Graeme Browne Thesis - QUT ePrints
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Short Description
Thesis submitted in fulfilment of the requirements of the degree of Doctor people with a mental illness, boarding hous&n...
Description
Queensland University of Technology
Centre for Health Research School of Nursing
The Impact of Housing on people with Schizophrenia
Graeme Browne RN (RGN, RPN), ADCHN, B.Sc., MPhil.
Thesis submitted in fulfilment of the requirements of the degree of Doctor of Philosophy
September 2004
Insert the actual certificate signed by the panel recommending acceptance in place of this page
KEY WORDS
Consumers of mental health services Schizophrenia Housing Boarding houses Own home Grounded theory Admission rates Social support.
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ABSTRACT
Mental health services in Australia (and in most western countries) have undergone considerable changes in the past 20 years. These changes have included the closing or downsizing of the old tertiary institutions and a move towards community treatment of people with a mental illness (consumers). Consumers no longer live in hospitals; as a consequence housing has become an important aspect of their lives. Research has demonstrated that when consumers live in good quality housing of their own choosing they report improved quality of life, more satisfying supportive social relationships, and have fewer admissions. People with schizophrenia are the largest psychiatric diagnostic group treated by the public health system in Australia. As a result of their illness people with schizophrenia often have difficulty in maintaining reasonable quality accommodation and supportive social relationships. A review of the available literature on housing options indicates that, for people with a mental illness, boarding houses are the least desirable type of community housing and that living in their own home is the most desirable. These were the two types of housing chosen for the study. Aims of the study This study aimed to explore the impact of housing on the mental health of people with schizophrenia.
v
Study Design Stage 1 For the initial stage of the project archival data was used to investigate the relationship between types of accommodation and illness patterns of people with schizophrenia. The hypotheses for stage 1 of the project were: 1.
Admission rates will be significantly different for people with schizophrenia who are discharged to a private home when compared to those discharged to a boarding house.
2.
Length of stay in hospital will not be significantly different for people with schizophrenia discharged to a private home when compared to those discharged to a boarding house.
3.
Symptoms, as measured by scores on HoNOS scale, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house.
4.
The level of functioning, measured using an LSP 16, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house.
Inclusion Criteria The subjects included were between 18 and 65 years of age and had a principal diagnosis of schizophrenia. Findings Findings indicate that people with schizophrenia are more likely to be admitted to hospital if discharged to a boarding house. Surprisingly, results also indicated that while there were no differences in the level of psychiatric symptoms experienced, people with schizophrenia living in boarding houses had less access to social support, meaningful activities and work and had
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lower levels of global functioning. These findings contradict the conventional wisdom that people with schizophrenia resort to living in boarding houses because of their level of disability. Stage 2 Stage 2 of the study further explored the impact of housing type on the mental health of people with schizophrenia by examining the experience of thirteen people living independently in private homes or in a boarding house. The study aimed to use the experiences of the participants to develop a grounded theory explanation of the impact of housing on people with schizophrenia. Findings from Stage 2 indicated a strong desire amongst all participants to live in their own home. Participants living in their own home had access to more opportunities and resources for staying well than participants living in boarding houses. Those participants who lived in their own home felt they belonged, they felt safe and most importantly they had greater opportunities to make and maintain supportive social relationships with friends and family. Participants reported that stable housing and supportive relationships helped them to stay well.
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LIST OF PUBLICATIONS FROM THE RESEARCH PROGRAM
Browne, G., Courtney, M., & Meehan, T. (2004). Type of housing predicts rate of readmission to hospital but not length of stay in people with schizophrenia on the Gold Coast in Queensland. Australian Health Review, (6)1, 65-72. Browne, G., & Courtney, M. (2004). Measuring the impact of housing on people with schizophrenia. Nursing and Health Sciences, 6(1), 3744. Browne, G., & Courtney, M. (in press). Exploring the experience of people with schizophrenia who live in boarding houses or private homes: A grounded theory study. Contemporary Nurse. 17(3). Browne, G., & Courtney, M. (in press). Housing, social support and people with schizophrenia: A grounded theory study comparing boarding houses and private homes. Issues in Mental Health Nursing.
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TABLE OF CONTENTS
KEY WORDS ........................................................................................................... iii ABSTRACT ............................................................................................................... v LIST OF PUBLICATIONS FROM THE RESEARCH PROGRAM................. ix TABLE OF CONTENTS......................................................................................... xi LIST OF TABLES ............................................................................................... xxiii STATEMENT OF ORIGINAL AUTHORSHIP ............................................... xxv DECLARATION OF ENROLMENT ............................................................... xxvii ACKNOWLEDGMENTS ................................................................................... xxix CHAPTER 1 .............................................................................................................. 1 INTRODUCTION..................................................................................................... 1 1.1
Background to the Study................................................................................. 1
1.2
Research purpose, problem, aims and objectives............................................ 4 1.2.1
Purpose of the study ..........................................................................................4
1.2.2
Research problem..............................................................................................5
1.2.3
Research question .............................................................................................5
1.2.4
Research aims and objectives ...........................................................................5
1.3
Definitions and terminology used within this study ....................................... 6
1.4
Thesis Structure............................................................................................... 6
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CHAPTER 2 ............................................................................................................ 11 THE NEW PARADIGM—FROM DEINSTITUTIONALISATION TO RECOVERY AND CONSUMER PARTICIPATION ........................................ 11 2.1
From deinstitutionalisation to recovery: a change in thinking...................... 11
2.2
Some consequences of having a mental illness............................................. 13
2.3
A paradigm shift: empowerment and a new way of thinking ....................... 15
2.4
2.3.1
Consumer movement: the struggles for recognition and power sharing ........18
2.3.2
Professional/consumer relationship................................................................19
2.3.3
Blocks to consumer participation....................................................................22
2.3.4
The changes—a challenge for nurses..............................................................23
Summary ....................................................................................................... 25
CHAPTER 3 ............................................................................................................ 29 HOUSING: A CRITICAL ELEMENT IN RECOVERY ................................... 29 3.1
3.2
Importance of Housing.................................................................................. 29 3.1.1
Community versus institution-based accommodation.....................................29
3.1.2
Housing and its influence on mental health ....................................................32
3.1.3
Acceptance—a key element of community integration....................................35
Types of housing ........................................................................................... 36 3.2.1
Types of housing in the USA ...........................................................................36
3.2.2
Types of housing in the UK .............................................................................37
3.2.3
Types of housing in Australia..........................................................................38
3.2.4
Different types of housing offer different levels of support .............................39
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3.2.4.1
Hospital residence and continuing care facilities for those requiring intensive rehabilitation/care ......................................................39
3.2.4.2
Boarding houses, hostels or single room occupancy ................................40
3.2.4.3
Lodges ......................................................................................................41
3.2.4.4
Community Group Homes........................................................................41
3.2.4.5
Living with parents...................................................................................42
3.2.5
3.3
Service delivery and housing ........................................................................ 43 3.3.1 3.3.1.1 3.3.2
3.4
How consumers use their homes .....................................................................43
Model for service delivery history of housing for consumers .........................44 Consumer-focused housing: A challenge to graduated housing...............45 Research that seems to contrast the above views............................................47
Relevance of the paradigm shift to housing.................................................. 48 3.4.1
Preferred housing............................................................................................48
3.4.2
Rhetoric versus reality ....................................................................................49
3.4.3
Consumers’ choices in, and satisfaction with, housing...................................51
3.4.4
Outcome of consumer choice in housing.........................................................51
3.5
Housing and mental health in Australia ........................................................ 52
3.6
Research in Australia .................................................................................... 53
3.7
3.6.1
Admission to hospital and housing .................................................................53
3.6.2
Research into Boarding Houses......................................................................54
3.6.3
Consumer-focused projects: some success in Australia .................................56
Summary ....................................................................................................... 57
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CHAPTER 4 ............................................................................................................ 59 PEOPLE WITH SCHIZOPHRENIA ................................................................... 59 4.1
Experience of having schizophrenia ............................................................. 60
4.2
Housing and schizophrenia ........................................................................... 61 4.2.1
Preferences......................................................................................................61
4.2.2
Consequences of different types of housing ....................................................63
4.2.3
Ideal housing...................................................................................................65
4.2.4
Housing and independence and social functioning.........................................65
4.3
Substance abuse ............................................................................................ 66
4.4
Schizophrenia and relationships.................................................................... 67 4.4.1
Relationships and quality of life......................................................................68
4.4.2
Relationships and mental health .....................................................................70
4.4.3
Relationships and hospitalisation ...................................................................71
4.4.4
Relationships and housing ..............................................................................73
4.5
Summary ....................................................................................................... 74
4.6
The study....................................................................................................... 75 4.6.1
Purpose of the study ........................................................................................75
4.6.2
Importance of the study...................................................................................76
4.6.3
Contribution of the study.................................................................................76
4.6.4
Research question ...........................................................................................76
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CHAPTER 5 ............................................................................................................ 77 METHODOLOGY.................................................................................................. 77 5.1
Introduction ................................................................................................... 77
5.2
Grounded Theory .......................................................................................... 78
5.2.1
Axial Coding Controversy ............................................................................ 80
5.3.
Summary ....................................................................................................... 82
5.4
Objectives of the study.................................................................................. 83 5.4.1
5.5
Aims of study ...................................................................................................83
5.4.1.1
Stage 1 ......................................................................................................83
5.4.1.2
Stage 2 ......................................................................................................83
Study design .................................................................................................. 84 5.4.1
Stage 1: Quantitative archival data ................................................................84
5.5.1.1
Hypotheses ...............................................................................................85
5.5.1.2
Archival data sets......................................................................................86
5.5.1.3
HBCIS ......................................................................................................86
5.5.1.4
MH-CASC ................................................................................................87
5.5.1.5
Instruments used in the MH-CASC Study................................................88
5.5.1.6
HoNOS .....................................................................................................88
5.5.1.7
LSP 16 ......................................................................................................89
5.5.1.8
Inclusion criteria .......................................................................................92
5.5.1.9
Access to databases ..................................................................................92
5.5.1.10
Ethical considerations...............................................................................93
5.5.1.11
Stage 1: Data analysis...............................................................................93
5.5.2
Stage 2: Qualitative data ................................................................................94
5.5.2.1
Rationale for use of qualitative data .........................................................94
5.5.2.2
Relevance to consumers and housing .......................................................94
5.5.2.3
Contribution of qualitative studies to our understanding of the role of housing ..........................................................................................95
5.5.2.4
Participants ...............................................................................................96
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5.5.2.5
Data collection..........................................................................................97
5.5.2.6
Data recording ..........................................................................................98
5.5.2.7
Data analysis.............................................................................................98
5.5.2.8
Ethical considerations...............................................................................98
CHAPTER 6 .......................................................................................................... 101 PUBLICATION 1: TYPE OF HOUSING PREDICTS RATE OF READMISSION TO HOSPITAL BUT NOT LENGTH OF STAY IN PEOPLE WITH SCHIZOPHRENIA ON THE GOLD COAST IN QUEENSLAND ..................................................................................................... 101 Introduction ............................................................................................................. 101 6.1
Abstract ....................................................................................................... 102
6.2
Introduction ................................................................................................. 102
6.3
6.2.1
Consumer’s preferences................................................................................104
6.2.2
Types of Accommodation ..............................................................................105
6.2.3
Research in Australia....................................................................................106
6.2.4
The Gold Coast Experience: .........................................................................107
Aims of study .............................................................................................. 109 6.3.1
6.4
Research Design............................................................................................110
6.3.1.1
Type of Housing .....................................................................................110
6.3.1.2
Data.........................................................................................................110
6.3.1.3
Participants .............................................................................................110
6.3.1.4
Data Handling.........................................................................................111
Results ......................................................................................................... 111 6.4.1
Hypothesis 1: Admission Rates .....................................................................112
6.4.2
Hypothesis 2: Length of Stay.........................................................................112
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6.5
Discussion ................................................................................................... 113
6.6
Conclusion .................................................................................................. 114 Acknowledgements ........................................................................................................115
CHAPTER 7 .......................................................................................................... 117 PUBLICATION 2: MEASURING THE IMPACT OF HOUSING ON PEOPLE WITH SCHIZOPHRENIA ................................................................. 117 Introduction ............................................................................................................. 117 7.1
Abstract ....................................................................................................... 117
7.2
Introduction ................................................................................................. 118
7.3
Literature Review........................................................................................ 119
7.4
Aims of the study ........................................................................................ 122
7.5
Method ........................................................................................................ 122
7.6
7.7
7.5.1
Definitions.....................................................................................................122
7.5.2
Objectives......................................................................................................123
7.5.3
Study data......................................................................................................123
7.5.4
Sample...........................................................................................................124
7.5.5
Instruments used in the MH-CASC Study .....................................................124
7.5.6
Ethical Considerations..................................................................................130
7.5.7
Variables and Data Analysis.........................................................................130
Results ......................................................................................................... 131 7.6.1
HoNOS ..........................................................................................................131
7.6.2
LSP 16 ...........................................................................................................132
Discussion ................................................................................................... 134 xvii
7.7.1
HoNOS Data .................................................................................................134
7.7.2
LSP 16 Data ..................................................................................................135
7.8
Limitations of the Study.............................................................................. 135
7.9
Conclusion .................................................................................................. 136
CHAPTER 8 .......................................................................................................... 139 EXPLORING THE EXPERIENCE OF PEOPLE WITH SCHIZOPHRENIA WHO LIVE IN BOARDING HOUSES OR PRIVATE HOMES: A GROUNDED THEORY STUDY ................................ 139 Introduction ............................................................................................................. 139 8.1
Abstract ....................................................................................................... 139
8.2
Introduction ................................................................................................. 140
8.3 People with schizophrenia, type of housing and quality of life ........................ 142 8.4
Aim of the study.......................................................................................... 145
8.5
Method ........................................................................................................ 145
8.6
8.5.1
Definitions.....................................................................................................146
8.5.2
Recruitment of Participants ..........................................................................147
8.5.3
Data collection procedures ...........................................................................148
8.5.4
Data analysis.................................................................................................148
Results ......................................................................................................... 150 8.6.1
A place of my own .........................................................................................151
8.6.1.1
In charge of my life ................................................................................152
8.6.1.2
Familiarity ..............................................................................................152
8.6.1.3
This is my space I feel comfortable here ...............................................153
8.6.1.4
I dream of a place of my own .................................................................153
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8.6.2
A space of my own.........................................................................................154
8.6.2.1
Need to get away ...................................................................................154
8.6.2.2
Under the Doona....................................................................................155
8.6.3
Atmosphere....................................................................................................155
8.6.3.1
Living with others..................................................................................155
8.6.3.2
Knowing it is there ................................................................................156
8.6.4
Activities related to the housing ....................................................................157
8.6.4.1
At home activities..................................................................................157
8.6.4.2
Outside activities ...................................................................................158
8.6.5
Stability .........................................................................................................158
8.6.5.1
Stability and friendships ........................................................................158
8.6.5.2
Stability and Hospital ............................................................................159
8.6.5
Cost of housing..............................................................................................159
8.7
Discussion ................................................................................................... 161
8.8
Conclusions ................................................................................................. 164
CHAPTER 9 .......................................................................................................... 167 HOUSING, SOCIAL SUPPORT AND PEOPLE WITH SCHIZOPHRENIA: A GROUNDED THEORY STUDY COMPARING BOARDING HOUSES AND PRIVATE HOMES .................. 167 Introduction ............................................................................................................. 167 9.1
Abstract ....................................................................................................... 167
9.2
Introduction ................................................................................................. 168
9.2.1
People with schizophrenia .......................................................................... 169
9.2.2
Types of housing ......................................................................................... 171
9.3
Overview of the study ................................................................................. 171
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9.3.1
9.4
Aim of the study.............................................................................................172
Method ........................................................................................................ 172 9.4.1
Definitions.....................................................................................................173
9.4.2
Selection of sample........................................................................................173
9.4.3
Data collection and analysis .........................................................................174
9.5
Findings....................................................................................................... 176 9.5.1
The qualities of housing ................................................................................177
9.5.1.1
A place of my own..................................................................................177
9.5.1.2
A space of my own .................................................................................178
9.5.1.3
Cost of housing.......................................................................................179
9.5.1.4
Activities related to the housing .............................................................180
9.5.1.5
Stability...................................................................................................180
9.5.1.6
Atmosphere.............................................................................................181
9.5.2
Relationships.................................................................................................182
9.5.2.1
People accepting and understanding.......................................................182
9.5.2.2
Coming home to someone ......................................................................183
9.5.2.3
Living with others...................................................................................183
9.6
Discussion ................................................................................................... 184
9.7
Conclusions ................................................................................................. 186
CHAPTER 10 ........................................................................................................ 189 DISCUSSION AND CONCLUSIONS ................................................................ 189 10.1
Discussion ................................................................................................... 189
10.1.1
The project ....................................................................................................190
10.1.1.1
Stage one ...............................................................................................192
10.1.1.2
Stage two ...............................................................................................195
10.1.2
Limitations of the study .................................................................................202
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10.2
Conclusions and recommendations............................................................. 203
10.2.1
Recommendations .........................................................................................205
10.2.2
Clinical practice............................................................................................206
10.2.3
Research........................................................................................................207
APPENDIX 1 ......................................................................................................... 211 The Gold Coast...................................................................................................... 211 APPENDIX 2 ......................................................................................................... 219 List Of Questions From The Semi Structured Interviews ................................ 219 APPENDIX 3 ......................................................................................................... 223 Participant Information Form From Stage 2 In-Depth Interviews.................. 223 APPENDIX 4 ......................................................................................................... 229 Consent Form Signed By The Participants From Stage 2 In-Depth Interviews............................................................................................................... 229 APPENDIX 5 ......................................................................................................... 235 Letters Confirming Ethics Approval From QUT Ethics Committee............... 235 APPENDIX 6 ......................................................................................................... 237 Letter Confirming Ethics Approval From Gold Coast Hospital Ethics Committee.............................................................................................................. 237 REFERENCES...................................................................................................... 239
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LIST OF TABLES
Table 2.1 Criteria for Standard Three .................................................................... 16 Table 3.1 The National Schizophrenia Fellowship of Britain type of housing ................................................................................................... 38 Table 3.2 The New South Wales branch of the Schizophrenia Fellowship type of housing....................................................................................... 39 Table 5.1 Frequency Distribution for Accommodation in the HBCIS Data Set........................................................................................................... 87 Table 5.2 Frequency Distribution for Accommodation in the MH-CASC’s Adult3M Data Set .................................................................................. 88 Table 5.3 Items in the HoNOS ............................................................................... 89 Table 5.4 Items in the LSP 16 ................................................................................ 91 Table 6.1 Number of admissions for individuals discharged to different types of accommodation ...................................................................... 112 Table 6.2 Length of stay at last admission for different types of accommodation .................................................................................... 112 Table 7.1 Items in the HoNOS ............................................................................. 126 Table 7.2 Items in the LSP 16 .............................................................................. 129 Table 7.3 HONOS ................................................................................................ 132 Table 7.4 LSP 16 .................................................................................................. 133 Table 8 1 Categories and core categories............................................................. 151 Diagram 10.1: Interaction between the categories and subcategories of the qualities of housing. ............................................................................. 197
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Diagram 10.2: The interaction between the Core Categories of qualities of housing and social relationships and the subcategories ....................... 199 Table 10.1 Housing and people with schizophrenia: A substantive Grounded Theory ................................................................................. 201
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STATEMENT OF ORIGINAL AUTHORSHIP
The work contained in this thesis has not been submitted for a degree or diploma at any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.
Signed:…………………………………….
Date:……………………………………….
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DECLARATION OF ENROLMENT
I, Graeme Browne, a candidate for the degree of Doctor of Philosophy at Queensland University of Technology, have not been enrolled for another tertiary award during the term of my PhD candidature without the knowledge and approval of the University’s Research Degrees Committee.
Candidate’s signature:
Date:
xxvii
ACKNOWLEDGMENTS
Many people have supported me in the completion of this thesis. I would like to express my gratitude to Professor Mary Courtney, my primary supervisor for much of this project, for her valuable guidance and advice. Mary’s encouragement meant I left our meetings excited and feeling the project was valuable and worthwhile. In the early stages Barbara Tooth, my initial primary supervisor, was encouraging and supportive of my ideas on the role of consumers in the study. Tom Meehan, the associate supervisor during part of the project, for sharing his views and experience. This research would not have been possible without the contribution of the participants. Their willingness to share their lives, views and experiences with me in this project is much appreciated. I would like to thank Professor Philip Morris and the Gold Coast integrated Mental Health Services for their support of this project. Finally my family: the support of my wife and son, for my father whose enormous respect for education was a strong motivator for me through all my studies. I wish he were alive to see me complete this project.
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CHAPTER 1
INTRODUCTION
1.1
Background to the Study
Since the beginning of this century, the history of Australian mental health services has been characterised by complaints by prominent persons. These complaints have often led to formal inquiries into mental health services, which have typically been followed by some action aimed at addressing the complaints (Garton, 1988; Henderson, 1992). Services have again declined, leading to more complaints and further inquires (Lewis, 1988). An inquiry into the rights of people with mental illnesses in Australia, known as the Burdekin Report (Burdekin, Guilfoyle, & Hall, 1993), highlighted a broad range of contemporary concerns about the treatment, access to services and the status regarding the protection of rights for those suffering from mental illness. In an attempt to address the shortcomings in mental health services in Australia, state health ministers endorsed the National Mental Health Policy. This was a joint policy that intended to set clear direction for the development of mental health services in Australia. The National Mental Health Policy is being implemented via the National Mental Health Strategy—a process that has committed each state government to major reform processes to achieve significant improvements in the range and quality of mental health services (National Mental Health Strategy, 1992).
1
The emphasis of the strategy was on restructuring mental health services and deinstitutionalising the people using them. It includes: •
Mainstreaming of mental health services so that acute services are offered in general hospitals, rather than in separate psychiatric hospitals;
•
Introducing
systems
that
improve
continuity
of
care
and
comprehensive services; •
Introducing strategies that ensure adequate access to community based services;
•
Supporting the development of non-government agencies to assist carers and promote self-help;
•
Ensuring that legislation across Australia is consistent with the United Nations’ resolution on the Protection of Persons with Mental Illness and the Improvement of Mental Health Care;
•
Offering the opportunity for consumers and carers to participate in mental health service decision-making and funding;
•
Encouraging the development of national standards and systems for assessing whether services are meeting these standards (Australian Health Ministers Advisory Council, 1992).
The National Mental Health Strategy (1992, 1998) and its objectives are clearly underpinned by a desire to improve community-based resources, facilities and services available for those with mental illnesses. The strategy
2
also aims to provide greater consumer input into the decision-making processes relating to care of people with a mental illness. This is critical to ensure congruence between organisational and consumer needs, and to empower consumers—an important commitment of the National Mental Health Strategy. People with a mental illness have traditionally been excluded from the process of policy development in relation to mental health services. While the intention of the National Mental Health Strategy to involve consumers in policy development and other aspects related to mental health services is desirable and well motivated, opportunities for them to have a direct input into the development of the strategy and its ongoing evaluation continue to be limited. Hazelton (1995) supports this view in an analysis of mental health services in Tasmania. This analysis considered the Tasmanian Mental Health Services Commission's official report into the implementation of mental health services and concluded there was little room for the input of mental health service users into planning, policy development and evaluation of the mental health services. A similar observation can be made in relation to the provision of community based housing for those with mental illness. According to the National Mental Health Strategy (1994a, 1998, 2002), housing is generally considered to be a crucial community support service necessary to achieve the success of its policy of community-based care for people with a mental illness. Health and housing authorities have committed funds to increase public housing places for people with mental illness. However, such
3
housing is often of a poor standard (Burdekin et al., 1993: Jablensky, McGrath, Herrman, Castle, Gureje, Morgan, & Korten, 1999). The issue of housing is not taken seriously by decision makers in mental health services (Quinn, 1994). There is good reason for believing there is a contradiction between the National Mental Health Strategy's objectives, and reports by nurses and others working with people with mental illness, about the extent to which the consumers’ needs are met, or the views of consumers are sought out or heeded. During the 1990s The National Mental Health Strategy indicated that, while consumer consultation and participation is occurring and is desirable, the process “still has a long way to go” (National Mental Health Strategy, 1994a, p12) "is far from complete" (National Mental Health Strategy, 1997, p123). More recently there have been some improvements in consumer participation but there is still “variable commitment to consumer participation" (National Mental Health Strategy, 2002, p139). Consumer groups argue that the level of participation reported, to governments by health services, is not consistent with their experience (National Mental Health Strategy, 2002). 1.2
Research purpose, problem, aims and objectives.
1.2.1
Purpose of the study
Considering the preceding discussion, the general purpose of this study is to explore the impact of housing on people with schizophrenia. An additional goal is to obtain personal views and opinions of consumers. These views
4
and opinions will impact on the findings and conclusions drawn from the study. 1.2.2
Research problem
Very little is currently known about the impact of housing on the mental health of people with schizophrenia. This research will generate new information and insights into this question and will contribute to policy planning and implementation related to community-based mental health services. 1.2.3
Research question
What is the impact of housing on people with schizophrenia? 1.2.4
Research aims and objectives
This study aimed to address the research question in two stages. In stage one the relationship between housing, re-admission rates and the mental health of people with schizophrenia was investigated using archival databases. Stage two of the study used semi-structured interviews, with people with schizophrenia who were living in two different types of accommodation, to develop a grounded theory explaining the impact of housing on people with schizophrenia.
5
1.3
Definitions and terminology used within this study
There are many terms in common use that describe the group of people who are the subjects of this work, for example schizophrenics, chronic schizophrenics, people with schizophrenia, chronic mentally ill, psychiatric patients, clients of mental health services, people with a psychiatric disability, survivors of mental illness/mental health services, and consumers of mental health services. Consistent with the philosophy of the author and this thesis, the consumer group SANE was approached to help identify appropriate terms. SANE recommended the terms consumers of mental health services (consumers) and people with schizophrenia—these terms are subsequently used in this thesis. For the purpose of this study the following definitions will be used: Boarding house will mean privately run for-profit public accommodation. These consist of sometimes shared but normally single bedroom accommodation with shared facilities such as bathroom, kitchen and living areas. This is the understanding of the term boarding house in mental health services in South East Queensland where the study was conducted. Private home will mean any privately owned or rented accommodation, usually a house or flat, where the consumer lives alone or with family or friends of his/her choosing. 1.4
Thesis Structure
This is a thesis by publication and differs from the conventional monograph form in that the results are presented as separate chapters (6,7,8,and 9). 6
Chapter 2: From deinstitutionalisation to recovery: A change in thinking This chapter presents discussion of the consequences related to having a mental illness, the concept of recovery, and the importance of autonomy to consumers. For consumers, recovery is not just the result of treatment but includes finding ways to deal with the stigma, accepting that they have a mental illness, and dealing with community attitudes and the social consequences of their illness. Institutions interested in services to the mentally ill advocate consumer participation in mental health services, but unfortunately this is only just beginning to happen. The reality is that consumers have very little say in service delivery, although the literature seems to suggest that consumers can make a very real contribution to mental health services. Chapter 3: Housing: A critical element in recovery This chapter presents a review of the literature regarding the subject of accommodation for consumers and their involvement in the process of decision-making about their living arrangements. Reports in the literature demonstrate that consumers have better outcomes living outside institutions, preferably living in independent housing of their own choice with friends, family or a partner. They prefer not to live with other consumers and not to live in institutional settings. There is a body of evidence indicating that if consumers have the opportunity to live in quality housing—their preferred housing—their mental health improves. There is
7
also some evidence that housing is more important to the mental health of consumers than the existence of mental health services. The different housing options available to consumers are further discussed in this chapter. The literature review identifies the least desirable out-ofhospital accommodation as being boarding houses, and the most desirable being for consumers to live independently in their own home. Chapter 4: A special case–people with schizophrenia This chapter presents the argument that people with schizophrenia need to be considered as a special case. They are the largest diagnostic group treated by mental health services and, like other consumers, people with schizophrenia prefer to live in their own home. When they do they appreciate the company of friends and loved ones and value the social support they receive from those people. Unfortunately, because of the nature of their illness, people with schizophrenia have trouble maintaining the resources such as housing and supportive social relationships. Different bodies of literature suggest that both housing and relationships have an impact on the quality of life, mental health and hospital admission rates of people with schizophrenia.
Chapter 5: Methodology This chapter argues that if the work is to have an impact on the delivery of mental health services the post positivist paradigm is the most appropriate.
8
The rationale and strategies used to address the research question are discussed. An description of and argument for a grounded theory methodology is presented. The final part of this chapter addresses the ethical issues related to the use of human participants. Chapter 6: Publication 1 ‘Type of housing predicts rate of readmission to hospital but not length of stay in people with schizophrenia on the Gold Coast in Queensland’ This article reports on stage one of the study and presents the results and findings from the Hospital Based Corporate Information System (HBCIS) data set. This data set was used to compare the readmission rates and length of stay in hospital for people discharged to boarding houses or their own home. Chapter 7: Publication 2: ‘Measuring the impact of housing on people with schizophrenia’ This article reports on stage one of the study and presents the results and findings from the Menta Health Classification and Service Cost Project (MH-CASC) data set. This data set was used to compare psychiatric symptoms and level of functioning for people discharged to boarding houses or their own home. Chapter 8: Publication 3: ‘Exploring the experience of people with schizophrenia who live in boarding houses or private homes: A grounded theory study”. 9
This article reports on the initial findings from the semi-structured interviews, it focuses on the qualities of the housing the participants reported as having an impact on their mental health. Chapter 9: Publication 4: ‘Housing, social support and people with schizophrenia: A grounded theory study comparing boarding houses and private homes.’ This article takes the analysis of the interview data a step further and addresses the social support available to people who live in their own home. Participants who lived in their own home maintained stability in their lives and this helped then develop supportive relationships and to stay well. Chapter 10: Discussion and conclusions This chapter presents an overview of findings from the published articles. Implications for mental health policy and recommendations for practice in mental health services are presented. Limitations of the research are discussed, with recommendations for addressing the limitations in future research. Finally, recommendations for further research are presented.
10
CHAPTER 2
THE NEW PARADIGM—FROM DEINSTITUTIONALISATION TO RECOVERY AND CONSUMER PARTICIPATION
This chapter describes the views and values of the author in the context of the delivery of mental health services as outlined in this thesis. The author spent much of the 1980s working as a lone practitioner community mental health nurse in northern NSW. During this experience the author learnt to respect and value consumers’ opinions on their illness and their strategies for staying well. Public policy recommends that the relationship between consumers and mental health professionals should be one of equals and that consumers be encouraged to have input into service delivery at every level. Unfortunately, this requires a significant change in attitude for mental health professionals and services; while change is occurring there is still a way to go (National Mental Health Plan Steering Committee, 2003). As a result consumers’ voices are not often heard in the development of policy at a district level. 2.1
From deinstitutionalisation to recovery: a change in thinking
Historically, society has restricted choice to people with serious mental illness and institutions often took care of them and made decisions for them (Screbnik et al., 1995). This custodial care approach emerged because consumers were considered unable to care for themselves. Recent developments in mental health services include deinstitutionalisation 11
followed by community support system (CSS) and have evolved towards a recovery-oriented mental health system (Anthony, 1993). A recoveryoriented mental health system does not focus on buildings, as did planners of deinstitutionalisation; nor services, which were the focus of CSS. In contrast, recovery focuses on how the recipients of services function. Whilst mental illness cannot always be cured, a person with a mental illness can grow beyond the limits imposed by the early stages of their illness. Mental health services have been consistently delivered without a positive focus on recovery. A focus on recovery is essential for promoting hope and wellbeing for people with a mental illness. Recovery-orientated mental health services offer new meaning to consumers. Mental health service providers need to learn to operate in a way that empowers consumers to build lives they find meaningful and satisfying (Barker, 2003; Carling 1990a; National Mental Health Plan Steering Committee, 2003). Recovery is a common concept in physical illness and disability. While this concept is discussed in the writings of consumers, it is largely ignored in both practice and research in mental health service delivery (Anthony, 1993; Barker, 2003). Recovery involves more than recovering from the illness. People with mental illness may also have to recover from the stigma they have incorporated into their view of themselves, from the iatrogenic effects of treatment, from lack of opportunities for self-determination, from the destructive effects of unemployment, and from crushed dreams. Recovery is a holistic process in which treatment, case management and rehabilitation may help (Anthony, 1993; Barker, 2003).
12
A recovery-orientated mental health system focuses on how the recipients of services would function. When consumers discuss their recovery they frequently refer to their decision to battle against their illness as being critical to the course of their illness (Chafetz, 1996). Consumers also report that acceptance of themselves with their mental illness, as well as acceptance by their friends and relatives, was critical to recovery. They report that acceptance gives them strength (Vallenga & Christenson, 1994). 2.2
Some consequences of having a mental illness
Consumers report varying experiences of their disability but there appears some common themes that run through their lives. These themes include powerlessness or lack of autonomy, loneliness, loss, and the stigma of mental illness (Anthony, 1993). Stigma seems to have an impact on the other areas of their lives—for example, consumers are less accepted by the community therefore their loneliness is exacerbated. More optimistic themes such as acceptance of the illness and the decision to fight back have also been reported (Anthony, 1993). Stigma is defined as a mark of disgrace, a stain on one’s reputation (Delbridge, Bernard, Blair & Ramson, 1987). Many consumers face stigma whilst trying to live in the community (Granerud & Severinsson, 2003). The participants in a study by Vellenga and Christenson (1994) reported that stigma was related to a feeling of being discredited or shamed because of their illness. The authors reported that stigma resulted in exclusion by others from social relationships, it also meant the participants excluded themselves from social situations in order to avoid the stigma and cope better with their
13
mental illness. The experience of alienation resulted in feelings of loneliness and of being ostracised. Anonymous (1993), a mental health nurse with an unspecified mental illness, reported that the stigma associated with having a mental illness destroyed her career and nearly destroyed her family. Some deinstitutionalised people use their homes as an asylum to escape the label of “mental cases” and the community’s stigma. Many find the fear of the stigma restricted their desire to meet others (Nikkonen, 1996). Loss and distress are significant consequences of having a mental illness. In a study of people with a mental illness Vallenga and Christenson (1994) found the participants suffered loss of relationships, vocational opportunities and distress at having to deal with the devastating consequences of the symptoms, such as being chronically tired and having no interests. The attitude consumers have towards their illness seems to play an important role in how they deal with their illness. Acceptance is an important issue to consumers. There were two dimensions to “acceptance”; the need for acceptance of themselves with their mental illness and the need for unconditional acceptance from others, especially loved ones. Participants knew when they were accepted and when they were not, and reported that acceptance gave them strength, purpose and value (Vallenga & Christenson, 1994). A study of 43 participants who had a long-term psychiatric disability found that the respondents frequently referred to their decision to battle against their illness as being critical to the course of their illness. The decision to fight this battle included the commitment to treatment. Finding the right
14
treatment meant finding the right treatment provider, a provider who would include them in making decisions (Chafetz, 1996). 2.3
A paradigm shift: empowerment and a new way of thinking
Recovery-oriented mental health services require a paradigm shift (Barker, 2003). Carling (1990a) described the future of mental health services as moving to what he called a worldview in which consumers are seen as citizens with a potential for, and right to, full community participation and integration. Carling (1990a) asserted that these arguments have been used in other disability services, for example people who have physical disabilities and people with an intellectual disability. Carling cited research that demonstrates the effectiveness of non facility-based housing support programs for consumers. He also argued that professionals appear to have almost contradictory views to consumers concerning housing needs. The National Mental Health Strategy (1994) argued that the quality and effectiveness of service delivery would be enhanced if “avenues are created for participation in decision making” (p. 13) by consumers and communities. It further stated that consumer participation was recognised as one of the best ways to improve services and that accountability of services to consumers is essential if their human rights are to be respected. The National Standards for Mental Health Services (National Mental Health Strategy, 1996) were developed to help achieve the National Mental Health Policy aim of making significant improvements in the treatment, care, and quality of life of Australians who suffer from mental health disorders and problems (National Mental Health Policy, 1992). 15
Since the inception of the National Mental Health Strategy, commitment to consumer and carer participation in mental health services is one of the guiding principles for the standards and the focus for Standard Three (Table 2.1). Table 2.1
Criteria for Standard Three
This figure is not available online. Please consult the hardcopy thesis available from the QUT Library
Source: National Mental Health Strategy (1996)
A meeting of the World Health Organization (World Health Organization, 1990) concluded that, despite increasing involvement of consumers in other aspects of the health care delivery system, consumers have rarely been involved in decisions about service planning, service implementation or evaluation of services. This lack of involvement, combined with the stigma attached to those with mental illness, has led to a situation where services
16
have been increasingly under-utilised. As a result, greater numbers of persons with chronic mental illness have not received the services beneficial to them. Family and community leaders are increasingly calling for more relevant mental health services that lead to greater utilisation of each person’s capabilities. Allness and Knodeler (1998) described consumers as being powerless and particularly vulnerable in negotiations with service providers, but also recognised that they have expertise in mental health care. In its draft report on consumer participation in mental health services the Victorian Mental Illness Awareness Council (VMIAC, 1994) stressed the importance of consumer participation in decision-making at all levels of mental health services, especially in this climate of tremendous change in this sector. The VMIAC suggested some creative ideas to include consumers at the level of their own treatment. Some of these included: consumers choosing their own case workers; consumers being provided with information on their treatment; encouraging personal management of medications; setting their own goals and identifying their own needs; and being allowed to take risks and be involved in discharge planning. It was identified that staff attitudes needed to change so that they could respect the experience of consumers and take their concerns seriously. In Australia, there is clear recognition that services and governments must continue their efforts towards embracing the new paradigm of consumer participation in their own care. The Ten Year Mental Health Strategy for Queensland (Queensland Health, 1996) identified a consumer-focused
17
approach to service delivery as being a priority. According to this strategy, resources should be available to ensure the participation of consumers and carers in mental health service development. This Queensland Health strategy also recommended consistent evaluation methods that focus on consumer outcomes and implementation of service standards for mental health services. 2.3.1
Consumer movement: the struggles for recognition and power sharing
In Australia, Burdekin et al. (1993) concluded that the respect for the rights of the mentally ill was a disgrace. Zinman (1986) argued that it was time consumers were treated with respect by mental health services and supported in taking charge of their own lives. This view has been supported by other authors (Szasz, 2002). The struggles of the consumer movement and self-help movement in mental health services are comparable to the tradition of the civil rights movements of black people, women, and gays (Barker, 2003; Szasz, 2002; Valentine, 1989; Zinman, 1986). The clients of mental health services are struggling to be free to ‘reclaim from psychiatry ownership of their lives’ (Zinman, 1986, p. 213). Zinman argued that part of the process of being free means rejecting the dehumanising stereotypes propagated by family, the mental health system, and society at large (Zinman, 1986). Self-help groups and client-based alternatives may offer some support for people attempting to live in a community that stereotypes them. Client-
18
based organisations are run by those who use the service, they strive to share power and responsibility, and seek a non-hierarchical structure in which people reach across instead of up or down. They are based on choice, not a mental health continuum, and use a non-medical approach that is responsive to the real needs of people (Zinman, 1986). 2.3.2
Professional/consumer relationship
The quality of the relationship between the professional and the consumer seems to be critical to the outcome for the consumer, there needs to be respect by both parties for the views of the other. Unfortunately, this mutual respect is not always a part of this relationship. This is especially true of consumers who find little value in what is offered by mental health services. These consumers often attract labels such as “treatment resistors” or “revolving door patients”. It is argued that the resistance to treatment is due, at least in part, to non-compliance and thus the blame for not responding to treatment is with the patient and not the system (Santigo, Berren, Biegel, Goldfinger & Hannan, 1990). The views of consumers were sought in a study using in-depth interviews to explore the patients’ perceptions of their interaction with mental health nurses (Muller & Poggenpoel, 1996). The results indicated that patients felt “stereotyped” in that they were different from the nurses but all the same as each other. The nurses were seen as custodians and were there to “mind” the patients and thus their role was to strictly enforce the rules. Lack of intimacy was seen as an issue and this meant the patients felt very alone. The nurses were seen as being friendly, but lacking empathy, while also being seen as
19
caring and helpful. Consumers also reported anxiety when interacting with psychiatric nurses because of the potential for inappropriate medication and violence from the nurses. People are not like televisions that are fixed, they can be active participants in the process of their rehabilitation and thus “they experience recovering a new sense of self and of purpose within and beyond the limits of the disability” (Deegan, 1988, p. 11). Deegan described hope as one of the cornerstones of the process of rehabilitation—not hope to be the same as before but the hope of leading a life that is fulfilling within the limitations of the disability. She suggested that staff attitudes are very important. One particularly destructive staff attitude is that there is a ‘world of the normal’ and ‘the world of the abnormal’ and it is the mental health nurse’s role to make the person fit into the normal world. This, Deegan argued, creates a “them” and “us” situation. These negative attitudes to consumers have been reported else ware (Muller & Poggenpoel, 1996; Rudman, 1996). Degan goes on to argue “them” (the disabled) are expected to do all the changing and growing. This leaves the staff in a very safe position, but a position very distant from their client. This creates an oppressive environment for people who are struggling with their own recovery. Public policy in mental health services emphasises a commitment to involving consumers and their carers in all aspects of decision-making about mental health services. There is a body of evidence that argues they can make a valuable contribution (Rudman, 1996). Unfortunately, consumers and their carers do not become involved in the decision-making process
20
(Strong, 1995). Strong argued that this is because their opinions are not taken seriously and that their information is collected and not acted upon. If mental health services had truly attended to consumers’ input they would realise that their non-participation related to their dislike and rejection of the present mental health service provision offerings (Strong, 1995). Empowerment is not the experience of many consumers (Howie the Harp, 1990; Szasz, 2002). The experience of working with professionals can be stigmatising, as well as being very destructive to self-esteem and feelings of competence to run one’s life (Anonymous, 1993). In the UK, Rudman (1996) argued that professionals are attempting to empower users, but questioned if the power was theirs to give. Rudman concluded that health services are becoming increasingly controlling and that the idea of empowerment may be tokenistic. Nurses need to overcome this and to form close links and real partnerships with consumer organisations that move beyond the rhetoric and perhaps challenge the boundaries between users and nurses. These arguments are echoed Harding, Brooks, Ashikaga, Strauss, and Breier’s (1987) long-term follow-up study of 118 seriously ill psychiatric patients
from
Vermont
state
hospital
originally
diagnosed
with
schizophrenia. Outcomes varied widely, but one half to two thirds of the sample had achieved considerable improvement or recovered and were unrecognisable as former psychiatric patients. Harding et al. concluded that mental health professionals greatly underestimated the potential of their clients and their ability to make choices in their lives.
21
2.3.3
Blocks to consumer participation
In an assessment of Canada’s record of consumer participation, Valentine (1989) identified six primary barriers to effective participation in mental health services. These barriers included incongruence between stated values and actual practice, tokenism, lack of representativeness, role strain, poor communication and economic factors. Valentine (1989) argued that incongruence between stated commitment to value the input of consumers and the practice of inclusion in meetings was common. Sometimes there was coercion associated with funding agreements, that is, funding is dependent on evidence of consumer participation. Frequently, professionals did not recognise that their values made participation impossible. The number of consumers may be so low when tokenism occurs that they do not have an effective voice or their level of responsibility is too low for them to make a useful and effective contribution. Following a review of the literature, Valentine (1989) suggested that consumers should comprise 25% to 50% of decision-making boards. Lack of representativeness can occur when it is assumed that one consumer represents the views of all consumers. As with any interest group in the community, consumers have a wide range of views on what is best for them. These beliefs range from passive compliance with the medical view of psychiatry and mental illness to beliefs in autonomy and anti-medical models.
22
When consumers and professionals are unsure of their roles on committees the communication is often difficult, this is called role strain. It is especially difficult as professionals and consumers alike can slip into their traditional roles of “helper” and “patient”. Economics can be a further barrier to consumer participation. Professionals often receive relatively large salaries for their contribution to the committees, whereas consumers often do not have the same luxury (Valentine, 1989). 2.3.4
The changes—a challenge for nurses
In recent years the nursing profession has almost taken for granted the idea that individuals should be more than passive recipients of care, unfortunately nurses’ actions are not always consistent with this rhetoric (Ashworth, Longmate & Morrison, 1992). The changes in the way nurses deliver services provide unique challenges to the way mental health nurses work (Curtis & Hodge, 1995). Curtis and Hodge suggested that the way nurses have previously worked in institutions with strict rules is not appropriate in community-based mental health nursing. They argued that community support, which values partnerships and empowerment in helping relationships and has community integration as a desired outcome and consumers as colleagues in the mental health work force, may be inconsistent with the traditional lines of professional behaviour. Another dilemma can be the needs of the employing or funding agency and the rights of the consumer. For example, the consumer’s right to
23
confidentiality and the funding agency’s right of oversight and determination of appropriateness of interventions (Curtis & Hodge, 1995). Power is a neglected aspect of the relationship between mental health nurses and consumers (Curtis & Hodge, 1995). It seems that this issue is minimally addressed in the mental health nursing literature but it is clearly critical to any discussion about having a collaborative relationship with consumers. Nurses, by the nature of their background, have technical knowledge and status and experience that they take into the relationship. Statutory powers and responsibilities often supplement this power. Participation also requires that each party takes for granted that the other can contribute worthily and has equal status (Ashworth et al., 1992). This may mean that nurses will need to relinquish some of this undiscussed power and perhaps recognise that individuals (consumers) can be the experts on themselves. Rapp (1993) offered an alternative model of case management. This model focuses on the strengths of the consumer. This case management model seems to address some of the weaknesses of the traditional paternalistic model of psychiatric nursing. The model proposes the principles that: there is a focus on strengths rather than pathology; case manager-client relationship is primary and essential; interventions are based on client selfdetermination; the community is viewed as an oasis of resources, not an obstacle; assertive outreach is seen as the preferred mode of intervention; and that people suffering from severe mental illness can continue to learn, grow and change.
24
While many nurses would agree with the principles proposed by Rapp, their practice may not fully reflect them. It is difficult for nurses to change from ‘looking after’ consumers to working with them as partners in the therapeutic relationship. 2.4
Summary
Historically, society has restricted choice to people with serious mental illness. More recently, the policy in developed countries (including Australia), has been to increasingly include consumers in the decision making process. Unfortunately, the successful implementation of the policy has been slow. Mental health services that value partnership and empowerment in helping relationships support consumers’ integration into the community. The ideal model of a mental health service involves community integration as the desired outcome and consumers seen as colleagues in the mental health work force (Curtis & Hodge, 1995). This philosophical approach embraces a vision of people with severe mental disorders succeeding in the community living situation of their choice supported by access to individualised, flexible services and supports. This seemingly simple notion requires a fundamental shift in values and how mental health services operate (Barker, 2003; Parrish, 1990). By the nature of their background, mental health professionals have technical knowledge, status and statutory authority—this makes them powerful in their relationship with their clients and this power is rarely discussed amongst professionals and not with consumers (Barker, 2003; 25
Curtis & Hodge, 1995). Participation requires that each party take for granted that the other can contribute worthily (Ashworth et al., 1992). Allness and Knodeler (1998) described consumers as being powerless and particularly vulnerable in negotiations with service providers, but also recognised that they have expertise in mental health care. This view is supported by Howie the Harp (1990) and Anonymous (1993). In the USA mental health services’ treatment of people has been described as dehumanising for both the consumers and the service providers (Deegan, 1990). The paradigm shift, described by Carling (1990a), is difficult for nurses because it means a significant change in the way they relate to their patients. The nursing profession has taken for granted the idea that individuals should be more than passive recipients of care, unfortunately nurses’ actions are not always consistent with this rhetoric (Ashworth et al., 1992). This can also be true of mental health professionals in general (Anthony & Blanch, 1989; Carling, 1989). If nurses are sympathetic to the consumers’ understanding of their conditions, are flexible and interested in negotiating with consumers in their treatment plans, then their recovery is enhanced (Deegan 1996; Santigo et al., 1990). If nurses are to offer services that help the consumers feel they are in charge of their own lives their views of what are appropriate types and delivery modes for services need to be investigated.
26
Clearly there is recognition, at least in the literature, that services and governments have a way to go before they have embraced the new paradigms of recovery and consumer participation in their own care.
27
CHAPTER 3
HOUSING: A CRITICAL ELEMENT IN RECOVERY
3.1
Importance of Housing
Housing is considered an important aspect of community living by institutions interested in mental health and mental health care in Australia (Burdekin et al., 1993; Commonwealth Department of Health and Aged Care, 2000; Queensland Health, 1996; National Mental Health Strategy, 1992, 1998 & 2002) and internationally (World Health Organization, 1990). Posey (1990) asserted that no component of a community mental health system is more important than decent affordable housing. 3.1.1
Community versus institution-based accommodation
The physical layout of a living environment has a substantial impact on the life of its residents (Lewis, 1988). The old established institutions provided accommodation and many on-site amenities. Outside the buildings there were often farms and large well-tended gardens, as the institutions were built at a distance from the main town or city. Their design reflected the objective of segregating the mentally ill from the rest of the community (Lewis, 1988). Nevertheless, some of the basic features of the old institutions have not changed—the large dormitories with only curtains marking the individual living territories, the maze of corridors, the administrative offices—all create a rather strange “industrial” setting which lacks a sense of a normal home environment. It is no wonder that the empty 29
site of Friern Hospital was used in 1993 as the setting for a horror film (Trieman, 1997). More recently, institutions have become less restrictive and more interactive with the community. Nevertheless, it is generally believed that the best place for consumers is living in the community. Consumers’ quality of life improves
as
they
move
from
institutional
to
community-based
accommodation. The longer they stay in the community the more satisfied they are with their lives (Meehan, Rourke, Morrison, Posner & Drake, 2001; Trieman, 1997). An interesting two-year longitudinal study in the USA confirmed that living outside institutions is the best place for consumers. This study used a Cantrill Ladder and Lehman’s Quality of Life scale to assess the global wellbeing and quality of life (QoL) of participants (Kirkpatrick, Younger, Links & Saunders, 1996). The participants had a history of schizophrenia with prolonged or repeated treatment in a psychiatric hospital and a history of unsuccessful community functioning. The results demonstrated that their QoL and level of global functioning improved with the increased time the participants were out of hospital. Kirkpatrick et al. gave an interesting case example: In 1990, Alex was a 63-year-old man with a diagnosis of schizophrenia and many physical problems. His current admission had lasted almost 33 years. His first hospitalisation was at the age of 21 with a total hospitalisation of more than 37 years. Alex had a history of aggression. His nurse reported that
30
he continued to have periodic outbursts of verbal abuse and physical aggression, which made him inappropriate for living out of hospital... Alex did not know how long he had been in hospital and when interviewed could not imagine himself living anywhere but hospital ...When approached he was adamant “You’re not getting me out of here.” ... In July 1991 Alex was moved to lodgings ………... When interviewed Alex had been out of hospital for 14 months. On the Cantrill Ladder he rated his life as 8 out of 9 (best life I could expect to have) while life in hospital was ranked 6.... Since he left hospital there has been one incident of aggression which staff in the residence confirmed was provoked by another resident. Alex’s one request of staff was “Please don’t take me back to hospital”. (p.78) In a study examining the quality of life of 99 hospital residents and 92 people living in supervised community residences their length of stay in the community was considered, with participants categorised as either living in the community for more or less than six months. Regardless of length of stay the results indicated that community residents perceived their life situation more favourably, had more financial resources and were less likely to have been assaulted in the past year than the participants living in hospital (Lehman, Possidente & Hawker, 1986). The highest level of life satisfaction was reported by those living in the community more than six months; the group who had lived in the community for less than six months reported the next highest level of
31
satisfaction, and the long-stay hospital in-patients were the least satisfied group. The authors reported that the long-stay community residents seemed to feel settled in their surroundings and, although their objective QoL was similar to the other community group, they were not inclined to change their living situation (Lehman et al., 1986). Similar findings have been made in Australia (Meehan et. al., 2001). Clearly the community is the best place for most consumers to live. This view is supported in Australia by; the Health Ministers Advisory Council (1992), the National Mental Health Strategy (1994a, 1998 & 2002), Burdekin et al. (1993), Queensland Health (1996) and Meehan et al. (2001). 3.1.2
Housing and its influence on mental health
The Commonwealth Department of Health and Aged Care (2000) described inappropriate housing as an important risk factor that potentially influenced the development of mental health problems. A key public policy, this document argued, was the provision of suitable housing for people at risk from mental illness. Quality affordable housing has been identified as being one of the most important aspects of community support services for people with long-term mental illness. Without the availability of quality affordable housing, other treatment and rehabilitation approaches are jeopardised (Stroul, 1989). Stroul argued that long-term normalised housing should be the aim. In the USA, a study was conducted examining the relative contribution of housing versus psychiatric services to hospital readmission among 69 long-
32
term psychiatric patients in two communities (Rosenfield, 1990). Data were collected from hospital records on the use of mental health services and housing and financial assistance. Results indicated that when people needed both housing and psychiatric care, services for housing were a better predictor of success (of not being hospitalised) than the existence of a mental health service. The author concluded that housing services had a critical effect on relapse. A much larger study that included 729 deinstitutionalised severely mentally ill people in New York State drew similar conclusions to Rosenfield’s (1990) study. The study used case managers to collect quantitative data related to the physical condition of the person’s residence; its adequacy for six key life activities; and the overall appropriateness to the person’s needs of the setting as assessed by case managers. Data were also collected using community adjustment measures that included global level of functioning, degree of maladaptive behaviour, and the perceived QoL. The authors found a causal relationship between the quality of housing and the global functioning and QoL. Participants who remained in adequate and appropriate (as assessed by case managers) housing improved, and those in poor housing remained the same or deteriorated in their level of functioning. One group in the study moved and changed the quality of their housing. The participants who moved from poor quality housing to better housing improved in their global functioning. The participants who moved from good to poor quality housing deteriorated in their level of global functioning, as well as their perceived QoL. The authors concluded that
33
quality of housing impacted significantly on the community adjustment outcomes of consumers (Baker & Douglas, 1990). A review of the literature on community support services found that the characteristics of the residential setting were more predictive of outcomes were than the characteristics of the residents. It seems that highly structured and/or treatment-orientated settings have a negative impact on client adjustment (Anthony & Blanch, 1989). Hodgins, Cyr and Gaston (1990) completed a two-year longitudinal study of 112 former psychiatric in-patients who lived in supervised apartments (n=61) or were living alone (n=51). In the study, symptomatology, psychosocial functioning, stress, social support, QoL and life satisfaction were measured at six-monthly intervals. The results showed no difference in the readmission rates between the groups. The authors were surprised with this result as when someone presents for admission they are more likely to be sent home (that is not admitted) if they are from supported accommodation. At the six-monthly assessments there was no difference between the groups on measures of psychosocial functioning, stress, social support and QoL. Symptomatology only differed toward the end of the study when the supervised group reported more thought disorder than the living alone group. The authors concluded that living with other consumers may be stressful and create problems, such as having to deal with a house member’s suicide, greater access to drugs and alcohol, and having to put up with another person’s symptoms and unacceptable behaviour.
34
3.1.3
Acceptance—a key element of community integration
If community-based care is going to be successful, it is clear that housing is one of the key factors in its success. Unfortunately, some people in the general community are not happy to live with consumers (Wolff, Pathare, Craig, & Leff, 1996a; Granerud & Severinsson, 2003). Wolff et al. drew this conclusion when they used the Community Attitudes Towards the Mentally Ill (CAMI) scale to measure the attitudes of community members in two areas prior to establishing a group home. The results demonstrated that the groups with the most negative attitudes to the mentally ill were people with children and non-Caucasians; these groups were more likely to object to the establishment of community group homes. In a further study of community attitudes, Wolff et al. (1996b) again used the CAMI to examine the relationship between knowledge of mental illness and negative attitudes to mental illness. The authors found that negative attitudes, especially in older people, were fuelled by lack of knowledge of mental illness. They also concluded that negative attitudes amongst people with children were not related to knowledge about mental illness. The type of housing seems to be one of the factors that influence the community’s view of consumer housing. Wenocur and Belcher (1990) investigated strategies to overcome community resistance to housing for consumers. They interviewed the providers of 60 housing sites (defined as clusters of housing) including 189 separate housing units. The authors concluded that the community was more accepting of housing for consumers if it was in “normal” apartment style of living, in well-organised
35
neighbourhoods (although it is not clear what the authors meant by this term). Housing for consumers is more accepted by the community if no housing has been established for other specialised populations, and if strategies are used that avoid informing communities in advance of the planning for housing for consumers (Wenocur & Belcher, 1990). Aubrey, Tefft and Currie (1995), in their study of 345 households in Winnipeg, found that the more the housing is consistent with the rest of the street the more likelihood the residents would be accepted as part of the community. 3.2
Types of housing
3.2.1 Types of housing in the USA There are a number of types of housing used by consumers. Slaughter, Lehman and Mayers (1991) reviewed the literature on the QoL of people with severe mental illness in residential facilities. They described a number of types of residential facilities for consumers that included: •
Hospital residence, the traditional residence for consumers
•
Hostels or single room occupancy, which are large rooming houses that rent out single rooms, bathrooms are shared and the rooms may or may not have cooking facilities, they are usually privately owned
•
Lodges, which are community residences catering to small groups of individuals with psychiatric disabilities living and working in a supportive situation
36
•
Community group homes are houses in the community that are shared by a small number of consumers, they are usually sponsored by, and supervised by, mental health services or non-government organisations
•
Consumers also live with their parents.
Slaughter et al. (1991) suggested that we know little about the QoL in different types of accommodation and it is an area needing further research. 3.2.2 Types of housing in the UK Trieman (1997), in a study of the accommodation for consumers in North London, classified various types of residential care facilities as continuing care provision, hospital residence, residential care homes or nursing homes with 24-hour staffing, supported housing, and independent accommodation for clients who have both the desire and capacity to manage their affairs but occasionally need support. The National Schizophrenia Fellowship of Britain identified different types of government-funded accommodation for consumers. This accommodation included ten levels from intensive supervision hostels to independent living (see Table 3.1).
37
Table 3.1 Level
1
2
3
4
5
The National Schizophrenia Fellowship of Britain type of housing Type of housing
The intensive supervision hostels are usually for more than 10 residents who have severe, persistent or frequent disturbances of behaviour. Residents have their own rooms, communal facilities, living as a sheltered community. High staff levels, residents are in need of treatment as well as rehabilitation. The high supervision hostels provide accommodation for 8 to 10 residents living in their own rooms with shared facilities. A member of staff is on duty at all times. Staff member normally awake or on rapid call all night. Meals may be provided and budgeting and domestic tasks done by staff. For consumers who need less (but still a fair amount) supervision there are supervised hostels for 8–10 residents, fully staffed with staff sleeping on premises. Supervision needed for getting up, self care, getting meals etc. Minimally staffed homes are suitable for 8–10 residents who have their own rooms but share communal facilities. There is support staff during the day but none at night. Housekeeper-type residences are suitable for six residents who live in their own rooms with communal lounge and kitchen. A support worker is employed for 4–5 hours per day as well as occasional visits from caseworkers.
6
High support group homes which have the additional support of a worker 24 hours per day.
7
Low support group homes in which consumers share a house with 3–4 people and have regular visits from the psychiatric team members.
8
Supported bed-sits in which residents have their own bedroom with kitchen facilities and share a communal lounge. They are visited by a housing support worker and receive backup by members of the psychiatric team and local services.
9
Independent supported flats where residents live on their own in selfcontained flats but are visited regularly by someone experienced in providing the type of support required.
10
No support required so the person lives independently
3.2.3
Types of housing in Australia
The New South Wales branch of the Schizophrenia Fellowship used the British definitions of types of housing to develop their own descriptions of 38
government-funded accommodation and reduced the British ten levels to four in Australia (see Table 3.2). Table 3.2
The New South Wales branch of the Schizophrenia Fellowship type of housing
Level
Type of Housing
1
Full time supervision (staffed 24 hours per day) extended care hostel, ward in the community, supervised accommodation, for clients who need this care temporarily but are capable of greater independence or for clients who require this support on an ongoing basis.
2
Partial supervision in halfway house/core house for clients who are (a) undergoing active rehabilitation but require partial supervision (b) longterm rehabilitation clients who are unable to achieve more independent living.
3
Drop in supervision in-group homes/satellite houses for clients who are (a) undergoing active rehabilitation and working towards independent living (b) long-term rehabilitation clients who are unable to achieve total independence and have reached optimal functioning.
4
Independent living.
3.2.4
Different types of housing offer different levels of support
3.2.4.1 Hospital residence and continuing care facilities for those requiring intensive rehabilitation/care
These facilities are usually, but not necessarily, hospital-based. They provide 24-hour nursing care and full medical cover, long and medium term accommodation and slow stream or intensive rehabilitation, depending on the particular client group. In general such provisions cater for severely disabled people who would not be accommodated in any ordinary home. Types of care provision in the UK include rehabilitation wards, hospitals, hostels and nursing homes (Trieman, 1997). People living in hospital seem
39
to be less likely to be arrested but more likely to be assaulted than people living in community residences (Lehman et al. in Slaughter et al., 1991). In Australia “Project 3000” was established to help severely disabled consumers move out of hospital and live in the community. The project offered higher levels of coordinated clinical psychiatric care, housing and disability support than is normally available to people discharged from the stand-alone tertiary psychiatric institutions (Meehan, et. al., 2001) 3.2.4.2 Boarding houses, hostels or single room occupancy
Hostels and boarding houses are also known as single room occupancies (SRO) in the USA. This style of accommodation usually provides consumers with private or shared bedrooms and residents usually share facilities such as showers, kitchens and living rooms. Boarding houses and hostels seem to offer satisfaction with the accommodation (Slaughter et al., 1991) they also offer activities for, and cohesion amongst, the residents (Sympson, Hyde & Faragher, in Slaughter et al., 1991). Living in a boarding house decreased the likelihood of readmission according to Cohen, Sichel, and Berger (1977) who studied the tenants in a boarding house established in 1971. The study examined the effect of living in the boarding house on admission rates. The authors found that the description of the housing seemed like a “hospital in the community”. Interestingly, it had a tenants’ council that was concerned with the boarding house’s conditions, work assignments, and staff–tenant relationships. Although staff members attended such meetings, tenants chaired the council.
40
Boarding houses seem to offer the least expensive housing and also offer privacy and a sense of community (Linhorst, 1991). Although Linhorst cautioned us not to romanticise boarding houses as they are often in poor condition, unsanitary and offer landlords the opportunity to exploit consumers. Posey (1990) argued that although boarding houses are popular in some areas the popularity is not with the residents, as they serve the needs of providers not the residents. They can offer good income to the providers while encouraging dependence and increasing the likelihood of abuse of the residents (Posey, 1990). 3.2.4.3 Lodges
This type of accommodation seems to offer full-time employment and some satisfaction with living in the community (Fairweather, Sanders, Maynard, Cressler & Beck, in Slaughter et al., 1991). 3.2.4.4 Community Group Homes
This type of housing includes relatively small community-based residences, adjusted for the gradient of support needs. The houses provide support with living skills and facilitate access to rehabilitation. They offer greater independence, which the residents find satisfying, greater opportunity to socialise with non-disabled people, higher levels of subjective wellbeing and higher levels of satisfaction (Sympson, Hyde & Faragher, in Slaughter et al., 1991).
41
Critics argue that group homes are no more than institutions in the community, they may be necessary for some consumers but must be timelimited (Posey, 1990; Trieman, 1997). 3.2.4.5 Living with parents
An estimated 50 to 80% of persons with schizophrenia and related psychotic disorders live with, or have regular contact with, a family caregiver (Gibbons, Horn, Powell, & Gibbons, 1984; Lehman & Steinwaches, 1998). These caregivers report high levels of burden related to caring for their family members (Gibbons et al., 1984). Demands of care-giving include paying for psychiatric treatment, supervision of a mentally ill family member, dealing with societal stigma associated with mental illness, and emotional distress that may result from symptoms of a family member’s illness. The level of burden experienced by caregivers of persons with schizophrenia is equivalent to that of caregivers of persons with other neurological (e.g. Alzheimer's disease, mental retardation) and physical (e.g., diabetes, cancer) disorders (McDonell, Short & Dyck, 2003; Pariante & Carpiniello, 1996). As a result of the high proportion of family members providing care to persons with schizophrenia and the high rates of burden reported by these caregivers, researchers have attempted to identify predictors of family burden and to design family interventions that reduce the negative consequences of caring for persons with schizophrenia. Families often play an important role in the lives of consumers. Posey (1990) argued this is unsuitable and that parents should not be expected to act as caregivers, that was not their role in the recovery process. Forcing people who have experienced mental illness to live with their families does 42
not promote family unity, but may actually act as a deterrent in allowing these consumers to take their rightful place in society. If a person wants to continue to live with their families the decision must be made with the free choice of all parties, not lack of options (Posey, 1990). 3.2.5
How consumers use their homes
A qualitative study of 25 deinstitutionalised men and women with a psychiatric disability and living in their own homes, found their activities at home varied but that home was a central area of life (Nikkonen, 1996). Most engaged in activities such as cooking, hobbies, and watching television. Many showed interest in the social commentary offered by television. For most, finances were a problem because of poor budgeting skills as a result of years of institutionalisation and meagre incomes. Nikkonen reported the participants in her study were not able to work and that many missed the satisfaction of work and the social contact it offered them. Most had regular contact with at least one relative but were shy in social situations. They tended to keep contact with other consumers mainly because of the shared experience of the disability. 3.3
Service delivery and housing
Deegan (1990) asserted that because of the way mental health services treat people they are dehumanising for both the consumers and the service providers and suggested that efforts be made to re-humanise these services. This can be achieved by using new models of service that empower rather than disempower people and allow them to make the contribution they are capable of making. 43
To be empowering, supported housing should comply with the community support and rehabilitation principles developed by Boston University Centre for Psychiatric Rehabilitation (Parrish, 1990). This philosophical approach embraces a vision of people with severe mental disorders succeeding in the community living situation of their choice through access to individualised, flexible services and supports. Parrish argued that, although this is a seemingly simple notion, it requires a fundamental shift in values and how mental health services operate. 3.3.1
Model for service delivery history of housing for consumers
In the past, consumers were placed in institutions and, unless they were quickly discharged, the institution became their home. From the 1950s to the 1970s there was a paradigm shift affecting deinstitutionalisation. A number of models were developed including halfway houses, Fairweather lodges, and family foster care; but mental health services did not develop a coherent overall model for mental health provision. The consequence was that most ex-patients were discharged to their families, to custodial boarding houses, nursing homes or left to fend for themselves. Over time a “continuum” paradigm developed where the services were offered at a number of different levels of restriction, with the most intensive being the most restrictive. In each level the plan was for the client to become stabilised and once their level of functioning had reached a certain level they graduated to a higher level. Finally the client reached the highest level and was moved out of the continuum to independent living status (Ridgeway & Zipple, 1990).
44
3.3.1.1 Consumer-focused housing: A challenge to graduated housing
This model of service delivery has been challenged by the families of consumers. They based this challenge on the success of services, such as crisis teams, delivering service to people in their own homes; the success of models from other fields, such as normalisation, from the intellectual disability field; and the large number of consumers in the homeless population (Ridgeway & Zipple, 1990). Ridgeway and Zipple argued that the limits of the “continuum” paradigm have become so acute that the stage is set for a paradigm shift in service delivery. According to Ridgeway and Zipple (1990) the elements of the paradigm shift include that: •
the need is for a home not a residential treatment setting
•
the opportunity for consumers to have choice and not be placed in accommodation
•
consumers have normal roles in the community such as tenant or householder rather than client or program resident
•
there is a shift in the locus of control from staff to consumer
•
there is social integration rather than groupings by disability
•
services are offered in a permanent setting rather than transitional settings
•
there are individual flexible services and supports
45
•
the focus is on achieving the most facultative, best functioning environment
rather
than
least
restrictive
environment
and
independence. Brown and Wheeler (1990) described a program that was client not servicedriven. The five components included that the program: •
helps people choose a place to live based on his or her values or interests, rather than placing them in a setting chosen by staff members
•
works with the person to identify the skills that are most critical to the individual consumer’s needs, rather than using a standard set of skills needed by most people
•
determines with the client what the barriers are to using his/her skills, rather than assuming that there is a problem requiring instruction
•
teaches skills and helps people practice them in real life situations rather than in an environment convenient to the trainer
•
provides support for as long as the person needs it, rather than a fixed schedule of decreasing support.
The authors believed that the process of engaging a client and building a relationship is the key to the program’s effectiveness. “People need homes not housing” (Hogan & Carling, 1992, p. 216) and therefore it is essential that consumers chose their own home. Hogan and
46
Carling suggested some guiding principles in choice of housing as including: •
housing must be the choice of the consumers
•
neighbourhoods should be chosen on their likely ability to assimilate consumers
•
the number of labelled residents in relation to the total residents should be limited
•
the appearance of the housing should be consistent with the neighbourhood.
3.3.2
Research that seems to contrast the above views.
In contrast to the previous literature, a transition housing project for veterans with a psychiatric diagnosis (Huffman, 1993) is claimed to have a very high (79%) success rate for the 86 clients of the service. Success was measured by levels of re-hospitalisation with 79% of the participants in the housing project not being readmitted. From its description, the housing sounds like a ward in the community with a structured program and limits on activities. In a similar supported accommodation project it was found that residents were unlikely to leave the supported accommodation in order to live independently. When psychiatric social work support was offered residents coped well in their independent accommodation (Gates & Nagy, 1990). These two studies seem to imply that some consumers find a high level of support and structure in their housing desirable.
47
3.4
Relevance of the paradigm shift to housing
3.4.1
Preferred housing
There have been a number of studies investigating the type of housing preferred by consumers. Yeich, Mowbray, Bybee and Cohen (1994) supported Carling’s (1990a) view that consumers preferred to live in homes of their choice with people with whom they wished to live. Yeich et al. completed a study into the housing preferences of consumers and used the Consumer Housing and Support Preference measure to collect quantitative data. The results indicated that most consumers had a strong preference for normal living situations, most wanted to live alone or with a partner, and most were opposed to living in supervised settings with other consumers. Yeich et al. also identified financial problems as being an important issue for the population in this study. In a qualitative study designed to explore participants’ perceptions of the home care provided by nurses, Morris (1996) found that one of the most highly valued aspects was the flexibility and negotiations in their treatment. A further study in Toledo found that, while most consumers were not dissatisfied with their supported accommodation, if given the opportunity 90% would move to independent housing and only 4% would choose supervised accommodation (Keck, 1990). In a series of studies on the preferences of people with psychiatric disabilities, Tazman and Yoe (in Carling, 1989) showed that nearly all respondents wanted their own housing and preferred home ownership and flexible services.
48
Every person has the right to participate fully in community life, Carling (1989) argued, he suggested some common principles for community participation. These included that all people belong in the community; people with disabilities should design and run their own programs; people with disabilities should be integrated into typical neighbourhoods; people with disabilities need to have ongoing social relationships; and that community integration means participation in community life. Carling (1993) reconfirmed some of his earlier work recommending housing should be based on the principles of consumer choice, integrated community housing, and flexible service delivery. Support services for consumers should include working with individuals to formulate their housing and support goals, financial assistance to obtain long-term stable housing, help in searching for an apartment and moving, assistance in managing money, participation in leisure activities, assistance with medication, ongoing monitoring of needs, crisis support and peer support. Future research should focus on promoting consumer choice and organising flexible services to help them succeed in the community (Carling 1993). 3.4.2
Rhetoric versus reality
A review of the literature on housing and community integration demonstrated that mental health services have tendencies to create “specialised” housing. This is in spite of the expressed need of consumers for normal housing—housing comparable to the other housing in the community (Carling, 1989).
49
Howie the Harp (1990)—a consumer of mental health services, coordinator of the Oaklands Independent Support Centre and a member of the board of directors of the Union of the Homeless and Dignified Housing West Incorporated—argued that consumers prefer to make decisions about their own lives. Based on his own experience and that of other consumers, Howie also argues that independence is valued highly. He explained that one of the main reasons homeless people chose to be homeless is that it offered them independence. With low incomes, common amongst consumers, the only way to maintain this independence is to live on the streets as most accommodation offered by mental health services is too restrictive. Howie the Harp’s view was that many people felt that independent living was the only lifestyle for them and any loss of freedom or selfdetermination was harmful. Whether one agrees with this or not is irrelevant, Howie argued, for as long as homeless consumers believed their self-determination was important they would continue to demonstrate their beliefs with their lives—by remaining homeless. Unfortunately, housing choice is not often available to consumers. Srebnik et al. (1995) conducted a study into the choice people had in their housing and their success in that housing. The participants were 115 consumers that the mental health services considered difficult to help. Two thirds of consumers reported they had only one choice of accommodation. Although consumers reported that choice was important to them, most (60.5%) felt that they had little or no choice and that decisions were mostly made by service providers. Results also indicated that consumer choice was
50
positively related to housing satisfaction, residential stability and psychological wellbeing. Srebnik et al. (1995) concluded that case workers were the main gatekeepers to increased choice in housing and they may benefit from training that encourages them to help consumers make choices. 3.4.3
Consumers’ choices in, and satisfaction with, housing
The relationship between self-efficacy and satisfaction with housing was investigated in a study by Seilheimer and Doyal (1996). The study used 125 participants who completed a Lehman QoL interview and a structured selfreport interview. Results demonstrated that self-efficacy was a strong predictor of satisfaction with housing. The study also supported the findings of Yeich et al. (1994) that consumers show a strong preference for independent living. While research is limited, a review of the literature on community support services found that, although consumers preferred to live on their own or with families, staff regarded group facilities as the best answer to their clients’ living needs (Anthony & Blanch, 1989). 3.4.4
Outcome of consumer choice in housing
A review of 43 studies of consumers’ preferences related to housing and support services confirmed that consumers consistently reported a preference to live in their own apartment or house with a spouse or partner and not live with other consumers (Tazman, 1993). The second (a distant second) preference was living with families, then group homes and boarding houses; the least preferred housing was hospital and being homeless.
51
Consumers also reported a strong preference for outreach staff that were available on call; few respondents wanted to live with staff. Consumers also emphasised the importance of material supports such as money, rent subsidies, telephones and transport for successful community living. Tazman concluded that services should be flexible with supports corresponding to the episodic nature of psychiatric disability, services should expand their advocacy for affordable housing, and there was a need for increased income for people dependent on disability benefits. Consumer-chosen housing can be successful and the success of some programs is largely attributed to the contribution of consumers. Pace and Turkel (1990) described a successful housing program that utilised a full and active collaboration among program participants. Participants included consumers, staff and volunteers. Most people lived in their own apartments or houses, some lived in shared accommodation with others from the project. 3.5
Housing and mental health in Australia
In Australia, the National Standards for Mental Health Services (National Mental Health Strategy, 1996) were developed to help achieve the National Mental Health Policy aim of making significant improvements in the treatment, care, and quality of life of Australians who suffer from mental health disorders and problems. Since its inception the National Mental Health Strategy has been committed to consumer participation in mental health. Standards 11.4 A and B address the rights of consumers to access to a range of treatment and support 52
programs that maximise their quality of community living. The focus of Standard 11.4.A is on developing the independence of the consumer. Standard 11.4.B focuses on accommodation and states “Supported accommodation is provided and/or supported in a way which promotes choice and maximum possible quality of life for the consumers” (p. 38). The criteria include: that the consumers are involved in the management of the facility; accommodation is clean and safe and reflects the preferences of consumers; consumers are offered the maximum opportunity to participate in the decision-making of the facility; there is a range of accommodation options. Unfortunately, lack of quality appropriate housing continues to be a major source of concern voiced by consumer and carer groups (National Mental Health Plan Steering Committee, 1997). 3.6
Research in Australia
There is limited research in Australia on housing for consumers, despite the commitment of governments to improving the standard of living of consumers. There is also a body of evidence indicating that housing makes a considerable contribution to the mental health of consumers. 3.6.1
Admission to hospital and housing
The participants in an inner city Sydney study into discharged clients were 99 consumers admitted to an acute care facility in central Sydney, following the relapse of a schizophrenic illness (Berger et al., 1997). The study investigated the course and consequence of the relapse at three intervals: on
53
admission, at two months and six months. Amongst other findings, the authors noted that many of the people were living in substandard or unstable accommodation. They concluded that a key determinant for the high rates of readmission for people with schizophrenia was the type of accommodation to which they are discharged. The authors recommended that people who were frequently relapsing needed to be offered supported accommodation to help maintain their quality of life. 3.6.2
Research into Boarding Houses
The Health Care Complaints Commission (1996) produced a critical report into medication in boarding houses in Sydney. They found that a large number of people were receiving very large doses of psychotropic medications and the level of psychiatric care was poor, as the staff of the hostels often had little insight into the needs of their clients. The report made a number of significant recommendations including that: •
the Royal Australian and New Zealand College of Psychiatrists and the Royal Australian College of General Practitioners develop protocols for prescribing psychotropic drugs
•
medical officers maintain reasonable records of treatment
•
the Aging and Disability Department enforce compliance with their licensing conditions in relation to administration, labelling and storage of drugs, consent to treatment and the maintenance of records
54
•
mental health services work towards developing training programs for boarding house staff.
The authors of this report concluded that, for case management to be successful, consumers must have an adequate income, a safe supportive living environment and personal supports (Health Care Complaints Commission, 1996). To investigate residents’ perceptions of their lives in boarding houses, Cleary, Woolford, and Meehan (1998) used semi-structured interviews to explore the experiences of 14 residents of seven boarding houses in Sydney. Results identified themes such as: residents’ perceptions of service; aspects of daily living, including money and routines; relationships which included difficulty with other residents; and perceptions of the future. The services were generally perceived as good and residents were happy with the food and staff. All residents preferred living in the boarding house when compared to hospital, although most participants spoke of experience of other boarding houses that were much less satisfactory. In terms of their aspects of daily living, some received help; there were routines in all boarding houses that limited personal freedom, and money (or lack of it) was an issue for almost all of the participants. Consumers’ relationships with other residents were sometimes strained because of theft, lack of privacy and aggression. The authors concluded that, although all the participants were positive about their present boarding houses, it was important to remember that this group had little control over their living circumstances and were therefore
55
disempowered. They could be asked to leave at any time without reason and there was a need for advocacy on their behalf. The researchers indicated that there was so much done for participants that they were unlikely to develop skills to be independent. Finally, the authors concluded that the boarding house industry had not kept pace with changes and care of consumers (Cleary et al., 1998). 3.6.3
Consumer-focused projects: some success in Australia
There have been some successful housing projects in Australia, as indicated in papers presented at the 1998 THEMES Conference that represented clinicians’ reports on their service. These reports supported the conclusions of Pace and Turkel (1990) that housing should meet the expressed needs of consumers and that consumers should have representation on all the decision-making bodies of the organisation. Key aspects addressed in these papers included: In one presentation a clinician reported on her experience of the importance and impact of housing in NSW and argued that it has been a neglected issue in Australia until recently. Many services did not consider long-term housing as their resources were consumed by trying to find short-term and crisis accommodation. Often long-term accommodation was not considered important by in-patient units (Barling, 1998). From rural Victoria, Broadbent (1998) argued that housing should meet the individual needs of clients as expressed by them and that housing services should be flexible and client focused. A report of a housing project in rural NSW emphasised the importance of having consumers as major contributors to the decision-
56
making process in housing (Budin, 1998). This, argued the author, was one of the keys to the success of the project. 3.7
Summary
The old established institutions provided accommodation and many on-site amenities. More recently, institutions have become less restrictive and more interactive with the community. However the literature strongly supports the view that consumers do better on all measures if they live in communitybased accommodation. Quality affordable housing is critical to recovery of consumers. Large studies have demonstrated that the quality of housing is more important to consumers’ wellness than the availability of mental health services. The contribution of housing is unmistakable; when consumers moved from good to poor housing their mental health deteriorated, when they moved from poor housing to good housing their mental health improved (Baker & Douglas, 1990). Most people prefer to make decisions about their own lives—this is also true of consumers. In studies of consumer housing preferences, findings invariably determine that most consumers have a strong preference for normal living situations that they chose, most want to live alone or with a partner, most were opposed to living in supervised settings with other consumers. Not only do consumers prefer this type of housing, when they have it they seem to have fewer symptoms, use less medication, have a better quality of life and are less likely to be admitted to hospital.
57
Quality affordable housing is one of the most important aspects of community support services for people with long-term mental illness. Without the availability of quality affordable housing other treatment and rehabilitation approaches are jeopardised. In Australia, state governments are committed to offering quality community based mental health services. Housing has been identified as a critical element of quality community-based services (National Mental Health Strategy, 1996). Unfortunately, lack of quality appropriate housing continues to be a major source of concern voiced by consumer and carer groups (National Mental Health Plan Steering Committee, 1997). There is limited research in Australia on housing for consumers in general, despite the commitment of governments to improving the standard of living of consumers. Whilst research into the impact of consumers is limited, there is even less on the particular needs of people with schizophrenia (see Appendix 1 for further details on housing in Australia, especially the Gold Coast).
58
CHAPTER 4 PEOPLE WITH SCHIZOPHRENIA
Estimates of the incidence of schizophrenia generally range from 0.2% to 2.0% of the population. There is variation in the reported prevalence of schizophrenia due to different methods of data collection and different definitions of schizophrenia. Prevalence across the world tends to be similar and it is generally accepted that the lifetime prevalence of schizophrenia is between 0.5 and 1% of the population. Schizophrenia tends to be a chronic condition, so incidence rates are considerably lower than prevalence rates and are estimated to be approximately 0.01% of the population (American Psychiatric Association, 1994). In Australia, between four and seven persons per every 1000 adults resident in urban areas (a weighted mean of 4.7 per 1000) are in contact with mental health services during any given month because of symptoms of a psychotic disorder. Schizophrenia and schizoaffective disorder account for over 60% of the prevalence of psychotic disorders (Jablensky, McGrath, Herrman, Castle, Gureje, Morgan, & Korten, 1999). In Australia, the MH-CASC (1996) project estimated that approximately 38% of people receiving mental health care in the community from specialised mental health services had a principal diagnosis of schizophrenia. This was the largest diagnostic group of people receiving care from publicly funded mental health services.
59
4.1
Experience of having schizophrenia
People with schizophrenia respond differently to stress, compared to the rest of the population (Keltner et al., 1999). An essential feature of schizophrenia is the inability to interpret reality in the same way as the nonschizophrenic
population.
According
to
the
American
Psychiatric
Association people with schizophrenia suffer from both positive and negative
symptoms.
Positive
symptoms
include
delusions
and
hallucinations—resulting in disorganised thinking, speech, and behaviour. Negative symptoms include restricted or inappropriate emotional responses, thinking and speech; as well as a lack of volition and inability to initiate goal-directed activities. These symptoms of schizophrenia are associated with marked social and occupational dysfunction (American Psychiatric Association, 1994). As a result of their illness people with a diagnosis of schizophrenia have difficulty maintaining many of the essential life roles and resources that most people take for granted. These essential life roles and resources include satisfactory, stable and independent housing and relationships of any kind, but specifically close interpersonal relationships. This loss of life roles and resources impacts seriously on the mental health of people with schizophrenia. An Australian national study investigated the experience of 980 people who attended mental heath services and were living with a psychotic disorder. Of this group 45% were accommodated in institutions, hostels, group homes, other supported housing or crisis shelters, or were homeless within a month
60
of being interviewed. The authors concluded the majority of people with psychotic disorders interviewed in their study had lost essential life roles that normally provided an individual with a sense of self-esteem and meaning (Jablensky et al., 1999). As well as difficulties with housing, people with schizophrenic disorders have very severe difficulties maintaining intimate relationships, making and maintaining social relationships and functioning in everyday social situations. They complain that loneliness and social isolation is a daily reality for many people with psychotic disorders (Jablensky et al., 1999). People with schizophrenia who live in marginal accommodation represent a group with special needs. Many of them have no regular contact with the specialist mental health services. Jablensky et al. (1999) argued that many of the services for people with a psychotic disorder tended to be crisis response-based and only a minority attained a level of functioning and wellbeing commensurate with good quality of life. Adequately meeting their multiple needs, including housing, is likely to have much greater impact on the course of their disorders and social adjustment than the present service provision. 4.2
Housing and schizophrenia
4.2.1 Preferences Studies into people with schizophrenia’s preferences indicate that most desire independent housing in the community (Hansson et al., 1999; Seilheimer & Doyal, 1996). There is evidence that, like other consumers
61
(and the rest of the community), people with schizophrenia have a better quality of life and maintain better mental health if they live in decent housing (Kirkpatrick et al., 1996). In a study in the USA, 85 people with schizophrenia were compared to assess their psychotic and depressive symptoms. The participants were dichotomised into groups on the basis of dwelling status: those living independently (n=35) and those living in residential settings (n=50). The groups were compared with regard to scores on the Mini-Mental State Examination (MMSE), the Brief Psychiatric Rating Scale, the Scale for the Assessment of Negative Symptoms (SANS), and the Geriatric Depression Scale, and by age. Participants living independently had significantly better MMSE and SANS scores, thus they had fewer symptoms, more motivation and better level of functioning (Gupta, Steinmeyer, Bradford, Lockwood, Lentz, Schultz, 2003). Unfortunately in Australia, Berger et al. (1997) found that many people with schizophrenia often lived in substandard and unstable accommodation. Berger et al. concluded that a key determinant for the high rates of readmission for people with schizophrenia was the type of accommodation to which they were discharged (1997). For many people with schizophrenia an important part of their recovery is independent living in their own home. Attaining this goal requires successful interaction with community agents, normally estate agents. As many members of the general public hold stigmatising attitudes about the mentally ill (Martin, Pescosolido & Tuch, 2000), evidence of psychiatric
62
disability during an initial interview may compromise an applicant's residential prospects. 4.2.2
Consequences of different types of housing
Although there is limited research in this area, there is a body of literature that argues that, like other consumers, people with schizophrenia living in good quality accommodation perform better on measures of mental health than people in poor quality accommodation. The literature varies on its definition of quality accommodation but the overall message is clear—that the quality of accommodation contributes to a person with schizophrenia’s mental health. A Swedish study investigated the relationships between characteristics of the living situation in the community and subjective quality of life and social network among community-based individuals with schizophrenia. A total of 418 individuals with schizophrenia from 10 sites were interviewed with regard to quality of life, psychopathology, social network and need for care. Characteristics of the living situation investigated included whether they were living alone or not, living with family or not, and having an independent or a supported housing situation. Results indicated an independent housing situation was related to a better quality of life. An independent housing situation was also associated with a better social network and the availability of emotionally satisfying relationships. The authors concluded that people with schizophrenia living in independent housing have a better quality of life. This better quality of life is associated with favourable perceptions of independence, feelings of empowerment and
63
privacy. Their social network was better, irrespective of whether they lived alone, with family or with friends (Hansson et al., 1999). In Sweden psychiatric reform came into force in 1995 and aimed to improve the living conditions of people with a psychiatric disability. One study evaluated the impact of the reform by investigating quality of life and standard of living two years after this reform in a randomly selected group of people with long-standing schizophrenia and mood disorders. Self-ratings and interviews were conducted in a study group and a control group. The study group consisted of 19 women and 18 men (aged 24–74 years) diagnosed with schizophrenia or a mood disorder. The control group consisted of 19 women and 17 men (mean age 48.7 years). The authors found a strong association between self-rated quality of life and the quality of housing, in that the poorer the housing the poorer the reported quality of life (Carlsson, Frederiksen & Gottfries, 2002). A further study explored the experiences of 99 people with a diagnosis of schizophrenia who were admitted to acute care facilities following the relapse of their illness. The study investigated the course and consequence of the relapse on admission, at two months and six months. Amongst other findings, the authors noted that many of the people were living in substandard accommodation that was often unstable. They concluded that a key determinant for the high rates of readmission for people with schizophrenia was the type of accommodation to which they are discharged (Bergen, et al., 1997).
64
Cleary, Woolford and Meehan (1998) studied people with schizophrenia’s experience of living in boarding houses, they concluded that although all the participants felt positive about their present boarding houses, it was important to remember this group had little control over their living circumstances and this contributed to a feeling of disempowerment. 4.2.3
Ideal housing
Research discussed previously identified that consumers prefer to select and live in private housing with people with whom they choose to live; people with schizophrenia are no different. In Taiwan, a quasi-experimental longitudinal study explored people with schizophrenia’s experience of housing. The authors examined the differences in the quality of life experienced in government hospital-funded halfway houses and in the homes (the person’s own home) of 60 people diagnosed with chronic schizophrenia. They applied a quality of life scale to each person at twomonthly intervals over an eight-month period. The results showed that the quality of life of participants living in their own home was significantly higher than those in halfway houses. The dimensions of independence and social activity in quality of life also showed significant differences between these two groups, with the participants in their own home scoring better in both domains (Shu, Lung, Lu, Chase & Pan, 2001). 4.2.4
Housing and independence and social functioning
Dickerson, Ringel and Parente (1999) conducted a study to identify factors that predict the degree of residential independence among outpatients with schizophrenia. Seventy-two outpatients with schizophrenia (mean age 42.1 65
years) were assigned to one of the following three groups based on their degree of residential independence: living in their own residence without supervision for at least two months, direct on-site supervision for more than six hours a day, and intermediate. The three groups were compared on three measures of social functioning, on a positive and negative symptom scale, and on a battery of neuropsychological tests. Participants’ degrees of residential independence were related to their frequency of family contact, hygiene skills, relative absence of negative symptoms, and participation in social activities. The authors concluded that social functioning was significantly associated with participants’ independent living status. 4.3
Substance abuse
Substance abuse has emerged as a significant obstacle to the effective treatment of persons with schizophrenia (Blanchard, Brown, Horan, & Sherwood, 2000; Siris, Addington, Azorin, Falloon, Gerlach & Hirsch, 2001). Estimates of the level of drug use vary, but almost half of people with schizophrenia may suffer from a co-morbid drug or alcohol disorder. People with schizophrenia who abuse substances tend to have an earlier onset of their illness (Dixon, 1999). In an Australia-wide study, people with psychotic disorders reported at interview their rates of smoking, alcohol abuse or dependence, and drug abuse or dependence to be far in excess of the rates found in the general population (Jablensky et al., 1999). Individuals with schizophrenia who abuse substances have been found to suffer serious adverse consequences (Drake & Mueser, 2000). In a study of people with schizophrenia, Dixon (1999) concluded that substance abuse
66
was associated with a variety of poor outcomes such as increased psychotic symptoms, poor treatment compliance, violence, housing instability and homelessness, medical problems (including Human Immunodeficiency Virus), poor money management, and greater use of crisis-oriented services. Other studies have shown people who abuse substances are at high risk of depression, and suicidal ideation and behaviour (Blanchard et al., 2000; Fenton, McGlashan, Victor, & Blyler, 1997; Siris et al., 2001). In a study investigating the predictors of management problems among residents of a supported single room occupancy hotel (SRO) for persons with severe and persistent mental illness (SPMI), questionnaires were used to elicit the views of caseworkers. The results indicated that residents without drug abuse were rarely disruptive, while those with co-morbid substance abuse were often disruptive (Grunebaum, Aquila, Portera, Leon & Weiden, 1999). 4.4
Schizophrenia and relationships
For people with schizophrenia there is evidence that the illness impacts on their social functioning and therefore the social support they receive from friends and relatives. Unfortunately, little is known about the role of environmental factors in social relationship dysfunction for people with schizophrenia. In a National Alliance for the Mentally Ill (NAMI) survey, the highest levels of unmet needs for persons with schizophrenia were reported for the social function domain of intimate relationships and friendships (Uttaro & Mechanic, 1994).
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4.4.1 Relationships and quality of life Difficulty in the area of social relationships is an important quality of life issue for people with schizophrenia. Relative to the general population, these individuals have a paucity of social ties (Cohen & Sokolovsky, 1978; Erickson, Beiser, Iacono, Fleming & Lin, 1989; Meeks & Murrell, 1994; Pattison, DeFrancisco, Wood, Frazier & Crowder, 1975; Tolsdorf, 1977) as well as a lower likelihood of having reciprocal and multipurpose relationships (Cohen & Sokolovsky, 1978; Lipton, Cohen, Fischer & Katz, 1981). Furthermore, people with schizophrenia are less satisfied with their social relationships than are most people without mental illness (Huxley & Warner, 1992; Lehman & Steinwachs, 1982) and have high rates of loneliness (Brown, 1996; Gerstein, Bates & Reindl, 1987). Indeed, the clinical and first person literature in this field indicates that many of these people fervently desire social contact and experience anguish over the loss of social bonds following the onset of their mental illness (Davidson & Stayner, 1997). Feelings of isolation, loneliness and disaffiliation were commonly found among persons with schizophrenia, and significantly diminished their satisfaction and quality of life (Bengtsson-Tops & Hansson, 1999). While it is known that patients’ social networks tend to diminish over time, the factors accounting for this outcome are not well understood (Heinssen & Cuthbert, 2001; Mueser & Farrier, 1998). Studies that focus on the life circumstances and quality of life of individuals with schizophrenia have highlighted that a great proportion have few
68
contacts with friends (Hansson et al., 1999; Harvey, 1996) and are at risk of becoming isolated in a community-based service system (Honkonen, Saarinen & Salokangas, 1999). Furthermore, social contacts have emerged as one of the most common quality of life domains in which people with schizophrenia express dissatisfaction (Skanze, Malm, Dencker, May & Corrigan, 1992). Unmet needs in the domain of social relationships have also shown to be negatively related to subjective quality of life (BengtssonTops & Hansson, 1999). Bengtsson-Tops and Hansson (2001) undertook a study of 120 people with schizophrenia in Sweden. The study investigated the relationship between the participants’ social networks, their quality of life, their psychiatric symptoms and their social functioning. The authors concluded that people with schizophrenia had a poor level of social integration. The participants in this study reported a worse social network in all dimensions than a control group. A great proportion of the participants were not satisfied with their social contacts and stated a need for more social contacts in their daily life, more friends who would visit their home, more persons they could turn to if they had problems or needed to borrow things. They reported no access to friends with whom they could share happiness, feel confidence or appreciation. These results support the findings by Clinton, Lunney, Edwards, Weir and Barr (1998) whose research explored the social network and community adaptation of people with schizophrenia. Clinton et al. reported people with schizophrenia expressed a need for more social contact.
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Social functioning was used in an American study to investigate the experiences of people with schizophrenia. The study aimed to describe, from the participants’ perspective, their experience of schizophrenia. The authors concluded that social functioning was critical to the health and quality of life of people with schizophrenia and that health services neglected this area (McDonald & Badger, 2002). In a further Swedish study Bengtsson-Tops & Hansson (2001) concluded there was a clear positive association between satisfaction with social contacts and subjective quality of life and reduction in symptoms—an increased level of satisfaction with social contacts was positively correlated to a better quality of life and better mental health. 4.4.2
Relationships and mental health
If people with schizophrenia have positive, supportive, reciprocating relationships then their quality of life is better. Unfortunately, as discussed previously, people with schizophrenia have difficulty with relationships. The consequence of these difficulties with relationships is often an exacerbation of the symptoms of their illness. It appears that, like the rest of the community, people with schizophrenia need their friends and relatives to help them maintain their mental health. A longitudinal study of 87 people with schizophrenia found they experienced a significantly worse social networks than people without a diagnosis of schizophrenia, and that this was associated with an increase in positive and negative symptoms and decrease in their quality of life. The authors concluded that care and support systems should focus on
70
interventions that make it possible for the people with schizophrenia to enhance their satisfaction with social contacts (Angell & Test, 2002). Marley (1998) conducted structured interviews with 54 inpatients in a residential facility in Chicago in the USA. The aim of the study was to explore the subjective experience of interpersonal interactions in people with schizophrenia. The findings suggested that, in this group of people with schizophrenia, negative social interactions were associated with an exacerbation of their psychotic symptoms. These negative social interactions were normally arguments with other residents of the facility, irritation with other residents, or fear of property being taken. The participants reported that when they were experiencing a mild psychotic episode they felt better when they had a positive supportive social interaction. In a study into the impact of work on symptoms in people with schizophrenia, Angell and Test (2002) found that loss of social supports was associated with an increase in positive symptoms such as hallucinations and delusions. 4.4.3
Relationships and hospitalisation
The link between interpersonal relationships and mental health impacts on the likelihood of hospitalisation and, if people with schizophrenia have supportive social relationships, their mental health is maintained and they are less likely to be admitted to hospital. If the social support is lacking, the likelihood of an exacerbation of their illness is increased and so is the likelihood of hospitalisation. The hospitalisation can add to the stigma of 71
their illness, isolate them from the community and damage their friendships and ability to maintain supportive social relationships (Kaiser, 2000). Positive social function has been found to decrease hospitalisations and shorten lengths of stay for persons with schizophrenia (Lehman & Postrado, 1995). Poor social function has been found to increase health care costs and decreased consumers’ satisfaction with services and treatment (Angell & Test 2002; Covington & Cola, 2000: McDonald & Badger, 2002; Lehman & Postrado, 1995; Uttaro & Mechanic, 1994). If people with schizophrenia have support and develop and maintain their social skills and social networks, their symptoms are less severe and more manageable (Marder, Wirshing & Mintz, 1996). People with schizophrenia often lose social functioning and this increases their likelihood of relapse and readmission (Liberman, 1994; Penn & Mueser, 1996). The importance of social functioning is underscored by research demonstrating that the efficiency of social problem solving and density of one's social network predicted likelihood of relapse (Penn & Corrigan, 2001; Sullivan, Marder, Liberman, Donahoe, & Mintz, 1990). Studies have shown that ongoing supportive relationships that demonstrate warmth, empathy, and genuine concern are beneficial to people with schizophrenia in helping them stay well (Rogers et al., 1967) and to have positive expectations for realistic improvement and hope for the future (Frank, 1981). In addition, a supportive relationship can enhance a person with schizophrenia’s sense of self-control and self-direction (Liberman, 1994).
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In an Australian national report on people with mental illness, social support was found to be a protective factor for people with schizophrenia. A risk factor potentially influencing the development of mental health problems and mental disorders was that of inappropriate or inadequate housing. A key public policy was the provision of suitable housing for people at risk of developing mental health problems (Commonwealth Department of Health and Aged Care, 2000). The report concluded that this lack of suitable housing would have a negative impact on people with schizophrenia and their ability to maintain supportive relationships and therefore their mental health would be at risk. 4.4.4
Relationships and housing
In general, research suggests that the living environment of the person with schizophrenia influences social relationships (Angell & Test, 2002). For example, several studies suggest there is a relationship between hospitalisation and the breakdown of social networks (Holmes-Eber & Riger, 1990; Lipton et al., 1981). Within institutional settings studies have shown that supportive, low-expectation living environments are associated with greater development of social ties within the facility, but not outside the facility (Denoff & Pilkonis, 1987; Segal & Holschuh, 1991). Homelessness is associated with having fewer social contacts (Lehman & Postrado, 1995) but less is known, however, about the effects of normative, independent living situations on social relationship (Angell & Test, 2002). Relationship difficulties are central to many community integration problems encountered by persons with schizophrenia. Interpersonal
73
discomfort and disability often limit residential opportunities and, in turn, this can exacerbate communication difficulties, loneliness, and diminish quality of life (Heinssen & Cuthbert, 2001). It is well known that illness characteristics such as psychosis, negative symptoms, and cognitive deficits can contribute to these social dilemmas. However, these features are not the sole determinants of a person with schizophrenia’s social competence, they interact with social and interpersonal variables to hinder the relationship process (Heinssen & Cuthbert, 2001). Consistent with the theoretical underpinnings of this thesis (see Chapter 2) the Glaserian approach to grounded theory was chosen. 4.5
Summary
People with schizophrenia make significant demands on mental health services. They are the largest diagnostic group serviced by public mental health services in Australia. Schizophrenia is a severe and disabling illness that not only affects the individual’s capacity to interpret reality but can also impact on the ability to maintain resources (including housing), as well as meaningful relationships that help maintain quality of life to the rest of us. Difficulty maintaining good quality independent housing is also a problem for people with schizophrenia. The literature identifies a lack of quality housing for people with schizophrenia as a significant area of concern. Living in poor quality housing increases the likelihood of hospitalisation. People with schizophrenia also have difficulties with relationships, including making and maintaining satisfying, supportive, reciprocating
74
relationships. This type of relationship is critical to most people’s mental health; if people with schizophrenia do not have that support they are more likely to be hospitalised as a result of their illness. 4.6
The study
4.6.1
Purpose of the study
In Australia many people with schizophrenia are discharged to their own private homes with their families or friends. Those who have not maintained their own accommodation whilst in hospital may have no other option but to move into privately-owned public accommodation such as boarding houses or hostels, with other consumers. As discussed previously, these types of accommodation can often restrict freedom and be exploitative (Linhorst, 1991; Posey, 1990). Consumers consistently indicate they want to live in their own homes with friends or family. They do not want to live with other consumers and want control of their lives. The literature previously discussed clearly indicates when consumers lived in their chosen homes they have fewer admissions and reported being happier with their lives. When they lived with other consumers in accommodation that did not promote their independence and autonomy they had an increased number of admissions and reported being less happy with their lives. It is timely that an Australian study was undertaken to investigate the impact of living in different types of housing on people with schizophrenia. The impact needs to be ascertained in terms of the impact on admission rates and
75
the general mental health of people with schizophrenia—such as symptoms and level of functioning.
4.6.2
Importance of the study
This study aims to make a contribution to the body of knowledge about, and help to improve, the lives of people with schizophrenia. This requires a strong argument to be presented that will influence decision makers. To be consistent with public policy the literature and the author’s own philosophy on consumer participation in mental health service delivery, the views of consumers also need to be represented. 4.6.3
Contribution of the study
It is envisaged that this project has the potential to influence and to improve the infrastructure development of accommodation services for people with schizophrenia. Locally, the communities involved in the project will benefit as services make use of project findings. 4.6.4
Research question
What is the impact of housing on people with schizophrenia?
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CHAPTER 5 METHODOLOGY
5.1
Introduction
The initial decision about the design of a project needs to be a personal one, based around the researcher’s basic beliefs (Guba & Lincoln, 1998) about what is being investigated. These decisions help in the choice of an inquiry paradigm. The decision needs to be based on three questions: the ontological question, the epistemological question and the methodological question (Guba & Lincoln, 1998). The answers to these questions guided the choice of method used in the project. The author’s aim with this study was to make a contribution to the delivery of mental health services. Achieving this aim meant producing a work that could make a difference and improve the lives of people with schizophrenia. For a long time, people with schizophrenia have had very low status in the community. Their status has been so low that their opinions and views have not been considered, by either the community at large or the mental health professionals. Even consumers’ views on themselves and their mental illness have been ignored (Burdekin et al., 1992; National Mental Health Strategy, 1994b) and if they disagreed with a mental health professional their views have sometimes been considered part of their illness. It is important for consumers’ views to contribute to our understanding of mental health care delivery.
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The post positivist paradigm exercises hegemony over the critical and constructivist’s paradigm (Guba & Lincoln, 1998) and the post positivism approach allows for a variety of methods in research. Thus, a study informed by post positivism that used quantitative data from a credible source and qualitative data exploring the views of consumers, could make a valuable and influential contribution. Therefore, grounded theory as a research strategy, situated in the post positivist paradigm, was chosen for this study. 5.2
Grounded Theory
A general discussion on grounded theory is presented in this section, however, further details on how it was used can be found in the published articles in the following chapters. Grounded theory, as a research strategy, aims to generate theory from data that have been methodically obtained from the real life setting. Grounded theory is more than a method of data analysis; it is an entire approach to the conduct of field research (Polit & Hungler, 1993). The process allows the exploration of data to discover basic social and psychological processes operating within the area of inquiry (Carter, cited in, Cormack, 1996). Grounded theory was developed and described in 1967 by Glaser and Strauss in The Discovery of Grounded Theory. The book had three purposes: (a) to offer a rationale for the development for theory that was based or “grounded” in the data collected during the project, (b) to argue the logic of the method, and (c) to legitimate the qualitative research. Its
78
originators and their students in studies of diverse phenomena (Strauss & Corbin, 1998) have adapted grounded theory. Symbolic interactionalism and the Chicago School of Sociology influenced the original method. Grounded theory placed an emphasis on exploring phenomena in a real world context. It placed an emphasis on the examination of micro rather than macro aspects of interactions (Grbich, 1999). Although much of the original research using grounded theory was done by sociologists, the strategy has been adopted by nurses and researchers from other fields using the procedure alone or in combination with other methodologies (Glaser, 1992). The notion of simultaneous data collection and analysis is central to grounded theory. The integration of data collection and analysis means that induction, deduction and verification are used together. Thus a thesis is developed to explain a phenomenon and the thesis is then tested and verified (or not). This is an ongoing process in grounded theory studies (Glaser 1978, 1992; Glaser & Strauss, 1967). To test a proposition or thesis the researcher looks for cases that corroborate or dispute the proposition (Glaser 1978, 1992; Glaser & Strauss, 1967). In grounded theory studies the researcher will be simultaneously observing, collecting and organising data, developing and testing theory. Data may include transcripts of interviews, observations, records or a combination of these. The outcome is a theory explaining the phenomena of interest (Dick, 2000).
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5.2.1
Axial Coding Controversy
The current debate regarding grounded theory has occurred since the publication, in 1990, of Basics of Qualitative Research, by Strauss and Corbin (1990). Many of the ideas in the book have been criticised because of the seemingly contradictory perspectives of Strauss and Corbin (1990) to the original assumptions of grounded theory (Glaser & Strauss, 1967). In response to Strauss and Corbin's (1990) publication, Glaser published Basics of Grounded Theory (1992), which criticised Strauss and Corbin’s approach for being more about conceptual description than emergent theory. The essence of the debate seems to be around the use of axial coding. Both Glaser (1978, 1992) and Strauss and Corbin (1990) described coding as an essential aspect of transforming raw data into theoretical constructions of social processes. Glaser distinguished two types of coding processes, substantive (open) and theoretical, and Strauss and Corbin described three types of coding processes: open, axial, and selective. Glaser (1978) described substantive (open) coding as a way to “generate an emergent set of categories and their properties which fit, work and are relevant for integrating into a theory” (p. 56). Strauss and Corbin (1990) define open coding as “the process of breaking down, examining, comparing, conceptualising, and categorising data” (p. 61). The approaches to open coding are similar, although Glaser places more emphasis on the importance of allowing codes and theoretical understandings of the data to emerge than do Strauss and Corbin. Therein lies the difference between the 80
two approaches. Glaser argues that axial coding forces the views of the researcher onto the data, whereas the theory should be allowed to emerge from the data (1992). Although grounded theorists acknowledge that codes and categories are selected by the investigators’ interpretations of the data; according to Glaser (1992), emergence is the process by which codes and categories of the theory fit the data, not the process of fitting the data to predetermined codes and categories. Glaser (1978, 1992) described the process of emergence as generating codes and categories directly from the data; codes and categories are not selected prior to data analysis, and they are often labelled from words found in the data themselves. According to Glaser (1978), data should not be viewed through a predetermined framework, but rather data interpretation and category development are driven by conceptual concerns in the data. The main difference between the two approaches occurs with Strauss and Corbin’s addition of an intermediary set of coding procedures, called axial coding. Axial coding is defined by Strauss and Corbin (1990) as “a set of procedures whereby data are put back together in new ways after open coding, by making connections between categories. This is done by using a coding
paradigm
involving
conditions,
context,
action/interactional
strategies, and consequences” (p. 96). Glaser (1978) insists that the codes used and the labels placed on the codes should be driven by conceptual interests that have emerged from the data and not “forced” into any particular scheme. Glaser (1978) emphasised that
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it is important to let the conceptualisation lead the analysis. In this way, analysis and interpretation are assured of being grounded in the data, and the researcher does not see only what will fit into a predetermined conceptual plan. Glaser’s insistence on the need for emergent conceptual analysis is different from the grounded theory method of Strauss and Corbin (1990). The concept of emergence is an underlying guiding principle of grounded theory research and allowing processes, concepts, and interactions to be seen by the analyst before applying an organising framework more accurately captures the social, psychological phenomena being studied. This is the process of emergence and is a methodological requirement for generating grounded theory (Glaser, 1978, 1992). Strauss and Corbin (1990), by contrast, generate codes and theoretical relationships between codes and categories from a predetermined organising schema that they claim helps grounded theory researchers construct complex and meaningful theory more reliably. Glaser (1992) labelled Strauss and Corbin’s use of axial coding “conceptual description”, claiming they had strayed too far from the underlying principles of grounded theory to call it grounded theory. Consistent with the theoretical underpinnings of this thesis (see Chapter 2) the Glaserian approach to grounded theory was chosen. 5.3.
Summary
The decision about methodology depends on the research question and the aims of the research. The author wishes to make a contribution to mental health services and influence the delivery of mental health care, especially 82
in relation to accommodation, whilst including people with schizophrenia in the research process. To have that influence a study needs to offer conclusions drawn from verifiable data. A study that includes consumers needs to offer them opportunity to have direct input into the research process, that means not only the opportunity to describe the phenomena as in an phenomenological or ethnographic study, but to also take part in the interpretation of the data.
5.4
Objectives of the study
5.4.1
Aims of study
This study aimed to investigate the impact of different types of accommodation (private homes and boarding houses) on the mental health of people with schizophrenia. 5.4.1.1 Stage 1
To investigate the relationship between the type of housing to which consumers were discharged, their readmission rates, length of stay and patterns of illness as described by the severity of their symptoms and their level of functioning. Severity of symptoms was measured using the Health of the Nation Outcomes Scale (HoNOS); level of functioning was measured using a shortened version of the Life Skills Profile (LSP 16). 5.4.1.2 Stage 2
The second objective was to explore people with schizophrenia’s experience of living in two different types of accommodation: boarding houses and private homes. The experiences of participants were used to develop a 83
theoretical understanding of the relationship between housing and the mental health of people with schizophrenia. 5.5
Study design
This
study
used
a
combination
of
qualitative
and
quantitative
methodologies. Using more than one method to investigate a research question enhances the credibility of the findings (Carter, cited in Cormack, 1996; Robson, 1993) and improves the understanding of the phenomena by adding depth to the study (Denzin & Lincoln, 1998). The strategy of using qualitative data not only adds depth but it also offers people with schizophrenia a voice in the study and allows the opportunity to develop theoretical explanations of the phenomenon (Guba & Lincoln, 1998). The study was undertaken in two stages. Stage one consisted of a quantitative analysis of archival data on people with schizophrenia. Stage two consisted of a qualitative exploration of individual experiences of 13 people with schizophrenia who had been discharged to either their own home or to a boarding house. Stage two used a grounded theory approach to develop a theoretical explanation of the phenomenon. 5.4.1
Stage 1: Quantitative archival data
Queensland Health routinely collects data for administration purposes using the Hospital Based Corporate Information Systems (HBCIS). The Commonwealth Department of Health and Family Services undertook a study called the Mental Health Classification and Service Costs Project (MH-CASC) that examined the costing of mental health services. These
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data sets have not been analysed for the purpose of recovering information on people with schizophrenia and housing. This study will use these data sets to test the research hypotheses. 5.5.1.1 Hypotheses
It was expected that people with schizophrenia discharged to boarding houses would be significantly more likely to be re-admitted to hospital than people discharged to a private home, and that discharge accommodation would have little influence on time spent in hospital. It was also expected that consumers living in boarding houses would have significantly more severe symptoms and a lower level of functioning than those living in private homes. For the initial stage of the project archival data was used to investigate the relationship between types of accommodation readmission rates, length of stay in hospital and illness patterns of people with schizophrenia. The analysis of the archival data gave an indication of the consequences of living in different types of accommodation. Thus, the hypotheses for stage 1 of the project were: •
Admission rates will be significantly different for people with schizophrenia who are discharged to a private home when compared to those discharged to a boarding house.
•
Length of stay in hospital will not be significantly different for people with schizophrenia discharged to a private home when compared to those discharged to a boarding house.
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•
Symptoms, as measured by scores on HoNOS scale, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house.
•
The level of functioning, measured using an LSP 16, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house.
5.5.1.2 Archival data sets
De-identified archival data sets were used for stage 1. The data sets included the HBCIS data set and the MH-CASC data set. The HBCIS data set was used to investigate hypotheses 1 and 2, the MH-CASC data set was used to investigate hypotheses 3 and 4. 5.5.1.3 HBCIS
HBCIS is a Queensland Health database that collects a wide range of data on people with schizophrenia who are/were in-patients of public hospitals in Queensland. It includes length of stay, the number of admissions to hospital, and type of accommodation to which patients are discharged (see Table 5.1). The HBCIS data used in this study included data from May 1995 to November 1998 for the two in-patient psychiatric units at the Gold Coast Hospital (for details on the Gold Coast see Appendix 1).
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Table 5.1
Frequency Distribution for Accommodation in the HBCIS Data Set Type of accommodation Private home
Count 1933
Retirement village independent unit
26
Boarding house
144
Psychiatric hospital
5
Acute hospital
16
Other
74
No usual residence
71
5.5.1.4 MH-CASC
MH-CASC was a federally funded project that collected data on contacts made between consumers and mental health professionals at 21 sites throughout Australia during three months at the end of 1996. Although the MH-CASC project focused on costing of mental health services data on accommodation (see Table 5.2), symptoms and level of functioning data were also collected. The project team produced a number of data sets which presented the data in different ways; in this study the Adult3M data set was used. Each entry in the Adult3M data set represented one patient receiving care from an adult mental health service.
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Table 5.2
Frequency Distribution for Accommodation in the MHCASC’s Adult3M Data Set
Type of Accommodation
Count
Missing
98
None
70
Private flat/house
3033
Special residence support service
272
Special accommodation
142
Boarding house
201
Nursing home institution
291
Caravan
46
Unknown
285
5.5.1.5 Instruments used in the MH-CASC Study
The instruments used in the MH-CASC study included the Health of the Nation Outcomes Scale (HoNOS) and a shortened version of the Life Skills Profile (LSP 16). These data provided a quantitative account of levels of functioning and severity of symptoms of people with schizophrenia. 5.5.1.6 HoNOS
HoNOS was developed in the United Kingdom and is considered amongst the most suitable instruments for measuring consumer outcomes in mental health services (Andrews, Peters & Teeson, 1997; Coombs & Meehan, 2003). The scale was designed to be filled in by clinicians and consists of 12
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items which measure the severity of problems commonly presented by people with schizophrenia (see Table 5.3). Table 5.3
Items in the HoNOS
Item Number
Item
1
Overactive, aggressive or agitated
2
Suicidal thoughts or behaviour
3
Problem drinking or drug taking
4
Cognitive problems involving memory, orientation, understanding
5
Physical illness or disability
6
Hallucinations and delusions
7
Depressed mood
8
Other mental and behavioural problems
9
Supportive social relationships
10
Activities of Daily Living (ADL): overall disability
11
Accommodation
12
Occupational and recreational activities
Ratings are made on a five point Likert-type scale with 0 representing no problem and 4 representing severe to very severe problems with the particular activity. Staff filling in the scale for the MH-CASC project were trained in use of the instrument to ensure accuracy and inter-rater reliability. 5.5.1.7 LSP 16
The Life Skills Profile was developed in Sydney to measure function and disability in people with chronic mental illness (Stedman, Yellowlees, Mellsop, Clarke & Drake, 1997). In its original form the Life Skills Profile contained 39 items and was considered too long and duplicated some of the
89
sub-scales of HoNOS. The MH-CASC team worked in conjunction with original developers of the Life Skills Profile to develop the shorter LSP 16. The new shorter scale retained the psychometric strengths of the original scale and its component sub-scales (MH-CASC, 1996). Sixteen items were selected to cover four broad domains: withdrawal, antisocial behaviour, self-care and compliance. Unlike the HoNOS, the LSP 16 is less concerned with acute symptoms and more concerned with the person’s more enduring living skills (MH-CASC, 1996). The LSP 16 includes 16 Items (See Table 5.4).
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Table 5.4
Items in the LSP 16
Item number
Item
1
Does this person generally have difficulty with initiating and responding to conversation?
2
Does this person generally withdraw from social contact?
3
Does this person generally show warmth to others?
4
Is this person generally well groomed (eg. neatly dressed, hair combed)?
5
Does this person wear clean clothes, or ensure that they are cleaned if dirty?
6
Does the person generally neglect his or her physical health?
7
Is this person violent to others?
8
Does this person generally make and/or keep up friendships?
9
Does this person generally maintain an adequate diet?
10
Does this person generally look after and take his or her prescribed medication (or attend for prescribed injections on time) without reminding?
11
Is this person willing to take psychiatric medication when prescribed by a doctor?
12
Does this person cooperate with health services (e.g., doctors and/or other health workers)?
13
Does this person generally have problems (e.g., friction, avoidance) living with others in the household?
14
Does this person behave offensively (includes sexual behaviour)?
15
Does this person behave irresponsibly?
16
What sort of work is this person generally capable of (even if unemployed, retired or doing unpaid domestic duties)?
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Ratings are made on a four point Likert-type scale with higher scores representing more positive functioning. Staff filling in the scale for the MHCASC project were trained in use of the instrument to ensure accuracy and inter-rater reliability. The four domains of Withdrawal, Antisocial, Self-Care and Compliance are generated from a combination of the items. Withdrawal Domain uses ratings from Items 1, 2, 3 and 8; the Antisocial Domain uses ratings from 7, 13, 14, and 15; the Self Care Domain uses ratings from the Items 4, 5, 6, 9, and 16 and the Compliance Domain uses ratings from the Items 10, 11 and 12. The ratings on the domains are summed and divided by the number of items of the domain, for example the Withdrawal Domain was divided by 4. Thirteen of the 16 items of the LSP 16 were summed to form an overall disability index. Items included in this index were those that formed the Compliance Domain, that is 10, 11 and 12 (MH-CASC, 1998). 5.5.1.8 Inclusion criteria
In order to be included in stage 1 of the study participants needed to be between 18 and 65 years of age, have a primary ICD 10 classification of schizophrenia, and be included in either or both the HBCIS and MH-CASC data sets. 5.5.1.9 Access to databases
Access to the HIBCS data was gained through the Gold Coast Health Services Information Technology Department, with support of the Gold Coast Integrated Mental Health Service. Access to the MH-CASC database
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was through the Commonwealth Department of Health and Family Services under the National Mental Health Strategy. 5.5.1.10
Ethical considerations
This study had ethical approval from the Queensland University of Technology Ethics Committee and the Gold Coast Health Service Ethics Committee. The databases being accessed for stage 1 were de-identified and will therefore pose no threat to disclosure of personal information by an agency to which the Commonwealth Privacy Act applies. 5.5.1.11
Stage 1: Data analysis
Data analysis for hypotheses 1 and 2 used the HBCIS data set. Housing type was used as the independent variable in an unpaired t-test using number of admissions (hypothesis 1) and length of stay (hypothesis 2) as the dependent variables. Data analysis for hypotheses 3 and 4 used the MH-CASC data set. Housing type was used as the independent variable in an unpaired t-test using the total scores for the HoNOS and the LSP 16 instruments. Analysis to further explore levels of functioning and severity of symptoms may be done using the sub-scales of HoNOS and LSP 16. Housing was again used as the independent variable and the respective sub-scales as dependent variables in Multiple Analysis of Variance (MANOVA) tests.
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5.5.2
Stage 2: Qualitative data
In-depth interviews with people with schizophrenia were used to explore the experience of living in the different types of accommodation. The analysis of this data showed what the “type of housing” meant to the participants and how housing influenced their lives. The richness of the data from the experience of the participants added depth to the findings from stage 1 of the study. The grounded theory approach allowed for a theoretical explanation of the phenomenon. 5.5.2.1 Rationale for use of qualitative data
Qualitative researchers generally avoid imposing controls, as their aim is to study phenomena in their natural contexts, unfortunately this means that it is difficult to establish firm, causal relationships between the phenomena of interest (Polit & Hungler, 1993). Qualitative methods can, however, uncover how people make sense of their world and what the experience means. These methods can provide a richness of data not available through other means (Norman & Parker, 1990; Polit & Hungler, 1993; Robson, 1993). Authors who use exploratory, qualitative data collection strategies argue that these methods offer access to data less coloured by the experience and prejudices of the author. They argue that the process of data collection also helps gain cooperation of the participants and can offer them the opportunity to have input into the process of research (Norman & Parker, 1990). 5.5.2.2 Relevance to consumers and housing
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The impact of long-term mental illness on one’s day-to-day life can be of greater concern than the symptoms of the mental illness (Valentine, 1989). Definitions cannot begin to explain the overwhelming experience of living with mental illness. Diagnoses, symptoms and determining treatments only provide a glimpse of the experience. Beyond this are the personal account, the very human response of illness and how those individuals and their families make sense of, cope with, and adapt to, the symptoms and disability of mental illness. Therefore any attempt to understand the experience of living with a mental illness needs to be informed by those who have experienced serious mental illness. Interestingly consumers, even those with long-standing severe illness, seem to be reliable informants of their history (Chafetz, 1996). 5.5.2.3 Contribution of qualitative studies to our understanding of the role of housing
Several studies, which informed this study, have examined the experience of consumers to illustrate the experience of having a mental illness and the important issue of housing. The findings of these studies have discussed issues and themes important to helping us understand mental illness. Some of the findings of these studies include: Consumers were dissatisfied with sharing their home (hospital or hostel) with people they perceived as not well or dangerous (Norman & Parker, 1990; Parrish, 1990). Consumers also appreciated the increased autonomy of living independently and thought it added to self-esteem (Chafetz, 1996; Connelly, Keele, Kleinbeck, Schneider & Cobb, 1993; Morris, 1996; Norman & Parker, 1990; Parrish, 1990; Rogers, 1996);
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Living independently meant being able to create one’s own environment but it also meant having to deal with problems not encountered in hospital, for example cooking, shopping, and traffic (Morris, 1996; Norman & Parker, 1990; Rogers, 1996). A number of qualitative studies found the quality of housing critical to surviving outside hospital (Chafetz, 1996; Vellenga & Christenson, 1996) even though homes were valued and used for different reasons (Nikkonen, 1996) There have been some Australian case studies published demonstrating that housing services are most effective if they focus on the individual needs of consumers as expressed by them (Broadbent, 1998); that consumers should make major contributions as decision makers in housing (Budin, 1998); that long term housing is often neglected by in-patient units and community staff because of the burden of lack of crisis accommodation (Barling, 1998). These studies have mainly been descriptive and have not attempted to develop theoretical explanations of what is happening and they ignore the unique experience of people who suffer schizophrenia. 5.5.2.4 Participants
Thirteen volunteers from the Gold Coast (for details on the Gold Coast see Appendix 1) took part in the qualitative stage of the study; six lived in boarding houses and seven lived in private homes. The volunteers were recruited
from
non-government
organisations
servicing
consumers,
following presentation of the aims of this project and early findings by the researcher. Participants were included if they identified themselves as
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having a diagnosis of schizophrenia, were between the ages of 18 and 65 and lived in one of the two types of housing identified. Participants were excluded if they were acutely ill or if there was any evidence from their behaviour that their participation may be detrimental to their health. 5.5.2.5 Data collection
Data were collected using semi-structured interviews focusing on the influence of housing on the mental health of the participants. The use of semi-structured interviews provided greater depth of data than structured interviews and offered participants greater opportunity to express their thoughts, feelings and experiences (Denzin & Lincoln, 1998). During the interviews there was an initial phase in which there was discussion about the project and allowed the participants to get to know the interviewer. The interviewer then asked open-ended questions aimed at eliciting the participant’s experience of living in their particular type of housing. For example: •
Tell me about where you live?
•
What is it like to live in this type of accommodation?
•
Do you like living there?
•
What is the best/worst aspect of living in your present accommodation?
•
How does the accommodation you live in contribute/effect your mental health?
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•
If you had the opportunity would you prefer to live in another type of accommodation, if yes what and why.
5.5.2.6 Data recording
Interview data was recorded using a tape recorder and transcribed for analysis using NUD*IST. The researcher also audio taped field notes that were transcribed and used in the analysis. 5.5.2.7 Data analysis
Grounded theory, and therefore this study, used a constant comparative method. This method involves the comparison of event with event and leading to the development of categories. Categories are then compared with events, possibly creating anomalies. These categories are compared and used to develop theoretical constructs. As this process continues the data collection reaches a stage where no new anomalies are found in the categories and new data clarifies the relationships between categories. This point is called saturation (Carter, cited in Cormack, 1996). As well as analysis of interview data this strategy includes ongoing reference to literature and checking of category and theory development with participants. 5.5.2.8 Ethical considerations
This study had ethical approval from the Queensland University of Technology Ethics Committee and the Gold Coast Health Service Ethics Committee. The National Health and Medical Research Council [NH&MRC] (1999) guidelines make special recommendations for people with a mental illness.
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These recommendations specify that if a person lacks the capacity to make a decision then the consent must be obtained from a relative or guardian. Acutely ill or psychotic people were not be included in the study, therefore consent was not be required from relatives or guardians. Participants in this stage of the study were not subject to the controls of the Mental Health Act and were ordinary members of the community.
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This figure is not available online. Please consult the hardcopy thesis available from the QUT Library
This figure is not available online. Please consult the hardcopy thesis available from the QUT Library
This figure is not available online. Please consult the hardcopy thesis available from the QUT Library
This figure is not available online. Please consult the hardcopy thesis available from the QUT Library
CHAPTER 10
DISCUSSION AND CONCLUSIONS
10.1
Discussion
As discussed in Chapter 1, the National Mental Health Strategy (1992) and its objectives are clearly underpinned by a desire to improve communitybased resources, facilities and services available for people with a mental illness. The strategy also intends to provide greater consumer input into the decision-making processes relating to care of people with a mental illness. This is critical to ensure congruence between organisational and consumer needs, and to empower consumers—an important commitment of the National Mental Health Strategy. According to the National Mental Health Strategy (1994a), housing is generally considered to be the most crucial support service necessary to achieve the success of its policy of community treatment for people with a mental illness. Health and housing authorities have committed funds to increase public housing places for people with mental illness. People with schizophrenia are the largest diagnostic group treated by mental health services. Unfortunately, because of the nature of their illness, people with schizophrenia have trouble maintaining reasonable quality housing and supportive social relationships. Both housing (Carlsson et al., 2002; Shu et al., 2001) and supportive relationships (Bengtsson-Tops et al., 2001;
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McDonald & Badger, 2002) have been found to have an impact on the mental health of people with schizophrenia. The current emphasis on biological research into schizophrenia has overlooked the importance of the environment in understanding fluctuations of this devastating mental illness. One way of reconnecting the individual with his or her environment is by better understanding the subjective experience of the illness and what environmental factors lead to changes in people with schizophrenia’s experience of their illness. The general purpose of this study was to explore the influence of housing type on people with schizophrenia. An additional goal was to address the problems of disregarding the users of mental health services in the process of decision-making. In achieving this purpose, an important part of the study was to obtain personal views and opinions of people with schizophrenia. 10.1.1 The project The results from this project have been presented as articles for publication in the previous four chapters. This chapter brings together the findings from those chapters through a brief discussion of the findings from individual publications, followed by a summary of the findings as a whole in relation to the initial guiding research question. The initial guiding research question was: •
What is the impact of housing on people with schizophrenia?
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An extensive review of the literature was carried out with a general focus on housing and consumers, and specifically on people with schizophrenia and housing. The literature review revealed very little research in Australia on these topics. International studies (mostly from the USA) indicated that when consumers generally, and people with schizophrenia in particular, live in good quality accommodation they have significantly better mental health on a number of measures. These measures include quality of life, amount of psychiatric medication needed, readmission rates and self-reports of mental health/wellness. There were very few studies exploring the reasons why housing had such an impact on the mental health of consumers. There is therefore a limited understanding of why people with schizophrenia have improved mental health if they live in better quality accommodation. The literature identified boarding houses (single room occupancies in the USA) as being the least desirable accommodation, and living independently in one’s own home as the most desirable type of accommodation. For this reason, these two types of accommodation were chosen for this investigation of the impact of housing on people with schizophrenia. The study was undertaken in two stages with the first stage using archival quantitative data from the HBCIS data set accessed through the Gold Coast Integrated Mental Health Service and the data set from the national MHCASC data set accessed through the Commonwealth Department of Health. The second stage used qualitative data from semi-structured interviews with 13 participants who self-identified as having schizophrenia.
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10.1.1.1
Stage one
There were two objectives in stage 1 of the study; the first was to explore the relationship between the types of housing to which consumers were discharged, their readmission rates and length of stay. The second objective was to explore patterns of illness as reflected by the severity of their symptoms and their level of functioning. The hypotheses for Stage 1 of the project were: 1. Admission rates will be significantly different for people with schizophrenia who are discharged to a private home when compared to those discharged to a boarding house. 2. Length of stay in hospital will not be significantly different for people with schizophrenia discharged to a private home when compared to those discharged to a boarding house. 3. Symptoms, measured by scores on HoNOS scale, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house. 4. The level of functioning, measured using an LSP 16, will be significantly different for people with schizophrenia living in a private home when compared to those living in a boarding house. Findings from the first two hypotheses were reported in the first published article (see Chapter 6). Results indicated that although people with schizophrenia were more likely to be readmitted if discharged to a boarding
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house than if discharged to their own home, their length of stay during their admissions was not significantly different. Although this study did not specifically investigate this aspect, it seems reasonable to assume that length of stay provides some indication of how long a consumer takes to recover from an acute episode of mental illness. Those more seriously ill would be more likely to stay longer in hospital and there is some support for this view in the literature (Hodgins et al., 1990). The project that is the basis of this thesis has confirmed that, in Australia as in other developed countries, housing does have a significant impact on outcomes for people with schizophrenia. It is generally accepted by mental health services that as their schizophrenia progresses, for some people their standard of living declines (Jablensky et al., 1999; Keltner et al., 1999). It could be argued that these people with schizophrenia who were living in boarding houses were likely to be more disabled than those who could maintain a relationship with their family and/or a home of their own. If this were true it seems the time spent in hospital would be longer for people living in boarding houses. This was further investigated through objective two and by hypotheses three and four and reported in the second published article (see Chapter 7). Results indicated that people with schizophrenia who lived in boarding houses were no more likely to have problems with their psychiatric symptoms than people with schizophrenia living in their own home. This finding seems to be counter-intuitive in that there is significant evidence in the literature (see chapters 3 and 4) that people with schizophrenia’s mental
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health suffers if they are living in poor quality accommodation. Although this is argued in the literature, very few of the studies in an extensive literature review on housing and schizophrenia actually reported on level of symptoms. The focus of the research tended to be on social factors and readmission rates. People with schizophrenia are likely to have more difficulty in the areas of their social supports, activities of daily living and recreational activities than the rest of the community. Studies that explored these phenomena have found that social support (or lack of it) can have an impact on symptoms (Bengtsson-Tops & Hansson, 1999; Dixon, 1999; Uttaro & Mechanic, 1994). Supportive social relationships can decrease symptoms (Kaiser, 2000; Marder et al., 1996) whilst lack of social support and difficulties in relationships can have a negative impact on symptoms (Angell & Test, 2002; Marley, 1998). Results in stage 1 of this study also indicated that people with schizophrenia living in boarding houses had similar interest in engaging in social activities to people living in their own home. Unfortunately, they did not have the same opportunities. Those living in boarding houses were also troubled by friction in their relationships with other residents. Stage 1 of this study has confirmed that, in Australia as in other western countries, when people with schizophrenia live in poor quality accommodation their mental health suffers. However, stage one did not provide a clear explanation of why people with schizophrenia do so much better in their own homes. Nor did it explain the apparent anomaly that there
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was no difference between the two groups in their symptoms, but that people with schizophrenia living in boarding houses were more likely to be readmitted to hospital. This concluded stage one of the study. 10.1.1.2
Stage two
Consumer participation in mental health services is recommended by the World Health Organization (1990), is a policy of the National Mental Health Plan (1994; 2003), and Queensland Health (Ten Year Mental Health Strategy for Queensland, 1996). Literature indicated that consumers can make a valuable contribution to services (Victoria Mental Illness Awareness Council, 1994) but, unfortunately, involvement and empowerment were not the experience of many consumers (Barker, 2003; Burdekin et al., 1992; Harding et al., 1987; Howie the Harp, 1990; Strong, 1995). In recent years mental health service delivery has changed from being institution-based to community-based service delivery. Nurses underwent a change from custodial care with patients/clients to a very different relationship. This new relationship focuses on recovery and nurses working with people with schizophrenia as equals. This change in practice has been difficult for nurses (Curtis & Hodge, 1995; Muller & Poggenpoel, 1996; Rapp, 1993). The aim of stage 2 of the study was to develop a substantive grounded theory explanation of the impact of housing on people with schizophrenia. The theory is grounded in the data collected from people with schizophrenia and reported in articles three and four (see chapters 8 and 9). Interviews 195
were conducted with 13 people who self-reported as having a diagnosis of schizophrenia. There were two broad areas of findings; the first was associated with the qualities of the housing, the second was the relationships participants were able to develop as a result of where they lived. Participants living in their own home had a number of advantages over those living in boarding houses. They spoke about the importance of living independently in their own home. Independent living meant being in charge of their lives and living in familiar surroundings with people they chose. They reported that this helped them to feel comfortable, safe and as though they belonged. It meant they could have friends around or do things that they liked or needed to do, in a place that they felt safe (See Diagram 10.1). Similar finding have been reported elsewhere (Berger et al., 1997; Carlsson et al., 2002; Cleary et al., 1998; Dickerson et al., 1999; Hansson et al., 2002; Shu et al., 2001). For participants living in boarding houses, having their own home was a dream some believed was achievable. Living in a place that they liked, that suited their needs, meant participants were more likely to stay living in their accommodation. All participants’ valued stability but those living in their own home had greater opportunity and motivation to stay where they were.
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Diagram 10.1: Interaction between the categories and subcategories of the qualities of housing. Cost
Qualities of home A Space of my own A place of my own
Placeof my own In charge of my life Stability and friends
This is my space I feel comfortable
Under the doona
Get away
Stability
Knowing it is there Living with others
Familiarity At home
Activities Atmosphere
Stability and hospital
Outside
This diagram shows the subcategories and indicates that there are interactions between all of the categories and subcategories. When participants felt they were in a place of their own they felt comfortable and as though they were in charge of their lives They could get away if they needed to or be with others and involved in activities at home with friends. Just knowing their familiar safe place, a place of their own was there, helped them to feel in charge and more comfortable with themselves and their lives. These feelings/experiences meant that participants were more likely to stay for longer in their homes and establish stronger friendships. This stability meant not only that they could maintain all the supports associated with their housing but also in the event they did need to go to hospital, their home (with all it had to offer) was there when they were discharged. As can be seen the cost of housing impacts on the likelihood that a participant can maintain the resources for the housing.
Participants lived in diverse housing, ranging from nice well-situated homes to dirty over-crowded boarding houses. Although this was discussed by the participants and indicated as an issue that contributed to their stability and therefore their mental health, they were more interested in the relationships they had as a result of living in their homes. This was the second area of findings from stage two of the study. When people with schizophrenia lived in their own homes they had greater opportunities to form and maintain
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supportive social relationships. These relationships meant that the participants received support from friends and loved ones, but also that they could be of help when those around were in trouble. This added to their sense of belonging. According to the participants, their housing significantly influenced the number and quality of supportive relationships they had. Those living in their own homes tended to spend more time in their homes and they used their homes to entertain and maintain those valued relationships. Boarding house residents also valued relationships but had difficulties with other residents and they tended to have not resided as long in the boarding house (see Diagram 10.2). These findings were consistent with the findings from the results of the MH-CASC data set reported in publication two (Chapter 7).
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Diagram 10.2: The interaction between the Core Categories of qualities of housing and social relationships and the subcategories
Cost
Qualities of home
Relationships
A placeof my own
A Space of my own
Accept and understand Activities Living with others
Stability Atmosphere Coming home to someone
This diagram shows the subcategories and indicates that there is an interaction between all of the categories and subcategories. When participants felt they belonged where they had a space of their own in which they felt safe, they were more likely to stay in that home. With this stability participants were able to develop and maintain relationships with people who understood and accepted them. This improved their quality of life and increased the likelihood they would stay in their housing. In their homes participants felt able to have friends (who accepted their mental illness) around to enjoy shared activities. Some were able to develop/maintain relationships and live with a supportive partner/friend or family member.
There is evidence in the literature of the importance of supportive social relationships to the mental health of people with schizophrenia (Uttaro & Mechanic, 1994). Supportive social relationships have also been shown to impact positively on the mental health and quality of life of people with schizophrenia (Bengtsson-Tops & Hansson, 1999; Brown 1996; Cohen & Sokolovsky 1978; Erickson et al., 1989; Heinssen & Cuthbert, 2001; Meeks & Murrell, 1994; Mueser & Farrier, 1998; Pattison et al., 1975; Tolsdorf,
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1977 ). They also impact on the likelihood of admission to hospital (Kaiser, 2000; Lehman & Postrado, 1995; McDonald & Badger, 2002). There have been some studies that investigated accommodation, social relationships and the mental health of people with schizophrenia (Angell & Test, 2002) but these studies have mostly been undertaken in psychiatric institutions (Denoff & Pilkonis, 1987; Holmes-Eber & Riger, 1990; Lipton et al., 1981; Segal & Holschuh, 1991). The findings of this study (see Table 10.1) brought together two different areas of investigation—research into the impact of housing and into the importance of social relationships to the mental health of people with schizophrenia. The author expected the interviews to identify aspects of the housing that were critical to their mental health. These were the initial findings from the interviews and the results were reported in article three (Chapter 8). An unexpected finding, and one that came as a direct result of the input from people with schizophrenia, was that living in their own home significantly impacted on the number and quality of supportive social relationships and the participants’ ability to use those relationships to help them to stay well (reported in Chapter 9). This finding not only makes a significant contribution to our understanding of how to help people with schizophrenia but it also draws attention to the important contribution people with schizophrenia can make to research.
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Table 10.1
Housing and people with schizophrenia: A substantive Grounded Theory
The results of this study indicated that people with schizophrenia were more likely to be readmitted if they were discharged to a boarding house. There seemed to be no evidence that people with schizophrenia living in boarding houses had a more severe illness or were more disabled than those living in their own homes. However, they were disadvantaged and found it more difficult to be involved in meaningful activities. Although they were interested in friendships they had less opportunity to form and maintain them. People with schizophrenia living in their own home have many more opportunities to structure their lifestyles so that it contributes positively to their mental health. When people with schizophrenia live in housing of their choice that suits their needs, they tend to stay longer. With this stability comes the opportunity to develop relationships with family, colleagues with a mental illness, friends and partners. These relationships help people with schizophrenia to stay well and avoid relapses. The theory induced in this study indicates that if people with schizophrenia live in quality (by their standards) accommodation they are more likely to stay and therefore build and maintain supportive social relationships. This linear explanation does not fully explain the social process of this grounded theory. A critical aspect of quality housing is its usefulness as a resource for socialising. Stability of housing offers the opportunity to develop social relationships. The two core categories induced in this study, although presented independently are, very strongly linked.
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10.1.2 Limitations of the study Although this study constituted a new area of investigation and developed useful theoretical explanations of a phenomenon not previously understood, there were some limitations. The ‘gold standard’ for evidence-based nursing research based practice is the double blind control study. Results and conclusions drawn from doubleblind control studies offer very strong arguments. Unfortunately, in this project, double-blind study design could have been both impractical and unethical (Polit & Hungler, 1993). The resources were not available for long-term follow-up of people following discharge and (with the researcher’s knowledge of the effects of poor quality accommodation) discharging people to boarding houses could have been unethical. A doubleblind control study would have also meant the participants would not have had an input into the study and valuable and important findings would have been lost. Archival data was used in stage one. This was data collected by the Gold Coast Mental Health Services and the Commonwealth Department of Health for purposes other than this study. The advantage of these data sets was that they contained large numbers and the data were of high quality as the collectors were specifically trained in the collection of the data and had no vested interest in this study. The disadvantage was that the data sets were not designed for this study and left weaknesses in the arguments. A stronger case could have been developed with the use of purpose-designed instruments.
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The HBCIS data set provided solid evidence that people with schizophrenia were more likely to be readmitted to hospital if discharged to a boarding house. Unfortunately, the length of stay data did not provide a very strong argument for the level of wellness/illness when patients were discharged. Therefore, it can only be assumed that when people with schizophrenia were discharged to their own home and boarding houses they experienced equal levels of wellness. The MH-CASC study design aimed to assess costs of mental health services and not at exploring the housing experiences of people with schizophrenia. This meant that more specific questions such as discharge data and the reason for re-admission could not be asked of the data. A stronger argument could have been put if these questions could have been asked of the data. The sample size of 13 participants in stage two of the study provided enough depth to develop a grounded theory explanation of the phenomena. Although the author is confident the results would not change as saturation was reached in the data collection/analysis, an increase in the sample size could mean that decision-makers in mental health services would be more impressed and be more likely to implement the recommendations. Perhaps further study needs to be undertaken to further test this theory. Hopefully, further research will address these limitations. 10.2
Conclusions and recommendations
Schizophrenia has a great financial cost to the community and personal cost to individuals and their families. If they are to assist people with
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schizophrenia in their recovery mental health service providers need to take into consideration more than just the symptoms of their illness. Recovery is a holistic process and, in addition to recovery from symptoms, includes recovery from the stigma of their illness, recovery from the effects of treatment, recovery from the lack of opportunities in all aspects of life, and recovery from the destructive aspects of their illness. Housing is a critical aspect of recovery. The aims of this study ‘to explore the impact of housing on people with schizophrenia’ and to include consumers in the research process, have been met. The study demonstrated that, in Australia, if people with schizophrenia have the opportunity to live independently in their own homes they have a great advantage in their efforts to stay well, over people with schizophrenia living in boarding houses. The physical location and attributes of the housing, as well as the stability associated with living independently in their own home, made a significant impact on people with schizophrenia’s ability to stay well. When people with schizophrenia had stability in their housing they had the opportunity to develop and maintain supportive social relationships. These relationships were identified by the participants in this study as being critical to the maintenance of their mental health. Historically, there has been an assumption in mental health services that people with schizophrenia living in boarding houses were more disabled than people living in their own home and were therefore more likely to be admitted to hospital. This study questions that assumption. If people with
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schizophrenia living in boarding houses were offered the same opportunities and resources as those living independently in their own home they would certainly do better in terms of quality of life and readmissions to hospital. They may even do as well as people with schizophrenia living in their own homes. People with schizophrenia who live in marginal accommodation represent a group with special needs. Many of them have limited regular contact with the specialist mental health services. Jablensky et al. (1999) argued that many of the services for people with a psychotic disorder tended to be crisis response-based and only a minority of these consumers attained a level of functioning and wellbeing commensurate with good quality of life. This study has shown that, at least with this group of people, those living independently in their own homes had great advantages in their efforts to stay well and to stay out of hospital. Participants living in their own homes felt empowered and had the freedom to make choices and decisions about their lives. Being empowered, they made positive choices and found ways to use resources to help themselves in their own recovery. 10.2.1 Recommendations State and federal governments, whilst acknowledging that housing is a critical element in the provision of service to people with schizophrenia, do little to encourage the development of suitable housing options. This study raises the larger question of why so little attention is paid to consumer housing by mental health services and the Department of Housing.
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The focus of mental health services on cost cutting and finding new drugs to combat schizophrenia is misplaced. Short-term cost cutting will mean longterm increase in costs. Depending on drugs to solve the problems associated with schizophrenia is reductionist and is unlikely to succeed. Adequately meeting the multiple needs, including housing, will have much greater impact on the course of clients’ symptoms and social adjustment than the present service provision. If mental health service providers were to invest resources into adequate appropriate housing and support, their clients would be more likely to develop a sense of belonging in their community. This sense of belonging could help in the development of supportive social relationships. The outcome for people with schizophrenia could be improved with a better quality of life, fewer symptoms and fewer admissions. Service providers, in general, need to focus more attention on housing. 10.2.2 Clinical practice Nurses and mental health professionals in general could focus attention more on helping clients with schizophrenia to live independently in housing of their own choice. This could empower our clients to make choices that enhance their ability to stay well. This study also has implications for the way we care for our clients. There is significant evidence in the literature and from this study that when people with schizophrenia have the opportunity to make decisions for themselves
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they make choices that help them to stay well. Unfortunately, as mental health professionals, we often do not recognise this. Nurses have a very important, and often under-rated, role as advocates for the people for whom we work—consumers of mental health services. People with schizophrenia in stage 2 of this study clearly stated they did better when they felt they belonged and they felt they were in charge of their lives. If they have stability in their housing they have the opportunity to develop supportive relationships, these relationships can be used by people with schizophrenia to help them stay well. As nurses our role is to help our clients with schizophrenia achieve these basic human needs. 10.2.3 Research This is one study in Australia into the impact of housing on people with schizophrenia. This is an important area of research acknowledged by policy makers in mental health services. In the past, reviewers of mental health services have been critical of the lack of adequate housing for people with mental illnesses. There was an assumption made in stage one of the study that if patients with schizophrenia discharged to boarding houses and their own home spent the same amount of time in hospital they were likely to be as well/disabled as each other. Although it seems reasonable to assume that discharge planners would consider the patient’s accommodation when the decision is made about when to discharge them, there is no strong evidence for this. There needs to be further research on this topic.
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This study has demonstrated something that planners and funding agencies in mental health services have known for quite a while—the housing to which people with schizophrenia are discharged impacts significantly on the outcome for these people. Further research needs to be undertaken to investigate how seriously discharge planning considers the accommodation needs of people with schizophrenia. This study focused on living independently in one’s own home and living in a boarding house. The reasons for this have been previously discussed. There are other types of housing in which people with schizophrenia live and those types of housing need further investigation regarding their impact of the mental health of their residents. The participants in stage two of this study clearly identified supportive social relationships as being an important support in helping them to stay well. The participants identified stability as an important aspect of these relationships. They also identified reciprocity as an important aspect—not only do they want to be helped when they are having difficulties, they desire the type of relationship where they are called on when their friends (social supports) need help. Further research needs to explore what it is about supportive relationships that people with schizophrenia find so helpful. Research that informed nurses how they can be of assistance to their clients in helping them develop skills in forming supportive relationships could make a significant contribution. The literature identifies substance abuse as a significant problem in people with schizophrenia (Jablensky et al., 1999) and that it can be a problem in
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boarding houses (Berger et al., 1997). Substance abuse was not discussed with the participants of investigated in stage 1 of the study although it has an impact on life in boarding houses. There is a need for further study investigating the impact of substance abuse on the people with schizophrenia in boarding houses. The impact of the cost of housing was identified by participants as an impediment to living independently in their own home for some living in boarding houses and a difficulty for one participant renting her home. Others living in their own homes were grateful that circumstances meant they were able to live independently. Further research needs to be undertaken to explore the impact of low incomes, as a result of disability and hospitalisation, on the mental health of people with schizophrenia. This study has demonstrated that people with schizophrenia can make a valuable contribution to research. It is time clinical nurses and researchers recognised that people with schizophrenia have expertise we cannot have (unless we have experienced the illness) and began to value that experience. As researchers we need to rise to the challenge, to lead the agenda for the future of mental health services. This requires us to place social issues such as housing and social support firmly on the agenda alongside, and with equal status, to the newest drug. Only then will people with schizophrenia begin to receive the quality of services that they deserve.
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APPENDIX 1
The Gold Coast
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The archival data for Stage One of this study were collected between 1992 and 1998 for the Gold Coast Area Health Service HBCIS data set and in 1996 for the National MH-CASC data set. The interviews for Stage Two of the study were conducted on the Gold Coast between 1998 and 2001. This appendix gives a snapshot of mental health services, especially as they apply to housing on the Gold Coast during this time. The Gold Coast The Gold Coast is a linear coastal city extending north from the NSW/Qld. border for about 70 kilometres. The population as recorded in the 1996 census was 356,571 (Australian Bureau of Statistics, 1996). The natural attributes of the area make it an attractive destination for tourists with hospitality a major industry in the area bringing in 2.3 million visitors each year (Gold Coast City Council, 1997). The annual population growth has been estimated at between 2.68% and 3.25% (Baker, 1997). With this growth, it is understandable that housing has emerged as a major issue for human service providers. The issue of accessible, affordable, appropriate and safe housing crosses sectors and its lack leads to the demand for crisis and medium-term housing not being met. Barker (1997) estimated that there were 72,184 people on the Gold Coast with a mental disorder, and those with a severe disorder numbered at least 1,491. Unfortunately, the Queensland government spends less on mental health than any other state and a smaller proportion is invested in community based mental health services (National Mental Health Strategy, 1996). 213
Housing services as described by government authorities and NGOs on the Gold Coast Queensland disability housing coalition (1996) The Queensland Disability and Housing Coalition received funding from the Queensland Department of Health (Mental Health Branch) to establish the Mental Health and Housing Project. The project was in response to a long ‘period of concern about the housing choice available to people who have a psychiatric disability’ (Queensland Disability Housing Coalition, 1996, p. 1). The project was focused on the need to improve access to secure and appropriate mainstream housing services, rather than developing specialised disability housing options or services. A major contribution of the project was the publication of an information kit (a monograph) for professionals NGOs and consumers. The information kit addressed topics such as emergency housing, public housing, The Community Rental Scheme, community housing, the private rental market, and home ownership. The kit emphasised the importance of consumer participation in the process of housing choice. It discussed the importance of choosing the right location, of having privacy, of feeling safe in the chosen housing and feeling comfortable. The kit was prepared with stories of people suffering from often serious and debilitating psychiatric disabilities. These stories were optimistic with people successful in maintaining a home in the community through the help of support agencies and use of the resources made available by various government agencies and NGOs.
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Public housing In the section on medium- to long- term housing, the first area addressed was public housing. Public housing is supported from state funding and offers secure rental accommodation for people on low incomes in a variety of housing types in most areas in Queensland. Applicants for public housing need to apply in writing by filling out the appropriate forms and sending them to the local office of the Department of Housing. Applicants are then required to attend an interview and it is then a matter of waiting for a house to become available. The waiting time varies according to the area ‘usually in terms of months rather than weeks’ (Queensland Disability Housing Coalition, 1996, p. 26). If an offer of accommodation is made it must be accepted within two or three working days. ‘You can turn down an offer of housing without losing your place on the waiting list only if you can provide suitable reasons for rejection’ (Queensland Disability Housing Coalition, 1996). The cost of public housing is related to the income of the applicant and there must be some income for the application to be made. Community Rental Scheme (CRS) Whilst waiting for public housing, the CRS may help with accommodation on an emergency and medium-term basis. CRS housing is available to people experiencing severe or immediate need. There is a high demand and those with the greatest need are given priority.
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Applicants need to demonstrate they have an immediate and severe need for housing. Application is made to the local CRS worker. A form is completed and applicants may have to wait some time before a place becomes available. Community housing Community housing is an alternative to public housing and private rental, it is intended to be long-term. It includes the Community Housing Program, Community Housing Partnership Program, Co-operative Housing Program and Crisis Accommodation Program. The Community Housing Program is managed in the community at a local level. As with public housing and CRS the amount of rent is subject to income. The housing is owned by a community group who rent accommodation to people (usually on low incomes) living in the area. Reports from a Gold Coast Mental Health Project This report aimed to determine the range of mental health services on the Gold Coast and to identify gaps. The project also made recommendations for improvements to the delivery of mental health services on the Gold Coast (Bruhn, 1995). The author identified four key groups to take part in the study: consumers (n=12), carers (n=12), service providers (n=15) and community groups (n=15). Data were collected using structured interviews where the answers to questions were scored by the interviewer. Results of the study indicated
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that priority needs included housing, public awareness of mental illness, the need for support services and accommodation support. The report concluded that affordable housing was a crisis issue on the Gold Coast, with long waiting lists for public housing and rental assistance. The report also drew attention to the difficulty in maintaining the rights and dignity of people with psychiatric disabilities whilst housing is such a problem. The report also identified a difficulty in gaining support from three separate organisations, the Department of Housing; the Department of Family, Youth and Community Care; and the Department of Health. A further report (Bruhn, 1996) aimed to identify the consumers’ views of their housing needs. The report made recommendations that rent assistance be made available; home ownership be promoted; that housing be of detached and apartment style and cluster housing; that housing be available in reasonable locations with access to transport, accommodation support, vocational and social activities; and that it be affordable. It also recommended resistance to the use of caravans and boarding houses. The report also drew attention to the importance of accessibility of housing, this can be a problem for people who are sometimes homeless and whose illness may make it difficult to deal with others. The Queensland Department of Public Works and Housing developed five principles that should apply to housing assistance for all people with a disability. These included equal rights, individualised services, choice, and separation of housing service provision from accommodation support services (Baker, 1998).
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There has been considerable research and discussion on the housing needs of consumers on the Gold Coast. This research and discussion has mostly resulted from the presence of community development projects. Unfortunately, the funding for these projects is insecure and the limited progress made is at risk of coming to a standstill or being lost (Baker, 1998). The level of housing support consists of two small services on the central and southern end of the Gold Coast. Both research and anecdotal evidence suggest this means increased hospitalisation for people who may not otherwise need to be hospitalised (Baker, 1998). The housing situation of persons on the Gold Coast living on a pension means they suffer considerable stress. This stress is a result of living in expensive rented accommodation and not having enough to live on, or living in substandard accommodation so there is enough money for other needs. Neither of these positions helps in the maintenance of mental health (Baker, 1998).
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APPENDIX 2 List Of Questions From The Semi Structured Interviews
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INTERVIEWS FOR STAGE 2 OF STUDY At the beginning of each interview the project was described in detail to the participants and they were the opportunity to discuss any aspect. I then discussed their rights, the confidentiality of what they said and their role including the importance of their contribution to the research. The following written presentation of the questions seems a little stilted and repetitive. The written questions are to give an indication of the structure of the interviews. The questions were framed in a way to encourage discussion and description by the participants. The questions on which the interviews were conducted included: Part A
General
Can you tell me about the place where you live? Does it suit your needs? Is it comfortable? Part B
People
Can you tell me about the people who share your home/accommodation? Can you tell me about your neighbours? Part C
Where it is
Can you tell me about the “things” that are near your home that you like and suit your lifestyle (eg tennis court, friends, banks, shops)?
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Can you tell me about the things that you need/like that you wish were closer to your home? Can you tell me about the “things” that are near your home you don’t like (eg. highway, pub, in-laws)? Part D
Contribution to Mental Health
The ideas in these next questions are a little more complex and offer more depth of ideas. Hopefully the participants will be warmed up enough to address these questions at this stage. Does living here impact on your mental health? Does it help you to: 1. stay well or 2. make you worse when things are not so good? Does it help you when you become ill? Are there any issues about your housing that are important that I haven’t asked about?
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APPENDIX 3 Participant Information Form From Stage 2 In-Depth Interviews
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Queensland University of Technology School of Nursing Project Title Investigator Professional qualifications Contact Person Address Phone Number
The Impact of Accommodation Provision on the Consumers of Mental Health Services Following Discharge Graeme Browne RN, ADCHN, B.Sc., MPhil. Graeme Browne. 671 Clothiers Ck Rd Clothiers Ck 2484 02 6677 7472
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I acknowledge that: •
I have read the above statement which explains the nature and object and the possible risks of the investigation, and the statement has been explained to me to my satisfaction.
•
Before signing this document I have been given the opportunity to ask questions relating to any possible physical and mental harm I might suffer as a result of my participation and I have received satisfactory answers.
•
I have also been informed that I may not receive any benefits from participating in this study.
•
I understand that this study is for the purpose of research and is not treatment.
•
I have been informed that the confidentiality of the information I will provide will be safeguarded.
•
My decision whether or not to participate will not prejudice my future relations with Queensland University of Technology or the Gold Coast District Health Service. If I decide to participate, I am free to withdraw my consent and to discontinue participation at any time without prejudice
•
I agree that research data gathered from the results of the study may be published provided my name is not used.
.................. Date
......................................................................... Signature of, Consumer or Participant
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I have fully explained to the participant ........................................................ the nature and purpose of the program and the procedures to be employed as described above and such risks as are involved in their performance, and I have provided the participants with a copy of a Participant Information Sheet. .................. Date
......................................................................... Signature of Responsible Investigator
I have witnessed the receipt of a Participant Information Sheet by the participant and exchanging of information between the investigator and the participant about the study.
.................. Date
......................................................................... Signature of Auditor - Witness
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APPENDIX 4
Consent Form Signed By The Participants From Stage 2 In-Depth Interviews
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Queensland University of Technology School of Nursing The impact of accommodation provision on the consumers of mental health services following discharge
Information for participants This study is the basis of a dissertation in the degree of Doctor of Philosophy at Queensland University of Technology being undertaken by Graeme Browne (ph. 02 6677 7472) under the guidance of Professor Mary Courtney (ph. 07 3864 3887). Background to the Study Housing is an important but underrated issue for consumers of mental health services. Although some work in the USA has identified the importance of quality housing to the wellness of consumers of mental health services there is limited research into this issue in Australia. This study will investigate the importance of housing and the consequences of different types of housing for consumers of mental health services. Procedures To do this the researcher will use both data from 5,000 admissions to the Gold Coast Hospital Psychiatric Units and in-depth interviews with 13 consumers to explore the consequences and experiences of different types of housing on the health of consumers of mental health services. The types of
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housing to be investigated include boarding house accommodation, supported accommodation and living in your own home. You will be asked to be involved in the second stage of the study which is collection of data on your views of the importance of your housing to your mental health. Your medical records and health history will not be used in the study and will not be made available to the researcher. You will be interviewed by Graeme Browne, the researcher, for an initial period of approximately one and a half hours. During this initial interview Graeme will be interested in your views and experience of the influence of the type of housing you live in and its influence on your mental health. A second interview of one hour may be used to clarify any issues from the initial interview. Possible Risks The study requires that I discuss with you, your housing and your view on how that influences your mental health. For example I will be asking questions such as “tell me about where you live; what is it like to live in this type of accommodation; do you like living there; what is the best/worst aspect of living in your present accommodation; how does the accommodation you live in contribute/effect your mental health; if you had the opportunity would you prefer to live in another type of accommodation, if yes what and why. If we do encounter problems and you find the interview distressing in any way, then Graeme will put you in contact with a counselling service at the Palm Beach or Southport Community Health
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Centres or, if you prefer, with your permission, contact your case manager or doctor and arrange for you to see them. Questions and Concerns If you wish to discuss any aspect of the study feel free to contact me, Graeme Browne by telephone on 02 6677 7472, or my supervisor, Professor Mary Courtney on 07 3864 3887. You may also contact the Queensland University of Technology’s registrar on 07 3864 1056 or the Gold Coast Health Services Medical Superintendent Dr. Brian Bell, or the Coordinator, Patient Liaison Service, Carol Hobson, Phone (07) 5571 8211 if you wish to raise any concerns about the ethical conduct of this project. Freedom of Consent Participation in this study is entirely voluntary. You are free to withdraw at any time without comment or penalty. Under no circumstances will you be prejudiced as a result of your actions; your participation refusal or withdrawal will not influence your present or future involvement with Queensland University of Technology or any care you are entitled to from Gold Coast Health Services. Possible Benefits This study has the potential to influence the implementation of housing policy for consumers of mental health services. Locally this study could be used to support application for funding for housing for this area.
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Feedback If you are interested Graeme will offer feedback about the results of the study. Confidentiality Your results will only be revealed to the researcher and yourself. When the results of the study are published we will ensure that you remain anonymous. Acknowledgment Thank you for your participation in this study. Your help is greatly appreciated in the completion of my Doctor of Philosophy degree. Please ensure that you have read and understood the previous information before you make the final decision as to whether or not you will participate in the study.
Once again, thank you.
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APPENDIX 5
Letters Confirming Ethics Approval From QUT Ethics Committee
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APPENDIX 6
Letter Confirming Ethics Approval From Gold Coast Hospital Ethics Committee
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