialparticipation, decreased self esteem and withdrawal and the creation of discriminating institutionalpolicies and unfair social structures. More recent research has focused on the impact of stigma on selfconcept and identity (Lysaker, Roe et al 2007; Ritsher and Phelan 2004; Livingston and Boyd 2010), onsymptom severity and recovery (Schulze and Angermeyer, 2003; Hansson and Bjorkman 2005;Thornicroft, Brohan et al 2009; Cerit et al 2012; Wahl 2011), on anticipation of discrimination and itsimpact (Thornicroft et al, INDIGO study group 2009); on the stress of coping with stigma, its relation toresilience, insight and suicide risk (Rusch, Corrigan et al 2009; Hannem 2012; Cooke, Peters et al2007;Crumlish et al 2005; Link, Struening et al 2001; Livingston and Boyd 2010),quality of life(Marcussen et al 2010), self esteem and self efficacy (Corrigan et al 2002, 2006; Rusch et al 2010);empowerment and demoralization (Ritscher and Phelan 2004; Rusch et al 2011; Yanos et al 2010;Brohan et al GAMIAN study group 2010), and resistance against stigma (Thoits 2011).

Corrigan (2006) provided a summary of theoretical models of stigma drawn from understandings insocial psychology and sociology, referring to the sequencing of stereotype prejudice discrimination(Fiske 1998). This includes discussion of the role of affect, cognition and motivation in creation of stigma(models such as classical conditioning, misattribution, displaced aggression, the �“just world�” hypothesis,authoritarianism and social identity theory). The research in the area of stereotype formation andactivation, ambivalence and suppression depending on context and voluntary effort and exploration ofthe defensive projection in situation of uncertainty all add to the understanding of mechanisms involvedin prejudice and stigma formation. In the discussion of practical implications of these findings andtheoretical elaborations, Corrigan indicates that �“negative reactions to people with mental illness willdecrease if individuals are reminded that their reactions are often elicited by the context�”; that blockedanger provoking situations may lead to discrimination through misplaced aggression and that�“individuals endorsing authoritarianism are more likely to stigmatize the mentally ill. Sociologicaltheories of stigma of mental illness refer to labeling and modified labeling theories and while the�“reality�” of mental illness is more accepted in the present debate, �“many sociologists assign prominentcausal roles to social rather than biological factors in the onset and course of illness�” (Horowitz 2002 andLink & Phelan 1995 quoted by Corrigan).

Stuart, Arboleda Florez and Sartorius (2012) point out that �“seven of the top 20 causes of disabilityworldwide were attributed to mental and substance use disorders�” (The World Disability Report 2011)and that �“despite UN resolution of 1991 and Convention of 2008, a big part of the world�’s populationhas inadequate mental health care reflecting processes of structural stigmatization�”. This is in additionto the persistent tendency to devalue people with a mental disorder. Large anti stigma programs in anumber of countries have been initiated and have produced mixed results, mostly improving knowledgeand beliefs about mental illness but not leading to changed attitudes or significant changes in structuraldiscrimination. This is consistent with Link and Phelan�’s discussion of the multiple levels, contextdependent and multifactorial nature of the stigma phenomenon, ensuring spontaneous changes indimensions of discrimination to compensate for diminution in some aspects of the process secondary tofocused interventions. In their view (2001) �“as long as dominant groups sustain their view of stigmatized

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persons�’ stigma phenomenon will self perpetuate through compensatory mechanisms in line with their�“dependence on power differences�”.

In summary, the literature on stigma has revealed its entrenched and multi layered, context specificnature and has highlighted individual and societal factors contributing to the origin and perpetuation ofstereotypes and social exclusion of those stigmatized. The dependence of the phenomenon on powerstructures and dominant systems of thought has become more evident and has been identified aspossibly the main cause for the persistence of stigma. Psychiatry has shifted in its roles betweenrepresentation of patient interests and promotion of well being and its involvement in aspects of socialcontrol and �“protection�” of larger social groups against afflicted individuals. The large body of researchon stigma of mental illness is the result of research endeavors in the fields of social science andpsychology and more recent studies by nurse practitioners. The field of stigma associated to clinicalsettings in acute psychiatry seems underrepresented in the current body of data and the livedexperiences of those affected by stigma have only recently become a priority in stigma research. Thissituates the current study as timely and necessary to fill some of these theoretical gaps .

2.4 Psychiatry and stigma

The meaning of the word psychiatry relates to old Greek and to the �“healing of the soul�”, yet its practicehas moved towards a medical model that is biased towards �“denial of the soul�’. In the 60�’s a reactionagainst the �“total institution�” (as described by Erving Goffman in Asylums in 1961) crystalized in �“theanti psychiatry�” movement promoted in writings and different approaches to psychiatric practice by RdLaing and Thomas Szasz. Szasz opposed the involuntary treatment in psychiatry and questioned thevalidity of diagnostic labels (viewed as attempts to medicalize and control socially undesirable behavior).Laing (1927 1989) and Arieti (1914 1981) argued that �“mental disorder is a comprehensible reaction tothe impossible demands families and societies place upon certain sensitive individuals�” (Burton 2010)and saw the role of a psychiatrist as facilitator of a transformative journey through engagement with thesymbolic language of psychosis.

In the past 50 years, the practice of psychiatry has been mostly uniform, coordinated through practiceguidelines and diagnostic agreements and influenced by developments in psycho pharmacology. Somesubtle splits exist inside psychiatric practice in regards to conceptualizations of mental illness, its causesand beneficial treatment approaches as well as prognostic implications. This has been furtheraugmented by the development of a solid evidence based data supporting the use and long termbenefits of psychotherapy and by emergence of discourses from critical psychiatry groups in the UK in1999 and more recently in the USA. These professionals have challenged aspects of diagnosis andtreatment in psychiatry, assigning �“a central role to context and meaning in the theory and practice ofpsychiatry�” (Moncrieff 1997, Bracken 2001, Thomas 2013). There has been simultaneous growth ofservice users and survivor movements such as Hearing Voices and recovery networks andcommunication has started to occur between psychiatrist and representatives of these ex patientgroups. A review of data in this regard is beyond the scope of the current study and mention of it helpsappreciate current expressions of discontent about �“standard�” psychiatric practice from within thesystem of treatment relationships.

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Early research in the field of stigma was often led by psychiatrists and seldom focused on assessing thepresence of stigmatizing attitudes in the psychiatric health care providers or the stigma associated withcontexts of care provision. I will discuss some of the data on the role of mental health professionals instigmatization of people with mental illness and their own experience of associative stigma. This will befollowed by discussion of data on stigma associated with receiving treatment as an involuntary patientin a locked ward environment.

A literature review by Beate Schulze (2007), reveals unexpected data from studies of the last decade onthe subject of stigma of mental illness and the role of mental health care providers (Byrne 2000; Lauberet al 2006; Nordt et al 2006; Sartorius 2002; Shulze and Angermeyer 2003). In many situations,particularly when approaching patients with schizophrenia and their families, the mental healthprofessionals were identified as among the most discriminating group and the first to initiate suchexperiences. This was related to a lack of interest and absence of personalized treatment approaches,diagnostic labelling given in association with poor prognosis and patients�’ experience of personal neglectin hospital settings. Professional communicative messages were often perceived as �“disheartening andas reducing patients to their illness related deficits�”. In addition, poor provision of information ontreatment options, medication side effects and the poor quality of mental health services added topatients�’ perception of stigmatization. Results indicated a general desire for outpatient services andpreventive/ rehabilitative approaches rather than a focus on reduction of symptoms (Pinfold et al 2005;The Royal College of Psychiatrists 2002). Such findings indicate that mental health care providers may beunaware of the negative consequences of their own actions on the well being of the very patients theycare for and the absence of action to redress this aspect contributes to stigma and poorer treatmentoutcome in psychiatric patients.

Shulze further emphasizes the paucity of research data into mental health professionals�’ attitudestowards mental health and illness, compared to existing data on public attitudes. The studies reviewedassessed beliefs about mental illness, the presence of stereotypes and desire for social distance,opinions on civil rights and restrictions justified by the presence of mental health problems and clinicianpatient contact behaviors. A survey of more than 2500 Australian mental health professionals (Caldwell

and Jorm, 2001) revealed pessimistic views about treatment outcomes and prognosis for schizophreniaand depression, with psychiatrists rating the most negative in their views. These results were replicatedby studies in Italy, UK, USA and Austria. Psychiatrists were found to hold more negative stereotypicalviews about people with mental illness when compared to nurses and other therapist groups. Otherdata indicates endorsement of stereotypes of dangerousness in people with mental illness and a desirefor social distance. In regards to restrictions on civil rights for patients, the majority of those working inmental health are in support of involuntary admission and treatment (Nordt et al 2006, Lepping et al2004). Shulze asserts that �”it is striking that the majority of the relevant publications report that beliefsof mental health providers do not differ from those of the population, or are even more negative�”.Positive provider views on mental illness and support for individual rights do not appear to protectpatients against stigma. Supportive provider attitude in relation to stigma of mental illness translatesinto support for collaborative treatment models in the community and a focus on recovery (Corrigan

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2002). These aspects may contribute to burnout, translate into poorer clinical care and contribute toendorsement of the use of more restrictive treatment choices.

In regards to the data on mental health professionals as stigma recipients, Shulze addresses thepresence of �“inaccurate or unflattering media stereotyping�” of psychiatrists, social and professionalperceptions of ineffective treatment interventions and the role of psychiatrist as agent of social control,magnified by public images of psychiatry, the presence of stigma in social relationships, the inequitabledistribution of healthcare resources and a general decline in the capacity of the profession to attractstudents. Shulze clarifies that, while psychiatrists and other mental health care providers may berecipients of stigmatizing attitudes and negative stereotypes, they still occupy places of relative privilegein society and are not victims of structural discrimination as a result of stigma.

Stuart, Arboleda Florez and Sartorius (2012) reproduce these findings and discuss the need to includemental health care providers as targets in anti stigma campaigns. They further comment on datashowing that �“the current biomedical orientation of the education model�” in psychiatry may contributeto entrenched negative attitudes toward people with mental illness and promote therapeutic nihilism.They emphasize the need for approaches focused on recovery and on �“learning positive and respectfulways of dealing with patients and their families�”. Byrne (2000), as quoted by Shulze, points out the�“absence of the subject stigma from British psychiatric textbooks, the dearth of social psychiatricresearch on stigma and a professional resistance to engaging in stigma reduction activities�”.

A variety of instruments have been designed and validated for the assessment of different variablesrelated to stigma, including the stigmatization by health care providers (Gaebel et al, 2011; Brohan et al2013; Clement et al 2012; Kassam et al 2012) and these will help assess variables in providers thatcontribute to stigma of mental illness. The current study will hopefully assist in understanding of thelived experience of treatment providers as part of their adaptation to working in the locked ward. Thiswill further understanding of complex processes involved in health, health care provision and stigma inthis specific context.

Another understudied aspect is related to the privileged group members�’ own experience of poor healthand the in group stigma, contributing to concealment and under representation of highly functioningrecovered individuals with a history of mental illness. This applies to mental health care providers and tothe medical profession in general, and is relevant for findings in a recent survey of Australian medicalworkforce (Beyond Blue 2012) documenting increased rates of suicidal thoughts and emotional distressin this group compared to the wider community. �“It was difficult to make the decision to be public abouthaving a severe psychiatric illness�…but privacy and reticence can kill. The problem with mental illness isthat so many who have it especially those in a position to change public attitudes, such as doctors,lawyers, politicians and military officers are reluctant to risk talking about mental illness, or seekinghelp for it. They are understandably frightened about professional and personal reprisals�” (Kay RedfieldJamison, quoted by Alison Gray, 2002).

Studies reviewed mental health care provider patient relationships and identified variables likecommunication skills, ability to empathize, collaborative approaches and validation of patient

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preferences as having positive impact on treatment engagement and outcomes (Gomez and Aillach,2013; Eveleigh et al 2012; Street and Elwyn, 2012; Jagosh, Steinert 2011). Research looking at patients�’experiences of involuntary psychiatric admission and treatment (Farnham and James 2012; Gostin 2008;Katsakou and Priebe 2007) discusses the development of feelings of shame and self contempt. Increasedself stigma and decreased empowerment seems to be associated with stigma stress, decreased selfesteem and decreased quality of life in the long term. The experience of coercion in hospital andcommunity settings has been the subject of inquiry (Olofsson and Jacobsson 2001; Rusch et al 2014;O�’Donoghue et al 2014; Steinert et al 2013; Link et al 2008; Quirck et al 2001; Bowers et al 2010) anddescribed an association with patients�’ perception of devaluation discrimination, increased exposure tostigmatization, low self esteem, compromised quality of life and increased symptoms in the long term.The presence of locked doors led to feelings of frustration and depression for patients, leading tomistrust, increased stigmatization and a sensation of separation from normality akin to a �“prisonexperience�” which, in wards relying on the presence of security guards and with decreased availability ofstaff to patients led tomore aggression and self harm (Cleary et al 2009; Bowers et al 2010). Assessmentof values and practice issues in locked inpatient wards (Cleary et al 2009; Chow and Priebe 2013)revealed a preoccupation with risk and less attention paid to ethical issues in patient care, accompaniedby high rates of prejudice and stigmatization. Other studies assessed single variables like patients�’expectations and experiences of safety in acute psychiatric wards (Stenhouse 2013; Muir Cochrane et al2013, Ascoli et al 2012) or patients�’ views on whether their involuntary admission was right or wrong(Katsakou et al 2012). Verghaeghe has looked at associative stigma in providers and implications forprofessionals and service users well being (2012) and found that the presence of stigma in mentalhealth care providers related to increased depersonalization, emotional exhaustion and decreased jobsatisfaction which in turn reflected in increased self stigma in patients. There is data indicating thatphysical aspects of the inpatient wards affect treatment outcomes and patient satisfaction (Middleboeet al 2001; Crowhurst and Bowers 2002). Other alert to the negative impact of the use of seclusion andrestraint in treatment approaches (Allen and Courier 2004; Sailas et al 2005). Marcussen et al exploredthe effect of services and stigma on quality of life for people with serious mental illness (2010) and theresults indicated that counselling services were associated with improved self esteem, positive selfimage and increased quality of life, while inpatient services increased the perceived stigma, with erosiveand long term effects on the self concept and the quality of life.

Available data provides robust evidence for a negative relationship between internalized stigma and theexperience of hope, self esteem and empowerment (Rosenfield 1997; Link et al 2001; Lysaker et al 2005;Hansson et al 2005; Thoits 2011; Lyons et al 2009; Wahl 1999; Livingston and Boyd 2010). McKenziedocumented increase in rates of suicide following discharge from a psychiatric hospital (2001) andresearch in recovery approaches documents positive long term outcomes derived from a mixture ofperson centered approaches, the use of narratives in treatment and a focus on maximizing well beingfor patients, with co creation of meaning for the experience of mental illness (Andresen et al 2003;Slade 2007, 2009, 2010; Harrow 2007; Longden 2010; Coleman 2011).

In summary, these studies indicate that mental health care providers often are active contributors to thestigma of mental illness affecting the quality of life of the patients they care for and that communication

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styles, services and treatment approaches in psychiatry have differential impact on short and long termtreatment outcomes. The limited number of qualitative studies and a high probability of in group stigmarelated to a traditional culture of medicine that discourages emotional communication have impededfull understanding of the nature of these stigmatizing attitudes. Given the significant deleterious impactof stigma on many layers of life for people with mental illness, it is highly important to engage with theirtreatment providers to facilitate a more beneficial interaction and to improve their overall quality of life.It is hoped that this study will facilitate such understandings and this might inform future reviews ofeducational and training models and changes in services and treatment approaches to reflect the livedexperience of those finding themselves inside current acute inpatient psychiatric wards.

2.5 Shifting paradigms in stigma research and in psychiatry

The limited achievement of hoped for positive outcomes from anti stigma campaigns of the last decadehas led to the articulation of a need for paradigm shift to guide future research. Given the magnitudeand the significance of the phenomenon of stigma associated to mental illness and the increasingawareness of its negative impacts on individuals and society by large, this is likely to remain a highpriority line of research. Stuart, Arboleda Florez and Sartorius have summarized the new paradigmsinforming future anti stigma programs (2012). These include: recognition of the multilayered culturespecific aspects of stigma, the need for direct contact and targeted interventions on a continuum basis,aiming at social inclusion and at removal of structural discrimination against people with mental illness,a shift of focus on the lived experiences and on direct contact with patients, reorganization of services toreflect a recovery oriented approach in treatment and development of meaning out of illness.

In regards to the practice of psychiatry, there is a rise in consumer driven dialogues of empowermentand recovery, increased evidence base for the benefit of psychotherapeutic approaches for all mentalillnesses, a growing discontent with the limited sustained positive results of pharmacotherapy, researchinto detrimental side effects of medication and human rights based activism against coercive treatmentapproaches in acute inpatient settings. Paradoxically, these aspects are compensated for by ongoinglimited funding and understaffed services, limited changes in training and educational models, increaseduse of involuntary and coercive treatment approaches and a trend suggestive of de institutionalization/re institutionalization of psychiatric patients, maintaining stigma and social exclusion.

Health practitioner health has become a subject of concerted attention for professional circles, unionsand regulatory boards and there seems to be a slow shift from monitoring towards genuine attempts tounderstand factors that erode personal health of practitioners and to facilitate communication and earlyinterventions. In psychiatry, this is even more relevant given that burnout and decreased job satisfactionaffect the capacity to empathize and this in turn affects quality of care (of self and others) and translatesin higher perceived stigmatization by patients. The parallel developments of service user groups andcritical psychiatry groups have enabled the beginning of informed dialogues between providers andpatients validating concerns and exploring collaborative, meaningful pathways to care in the field of

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psychiatry. There is a feeling of saturation of current data guiding application of knowledge in the fieldof psychiatric practice and in general anti stigma programs and increased receptivity to models of careindicative of improved outcomes (i.e. the Open Dialogue Model for the treatment of psychosis; traumainformed models of care in psychiatry, hearing voices and recovery support networks).

In summary, the literature reviewed indicates that training, resources and service related aspects as wellas individual traits in practitioners can significantly influence the treatment outcomes in psychiatry andthat many times, multiple layers of stigma operate as mediators in this process. The current study aimsto further exploration of lived experiences and adaptive processes involved in the acute involuntarytreatment settings of psychiatric locked wards. It is hoped that it will lead to theory construction inregards to stigma and its relation to health outcomes for all participants in a specific setting of acutepsychiatric treatment encounters.

2.6 Chapter Summary

The literature review has provided an overall update on relevant aspects of stigma, mental illness andpsychiatry and highlighted the need for integration of qualitative studies addressing the lived experienceof both patients and mental health care providers in our current understanding of the phenomenon.

The acute high security inpatient ward of modern psychiatric hospitals provides a space where thepower structure is clearly expressed through separation of staff and patients, therefore a space ofstructural and stigma discrimination. There is some evidence of increased perceived stigmatization bypatients in such settings, associated with impaired self esteem, increased self stigma and long termnegative outcomes on their quality of life and psycho social function. There is also evidence of increasedsuicide risk for patients in the first year after discharge from inpatient care. Little is known about thelived experience of staff members in such settings and on the impact of their adaptation to providingtreatment in locked wards.

Adaptation to being in the space of a locked ward is not without challenge for all involved and it is likelythat communication styles and self concepts are influenced by it. Understanding of the lived experienceof such adaptations will symbolically enlarge the dialogue between patients and mental health careproviders with readjustment of focus on meanings and context. This study has the potential tocontribute to development of theory in the fields of psychiatry and stigma of mental illness. The deeperunderstandings of real life experiences surrounding the crisis contact between patients and mentalhealth care providers in hospital settings could inspire service change to facilitate collaborative modelsof care, reduction in stigma, the creation of meaning for experiences of acute psychiatric distress,changed long term outcomes or patients and improved job satisfaction for mental health care providers.

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Chapter 3: METHODOLOGY

3.1 Introductory notes

�“I further suggest that certain flaws in modern medicine arise from its refusal of a hermeneutical selfunderstanding. In seeking to escape all interpretive subjectivity, medicine has threatened to expunge itsprimary subject the living, breathing, experiencing patient�” (Leder 1990).

The research in medicine is based on positivism and on the empirical model. It involves predominantlyquantitative methods in an attempt to maintain a stance of objectivity about disease entities in keepingwith a positivist perspective. Psychiatry has focused on the study of phenomena of consciousness andthe presumed underlying brain mechanisms responsible for clinical symptoms. In accordance to thezeitgeist of contemporary approaches in science and society, disease processes have treatable causes,governments fund research that produce results and practitioners provide treatments guided byavailable evidence based data. In this climate, it is important to remember Nagel�’s questions about thenature of �“otherness�” in �“What is it like to be a bat?�” (1974) and Thomas Kuhn�’s views of �“paradigmshifts�” and on the implicit subjectivity of scientific choice of one paradigm over another (Kuhn 1962).

Philosophers have highlighted the potential risk that one would not question research findings thatagree with the prevailing political and philosophical ideology of the time. In the area of stigma, researchfindings of the last 40 years, and more so the last two decades, have helped create a rich body of theory.In time the attention has shifted from the existence of individual differences (inclusive of unlikeableattributes) to understanding of the complex processes involved in linking those attributes to negativeviews, feelings and behaviors and to the prerequisite necessity and operation of power structures toenable stigmatization and exclusion of people considered �“undesirable�”.

The existence of mental illness as a �“real�” entity is less debated currently. The excessive use ofdiagnostic labels, the nihilism associated with diagnoses and long term use of medication, the nonquestioning of the �“medical model�” and the rise in involuntary treatment approaches infringing onhuman rights have been identified by some psychiatrists as indicators of a paradigm shift in the practiceof psychiatry. The data from research on stigma indicates that �“efforts to uncover genetic orneurophysiological mechanisms of mental illnesses and dissemination of this knowledge will nottranslate in improved quality of life and greater social inclusion of those affected�”. We are still far fromunderstanding the causes of most mental illnesses currently included in the DSM and acceptance of thistruth might assist in shifting research efforts towards improvement in services, development ofcollaborative models of care and promotion of increased social inclusion and equal life chances forpeople with psychiatric conditions.

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In regards to this study, the use of qualitative methods will enable deeper exploration of lived theseaspects from a lived experience perspective. The use of constructivist grounded theory methodology iswell suited to the study of processes in real life settings and application of specific analytical strategieswill increase the trustworthiness and quality of the results. The data emerging from this study will beincorporated in new theory integrating the fields of stigma and psychiatry and results will bedisseminated in talks, conferences and journal articles.

This chapter will discuss the research questions, goals and objectives, strategies and methods. Aspectsof techniques in data collection and analysis, ethics, projected timeframes and relevance of the studywill be summarily described.

3.2 Goals, objectives and research questions

Goals

This study comes as a result of review of literature on stigma and its relation to the practice ofpsychiatry and has been informed by literature gaps and theory dilemmas stemming from growingacknowledgment of significant contrasts between current discourse and clinical and psycho socialrealities in patients�’ lives. I have also been informed by emergent data on health practitioner health andidentified significant gaps in the exploration of how health care providers in the field of psychiatryexperience their work and how their shared humanity influences processes of stigma and treatmentoutcomes. The overall goals of the study are the increase in our understanding of the psychiatrictreatment encounter and its significance for stigma related experiences in patients and providers. In abroader sense, the goal is to contribute to reduction in stigma of mental illness and improvedsatisfaction and quality of life for patients and mental health care providers.

Objectives

The paradoxes described in current analyses of trends in psychiatric services and the multiple layers ofthe stigma phenomenon have identified the need for exploration of a �“shared space�” of adaptation forpatients and staff members in the real clinical encounter. The acute high security locked inpatient wardis often the space where people who experience severe symptoms are introduced to aspects ofpsychiatric care. Such spaces are defined by what can be conceptualized as �“structural stigma�”(Hannem, 2012), in that the expectation of risk and need for confinement guide a paternalistic approachwhere staff has �“freedom�” to go in and out and �“power�” to decide on the course of action for patientsand patients have the �“benefit�” of being cared for in a �“safe�” environment.

The objectives of this study are to increase our understanding of lived experiences of those who sharesuch space in the context of psychiatric treatment provision. Through exploration of the process ofadaptation and of the subjective experience of identity and interpersonal changes inherent in suchadaptations, the study hopes to deepen current insights in the process of stigma related to mentalillness and assist in collaborative development of theory guiding psychiatric practice.

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Research questions

The research questions are: How do people adapt to the locked ward environment in acute psychiatricinpatient settings? How does this adaptation relate to stigma and suicide risk? What implications doesthis have for inpatient psychiatric practice?

3.3 Methodological framework

This chapter will address issues of theoretical background and principles guiding the current study aswell as the author�’s values and beliefs.

3.3.1 Qualitative research paradigms

This study will adopt qualitative methods to enable understanding of the lived experience of participantsin the shared medical space of a locked inpatient psychiatric ward. Qualitative research in general aimsto explore issues, understand phenomena and answer question about how and why of decision makingprocesses providing insights and generating hypotheses for later quantitative research. According toCresswell (1994) �“ a qualitative study is defined as an inquiry process of understanding a social or humanproblem, based on building a complex, holistic picture, formed with words, reporting detailed views ofinformants, and conducted in a natural setting�”. The philosophical background involves a combination ofconstructivism, symbolic interactionism, critical theory and participatory/ cooperative paradigms.

Hannem (2012) emphasized the need to combine understandings drawn from constructivist studies likeGoffman�’s, such as insights into stigma as a function of interactions at individual levels with Foucault�’stheories about the production of truth, knowledge and power in society and stigma�’s reliance on powerand structural discrimination. She talks about �“structural stigma�” as �“assumptions embedded in socialpolicies and practice�” and refers to the concept of �“stigma consciousness�” (Pinel 2004) leading throughanticipation to development of changed identities and interactions.

The acute, high security inpatient locked ward of modern psychiatric practice represents a space ofstructural stigma and the study of adaptation to such a space through qualitative methods will allow indepth exploration of phenomena related to both psychiatry and stigma.

Michel Foucault (1926 1984) addressed the relationship between power and knowledge and wroteextensively on their use as forms of social control through institutions (�“Folie et deraison: histoire de lafolie a l�’age classique/ �“History of madness�” 1960). This is linked to Kuhn�’s theory of scientific paradigmsand of the lack of full objectivity in any scientific inquiry. The aspect of psychiatric power has beenaddressed in human rights discourses and led to development of legal frameworks to regulate practicesthat deprive individuals of their freedom for the purpose of involuntary psychiatric treatment.

While this aspect will not be addressed in the current study, the assessment of lived experiences ofpatients and staff members in this novel �“institutional�” setting will enable further exploration of theseand other related aspects.

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Researcher values

As a clinical psychiatrist, I am familiarized with phenomenological aspects of psychiatric assessments andwith the positivist approach to pharmacological treatment approaches, as well as with aspects related toinvoluntary and coercive treatment settings. The orientation of my practice is towards holistic andcollaborative approaches in assessment and treatment in outpatient settings, from a position ofvoluntary choice, with a focus on building a therapeutic relationship. My experience in qualitativeresearch has been minimal.

Qualitative methodology is suitable to the proposed study as it allows for in depth exploration of aspectsthat could not be assessed in quantitative studies such as the nuanced and complex lived experiencesof patients and providers/ the adaptive processes involved and how these affect the self andinteractional aspects/ exploration of constructed realities and meanings for stigma and psychiatry in aparticular context. It will allow direct contact with participants involved, lead to a more holistic, insiderview of a dynamic process and lead to theory creation.

The study will be accompanied by dissemination of knowledge and engagement with broad discussionswith experts in the fields of stigma and psychiatric practice.

3.4. Research strategy (constructivist grounded theory)

Review of different research strategies has led to the selection of constructivist grounded theory(Charmaz) as the method to guide data collection and analysis. This choice has considered the complexphenomena of the study�’s subject and the current theoretical conundrums requiring fresh approaches,with need for deeper experiential knowledge and creation of insightful hypotheses to explain thephenomenon of stigma in lived psychiatric settings.

Grounded theory is used to develop theory from data through complex processes of simultaneouscollection and analysis. There is a variety of approaches divergent from the original method described byGlaser and Strauss (1967); however constructivism remains a methodological imperative. Constructivismasserts that �“realities are social constructions of the mind and that there exist as many suchconstructions as there are individuals�” (Guba and Lincoln, 1985). From this perspective, the researchersare interacting with the participants and co construct meaning (Pidgeon & Henwood, 2003). Commoncharacteristics of grounded theory and variation between developments in practical applications havebeen identified: theoretical sensitivity, treatment of the literature, coding, diagramming and identifyingcore categories (Mills, Bonner and Francis 2006). Charmaz (2000, 2002, 2006) has taken groundedtheory away from its positivist roots into interpretive social science, showing how the resulting theory isconstructed rather than discovered (Willig and Rogers 2008). The theory is located in time, space andcontext and aimed at abstract understandings by seeing the researcher as part of the studiedphenomenon, integrating multiple views and connected values. Charmaz highlights that reality is coconstructed by researcher and participants through �“immersion in data�” in ways that aim to preserveraw narratives in the final outcome. The writing is regarded as strategy, combining analytical withevocative, literary style, bringing the experiential knowledge into emergent theory. Constructivist

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grounded theory validates insights from multiple perspectives in a given context and allows for creationof theory and links to action, beyond description of phenomena.

In the decision process about the study�’s methodology, I considered the use of interpretativephenomenological analysis (Smith 2009). This method focuses on phenomenological experiences of thesubject, building an analysis in a step wise fashion, comparing a case with others in a group. This processcan lead to thick �“descriptions�” that could be further making sense of relationships between themesthrough thematic mapping. However, this remains in the interpretative descriptive domain, without reconstruction of the process through additional analysis of data and generation of theory.

For the purpose of this study, aiming to understand the lived experiences of patients and staff membersin the interactive space of a locked inpatient psychiatric ward, constructivist grounded theory has beenselected. The review of existing theory in the fields of stigma and psychiatric practice has revealedsignificant gaps in understanding of lived experiences, the inclusion of mental health care providers instudies and the exploration of context specific, real world processes in the new �“institutional�” setting ofhigh security psychiatric wards. There seems to be a need for new understandings to guide practice instigma reduction approaches and the phenomenon of stigma has been identified as a complex anddetrimental aspect, negatively impacting many dimensions of treatment outcomes in psychiatry.Creation of theory is a significant objective of this study�’s methodological approach.

3.5 Research methods

This section will provide guides for the use of sampling, data collection and analysis in grounded theoryresearch and discuss techniques employed in this study.

General strategies in grounded theory methods as quoted by Willig and Stainton Rogers (2008) includethe simultaneous data collection and analysis; the use of constant comparative methods (�“data withdata, data with codes, codes with codes, codes with categories, category with category, category withconcept�”); development of emergent concepts and the engagement in an inductive abductive logic, bychecking emerging analysis with all possible theoretical explanations before constructing new theory.The specific guidelines describe processes for initial coding, focused coding, memo writing, theoreticalsampling, reaching saturation, theoretical sorting and integrating.

3.5.1 Sampling

The sampling methods in grounded theory research combine purposive with theoretical sampling.Purposive sampling involves a degree of diversity in subjects to reflect a variety of perspectives andmeanings. Theoretical sampling is aimed at keeping the analysis grounded in theory and makes the datafit the studied phenomenon. The size of the group studied is usually small and established throughtheoretical saturation, meaning �“that we see no new properties of the theoretical category orconnections between categories�”. The risk of remaining descriptive in analysis of data (rather thanconstructing theory) can be avoided by attaining �“a level of intimate familiarity with the studiedphenomenon�”, allowing for multiple perspective viewing (Lofland 1995 quoted by Willig 2008); byspecific coding techniques and by �“moving back and forth between data collection and refinement of

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abstract categories�” (Willig 2008). This calls for thoroughness, theoretical sensitivity and understandingof variation.

This study will explore experiences of staff members and recently discharged patients of a high securitylocked inpatient ward in a general public hospital in Brisbane, Queensland. Purposive sampling will beachieved by selecting equal numbers of nursing practitioners, consultant psychiatrists and patientsrecently discharged from the ward, aiming at some diversity of genders. The numbers of participants islikely to be small, in keeping with guidelines for qualitative studies probably two or three participantsfrom each category. The patients will be selected from recently discharged patients in the community,aiming to include those with a first experience of involuntary treatment in a locked psychiatric ward.

Potential participants will be informed that subsequent interviews may be necessary and they will beasked if they wished to be included in group interviews and be informed of the study�’s outcome.Theoretical sampling will occur after emergence of concepts and patterns, to assist in betterunderstanding of these. This might involve other potential participants, family members of patients,directors of services, experts in the field of stigma and suicide, psychiatric services and recovery. Allparticipants will be consulted as part of the process to check that emergent categories accuratelyrepresent their views and experiences and to integrate data in co constructed theory.

3.5.2 Data collection and analysis

Data for this study will be obtained through individual semi structured interviews, with open endedquestions and prompts to clarify, invite further elaboration or exploration of new areas arriving from theinterview situation.

The interviews will take between one and two hours and there may be a need for follow up interviews ifthe analysis of data requires clarification.

Participants will be asked the following questions addressing areas of general experience, adaptation tothe specific environment, impact on self, impact on interpersonal experiences, adaptation to thestructural stigma and adaptation to treatment in the locked ward environment:

1. General experiences: How is it like to be in a locked psychiatric ward? How does it feel like foryou to be in this setting?

2. Adaptation: How do you adapt to being in a locked psychiatric ward? How would you describesuch adaptation?

3. Impact on self: How does being in this setting affect your well being? How does it influence yourexperience of yourself? How does it impact on your view of yourself? How would you describethe way you feel about yourself when you are in this setting? Can you describe any particularlyintense experiences? How do you deal with that?

4. Impact on interpersonal aspects: How does being in here impact on your views of others? Howdoes it influence your views of life? How does it influence your relationships? Do you discussabout this with others? How does it feel like when you do?

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5. Adaptation to structural stigma: Do you think there is a difference between staff and patients?What about in a locked ward setting? How would you describe it? How do you adapt to thereality of separation between staff and patients in this setting?

6. Adaptation to treatment in the locked environment: How do you view the experience oftreatment in a locked ward environment? Can you elaborate? How do you adapt to thissituation? How does that impact on your view of psychiatry? What can be done differently?

The analysis of data will take place in parallel with data collection and will follow grounded theorystrategies, including line by line coding, focused coding, memos, charting and mapping attending tospecified techniques to increase rigor, through trustworthiness and authenticity.

3.6 Ethical considerations

Ethical aspects need to be addressed in the research process to ensure that research participants willnot be harmed by the process. The four principles of Beauchamp and Childress (1983) will beconsidered, namely autonomy and respects of individual rights, beneficence, non maleficence andjustice. This study will require ethical clearance from Griffith University and from the hospital selectedfor the study.

Information about the study will be provided to potential participants verbally and in writing at the timeof the first meeting. This will include information on the completely voluntary participation, the right towithdraw at any time and information that the interview will be recorded. A consent form will be signed.Issues of confidentiality will be discussed, including the use of de identified data (through use ofpseudonyms) and safe storage of participant data and contact lists. Participants will be informed thatthe decision to participate in the study will not affect in any way their treatment, their professionalstanding or relationships.

3.7 Progress to date and projected timeline

Up to this date, a narrative review of relevant literature was undertaken, including general reading andtopic related reading as suggested in qualitative study methodology.

The planned research phases to be achieved before 2016 are:

1. Obtain ethical clearance from Griffith University and studied public hospital (hopefully beforeApril 2014)

2. Recruit participants for the study3. Conduct interviews in parallel with transcription and initiation of data analysis in a to and from

process between data collection and analysis and checking for accuracy with each participant4. Reflect on findings and discuss with supervisors seeking feed back and guidance5. Apply theoretical sampling and conduct further interviews6. Reflect on findings, write summaries and develop preliminary theory

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7. Engage with participants in co creation of theory, discussing preferred ways for dissemination ofknowledge

8. Present findings locally, at conferences and through journal publications.9. Finalize dissertation after consultation with supervisors and submit thesis.

It is hoped that data collection and analysis will be completed by July 2015 with submission of thedissertation by mid 2016.

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