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A GROUNDED THEORY STUDY OF LIVED EXPERIENCE MENTAL
HEALTH PRACTITIONERS WITHIN THE WIDER WORKFORCE
by
Louise Catherine Byrne
Submitted in fulfilment of the requirements of the degree of
Doctor of Philosophy
Central Queensland University
Division of Higher Education
November 2013

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DECLARATION
I, Louise Catherine Byrne declare the research contained within this thesis is my
own original work and has not been submitted to any other institution or within any
other course of study. To the best of my knowledge, all cited materials have been
acknowledged within the text and included in the reference list.
Signed: Date: 15/11/2013

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COPYRIGHT STATEMENT
This thesis may be freely copied and distributed for private use and study, however,
no part of this thesis or the information contained therein may be included in or
referred to in publication without prior written permission of the author and/or any
reference fully acknowledged.
Signed: Date: 15/11/2013

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ABSTRACT
For contemporary mental health policy to realise its commitment to enhance
consumer participation and to promote the establishment of progressive mental
health service delivery, progressing robust and effective roles for people with a lived
experience of significant mental health challenges is essential. However, the
emergent lived experience workforce in Australia faces a vast range of barriers
including a lack of formal employment structures and awards, professional
defensiveness from non-lived experience colleagues and stigma and discrimination
in the workplace. Previously, there has been limited focused inquiry into the
experience of employment for lived experience practitioners. The aim of this
research is to provide a comprehensive exploration of the perspectives of lived
experience practitioners of their employment within the mental health workforce,
with a specific emphasis on factors that assist and inhibit the roles. Using a
grounded theory approach, in-depth semi-structured interviews and focus groups
were conducted. Lived experience practitioners employed in diverse roles within
government, non-government and lived experience-run services from metropolitan,
regional and rural settings across several states participated. Employing constant
comparative analysis, the substantive theory Risk to self, resulting from stigma (seen
and unseen) impacting on the LEP role emerged. Stigma, both seen and unseen was
found to underlie and impact upon the LEP experience. As a result lived experience
practitioners knowingly risked themselves and their own well-being within roles for
the benefit of current mental health consumers. When workplaces were perceived
as including greater supportive factors and were seen as less stigmatising, there was
a correspondingly lower risk to LEP and greater consumer benefits. Conversely
when more inhibiting factors existed, greater risk to LEP was posed and less

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consumer benefits occurred. For lived experience roles to evolve into full
potentiality; to the benefit of mental health consumers and the well-being of LEP,
the underlying stigma that is often ‘unseen’ must be recognised and addressed and
supportive factors enhanced. The findings of this study will inform the on-going
development of policy, service design and education of the professional and lived
experience workforce, by identifying existing barriers, providing a framework to
increase positive factors and ultimately contribute to a more collaborative, inclusive
and therefore effective workplace culture for lived experience practitioners.

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TABLE OF CONTENTS
DECLARATION..............................................................................................................................2
COPYRIGHT STATEMENT...........................................................................................................3
ABSTRACT .....................................................................................................................................4
TABLE OF CONTENTS .................................................................................................................6
LIST OF TABLES..........................................................................................................................11
LIST OF APPENDICES.................................................................................................................12
GLOSSARY OF TERMS...............................................................................................................13
ACKNOWLEDGMENTS ..............................................................................................................16
CHAPTER ONE: INTRODUCTION.................................................................................................18
PERSONAL EXPERIENCE ..........................................................................................................18
OVERVIEW OF THESIS ..............................................................................................................21
DEFINING THE LIVED EXPERIENCE WORKFORCE.............................................................22
CHAPTER TWO: BACKGROUND ..................................................................................................26
INTRODUCTION..........................................................................................................................26
SIGNIFICANCE ............................................................................................................................26
FROM DEINSTITUTIONALISATION TO RECOVERY .......................................................30
WHY LEP ARE A KEY FACET OF RECOVERY ..................................................................32
STRAUSSIAN GROUNDED THEORY AND LIMITED LITERATURE REVIEW ..............33
LIMITED INITIAL LITERATURE REVIEW ..............................................................................34
WORKFORCE DEVELOPMENT ............................................................................................36
CONCERNS REGARDING APPARENT EVOLUTION OF THE ROLES ............................42
STIGMA AND DISCRIMINATION.........................................................................................45
AIM ................................................................................................................................................49
CONCLUSION ..............................................................................................................................50
CHAPTER THREE: RESEARCH DESIGN ......................................................................................51
INTRODUCTION..........................................................................................................................51
RESEARCH DESIGN....................................................................................................................52
GROUNDED THEORY ............................................................................................................56
THEORETICAL SENSITIVITY AND THE ROLE OF THE RESEARCHER........................59
DATA COLLECTION...................................................................................................................60
ETHICS......................................................................................................................................60
PARTICIPANT RECRUITMENT.............................................................................................61
OPEN SAMPLING....................................................................................................................63
A LACK OF INDIGENOUS PARTICIPATION ......................................................................65
THEORETICAL SAMPLING...................................................................................................66
RELATIONAL AND VARIATIONAL SAMPLING ...............................................................67

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DISCRIMINATE SAMPLING..................................................................................................68
METHOD...................................................................................................................................69
DATA SATURATION ..............................................................................................................71
DATA ANALYSIS ........................................................................................................................74
CONSTANT COMPARITIVE ANALYSIS..............................................................................74
OPEN, AXIAL AND SELECTIVE CODING...........................................................................76
CONDITIONAL RELATIONSHIP GUIDE..............................................................................78
SELECTIVE CODING..............................................................................................................79
THE CENTRAL CATEGORY..................................................................................................80
SEPARATING BIAS.................................................................................................................81
MEMOS AND DIAGRAMS .....................................................................................................84
THE USE OF LITERATURE....................................................................................................86
THE ROLE OF GREY LITERATURE .....................................................................................86
EVALUATING THE QUALITY OF THE RESEARCH ..............................................................88
AUDITABILITY .......................................................................................................................88
CREDIBILITY...........................................................................................................................91
VERIFICATION........................................................................................................................93
TRANSFERABILITY................................................................................................................95
CONCLUSION ..............................................................................................................................97
CHAPTER 4: FINDINGS...................................................................................................................98
INTRODUCTION..........................................................................................................................98
OVERVIEW...................................................................................................................................99
PARTICIPANT DEMOGRAPHICS .....................................................................................104
THE CENTRAL CATEGORY DEFINED ..................................................................................108
EFFICACY AND EVOLUTION OF THE ROLE .......................................................................108
INHIBITING FACTORS .............................................................................................................111
MEDICAL MODEL - OVERVIEW OF THE MAJOR CONCEPT GROUPING ..................112
LEP WORKFORCE DEVELOPMENT ISSUES - OVERVIEW OF THE MAJOR CONCEPT
GROUPING .............................................................................................................................122
RURAL AND REGIONAL CHALLENGES - OVERVIEW OF THE MAJOR CONCEPT
GROUPING .............................................................................................................................141
SUPPORTIVE FACTORS ...........................................................................................................144
EVOLVE - OVERVIEW OF THE MAJOR CONCEPT GROUPING....................................144
PERSONAL TRAITS OF LEP - OVERVIEW OF THE MAJOR CONCEPT GROUPING..150
ORGANISATIONAL ENVIRONMENT - OVERVIEW OF THE MAJOR CONCEPT
GROUPING .............................................................................................................................155
UNSEEN STIGMA DEFINED ....................................................................................................168
STIGMA (SEEN AND UNSEEN) UNDERLIES LEP EXPERIENCE.......................................169
STIGMA/DISCRIMINATION - OVERVIEW OF THE SUB-CATEGORY .........................169

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TREATED DIFFERENTLY - OVERVIEW OF THE SUB-CATEGORY.............................175
RISK TO SELF/RECOVERY......................................................................................................180
RISK - OVERVIEW OF THE SUB-CATEGORY..................................................................181
SACRIFICE - OVERVIEW OF THE SUB-CATEGORY ......................................................190
LESS LEP RISK, GREATER CONSUMER AND LEP BENEFITS ..........................................194
POSITIVE IMPACTS ON LEP - OVERVIEW OF THE SUB-CATEGORY ........................195
BENEFITS TO CONSUMERS - OVERVIEW OF THE SUB-CATEGORY.........................199
CONCLUSION ............................................................................................................................209
CHAPTER FIVE: DISCUSSION.....................................................................................................210
INTRODUCTION........................................................................................................................210
THE SUBSTANTIVE THEORY .................................................................................................210
EFFICACY AND EVOLUTION OF THE ROLE .......................................................................214
INHIBITING FACTORS .............................................................................................................214
MEDICAL MODEL.....................................................................................................................214
RECOVERY CO-OPTED........................................................................................................219
RECOVERY DENIAL.............................................................................................................222
POOR RECOVERY UPTAKE / GOVERNMENT NEGATIVE FOR LEP ...........................223
NEED FOR CHANGE.............................................................................................................227
LEP WORKFORCE DEVELOPMENT ISSUES.........................................................................232
CAREER / EXTRA WORK.....................................................................................................232
CAPACITY..............................................................................................................................233
DISPARITY / RIGHT PERSON / EMERGENT MEANS NOBODY KNOWS ....................236
THEORY / DEFINE LIVED EXPERIENCE ..........................................................................238
CREDIBILITY.........................................................................................................................242
INFIGHTING...........................................................................................................................243
RURAL AND REGIONAL CHALLENGES...............................................................................244
TRANSPORT AND DISTANCE ............................................................................................245
LACK OF STAFF / LACK OF SERVICES ............................................................................245
NEED SUPPORT.....................................................................................................................246
SUPPORTIVE FACTORS ...........................................................................................................247
EVOLVE ......................................................................................................................................247
FUTURE VISIONS..................................................................................................................249
PERSONAL TRAITS OF LEP.....................................................................................................252
CURIOSITY.............................................................................................................................252
OUTSIDER..............................................................................................................................252
TENACITY / THICK SKIN / PASSION.................................................................................253
ORGANISATIONAL ENVIRONMENT ................................................................................254
GOOD RECOVERY UPTAKE ...............................................................................................255

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MANAGEMENT ATTITUDES / LEP VALUED...................................................................256
REASONABLE ACCOMMODATIONS................................................................................257
SUPERVISION........................................................................................................................258
LEP MANAGE OTHER LEP..................................................................................................259
SUPPORT IN NUMBERS.......................................................................................................260
STIGMA BOTH SEEN AND UNSEEN......................................................................................261
STIGMA AND DISCRIMINATION.......................................................................................261
STIGMA (SEEN AND UNSEEN)...........................................................................................264
SELF-STIGMA........................................................................................................................265
TREATED DIFFERENTLY/ STIGMA NORMAL ................................................................266
PROFESSIONAL ISOLATION ..............................................................................................268
TOKENISM .............................................................................................................................269
RISK TO SELF AND RECOVERY ............................................................................................270
RISK.........................................................................................................................................271
OUT AND PROUD .................................................................................................................272
FEAR TO DISCLOSE / OVERCOMPENSATE.....................................................................273
COMPROMISED / INVOLUNTARY.....................................................................................275
SACRIFICE .............................................................................................................................275
SELF CARE.............................................................................................................................276
LESS LEP RISK, GREATER CONSUMER AND LEP BENEFITS ..........................................277
POSITIVE IMPACTS ON LEP...............................................................................................277
SATISFY..................................................................................................................................278
STRESS / AMAZING / PERSONAL GROWTH....................................................................279
SOCIAL INCLUSION.............................................................................................................281
CONSUMER MOVEMENT....................................................................................................283
BENEFITS TO CONSUMERS................................................................................................284
COMMUNITY.........................................................................................................................285
ADVOCATE............................................................................................................................287
EMPATHETIC.........................................................................................................................287
HOPE.......................................................................................................................................288
BENEFITS TO BEING DIFFERENT / THINKING DIFFERENTLY ...................................289
INDIGENOUS HEALTH WORKERS....................................................................................290
REDUCING STIGMA.............................................................................................................291
PARTICIPANT AT THE CENTRE ........................................................................................291
CONCLUSION ............................................................................................................................292
CHAPTER SIX: RECOMMENDATIONS ......................................................................................293
INTRODUCTION........................................................................................................................293
BEST PRACTICE FRAMEWORK FOR EMPLOYING LEP................................................294

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RECOMMENDATIONS FOR LEP MOVEMENT, PEAK BODIES.....................................296
RECOMMENDATIONS FOR POLICY MAKERS AND GOVERNING BODIES ..............296
RECOMMENDATIONS FOR FUTURE RESEARCH ..........................................................298
RECOMMENDATIONS FOR EDUCATION AND TRAINING...........................................300
STRENGTHS AND LIMITATIONS...........................................................................................301
CONCLUSION.................................................................................................................................302
REFERENCES .............................................................................................................................304
APPENDICES ..................................................................................................................................320
APPENDIX 1. ETHICS CONFIRMATION............................................................................320
APPENDIX 2. INFORMATION SHEET................................................................................321
APPENDIX 3. DEMOGRAPHIC QUESTIONNAIRE...........................................................323
APPENDIX 4. CONSENT FORM...........................................................................................324

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LIST OF TABLES
FIGURE 1: BURDEN OF MENTAL ILLNESSES RELATIVE TO OTHER DISORDERS, IN
TERMS OF YEARS LOST AS A RESULT OF DISABILITY.........................................................27
FIGURE 2: EARLIER VERSION OF THE SUBSTANTIVE THEORY DIAGRAM ......................73
FIGURE 3: DATA CODING..............................................................................................................76
FIGURE 4: EARLIER ITERATION OF SUBSTANTIVE THEORY 2............................................83
FIGURE 5: USE OF DIAGRAMS IN MEMOS.................................................................................86
FIGURE 6: NVIVO SCREENSHOT..................................................................................................89
FIGURE 7: THE CENTRAL CATEGORY AND ALL OTHER CATEGORIES ...........................100
FIGURE 8: MORE SUPPORTIVE FACTORS CREATED LESS LEP RISK AND GREATER
CONSUMER AND LEP BENEFITS ...............................................................................................101
FIGURE 9: SUBSTANTIVE THEORY WITH LESS RISK INSET...............................................102
FIGURE 10: THE COMPREHENSIVE SUBSTANTIVE THEORY WITH ALL CONCEPTS ....103
FIGURE 11: NO. OF PARTICIPANTS PER STATE......................................................................105
FIGURE 12: DISTRICT CHARACTERISTICS..............................................................................106
FIGURE 13: TYPE OF ORGANISATION PRIMARY ROLE IS SITUATED WITHIN...............107
FIGURE 14: SCOPE OR FOCUS OF THE ROLE ..........................................................................108
FIGURE 15: EFFICACY AND EVOLUTION OF THE ROLE ......................................................110
FIGURE 16: INHIBITING FACTORS ............................................................................................111
FIGURE 17: LEP WORKFORCE DEVELOPMENT ISSUES........................................................123
FIGURE 18: RURAL AND REGIONAL CHALLENGES..............................................................141
FIGURE 19: SUPPORTIVE FACTORS ..........................................................................................144
FIGURE 20: PERSONAL TRAITS OF LEP ...................................................................................151
FIGURE 21: ORGANISATIONAL ENVIRONMENT....................................................................156
FIGURE 22: STIGMA (SEEN AND UNSEEN) UNDERLIES LEP EXPERIENCE......................169
FIGURE 23: TREATED DIFFERENTLY .......................................................................................176
FIGURE 24: RISK TO SELF/RECOVERY.....................................................................................181
FIGURE 25: SACRIFICE.................................................................................................................191
FIGURE 26: LESS LEP RISK, GREATER CONSUMER AND LEP BENEFITS ........................195
FIGURE 27: BENFITS TO CONSUMERS .....................................................................................200
FIGURE 28: SUBSTANTIVE THEORY DIAGRAM.....................................................................213
FIGURE 29: FAILURE OF MENTAL HEALTH REFORM ..........................................................229

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LIST OF APPENDICES
APPENDIX 1: ETHICS CONFIRMATION………………………….……………………………320
APPENDIX 2: INFORMATION SHEET…………………………………………………….……321
APPENDIX 3: DEMOGRAPHIC QUESTIONNAIRE…………………………………..………. .323
APPENDIX 4: CONSENT FORM………………………………………………………….….…..324

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GLOSSARY OF TERMS
Client A common term for people who access mental
health services
Clinician Non lived experience roles within the mental
health sector, employed to assist people
accessing government mental health services.
Typically someone who has trained in a health
discipline; psychiatrists, psychologists, mental
health nurses, occupational therapists, social
workers and similar
Consumer Consultant Lived experience practitioners primarily
employed within government services
Consumer Term used within this study to describe people
currently accessing mental health services
Consumer Movement Collective of people who have used or are
using mental health services, promoting the
human rights of other consumers
FaCHSIA Department of Families, Housing, Community
Services and Indigenous Affairs

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Government Organisation State government funded mental health
programs including in-patient facilities, acute
care and community care services. Emphasis
on acute services
Peers A term used to describe people accessing lived
experience run mental health services
Peer Workers Lived experiences practitioners primarily
employed within non-government
organisations
Service User Another common term for people who access
mental health services
Service Workers Non lived experience roles employed to assist
people accessing government or non-
government mental health services. Often
refers to non-government workers who may
not have trained in a health discipline
PHaMS Programs Federally funded program with many
programs across Australia. Funding mandates
the employment of lived experience
practitioners within programs. Major non-

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government employer of lived experience
practitioners
Lived Experience A lived experience of mental health difficulties,
service use and Recovery
Lived Experience Practitioner Any role that involves employment to work
specifically from a lived experience of
significant mental health difficulty, Recovery
from mental health difficulty and accessing
mental health services
Lived Experience Workforce Describes lived experience practitioners as a
collective
Non-Government Organisation Federally funded community based programs
and services run by not for profit organisations.
Emphasis on non-acute services

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ACKNOWLEDGMENTS
Firstly I would like to give my sincerest thanks to my supervisors, Professor Brenda
Happell and Professor Kerry Reid-Searl without whom this project would not have
been realised. I have been blessed in my supervisory team to have two learned and
greatly respected individuals commit with passion to my project for which I will
forever be deeply grateful. Beginning as student and teachers, along the way I feel I
have gained two very dear friends which is a far greater gift than the PhD alone.
Brenda’s experience as a long time ‘friend of consumer participation’ allowed me to
feel safe to undertake the journey in the first place and her enthusiastic and expert
guidance has been pivotal throughout. Arguably Australia’s most vocal and
effective ‘friend’ of lived experience, particularly in the academic sector, Brenda’s
persistence and belief in the movement has opened many doors that would have
otherwise stayed shut, the significance of which cannot be overstated. Brenda has
also been a great advocate of my work and no-one has ever been blessed with more
publicity and promotion as a result of one person. Kerry’s thorough grasp of
grounded theory and sincere interest in the topic provided essential knowledge and a
great ‘lay’ sounding board to ensure concepts were communicated effectively.
Kerry’s compassion also helped me keep my head up at times I felt I would
otherwise drown. From both extraordinary women, the on-going moral support,
willingness to give prompt, detailed feedback despite herculean workloads and a
dogged belief in my ability ultimately allowed me to complete the race. Thank you.
I would like to thank the participants for giving their time, enthusiasm and expert
knowledge to this study. Many researchers contributed their time and expertise,

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helping guide and inspire me in the process, a particular thanks belongs to Dr Judy
Applegarth for being incredibly generous with time and resources and helping a
fledgling find her wings. I would also like to thank Queensland Health and
CQUniversity for the co-funded industry scholarship that kept me fed and housed
for much of the project.
Last but by no means least I’d like to thank my amazing family. I struggled to
create a better life for many years and it was always, always, for all of you.
Especial thanks belong to my mum, Catherine O’Driscoll, who has stood beside me
on good days and bad, I could never repay the love and care you have given me but
I will try to pay it forward to the next generation of our family. I couldn’t have
achieved what I have without your love and belief in me. To my sister Rachael
Villiers who saved my life not once but twice, no words will ever suffice. Finally to
my furry and feathery little people, Loki, Bunnie and Iris, you keep me going every
day, giving me a reason to smile and nothing could be more valuable.

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CHAPTER ONE: INTRODUCTION
PERSONAL EXPERIENCE
Beginning this thesis was a way for me to start a conversation, with the hope that it
would spark many more. I couldn’t have imagined at that time how surprised I
would be by many of the findings and how profoundly privileged I would feel to
have an opportunity to represent my fellow lived experience practitioners, in what I
see as heroic efforts on the part of a few to the great benefit of many.
When I was 13 years old I first accessed a mental health service. At 14 I was given
my first serious psychiatric diagnosis and told that my expectations for my life must
change, and not for the better. Throughout my teens I was regularly admitted to the
geriatric ward of a small private hospital as there were no facilities for children in
my regional town, hundreds of kilometres from a major city. At 16 I left school and
my family, and moved to the capital of my state to try and build a new life that did
not focus on my illness as the dominant facet of my identity. I later went back to
school as a mature age student and was then accepted into a post-graduate diploma
in Media Studies without an undergraduate degree, on the basis of my mixed media
productions which I had been writing, directing and producing since my mid-teens.
I was successful with the post-grad and was then offered a place in the Masters
program. At first I wouldn’t even consider it. I was living in a punk share house
and had just turned 20 years old; I didn’t see myself as the kind of person who had a
Master’s degree. Luckily a friend convinced me I might as well do it; after all it
was only one more year. The subject of my research was media depictions of youth

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subculture – particularly punks. It was interesting to me because it was about my
people and it was my opportunity to challenge some of the stigma we faced. In
retrospect, it has parallels to my doctoral studies. I have often jokingly said I got
my Masters in Punk Rock and I’m now looking forward to having a PhD in being
crazy.
I worked, studied, played in bands and managed to avoid hospitalisation until my
mid-twenties when the walls once again came crashing down and I lost my full-time
role at a sandstone University, my partner of several years, the house we had bought
together, my friends and my life as I knew it. The return to wellness this time was
painstaking and for a long time looked hopeless. I did not have the wide-eyed
optimism of my youth and it took many years for me to be able to leave the house,
drive a car and eventually think about work again.
I had always been passionate about working from my lived experience, initially in
youth services with kids who were a bit lost – the same way I had been. So when
my psychiatrist at the time talked to me about lived experience mental health roles I
was immediately interested. At that stage there were no lived experience roles in
my area so I made an appointment with the manager of the district mental health
service. I have always had the gift of the gab and it did not dessert me on this
occasion. Some left over money was found and I became the first paid lived
experience practitioner in the district. Over the years since, I have worked in a
variety of lived experience roles in government, non-government and tertiary
settings, for child and youth and adult services. I have had a wide variety of
receptions from my non lived experience colleagues, some welcoming and

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accepting, others openly hostile.
Throughout it all I remained convinced of the common sense value of lived
experience roles. I believe that if someone had walked with me from a lived
experience perspective I would have found my way to a meaningful life much
sooner. Failing that, if the people around me who had experienced mental health
problems had talked to me about it I wouldn’t have felt so alone and strange. I
could’ve realised sooner that I wasn’t an aberration but someone having a very
common and normal experience. I would’ve had hope instead of believing that my
life would always be limited by my ‘illness’. I could’ve learned from them what
had gotten them through and developed my own strategies.
This to me is the greatest mistake in our efforts to reduce the impact of mental
health difficulties, that we have the capacity to allow people to stay connected to
their sense of self and belonging, to offer them thousands of innovative and proven
methods of taking control of their own mental wellbeing and healing and yet as a
society we simply refuse to speak. I believe it is our silence that is allowing mental
health issues to become an epidemic. I feel strongly that the ultimate answer lies in
all the brave souls who are willing to stand up and be counted. Those who are
prepared to say loudly and proudly that they have experienced mental health
challenges and can show that they have risen above it. This includes all people,
both lived experience practitioners and any individual who has the courage to speak
about and share what is so often tragically, left unsaid. It is up to those people
willing to speak to start as many conversations as possible. These conversations
need to spread like wildfire to eventually allow mental health to become a usual

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topic of inter-personal communication like any other health issue, to help change the
way people experience mental health difficulties and stem the tide. I see lived
experience practitioners as the public face of this movement with the capacity to
begin countless conversations in both their personal and professional lives.
OVERVIEW OF THESIS
This chapter has provided an introduction to what inspired the work and the unique
perspective of the researcher, the significance of the work to the broader context of
mental health in Australia as well as the aims and objectives of the research.
Chapter 2 provides an historical context to the study by situating it within important
events of the past few decades before leading into an explanation and definition of
terms and a limited literature review in line with the grounded theory approach. The
literature review focuses on two key areas; workforce development and stigma and
discrimination, to identify gaps in the existing literature and guide early
development of the study. Chapter 3 justifies the choice of epistemology,
theoretical perspective and methodology before detailing the grounded theory
research design. Constant comparative analysis was employed throughout data
collection and analysis and these processes are described in detail within chapter 3.
Chapter 4 presents the categories of the study strongly supported by quotes to give
voice to the participants and assist the credibility of the research. Chapter 5
introduces relevant literature in a discussion of the findings and positions this study
within the broader context. The final chapter presents a summary of
recommendations as well as a conclusion to the thesis. The recommendations focus
on optimal development opportunities and conditions for the efficacy and evolution
of the lived experience role within Australia.

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DEFINING THE LIVED EXPERIENCE WORKFORCE
It is imperative that the language used to describe the emergent lived experience
workforce contributes to promoting the unique and necessarily different perspective
of LEP from that of traditional service roles (Mead & MacNeil, 2004). Similarly, it
is imperative that language employed by lived experience practitioners challenges
the medical-model understanding of consumer experience that many find
stigmatising and damaging (Our Consumer Place, 2010).
The use of mental health service specific language and systems promotes the image
of those with mental health difficulties as ‘other’ or substantially different than,
those who do not experience mental health difficulties (Deegan, 2007) This in turn
promotes over-identification with diagnosis and illness, ultimately encouraging
individuals to experience a loss of self that severely damages their personhood and
negatively impacts on Recovery (Mead & MacNeil, 2005). Language that
pathologises mental health difficulty contributes to the stigma that pervades all
aspects of a person’s life (Mead & MacNeil, 2005; Moxham, 2003).
It is therefore essential that lived experience practitioners embrace and promote an
alternative worldview (Mead & MacNeil, 2004), in which people learn to think and
speak about mental health challenges in new, non-medical ways (Mead & MacNeil,
2004). Contribution to the development of alternative, non-medical language is also
consistent with the early anti-psychiatry work of R.D. Laing (Marshall, 1994) in
which mental illness itself is considered a disputed concept (Boyers & Orrill, 1971).
Since the rise of Recovery orientated service delivery, the terms mental wellness

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and mental un-wellness have become common alternatives to mental illness and
mentally ill. These terms are employed within literature informed by lived
experience (Copeland & Mead, 2004) and Recovery-orientated practice material
(Happell, Cowin, Roper, Foster, & McMaster, 2008). Within this study, the terms
mental illness and mental un-wellness will at times be substituted for mental health
challenge or mental health difficulty. The assertion behind this use of language is
that phrasing a period of mental un-wellness as a difficulty or challenge describes it
as a situation that can be overcome. It also clearly differentiates between the
person and the challenge they are facing, as well as separating the experience of
mental health difficulty from the rest of their life, making it clear it is only an aspect
of their life and not the defining characteristic. These concepts are informed by the
writings of peer support theorists (Mead & MacNeil, 2004) and by contemporary
consumer ideology (Our Consumer Place, 2010b). The terminology is also
consistent with recent research (Byrne, Happell, Welch, & Moxham, 2012) and
current Government policy, in which terms like, “…people with a lived experience
of mental health difficulties” (National Mental Health Commission, 2012, p. 4)
replace the term ‘consumer’.
People are employed to work from the perspective of their lived experience of
mental health difficulty in diverse roles encompassing systems advocacy, one-on-
one support, training, education and research (National Mental Health Consumer
and Carer Forum, 2010). These roles can be situated within private, government
and non-government mental health services, in tertiary institutions and within
government health departments (National Mental Health Consumer and Carer
Forum, 2010). Terminology is inconsistent throughout the literature and includes

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references to: Peers; (National Mental Health Consumer & Carer Forum, 2010)
Consumers; (B. Happell & C. Roper, 2009) Users; (World Health Organization,
2010); Service users (Mental Health Commision, 2005) and; Survivors (Wallcraft,
2003). Much literature cites a preference for lived experience practitioners to have
familiarity accessing mental health services (Disability Services Queensland, 2009;
Mental Health Commision, 2005; National Mental Health Consumer and Carer
Forum, 2010; World Health Organization, 2010). This is justified by the fact that
lived experience connections often include a strong emphasis on the unique
experience of mental health service use and the shared understanding of the
ramifications of service use on individuals (Disability Services Queensland, 2009).
Some authors (Bennetts, 2009) employ broader interpretations of lived experience
qualification, describing persons who have experienced ‘mental illness’: without
specifying a predilection for that person to have accessed mental health services.
The question of what constitutes ‘lived experience’ appears in the literature (Byrne,
Roper, & Happell, 2012; O'Hagan, McKee, & Priest, 2009) and will be addressed
within this study during the Discussion chapter.
Further sources (Craze Lateral Solutions, 2010) highlight the lack of consensus on
what constitutes a mental health consumer. Use of the term consumer is historically
contentious (Pinches, 1998) and remains so (Craze Lateral Solutions, 2010; Happell,
2008; Our Consumer Place, 2010). Inconsistency and lack of consensus suggests
further research into the purposeful employment of language is required (Craze
Lateral Solutions, 2010).
Differences in terminology aside, all sources agree that the key qualification for

25. 25
employment within the lived experience workforce is a, “…lived experience and the
unique understanding of what mental health consumers…are experiencing”
(National Mental Health Consumer and Carer Forum, 2010, p. 8). Due to the lack
of consensus and the universally required qualification of lived experience, it is
deemed appropriate to employ the term lived experience practitioner (LEP) to
represent the vast array of roles and alternate terms, irrespective of position
description or where roles are situated within the sector. The term, lived experience
workforce (LEW) will be utilised to describe the workforce as an entity.
Within this study, the terms consumer and service user will be reserved to describe
those persons currently accessing mental health services and not those persons
employed to work from their lived experience. The unique terminology of the
project is important as it presents an opportunity for innovation in the use of
language within lived experience led mental health research. Any controversy that
may inadvertently be generated by these terms contributes to on-going discussion of
the issues and highlights the need for further research in the area.
Finally, the term Recovery as devised and developed by the consumer movement
will be capitalised throughout this study. This is to differentiate the philosophy of
Recovery from concepts of recovery that are medically informed and contribute to
the reclaiming of Recovery concepts by the consumer movement.

26. 26
CHAPTER TWO: BACKGROUND
INTRODUCTION
The previous chapter outlined the significance of the study, highlighting the
prevalence of mental health issues within the community and consequently, the
urgent need for mental health reform to be impactful. The significance of this study
was introduced as a means of contributing to the much needed reform. This chapter
provides the context of the study by outlining the historical background to the study,
outlining the important role of lived experience practitioners in progressing the
reform agenda and by defining the lived experience workforce. This definition
includes consideration of the language currently employed within the sector in
relation to mental health issues and lived experience work and an explanation of the
language employed within this study. To situate this study within a grounded theory
framework, a brief explanation of the role of literature in grounded theory research
is provided. This is followed by a limited literature review exploring issues of
workforce development and stigma and discrimination pertinent to this emergent
workforce.
SIGNIFICANCE
Nearly half of all Australians will experience a mental illness (Rhodes et al., 2014).
Mental ‘disorders’ are cited as contributing 13% of the total burden of disease and
injury in this country (Begg et al., 2007) and 24% of years lost as a result of
disability (Begg et al., 2007) (see figure 1). In addition to the emotional impacts on

27. 27
people experiencing mental health issues as well as their families and friends, there
are also significant financial costs. Government and health insurer spending on the
provision of mental health services totalling $4.7 billion in the year 2006-2007 alone
(Department of Health and Ageing, 2009) and lost productivity estimated between
$10 and $15 billion per year (Department of Health and Ageing, 2009).
FIGURE 1: BURDEN OF MENTAL ILLNESSES RELATIVE TO OTHER DISORDERS, IN TERMS OF YEARS LOST
AS A RESULT OF DISABILITY
The prevalence and corresponding impacts of mental health issues would suggest
the importance of effective and respectful service provision to consumers of mental
health services. However, while the need to improve the rights of consumers was
acknowledged 20 years ago as a result of the Burdekin Report (Burdekin, 1993)

28. 28
contemporary authors attest that “…mental health services are still emerging from a
history of suppression of human rights and abuse of people with mental illness”
(National Mental Health Consumer and Carer Forum, 2010, p. 43) with recent
government reform acknowledging that more needs to be done (Australian
Government, 2012).
National policy in Australia has supported consumer participation in mental health
service delivery since 1992 (Commonwealth of Australia, 1992). Successive
Government plans, policies and standards (Australian Government, 2010; Australian
Health Ministers, 2003; Commonwealth of Australia, 1998, 2009; Department of
Health and Ageing, 2009), increasingly emphasise the requirement to actively
involve consumers (Australian Government, 2010). The employment of consumers
is identified as a priority area (Commonwealth of Australia, 2009). However, recent
research illustrates the mental health sector struggling to meaningfully collaborate
with the lived experience perspective of consumers (Bennetts, 2009; Browne &
Hemsley, 2008; Happell, 2009; National Mental Health Consumer and Carer Forum,
2010). It is acknowledged that the consumer and carer workforce “…has not been
systematically developed or implemented in Australia compared with other parts of
the world.” (Commonwealth of Australia, 2009, p. 51).
The consumer movement has parallels to other liberation movements as a struggle
for equal rights (Mead & MacNeil, 2004; World Health Organization, 2010).
Empowerment of service users is a widely accepted strategy to progress this agenda
(National Mental Health Consumer and Carer Forum, 2010; World Health
Organization, 2010). Empowerment is also considered a key strategy in promotion

29. 29
of health and reduction of disease (World Health Organization, 2010), situating
empowerment of consumers as an issue of international significance. This focus has
led to a growing evidence base highlighting the essential role of lived experience
practitioners (LEP) within the mental health sector (Bennetts, 2009; Browne &
Hemsley, 2008; Disability Services Queensland, 2009; Happell & Roper, 2007;
Hussain, 2010).
Widespread acknowledgment of the usefulness of lived experience roles exists
throughout the literature. With better outcomes, increased quality of life for
consumers and reduction of service costs frequently cited (Bennetts, 2009;
Commonwealth of Australia, 2009; Disability Services Queensland, 2009; Happell
& Roper, 2007; Hussain, 2010; Mental Health Commision, 2005; National Advisory
Council on Mental Health, 2009; National Mental Health Consumer and Carer
Forum, 2010; World Health Organization, 2010). However major barriers to the
development of the lived experience workforce are also identified (Bennetts, 2009;
Craze Lateral Solutions, 2010; Disability Services Queensland, 2009; Happell &
Roper, 2009; National Mental Health Consumer and Carer Forum, 2010).
The need for lived experience workforce (LEW) development in Australia was
highlighted in 2009 and 2010 in a range of studies (Bennetts, 2009; Community
Services Health and Industry Skills Council, 2010; Craze Lateral Solutions, 2010;
Happell, 2009; National Mental Health Consumer and Carer Forum, 2010;
Sierakowski, 2010).
Many factors are currently impacting on the evolution and development of the LEW,

30. 30
including lack of acceptance from non-lived experience colleagues within the
workplace (Bennetts, 2009; National Mental Health Consumer and Carer Forum,
2010; Roper & Happell, 2007). This is compounded by a critical need for
workforce development including; articulated position descriptions, career pathways,
access to training, appropriate support and supervision and, national standards for
remuneration (Bennetts, 2009; Community Services Health and Industry Skills
Council, 2010; Mental Health Commision, 2005; National Mental Health Consumer
and Carer Forum, 2010). The need for leadership from within the LEW is also
frequently raised (Bennetts, 2009; Craze Lateral Solutions, 2010; Gordon, 2005;
Happell & Roper, 2006).
While all studies acknowledge the incidence of stigma, isolation and lack of
acceptance in the workplace (Bennetts, 2009; Community Services Health and
Industry Skills Council, 2010; Craze Lateral Solutions, 2010; National Mental
Health Consumer and Carer Forum, 2010; Sierakowski, 2010) no focused inquiry
into the issues and how they impact on the effectiveness of the role within the wider
workforce has previously occurred. This is an obvious gap in the development of
the lived experience workforce that will disallow LEP to evolve to full potential.
FROM DEINSTITUTIONALISATION TO RECOVERY
Deinstitutionalisation in Australia began on a large scale in the mid 1990’s with the
purpose of moving away from the institutionalisation of people with mental health
issues, integrating them instead into the wider community (National Advisory
Council on Mental Health, 2009). In the decades since, Government policy has
increasingly insisted on the move from a medical model of care, towards Recovery

31. 31
orientation in service delivery (Department of Health and Ageing, 2010). Recovery
itself grew from the experiences of mental health consumers and the consumer
movement (Anthony, 1993) challenging the long-held medical assertion that mental
illness was chronic and unremitting (Ramon, Healy, & Reouf, 2007).
Overwhelmingly, sources attest that the process of deinstitutionalisation has
experienced many challenges and is still in need of refinement. This is largely
attributed to insufficient government funding (Hickie, Groom, McGorry, Davenport,
& Luscombe, 2005; Mendoza et al., 2013) and a lack of government commitment to
the community based system that was intended to replace institutionalised care
(Whiteford & Buckingham, 2005). As a result the intention of deinstitutionalisation
has not eventuated (National Advisory Council on Mental Health, 2009) and many
consumers are unable to access mental health services (National Advisory Council
on Mental Health, 2009).
Recent media releases and reports highlight the further disparity between
metropolitan, and regional and rural access to mental health services and support
services (McGorry, 2010, February 6; Shadow Minister for Mental Health, 2010,
December 13). These claims are confirmed by relevant Government reporting
(Australian Government, 2012; Kreger & Hunter, 2005) and rural health
organisations (Health Consumers of Rural and Remote Australia Inc, 2009; National
Rural Health Alliance Inc, 2010). Further, in regional areas it is purported that
pervasive stigma, lack of supports and essential infrastructure has left consumers
fundamentally institutionalised, albeit without the physical structure of the
institution (Moxham, 2003). Lack of autonomy, personal choice and the
diminishing of individual identity to their diagnosis (Moxham, 2003) all contribute

32. 32
to mental health consumers experiencing ‘metaphorical institutionalisation’
(Moxham, 2003).
While the gradual shift from a medical model of care towards Recovery-focused
service delivery is on-going, important advancements have occurred. A number of
publications outline and explicate the features and processes of Recovery-based
support for organisations to implement (Caldwell, Sclafani, Swarbrick, & Piren,
2010; Department of Health and Ageing, 2013a, 2013b; Happell et al., 2008; Mental
Health Coordinating Council, 2008). Industry-based Recovery training has
generally been well received (Crowe, Deane, Oades, Caputi, & Morland, 2006).
The development of consumer-focused higher education (Bradshaw & Moxham,
2005; Byrne, Happell, et al., 2012; Byrne, Happell, Welch, & Moxham, 2013;
Happell et al., 2008), assists graduates to understand the needs and expectations of
contemporary health consumers (Wynaden, 2010). However, the uptake of
Recovery concepts is still emergent (Ramon et al., 2007) with the process of change
described as, “…frustratingly slow and incremental” (National Advisory Council on
Mental Health, 2009, p. 9).
WHY LEP ARE A KEY FACET OF RECOVERY
While mental health policy writers and service systems initially engaged with
Recovery concepts in the 1990’s, (Ramon et al., 2007) consumers had begun
recording and reporting Recovery as early as 1838 (Wallcraft, 2003). The consumer
movement has more than a century of collective experience with and resistance to
medically dominant ideology to help guide the next wave of mental health reform.
Without the essential perspective provided by lived experience practitioners, the

33. 33
mental health system is likely to continue co-opting the language of Recovery and
applying it to what are essentially, medically orientated processes and philosophies
(Glover, 2005; Mental Health Drugs and Regions Division, 2011). What is
currently considered evidence-based practice also needs to be reconsidered from the
perspective of the Recovery approach, as developed and envisaged by the consumer
movement (Gordon & Ellis, 2013) to ensure Recovery outcomes are truly being met.
As Recovery orientation is focused on the rights of consumers to direct their own
care and to participate in the policy, design and delivery of mental health services
(Browne & Hemsley, 2008; Happell & Roper, 2002; Roper & Happell, 2007) it
could be queried whether a Recovery-based system of mental health service delivery
can eventuate, until and unless lived experience practitioners are entrenched and
established as valued members across that sector and acknowledged as leaders in the
field of Recovery application (Gordon, 2005; O'Hagan, 2009).
STRAUSSIAN GROUNDED THEORY AND LIMITED LITERATURE
REVIEW
While Glaser (1998) clearly advocates for researchers to abstain from review of
literature in the early stages of research, other branches of grounded theory
acknowledge and even encourage some researcher familiarity with the literature due
to the benefits of theoretical sensitivity and the insight that engenders (Charmaz,
2006; Strauss & Corbin, 1990). However, caution is recommended in the early
stages of research as too focused and extensive an inquiry into the literature is seen
to stifle or constrain theory development (Strauss & Corbin, 1990). It is suggested
that a “…limited and purposive preliminary review” (Birks & Mills, 2011, p. 22) is
of most benefit to the research as it enhances theoretical sensitivity (Strauss &

34. 34
Corbin, 1990) and allows for an understanding of what already exists and
consequently identifies any gaps in the literature (Birks & Mills, 2011).
In order to enhance validity, the research design of this study has followed a Strauss
and Corbin grounded theory approach and has not included or utilised any other
iterations. As a result, in the early stages of this study, a limited but directed review
of literature was conducted. In line with Straussian grounded theory, after data
collection and analysis was complete, a more comprehensive examination of
literature was then utilised to confirm the substantive theory (Strauss & Corbin,
1990). In addition to the deliberately limited and focused literature review
presented in the following section, the significant examination of literature is
presented in the Discussion Chapter in direct relationship to the findings of the
research.
In order to ensure the initial review of literature was limited but purposive, did not
stifle theory development and was most relevant to the site of study, the focus was
intentionally placed on Australian literature.
LIMITED INITIAL LITERATURE REVIEW
Initially, an examination of the current LEW (lived experience workforce) in
Australia was conducted to situate the research within a larger body of knowledge
and identify gaps. Searches were conducted on relevant government websites and
within academic search engines including Ebscohost, Scopus and Academic Search
Complete. This provided sparse results, further suggesting the need for this research,

35. 35
particularly within Australia. Early themes common within peer-reviewed and grey
literature related to lack of sufficient planning and resources and the incidence of
stigma in the work lives of LEP.
Consequently, the scope of the initial limited review encompasses two key concepts.
Firstly; issues of ‘workforce development’ in Australia, including the types of roles,
remuneration, training and support. This contributed to gaining theoretical
sensitivity as to the broad picture of the employment experience, social processes
and workplace interactions involved in being a mental health lived experience
practitioner.
Secondly, the incidence and impact of stigma within workplace culture is
considered in relation to identifying some of the factors that facilitate or inhibit lived
experience practice and to assist in contextualising the significance of the study
within relevant theoretical literature and contemporary workforce development.
For auditability, the initial review is presented as it was written at that early stage of
the study. This also aids verifiability as the inclusion of more refined concepts and
contemporary readings sourced after data collection was complete would suggest
the Straussian approach was not correctly employed when it has been carefully
followed.
As the scope of the review was limited to comply with the Strauss and Corbin
grounded theory research design, much attention was focused on what were then
relatively recent documents pertaining to the development of the lived experience

36. 36
workforce in Australia, with use of international literature limited to providing a
caution in relation to advancements that seem to have been made. Comprehensive
inclusion of international literature is presented in Chapter 5, as directed by the
Straussian approach.
WORKFORCE DEVELOPMENT
Recently, the lived experience workforce has grown exponentially, with greater
numbers and a vast diversity of roles. A peer workforce study lists 16 different job
titles (Community Services Health and Industry Skills Council, 2010). This influx
of workers and the creation of many new positions is an attempt to address the
requirement for lived experience contribution. However, it has also created new
challenges. Consumer groups and researchers have released a plethora of material
espousing the urgent need for: articulated position descriptions; appropriate and
accredited training; adequate, regulated remuneration and; inclusive and supportive
workplaces (Bennetts, 2009; B. Happell & C. Roper, 2009; National Mental Health
Consumer and Carer Forum, 2010; Sierakowski, 2010).
In 2010 Queensland Health released guidelines for the remuneration of lived
experience practitioners (Queensland Mental Health Directorate, 2010a) as well as a
Mental Health Consumer and Carers Workforce Pathway (Queensland Mental
Health Directorate, 2010b). The pathway provides clear and consistent position
descriptions, supervision requirements and professional development for lived
experience workers within Queensland Health. More recently, a Paid Participation
Policy has been launched to ensure that lived experience practitioners employed in
representative roles by the National Mental Health Commission are fairly and

37. 37
consistently remunerated (National Mental Health Commission, 2012). At the time
of the initial literature review, Queensland was the only state to include discussion
of lived experience run services it its mental health plan. (O'Hagan et al., 2009).
The Western Australian government now makes mention of the need to value lived
experience workers as part of a sustainable workforce in their state plan for mental
health reform but doesn’t detail how that will be achieved and doesn’t make
mention of lived experience run services (Government of Western Australia, 2012).
National standards for remuneration of lived experience practitioners including
minimum wage, superannuation and other working conditions have not been
formalised, leaving LEP vulnerable to on-going exploitation (National Mental
Health Consumer and Carer Forum, 2010; Stewart, Watson, Montague, &
Stevenson, 2008).
Currently, accredited lived experience training is not available in this country
(National Mental Health Consumer and Carer Forum, 2010). Before the issue of
lived experience training can be meaningfully addressed, the scope of the vastly
divergent roles must first be assessed. Without research into the scope of lived
experience roles, meaningful training is unlikely to be developed. The need for
accreditation has received some attention, with the Department of Employment,
Education and Workforce Relations (DEEWR) funding national scoping studies,
consultation and the development of national competencies to inform the creation of
training for lived experience workers (Community Services Health and Industry
Skills Council, 2010). As evidenced in recent research, there is tension around the
development of training and competencies for the LEW (Bennetts, 2009). Possibly
as a consequence of this tension, the first of a series of National Mental Health Peer

38. 38
Workforce Forums was held in February 2011, to address key issues in relation to
the developing LEW, with a particular focus on training and competencies
(Community Mental Health Australia, National Mental Health Consumer and Carer
Forum, & Community Services Health and Industry Skills Council, 2010).
Overseas trainers are periodically brought to Australia, including ‘Intentional Peer
Support’ training (Shery Mead Consulting, 2011).
Another initiative, to provide $2.9 million in funding to train consumers was
announced at a national level several years ago (Minister for Health and Ageing,
2010, August 11) however, details of how that money was distributed has not been
forthcoming. Predominantly academically-trained mental health professionals could
be expected to respond positively to a trained lived experience workforce. Without
the development of role-specific, accredited training, the lived experience role is
unlikely to achieve wide scale acceptance from the wider mental health profession
and its potential scope may not be realised.
The need for research led by LEP is evident across the literature (Bennetts, 2009;
Lammers & Happell, 2003; National Mental Health Consumer & Carer Forum,
2010; O'Hagan et al., 2009; Our Consumer Place, 2010b; Roper & Happell, 2007).
Some authors attest lived experience roles must be underpinned and informed by a
substantial body of academic work “…strongly grounded in people’s lived
experiences” (Bennetts, 2009, p. 23). However, there is currently a paucity of
research in the area (Bennetts, 2009).
Strong leadership from within the consumer movement is another commonly

39. 39
identified need (Bennetts, 2009; Craze Lateral Solutions, 2010; National Mental
Health Consumer and Carer Forum, 2010). However, the literature suggests
leadership struggles impacting negatively on workforce development. The National
Mental Health Consumer and Carer Forum (NMHCCF) identify themselves as the
“…national voice for consumers” (National Mental Health Consumer and Carer
Forum, 2010, p. 44), while the logo for the Craze Lateral Solutions (2010) National
Scoping Project claims to be, ‘seeking a national voice’ for consumers.
The Craze scoping study (Craze Lateral Solutions, 2010) was funded by the
Department of Health and Ageing. The same department responsible for the 4th
National Mental Health Plan so critically referred to within the NMHCCF position
paper (2010). The implicit message contained in the Craze study (2010), is that
well-regarded national leadership doesn’t currently exist. Significantly, although
the NMHCCF authors (2010) would undoubtedly have been aware of the scoping
study (Craze Lateral Solutions, 2010), no reference is made to its role in their vision
for an improved workforce. Instead, reference is made to a “National Mental Health
Workforce Strategy” (National Mental Health Consumer and Carer Forum, 2010, pp.
13-14) to be developed as an integral component of the implementation of the 4th
National Mental Health Plan.
By focusing their strategy on the implementation of the 4th
National Mental Health
Plan, the NMHCCF could be seen to shirk the leadership issue. The onus is placed
on the same bodies; government departments and mental health services; that are
identified elsewhere in the paper as barriers to the development of the workforce
(National Mental Health Consumer and Carer Forum, 2010). The fact that the

40. 40
NMHCCF is calling for action and leadership from the very parties that have
consistently failed to take action, does seem to indicate a stronger form of leadership
needs to emerge. Either way, these events suggest discord and the possibility of in-
fighting within the already small consumer movement. This issue also appears in
the data and will be explored further in Chapters 4 and 5.
For the benefits of the lived experience workforce to be realised, the expanding
workforce needs to be appropriately structured and supported by non-lived
experience colleagues and the service system itself (Bennetts, 2009; Craze Lateral
Solutions, 2010; National Mental Health Consumer and Carer Forum, 2010). It
could be argued this creates a Catch-22 situation. Significantly, lived experience
workers are broadly identified by the National Mental Health Consumer and Carer
Forum (2010) as agents of change, but the position paper also states that they are
employed within “…a workplace culture that cannot respond to change.” (National
Mental Health Consumer and Carer Forum, 2010, p. 9).
Many authors agree that lived experience support improves mental health outcomes
for current service users (Bennetts, 2009; Disability Services Queensland, 2009;
National Mental Health Consumer and Carer Forum, 2010; World Health
Organization, 2010). However, the empirical evidence base outlining the benefits of
lived experience perspective is acknowledged as emergent (Disability Services
Queensland, 2009).
Across the literature, the majority of evidence in favour of lived experience
perspective derives from overseas sources. Within the Australian literature, a great

41. 41
deal of the evidence referenced is comprised of government policies stating the
usefulness of lived experience roles and the need to further develop the workforce
(Bennetts, 2009; Disability Services Queensland, 2009; National Mental Health
Consumer and Carer Forum, 2010). This evidence is severely undermined by the
lack of tangible outcomes or actions as a result of these policies (National Mental
Health Consumer and Carer Forum, 2010). The need for a stronger evidence base to
promote the potential benefits of lived experience perspective will be paramount to
the ongoing sustainability of this emergent workforce.
Significant lived experience led research into the LEP workforce in Australia
(Bennetts, 2009) adopted a qualitative, Participatory Action Research (PAR)
approach and demonstrated rigorous research design and processes, with an
emphasis on lived experience ownership of the project. The report gives a
comprehensive overview of the existing barriers for LEP. However, the scope of
the research did not allow in-depth investigation of any of the emerging issues. The
National Mental Health Consumer and Carer Forum (2010) is a major consumer
organization in Australia and their paper is the largest published statement on lived
experience workforce issues at a national level. This report also raised grave
concerns about the impact of a broad range of issues, including stigma, on the
emergent LEW. Similarly, detailed investigation of the issues was not possible in
the scope of the work. The recommendations relating to workplace culture and
stigma arising from these key documents and from the substantial body of recent
literature with similar findings (Browne & Hemsley, 2008; Goodwin & Happell,
2006; Happell, 2008, 2009; Happell & Roper, 2006a; National Mental Health
Consumer and Carer Forum, 2010; Roper & Happell, 2007; Sierakowski, 2010) has

42. 42
now been explored in greater depth within this thesis.
CONCERNS REGARDING APPARENT EVOLUTION OF THE ROLES
In New Zealand in 2005, lived experience workforce development was comparable
to the current state of activity in Australia in 2010 (Mental Health Commission,
2005). The LEW in New Zealand was similarly supported by government policy
(Minister of Health, 2005) however the Mental Health Commission’s (2005)
development strategy reflected similar concerns to key Australian work, the
NMHCCF position paper (2010) and the PAR project conducted by Bennetts (2009).
All cited; lack of consistent or clearly articulated roles, ad hoc or non-existent
training and career pathways, discrimination within the workplace, lack of funding
and failure on the part of respective National Governments to action the promises
made in successive mental health policies.
Significantly, the Mental Health Commission recognized that “…all of the major
workforce documents over the last decade have mentioned the need for service user
workforce development but the Maori, Pacific, and child and youth workforces have
been given far greater priority” (The Mental Health Commission, 2005, p. 7).
Search findings suggest this trend has continued. The Mental Health Workforce
Development Programme (MHWD) is identified within the document as primarily
responsible for the continuing development of the lived experience workforce.
Searches of the MHWD and other prominent New Zealand based mental health
websites yield scarce findings of further work in the area. This concurs with
contemporary researchers claiming a lack of evidence that further development has
occurred (O'Hagan, et al., 2009). Additionally, growth that has occurred is

43. 43
described as slow and driven by “…district level funders rather than policy”
(O'Hagan, et al., 2009, p. 32). This despite the publication of a workforce
development strategy clearly articulating the objectives and actions required for
systemic LEW development and a vision to see lived experience workers as a
powerful voice and widely accepted by 2010 (Mental Health Commision, 2005). It
is therefore conceivable that similar goals articulated by the NMHCCF (2010) may
also disappear into obscurity without the development of strong acceptance and
interest from non-lived experience mental health workers. This is unlikely to be
achieved without credible research into the existing and potential scope of lived
experience roles. It could be surmised that without qualitative, lived experience led
research to support strategies and enforce policy, a similar outcome could eventuate
in Australia.
The inclusion of the workforce needs analysis from New Zealand (Mental Health
Commission, 2005), responds to themes within the Australian literature claiming
advanced development of the lived experience workforce within New Zealand, the
United Kingdom and America (Disability Services Queensland, 2009). The Mental
Health Commission’s development strategy (2005) is also referenced by the ‘Real
Lives’ project (Bennetts, 2009). New Zealand literature was favoured over
documents from the UK and United States due to the proximity of Australia to New
Zealand, the prevalence of cultural exchange and perceived cultural similarities
(O'Hagan, 2004). This is not intended to provide an international comparison or
begin to comprehensively consider the potential challenges of the LEW broadly.
This issue emerged as part of the reading of Australian literature, adding to the
theoretical sensitivity of the researcher and therefore has been included. In line with

44. 44
Straussian grounded theory, on the whole a deliberate decision was made not to
examine international literature at this time and risk constraining the development of
theory. As stated previously, consideration of the international context is provided
in Chapter 5.
Much work is irrefutably required to create a cohesive workforce with acceptable
working conditions and this is well represented within the literature. The need for
further research is also highlighted. To a lesser degree, the issues of language and
leadership are also raised and require further investigation. Neglected within the
reviewed literature is the potentiality of lived experience roles. Several authors
espouse the benefits of expanding lived experience roles into other sectors including
employment services and considerably greater representation in training and
research institutions (Bennetts, 2009; National Mental Health Consumer and Carer
Forum, 2010). However there is a gap in the literature with regards to the potential
scope of practice for lived experience workers. Scope of practice is never
specifically identified as an area of future development. Without an exploration of
the potential scope of practice, lived experience roles are likely to remain much as
they exist currently. Roles that were developed within an unsupportive and
unfriendly workplace culture (Bennetts, 2009; National Mental Health Consumer
and Carer Forum, 2010). Significant, dedicated research may begin to aid the
acceptance of LEP by non-LEP colleagues and ultimately contribute to the unique
benefits to consumers that LEP can provide. However, research must also be
effectively and widely disseminated in a range of forms if the prevailing culture is to
be affected.

45. 45
STIGMA AND DISCRIMINATION
In the limited literature available at the time of beginning the study, stigma emerged
as a common theme. Stigma as experienced by mental health consumers is
debilitating and pervades people’s experiences in the community and within mental
health and mainstream health care (Bradshaw & Moxham, 2005). The issue of
stigma for LEP stems from societal attitudes towards mental illness itself “…the
profoundness of the stigma that surrounds mental illness, means that this disability
stands worldwide as being one of the most stigmatised human conditions”
(Moxham, 2003. p. 4). The issue of lived experience workers being stigmatised
within the workplace and the parallel need to successfully integrate LEP into the
wider mental health sector is pressing.
A growing body of literature supports the benefits of utilising lived experience roles
(Bennetts, 2009; Disability Services Queensland, 2009; B. Happell & C. Roper,
2009; Mental Health Commision, 2005; National Advisory Council on Mental
Health, 2009; National Mental Health Consumer and Carer Forum, 2010; Roper &
Happell, 2007; World Health Organization, 2010). Underpinning the literature is
“…a strong recognition that peers with a lived experience can provide support in
ways that mental health workers cannot” (Disability Services Queensland, 2009, p.
3). When lived experience roles are employed, research demonstrates better
Recovery focus and commitment from non-lived experience workers (Bradstreet &
Pratt, 2010) and better outcomes for consumers and services (Hussain, 2010;
National Advisory Council on Mental Health, 2009). However the literature also
identifies diverse and significant barriers to the development of the lived experience
workforce (Bennetts, 2009; Disability Services Queensland, 2009; Happell, 2008;

46. 46
Mental Health Commision, 2005; National Mental Health Consumer and Carer
Forum, 2010) including professional defensiveness and lack of acceptance from
non-LEP colleagues (Goodwin & Happell, 2006, 2008). Without the support of the
wider mental health system, lived experience roles cannot evolve into full
potentiality (Bennetts, 2009; Craze Lateral Solutions, 2010; Happell, 2009; National
Mental Health Consumer and Carer Forum, 2010).
Recent research in Australia reports that lived experience roles were well-regarded
(Health Workforce Australia, 2013) with one large government health system cited
as seeking to employ lived experience practitioners in every team as an
acknowledgment of the unique LEP skill set, particularly in relation to promoting
Recovery-orientated service delivery (Health Workforce Australia, 2013). However,
on the whole, lived experience roles in Australia are being developed within a
largely unsupportive workplace culture (Bennetts, 2009; Happell, 2009; National
Mental Health Consumer and Carer Forum, 2010; Roper & Happell, 2007;
Sierakowski, 2010). The Government’s latest Mental Health Plan acknowledges
that the unique lived experience skill set is under-utilised and often unrecognised
(Department of Health and Ageing, 2009). Lived experience groups contend that
evolution and efficacy of the roles will not be realised until and unless LEP
positions are supported as part of a considered and methodical improvement to
workplace culture in the mental health sector (National Mental Health Consumer
and Carer Forum, 2010). Systemic resistance to the inclusion of lived experience
perspective, significantly: a lack of acceptance and support within the workplace,
contributes to the high rate of burn-out for lived experience workers (Bennetts, 2009;
National Mental Health Consumer and Carer Forum, 2010). As stated in Bennetts

47. 47
(2009), “Little has been done to address this issue in a targeted way, and it continues
to have a detrimental impact on the personal safety of CWF1
members and the work
that could be achieved if support was in place” (p. 36).
Persisting attitudinal barriers (Bennetts, 2009; Browne & Hemsley, 2008; Goodwin
& Happell, 2006b; Happell, 2008; Happell, 2009; Roper & Happell, 2007) create a
culture of division between lived experience practitioners and their non-lived
experience colleagues (Bennetts, 2009). These themes echo the sentiments of the
National Mental Health Consumer and Carer Forum (2010) in their recent position
statement. It is certainly not the first time attitudinal barriers have been identified
for the LEW. Often cited studies from the mid 2000’s (Lammers & Happell, 2003,
2004; (Middleton, Stanton, & Renouf, 2004) demonstrated that progress had been
made towards acceptance of LEP in the mental health workforce. However, results
were not consistent, with authors identifying enduring stigma and discrimination as
major barriers (Middleton, Stanton, & Renouf, 2004). Despite government
insistence on consumer participation for both individual’s in their Recovery
journeys and as part of a systemic approach (Department of Health and Ageing,
2013b) service providers have been reported as reluctant to develop meaningful
opportunities for lived experience participation (Lammers & Happell, 2003). The
same issues discussed in these studies; of stigma and lack of acceptance by non-
lived experience colleagues remain dominant themes in later work (Bennetts, 2009;
Browne & Hemsley, 2008; Happell, 2009; Happell & Roper, 2009; National Mental
Health Consumer and Carer Forum, 2010; Roper & Happell, 2007). It could be
surmised from this reiteration of themes that unless in-depth exploration of these
1
The term ‘Consumer Workforce’ is used within this report and abbreviated to ‘CWF’ (Bennetts,
2009)

48. 48
issues is undertaken, the identified attitudinal barriers are likely to remain.
Other authors attest issues of professional defensiveness (Roper & Happell, 2007)
and reticence from mental health service professionals to create more equal
relationships with consumers (Happell, 2009) contribute to LEP working in “…a
culture where stigma is the norm and discrimination or abuses are tolerated”
(National Mental Health Consumer and Carer Forum, 2010, p. 21). Some
researchers have articulated important frameworks of participation (Happell &
Roper, 2007). However, the barriers to meaningful acceptance of the roles require
further investigation and targeted implementation of strategies (Happell, 2009).
Currently, there is no focused inquiry or research into issues of stigma, exclusion or
effectiveness of LEP broadly within the mental health workplace. Certainly there is
a paucity of research into the experiences of regional and rural LEP. The need to
understand the unique experiences of all LEP including regional and rural LEP adds
to the significance of this study. While the total burden of disease and injury
increases by 26.5% in remote populations as compared with major cities (Begg, et
al., 2007). Access to mental health services is found to be 25% less in rural and
remote areas (National Rural Health Alliance Inc, 2010). Despite these disparities,
authors of a 2005 report into rural and remote mental health (Kreger & Hunter, 2005)
were unable to locate specific rural and remote mental health policies, apart from
the Tasmanian Rural Mental Health Plan (Kreger & Hunter, 2005). Significantly,
the Tasmanian Rural Mental Health Plan found that, “…adoption of consumer and
carer participation policy…were not widely achieved” (Kreger & Hunter, 2005, p.
23). At the time of the initial literature review, more recent government

49. 49
publications dealing specifically with the issue of regional and rural mental health
could not be located, suggesting it is an area that requires further investigation,
particularly as pertains to consumer participation and the experiences of regional
and rural LEP.
This study will contribute significantly to understanding the overall issue of
workplace effectiveness of LEP roles through in-depth exploration of the work
experiences of LEP. This exploration will facilitate the development of strategies to
create a more collaborative workplace culture, ultimately allowing the LEP to
evolve into full potentiality. The inclusion of regional and rural experiences in
addition to metropolitan perspectives allows an as yet unheard population the
opportunity to tell their story.
AIM
The aim of this research is to explore the perspectives of lived experience
practitioners regarding their employment within the wider mental health workforce
in Australia. In order to achieve this aim the following objectives were identified:
• Explore and describe the employment experience, social processes, and
workplace interactions involved in being a mental health lived experience
practitioner;
• Identify factors that facilitate or inhibit the LEP role within wider mental
health settings;
• Generate a substantive theory, which describes the current experience of
being a lived experience practitioner in Australia;
• Place this in the context of the relevant theoretical literature and

50. 50
contemporary workforce development;
• Provide solution-focused recommendations for the on-going efficacy and
evolution of this emergent workforce within the mental health setting.
CONCLUSION
This chapter outlined the background of the study and defined the lived experience
workforce. This was followed by a brief explanation of the grounded theory
approach to literature review. A limited literature review, in line with grounded
theory then contextualised the study in relation to ‘gaps in the literature,’ with a
specific focus on workforce development and issues of stigma and discrimination.
The following chapter will explain the research design and detail the methods
utilised to achieve the research aims.

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CHAPTER THREE: RESEARCH DESIGN
INTRODUCTION
As the first chapter introduced, the need for ongoing reform within mental health
services is urgent, with mental illness impacting on a vast majority of the population.
Chapter 2 then ascertained the significance and validity of this study by
contextualising it within the history of mental health reform in this country and
outlining the value of lived experience roles in promoting the Recovery approach, as
well as briefly describing current barriers to the efficacy of the roles. This chapter
focuses on the research design, beginning with a brief discussion of the
epistemological position underpinning the research and a rationale for the use of
Grounded Theory as the methodology. A detailed report then explains how
Grounded Theory methodology was utilised within the study. Initially, a brief
discussion of the use of theoretical sensitivity explains the role of the researcher
within the study. This is followed by reporting of the data collection process
including; gaining ethical approval, participant recruitment and sampling for
interviews and reaching the point of saturation. Data analysis is explained in detail
including the use of constant comparative analysis, open and axial coding, use of the
conditional relationship guide, as well as selective coding and the role of memos,
diagrams and literature. The quality of the research is demonstrated according to
the criteria of auditability, credibility and verification before a brief conclusion.

52. 52
RESEARCH DESIGN
Underpinning research are theories of knowledge or fundamental beliefs about
“…what it means to know” (Crotty, 1998, p. 10). These theories of knowledge are
referred to as epistemologies. The theoretical perspective is the philosophical
position chosen for the study and is determined by the epistemology (Crotty, 1998).
The theoretical perspective in turn contextualises and informs a researcher’s choice
of methodology (Greckhamer & Koro-Ljungberg, 2005). The methodology itself
comprises all aspects of the research strategy (Crotty, 1998). The methods chosen to
collect and analyse data should be consistent with the methodology and adhere to
established practices or traditions (Greckhamer & Koro-Ljungberg, 2005).
When research demonstrates transparent and appropriate links from the
epistemology to the theoretical perspective and then to the methodology, it is judged
to be consistent with a particular epistemology, which is regarded by scholars as an
important underpinning of credible research (Greckhamer & Koro-Ljungberg, 2005).
For these reasons, the following section extrapolates the assumptions and affiliations
informing this research.
The epistemology of this study is social constructionism, an interpretation of
constructionism that focuses on socially constructed meaning. Broadly,
constructionism accepts that objects exist without interaction with the human mind
but, asserts that meaning requires interaction between consciousness and those pre-
existing objects and is interpretative (Charmaz, 2006). Social constructionism
further positions meaning-making within historical, cultural and social contexts
(Crotty, 1998). This epistemology reasons that the views of both researcher and

53. 53
participants are constructed by the experiences of their lives and the cultural or
social ‘lens’ through which they view the world (Charmaz, 2006).
The theoretical perspective informing constructionist grounded theory is Symbolic
Interactionism (Fain, 2004). Symbolic Interactionism developed from the Chicago
School of sociology (Marshall, 1994) and was heavily influenced by the work of
George Herbert Mead (Jirojwong, Johnson, & Welch, 2011). Mead theorised that
our identities are shaped and constructed by our interplay and interactions within
society (Crotty, 1998). Although in the 1970’s symbolic interactionism was
popularly considered to have become uncritical, neglecting issues of power and
social structure (Crotty, 1998; Marshall, 1994), the constructionist underpinning
seeks to uncover power imbalance and hidden positions (Charmaz, 2006). Symbolic
interactionism is perfectly aligned to the ideas of social constructionism,
acknowledging that meaning develops through interaction between people within
the shared environment (Jirojwong et al., 2011). This also makes it aptly suited for
this study as the area of enquiry relates to the work experiences of LEP within the
mental health workforce in Australia with an emphasis on how LEP perceive their
interaction with non-LEP colleagues. Charmaz (2006) also emphasises the
interpretative nature of constructionist grounded theory and the potential role for
uncovering the voices of unheard minorities within more powerful groups. This
further suggested the relevance to this study after the brief initial literature review
identified stigma as a pertinent issue for LEP.
Grounded theory is a methodology that developed from Symbolic Interactionism
(Crotty, 1998) and was originated by sociologists Barney Glaser and Anselm

54. 54
Strauss in the 1960’s during research on patients with chronic illness (Elliot &
Lazenbatt, 2005). Some contemporary critics describe grounded theory as an
eroded method (Greckhamer & Koro-Ljungberg, 2005), identifying Glaser and
Strauss as objectivist in orientation (Greckhamer & Koro-Ljungberg, 2005).
Conversely other sources contest this assertion, identifying grounded theory as
emerging from Symbolic Interactionism (Jirojwong et al., 2011; Roberts & Taylor,
2002) which is epistemologically constructionist (Charmaz, 2006). Glaser did have
quantitative training and aesthetics (Strauss & Corbin, 1990) lending some credence
to the objectivist accusations. However; Strauss studied at the University of
Chicago, birthplace of the Chicago School of sociology (Marshall, 1994) and was
influenced by Symbolic Interactionism and the work of Mead (Strauss & Corbin,
1990). Additionally, while the language of grounded theory does utilise some of
the terminology of quantitative research (Roberts & Taylor, 2002) it does not
presume to test pre-existing theories (Roberts & Taylor, 2002). Grounded theory is
interpretive research (Roberts & Taylor, 2002) and although later theorists are more
transparent regarding a Constructionist epistemology (Charmaz, 2005) it is
questionable whether grounded theory was ever intended or envisaged as an
Objectivist form of inquiry. Certainly, there is contention around whether Strauss
and Corbin’s iteration of grounded theory is constructionist or objectivist (Annells,
2003).
For the purposes of this research, the methods of Strauss and Corbin will be utilised
within a Social Constructionist epistemology. This is justified by the constructionist
elements of grounded theory (Charmaz, 2005) being repeatedly linked to its roots in
the Chicago school (Charmaz, 2005) and Strauss’ role in that influence (Strauss &

55. 55
Corbin, 1990). Additionally, Strauss and Corbin contend grounded theory is a
means of interpreting reality (Strauss & Corbin, 1990) which is the goal of
constructionist theory, not of determining reality which would be the goal of
objectivist or positivist research (Crotty, 1998). As there are no overt references to
epistemology in the work of Strauss and Corbin (Greckhamer & Koro-Ljungberg,
2005) this is a point open for debate and will continue to be interpreted in divergent
ways. Regardless of the interpreted epistemology of Strauss and Corbin’s approach
to grounded theory, adaption is common (Annells, 2003), further justifying its use in
a constructionist research study.
Grounded theory is commonly utilised when little is known about an area (Roberts
& Taylor, 2002). As identified in earlier sections, there is a paucity of research into
the work experiences of LEP and as such this study was ideally suited to grounded
theory. Grounded theory data is focused on the perspectives of participants (Glaser
& Strauss, 1967). This emphasis of being true to the participants’ perspectives and
ensuring that their voices are heard by rigorously re-examining data and employing
on-going verification (Strauss & Corbin, 1990) further supported the choice for this
under-represented population.
Grounded theory was considered a more appropriate choice for this study than other
qualitative methodologies due to the choice of symbolic interactionism as the
theoretical perspective (Jirojwong et al., 2011). Additionally, within grounded
theory the personal experience of the researcher as an active member of the LEP
brought theoretical sensitivity to the research and could be seen as a positive and
utilised to add depth to analysis (Glaser, 1978). Other symbolic interactionist

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methodologies were deemed less appropriate as an ethnographic approach would
have instead required the researcher to treat the familiar as unfamiliar (Crotty, 1998)
and phenomenology would have further required the setting aside of all pre-existing
ways of viewing (Husserl, 1931), negating the personal experience of the researcher.
GROUNDED THEORY
Grounded theory is a form of qualitative research, distinctive in its systematic
methods of data collection and analysis (Strauss & Corbin, 1990) which enable the
development of substantive theory based on practices of; rigor, verification and
reproducibility (Strauss & Corbin, 1990). These practices are deemed to provide
empirical data to enhance the validity of results (Charmaz, 2005). Grounded theory
is described as a middle-range theory (Annells, 2003) meaning it is neither a
working hypothesis based on everyday experiences, nor a grand theory that
discounts context, action and interaction (Glaser & Strauss, 1967).
Significantly within grounded theory “…one begins with an area of study and what
is relevant to that area is allowed to emerge” (Strauss & Corbin, 1990, p. 23).
Therefore, grounded theorists do not begin their enquiry with a theory to be tested
instead allowing the data to generate hypotheses (Roberts & Taylor, 2002).
Hypotheses are reached after following a process of constant comparison (Roberts
& Taylor, 2002) in which a recurrent cycle of data collection and analysis,
informing further sampling of data is enacted (Elliot & Lazenbatt, 2005). In this
cycle, data collection is staggered to allow time for analysis, from which
information previously unknown to the researcher will emerge (Annells, 2003).

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This information allows for theoretical sampling to direct the next phase of data
collection. Theoretical sampling occurs when the information derived from one
cycle of data collection and analysis directs the next iteration of data collection and
consequently, further sampling (Elliot & Lazenbatt, 2005). This process continues
until ‘saturation’ has been reached. Saturation describes the point at which no new
categories or codes of relevance to the study are emerging from the data (Roberts &
Taylor, 2002). Once saturation is reached a substantive or grounded theory can be
developed that is firmly based in, and representative of the data (Strauss & Corbin,
1990).
It is an expectation of grounded theory that in-depth exploration and examination of
the perspective of participants will allow the identification of problems and
consequently the generation of practical solutions (Roberts & Taylor, 2002). From
this perspective, it was envisaged that a grounded theory study into the work
experiences of LEP would allow for the generation of a substantive theory of the
factors that assist and inhibit this emergent section of the mental health workforce,
thus contributing to possible directions for improvement, enhancement and solutions
(Roberts & Taylor, 2002). Considering the urgent need for workforce development
identified in the brief literature review prior to commencing the study, this form of
solution focused research has practical application and industry relevance.
Constructionist grounded theory has also been linked to issues of social justice
(Charmaz, 2005). Specifically, “Grounded theory studies can show how inequalities
are played out at interactional and organizational levels” (Charmaz, 2005, p. 512).
As one of the objectives of this study was to identify factors that facilitate or inhibit