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Low Prevalence Disorder Component of the National Study of Mental Health and Wellbeing Bulletin 5 Disability, homelessness and social relationships among people living with psychosis in Australia

Carol Harvey Helen Evert Helen Herrman Tony Pinzone Oye Gureje on behalf of the LPD study group

October 2002

National Survey of Mental Health and Wellbeing Bulletin 5

Disability, homelessness and social relationships among people living with psychosis in Australia

A Bulletin of the Low Prevalence Disorder Study

Carol Harvey Helen Evert Helen Herrman Tony Pinzone Oye Gureje on behalf of the LPD study group

© Commonwealth of Australia 2002 ISBN 0 642 50340 0 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth available from Information Services. Requests and inquiries concerning reproduction and rights should be addressed to the Manager, Copyright Services, Information Services, GPO Box 1920, Canberra ACT 2601 or by e-mail [email protected] Publication approval number: 2944

Additional copies of the bulletin are available from the Mental Health Branch, Commonwealth Department of Health and Ageing, telephone 1800 066 247 or facsimile 1800 634 400. A copy may also be downloaded from the Mental Health Branch website at: http://www.mentalhealth.gov.au Copies of other publications produced under the National Mental Health Strategy are also available at this site. The opinions expressed in this report are those of the authors and are not necessarily those of the Commonwealth Department of Health & Ageing. The authors would like to acknowledge the Commonwealth Department of Health and Ageing, Mental Health and Special Programs Branch, for providing the funding to undertake this project.

Publications Production Unit (Governance and Business Strategy Branch) Commonwealth Department of Health and Ageing Canberra ii Disability, homelessness and social relationships among people living with psychosis in Australia

This publication is one of a series of publications produced by the Commonwealth Department of Health and Ageing under the National Survey of Mental Health and Wellbeing. Other publications include: Low prevalence component of the survey: People living with psychotic illness: an Australian study 1997-1998 People living with psychotic illness: an overview (Bulletin 1) Costs of psychosis in urban Australia (Bulletin 2) Employment and psychosis (Bulletin 3) The use of psychopharmacological and other treatments by persons with psychosis (Bulletin 4) Disability, homelessness and social relationships among people living with psychosis in Australia (Bulletin 5) Stigma and discrimination (Bulletin 6) Child and adolescent component of the survey: The mental health of young people in Australia Adolescent depression (Leaflet 1) Conduct disorders (Leaflet 2) Adolescent suicide (Leaflet 3) Attention deficit / hyperactivity disorder (Leaflet 4)

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Disability, homelessness and social relationships among people living with psychosis in Australia

Contents

Acknowledgments Executive summary Functioning and disability - relevant personal and clinical factors for people with psychosis Disability, service use and quality of life among people living in different types of housing across Australia Disability and service use among homeless people living with psychotic disorders in Melbourne Social networks and functioning of people with psychosis 1. Disability, homelessness and social relationships - an introduction 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 The Low Prevalence (Psychotic) Disorders Study The importance of functioning and disability of persons with psychosis Scope of this bulletin The relevance of the attributes of the health condition and personal factors to functioning The relevance of environmental factors to a person's functioning The importance of adequate housing and the problem of homelessness The value of social networks Summary of aims viii xi xi xii xiii xiv 1 1 1 2 3 4 4 5 6 7 9 10 11 11 11 12 13 24 26 29 30 30 32 32 32 32 33 33

2. Functioning and disability - relevant personal and clinical factors for people with psychosis 2.1 Measures and definitions used in this chapter 2.1.1 Service use 2.2 Findings 2.2.1 Socio-demographic characteristics 2.2.2 Work, study, and home duties 2.2.3 Relationships with others, self care and outside interests 2.2.4 Service use 2.3 Conclusions 2.4 Recommendations 3. Disability, service use and quality of life among people living in different types of housing across Australia 3.1 Measures and definitions used in this chapter 3.1.1 Accommodation type 3.1.2 Substance use 3.1.3 Quality of life 3.2 Findings 3.2.1 Socio-demographic characteristics 3.2.2 Clinical features 3.2.3 Substance use

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3.2.4 Work, study, and home duties 3.2.5 Relationships with others, self care and outside interests 3.2.6 Service use 3.2.7 Quality of life 3.3 Conclusions 3.4 Recommendations 4. Disability and service use among homeless people living with psychotic disorders in Melbourne 4.1 Definition of homelessness 4.2 Methodology of the nested study of the homeless population with psychosis in Melbourne 4.2.1 The catchment area for the Melbourne study 4.2.2 Study design 4.2.3 Interviewing and sampling results in marginal accommodation 4.2.4 Interviewing and sampling results in drop-in centres 4.3 Findings 4.3.1 Calculating the prevalence of people living with psychosis in marginal accommodation 4.3.2 Socio-demographic characteristics 4.3.3 Clinical features 4.3.4 Substance use 4.3.5 Relationships with others, home duties, self care and outside interests. 4.3.6 Service use 4.3.7 Quality of life 4.4 Conclusions 4.5 Recommendations 5. Social networks and functioning of people with psychosis 5.1 People with schizophrenia and their social networks 5.2 Measures and definitions used in this chapter 5.3 Findings 5.3.1 Socio-demographic characteristics 5.3.2 Clinical features 5.3.3 Work, study, and home duties 5.3.4 Household activities 5.3.5 Relationships with others, self care and outside interests 5.4 Conclusions 5.5 Recommendations Appendix 1: The Diagnostic Interview for Psychoses-Disability Module (DIP-DIS) Background and rationale for development of the DIP-DIS The Disability Module (DIP-DIS) Inter-rater reliability Agreement with another measure of disability: Criterion validity Sensitivity to differences in disability: Discriminant validity Discussion

36 37 38 39 41 42 43 44 45 45 46 46 47 48 48 48 49 50 50 51 52 53 54 55 55 56 56 56 57 58 58 59 60 61 63 63 63 64 64 65 65

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Appendix 2: Details of the methodology of the systematic case study in Melbourne Instruments Compiling the sampling frame for marginal accommodation Rationale for number of residents approached for screening Ethical procedures Sampling results in marginal accommodation Compiling the sampling frame for drop-in centres and other non-residential disability support agencies Sampling results in drop-in centres and other non-residential disability support agencies References

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Acknowledgments

This bulletin is based on data collected in the framework of the Collaborative Study on LowPrevalence (Psychotic) Disorders, an epidemiological and clinical investigation which is part of the National Survey of Mental Health and Wellbeing, Australia 1997-1998. The members of the Low Prevalence (Psychotic) Disorders Study Group are: Professor Assen Jablensky (Project Director and Team Leader, Western Australia); Professor Vaughan Carr (Adviser); Dr David Castle (Deputy Team Leader, Western Australia); Dr Mandy Evans (Team Leader, Australian Capital Territory); Professor Oye Gureje (Deputy Team Leader, Victoria); Dr Carol Harvey (Deputy Team Leader, Victoria); Professor Helen Herrman (Team Leader, Victoria); Mrs Ailsa Korten (Statistician); Associate Professor John McGrath (Team Leader, Queensland); Ms Vera Morgan (Project Database Manager). Other investigators at the four sites included: Scott Henderson, Stephen Rosenman, Jo Medway (Australian Capital Territory); David Chant, Susette Cardy, Chris Young, Ben Chapple (Queensland); Ian Gordon, Tom Trauer, Helen Evert, Tony Pinzone (Victoria); Anna Waterreus (Western Australia). A complete list of the investigators is available in: Jablensky, A., McGrath, J., Herrman, H., Castle, D., Gureje, O., Morgan, V., & Korten, A. on behalf of the study group (1999) People Living with Psychotic Illness: An Australian Study 1997-98. National Survey of Mental Health and Wellbeing - Report 4. Canberra: Australian Mental Health Branch, Commonwealth Department of Health and Aged Care. Ethics approvals for the study were obtained from relevant institutional ethics committees. Full details are available on request. The study was funded by the Commonwealth Department of Health and Aged Care for those components carried out in Brisbane, Melbourne and Perth. The component carried out in Canberra was funded separately by the Australian Capital Territory Department of Health and Community Care, and The Psychiatric Epidemiology Research Centre, Australian National University. This report also acknowledges, with thanks, the hundreds of mental health professionals who assisted in the preparation and conduct of the survey and the many Australians with psychotic disorders who agreed to participate. Without them, this study would not have seen the light of the day.

Local acknowledgments

Interviewers

Monique Decortis Andrew Green Naomi Harris Chris Hill Maggie McIntosh Susan Roberts Rosemary Thomas

Technical Advisory Committee:

Dr John Reilly, St. Vincent's Mental Health Service Dr Tom Trauer Ms Julie Shaw, VMIAC Ms Heather Moore Assoc Prof Andrew MacKinnon, Mental Health Research Institute Mr Fionn Skiotis, Yarra Community Housing Group Dr Ian Gordon, Statistical Consulting Centre, University of Melbourne Ms Ellie Fossey, La Trobe University Ms Margaret Grigg, St. Vincent's Mental Health Service Special thanks to all the non-government organisations that assisted in conducting this study.

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Executive summary

The National Survey of Mental Health and Wellbeing (NSMHWB) was commissioned by the Commonwealth Department of Health and Aged Care and was conducted during 1997 and 1998. As part of the NSMHWB, a two-phase survey of low prevalence (psychotic) disorders (LPD) was undertaken in predominantly urban catchment areas of the Australian Capital Territory, Queensland, Victoria and Western Australia. The 980 participants were identified using a census and screen, and subsequent sample interviews were undertaken using a specially designed instrument (Diagnostic Interview for Psychoses - DIP) covering demographic details, living circumstances, symptoms, and service utilisation. The functioning and disability of participants in this survey, which are the core subject matter of this bulletin, were assessed using the Disability Module of the Diagnostic Interview for Psychoses (DIP-DIS). (Gureje et al. 2001) This bulletin considers the functioning, housing and social relationships of people living with psychosis in Australia. Functioning and disability are defined according to those aspects of the International Classification of Functioning, Disability and Health (ICF) framework (World Health Organisation 2001) that describe the activity and participation of individuals, and the contextual factors (personal and environmental), which interact with them in affecting individuals' functioning. Within this model, there is a dynamic relationship between health conditions (in this case, psychosis), these aspects of functioning, and personal and environmental contextual factors. In this bulletin, the health condition is categorised by diagnosis and course of psychotic disorder. The contextual factors chosen as especially pertinent to the functioning and disability of people with psychosis are the personal factors of gender and age (Chapter 2) together with the environmental factors of social relationships (Chapter 5) and living conditions exemplified in housing types (Chapter 3). The social relationships of people in this survey were classified according to the extent of contact with relatives and/or friends into: `socially isolated', `friends dominated network', `family dominated network' and `socially integrated' (Chapter 5). With respect to participants' housing, special emphasis was given to people living in marginal accommodation (Chapter 4), defined as residential accommodation affordable on a pension, characterised by lack of secure tenure, little privacy, and shared kitchen and bathroom facilities.

Functioning and disability - relevant personal and clinical factors for people with psychosis

A substantial number of people with psychosis experience activity limitations and participation restrictions in key life areas. This is particularly so for those men and women with persisting psychosis. Despite this, less than one-fifth of interviewees participated in rehabilitation programs that have the potential to address these difficulties through individually tailored pharmacological, psychological, social and occupation-focused therapies. Of concern, mental health services are predominantly providing pharmacological treatments, with relatively little emphasis on the other therapies which may be more beneficial in the later stages of illness. · Given the limited involvement of this population in rehabilitation programs, greater access to such programs and/or treatments with a rehabilitation or recovery focus appears to be much needed. The National Mental Health Strategy and state planning frameworks should reflect this need, and federal and state mental health resources should support the development of such programs by mental health services and the psychiatric disability support sector. Rehabilitation should be available at all stages of psychotic illness. Disability, homelessness and social relationships among people living with psychosis in Australia ix

· Like those with physical illness, many people with mental illness or impairments experience difficulties in daily living skills. Therefore, to enable them to compensate for their difficulties, they should have equal access to services provided by the joint federal and state program Home and Community Care (HACC). These include housekeeping, provision of meals and provision of environmental supports. · Mental health workers should be fully trained in the range of psychosocial interventions known to be effective. Case managers should also be able to call on other clinicians and service providers with the necessary skills and resources. · Further research into the effective ingredients of both case management and rehabilitation would be advantageous to better understand how disability among people with psychosis can be addressed within the specific and `real world' framework of mental health (and other services) in Australia. Most study participants identified no major occupation, suggesting that boredom and underactivity are likely to be contributing to diminished well-being and quality of life. Even when occupied, almost half of those interviewed experienced some occupational dysfunction, suggesting an inadequate fit between motivation, interest, skills and other personal attributes, and the nature and challenge of the available occupations. · This under-activity and boredom should be addressed by access to a variety of meaningful occupations. A number of systemic changes are necessary, including public education initiatives, as well as a review of policies and legislation to ensure that social and financial barriers to community reintegration do not continue to exist. · Research into the environmental and personal barriers that prevent people with psychosis from gaining and retaining meaningful occupation is required. Only 10% of people with psychosis reported full-time employment and a further 18% were in part-time employment in the previous 12 months. Much of the considerable psychological, physical and social impact implied by these figures may be avoidable, as experience elsewhere in the world has shown that many more people with serious mental illness, including psychotic disorders, can be meaningfully employed. People with schizophrenia and schizo-affective disorder are less likely to be employed compared with others with psychotic disorders. · Most people with psychosis require assistance, at both the systemic and individual level, either to retain or regain employment. More detailed and specific recommendations regarding employment, vocational training and education are outlined in the companion bulletin (Frost et al. 2002).

Disability, service use and quality of life among people living in different types of housing across Australia

The typical resident among those studied in supported, marginal or institutional accommodation is single, male and often diagnosed with schizophrenia. In the marginal and institutional settings, the resident often has less education and less chance of being employed than others who are living with psychosis. Residents of supported accommodation seem to be doing better than the other two groups: they are more likely to be occupied, including in paid work, they have fewer difficulties with caring for themselves, and they experience a lower level of social dysfunction. Under-activity is more common in staffed settings such as institutions, supported housing and hostels. The presence of staff does not of itself address people's under-occupation, for reasons that are likely to be complex.

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Data on everyday living tasks suggest that opportunities are especially limited for people in marginal and institutional settings. This suggests people's functioning may be limited through environmental barriers to activity and participation, as well as the effects of the psychosis itself and associated impairments. People in institutional settings, and to a lesser degree those in marginal accommodation, lack intimate friendships. So, whilst there are people nearby, there is a lack of intimacy in social interactions. Yet there is an expressed desire amongst many residents in these settings for such intimacy. · The widespread under-activity and social isolation in institutional settings should be addressed. This could be done by maximising the use of environmental supports to accommodate individuals' functional difficulties, and minimising environmental barriers that constrain their opportunities for occupation and relationships. Provision of improved access to rehabilitation and disability support could help to address these issues. The extent of smoking among people living with psychosis is a major public health issue, having adverse implications for physical health and life expectancy. In comparison to the Australian population, harmful alcohol consumption is more prevalent among people with psychosis living in all accommodation settings (except for those in supported housing) and is of particular concern among those living in marginal accommodation where it may contribute to housing instability. Likewise, heroin use is alarmingly high across all accommodation settings, especially in marginal accommodation. In contrast, access to drug and alcohol services among people with psychosis is extremely low. · Specially designed programs to help people with psychosis reduce or quit smoking need to be developed and made widely available through agencies such as community health, primary care and non-government organisations. · People with psychosis urgently require improved access to drug and alcohol services, particularly services addressing the specific issues arising out of the co-morbidity of mental illness and substance abuse. The degree of mismatch between people's needs (as inferred from the findings with regard to functioning) and service use appears to depend on the setting. For example, most people living in staffed settings get little support in managing housing or financial matters even though it could be anticipated that many have needs in this area. Particularly striking is the low use of the housing department by people in marginal accommodation. More encouraging is that the level of social support offered to those in supported accommodation increases as their level of social difficulty increases. · Greater attention should be given to the interaction between personal and environmental factors in recovery from psychosis. It is important to assess the individual's needs rather than make assumptions based on his/her current environmental circumstances, and to facilitate their recovery by matching their needs with the most appropriate environment.

Disability and service use among homeless people living with psychotic disorders in Melbourne

A systematic survey detected an unexpectedly high prevalence of people living with psychotic disorders in marginal accommodation in Melbourne (42%) compared with 21% in a similar study in 1989 (Herrman et al. 1989). The decline of low cost housing for people on low incomes in the study area is a linked observation of possible relevance. Except for people with psychosis in institutional settings, disability in everyday, occupational and social functioning is higher for those living in marginal accommodation than any other Disability, homelessness and social relationships among people living with psychosis in Australia xi

group. It is worrying that disability is so prevalent among residents in marginal accommodation because these settings are not specifically designed to cater for people with mental-health related needs. Significant disability and unmet needs are observed among homeless people with psychosis despite high rates of contact with specialist mental health services, including community mental health services. Even the best clinical services will fail to meet the needs of those with the most complex problems unless there is close co-operation with housing, welfare and disability support services, including vocational services, to provide support and assistance to each individual. · Clinical services, housing services and disability support services, including those provided by non-government organisations, should be better coordinated in order to more successfully meet the needs of people with regard to both their mental illness and their housing and living circumstances. This is essential for those with complex needs. · Departments responsible for housing and health should work together to develop a range of secure and stable accommodation options, with both flexible and outreach support to meet the various and changing needs of people with psychosis. · Research programs into homelessness and serious mental illness should include longer-term follow-up studies that focus on how to sustain early gains. A substantial minority of residents in marginal accommodation feel unsafe in their locality. There are also high levels of dissatisfaction among residents. · To facilitate service planning, more in-depth analyses of disability and unmet need among homeless people with psychosis are required, including the perspective of residents and staff. Homeless women with psychotic illness have particular characteristics pointing to a different profile of needs. Co-morbidity of psychotic illness with substance use is high, although less than for homeless men. They are more likely to experience psychotic depression, are more likely to be married or have previously been so, and have greater difficulties in their social functioning compared with homeless men. · The particular needs of homeless women with psychotic disorders need to be addressed in the provision of appropriate services, including attention to marital breakdown and wider aspects of social functioning.

Social networks and functioning of people with psychosis

Relative social isolation amongst people living with psychosis is common. Although the group of participants who were classed as socially integrated had some contacts with friends and family, many were still experiencing some social dysfunction, and almost half wanted more friends. One third of these people stated that they had no intimate friend. · Local, state and national organisations providing social opportunities in the wider community should examine whether their policies allow for appropriate access of those with psychotic disorders. Public education campaigns to combat stigma are required. · Community mental health services should provide more psychological, social and practical input that will assist people with psychosis to re-establish their social networks and also provide support to maintain existing networks to prevent future loss or deterioration in relationships. People's preferences should be explored and acknowledged. · Education and training programs are required to develop specific professional skills that will assist people with psychosis to better improve their social functioning. People with psychosis who are in contact with relatives (but not friends) may often be experiencing almost as much social dysfunction as those with virtually no contact with either friends or family. xii Disability, homelessness and social relationships among people living with psychosis in Australia

There is a small but nevertheless important minority of those participants who were isolated or had only family members in their networks that appear to actively reject the need for more friends. Those survey participants who had friends in their social networks were rated as having better self care. The converse association is observed for employment. People with networks dominated by family were more likely to be employed than those in friends dominated networks. It seems likely that the nature of people's social networks, whether primarily composed of friends or family members, may have differing relationships to varied aspects of their functioning. · There should be more quantitative and qualitative research that focuses on the quality of relationships of people with psychosis. Further, their expressed needs with regard to social relationships should be surveyed and taken into account. There is an important association between social isolation and socio-economic disadvantage. The most socially isolated individuals are far less likely to have a job or live in `independent accommodation' (their own or a family home, or rented accommodation). The presence of other people in a person's living arrangement may not truly reflect their opportunities for, and engagement in, social interactions. For example, many people living in institutional settings or marginal accommodation where other people are often around are nevertheless socially isolated. Conversely, one cannot assume that people who are living in rental properties (often alone) are without contact with friends and family. · Community mental health services should review their policies to ensure that they have effective outreach procedures to facilitate the access of people with psychosis who are particularly socially isolated. This will allow assessment of, and effective intervention for, their significant difficulties with regard to daily living skills.

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1.

Disability, homelessness and social relationships ­ an introduction

1.1 The Low Prevalence (Psychotic) Disorders Study

The National Survey of Mental Health and Well-being (NSMHWB) was commissioned by the Commonwealth Department of Health and Aged Care and was conducted during 1997 and 1998. As part of the NSMHWB, a two-phase survey of low prevalence (psychotic) disorders (LPD) was undertaken in predominantly urban catchment areas of the Australian Capital Territory, Queensland, Victoria and Western Australia (Jablensky et al. 1999a; Jablensky et al. 1999b; Jablensky et al. 2000). The aims of the survey were to: · establish one-month and one-year prevalence estimates of psychotic disorders among adults aged 18 to 65 years in Australia · establish a demographic profile of individuals with psychotic disorders · quantify the rates of disability associated with psychotic disorders · determine the pattern of service utilisation by individuals with psychotic disorders · provide an estimate of unmet needs for individuals with psychotic disorders. The 980 participants in the LPD were identified using a census and screen, and subsequent sample interviews were undertaken using a specially designed instrument (Diagnostic Interview for Psychoses - DIP) covering demographic details, living circumstances, symptoms, level of disability and service utilisation. The DIP was designed to be used by trained mental health professionals in this study. An overview of the methods and findings of the study, including detailed prevalence estimates, is published as a report and bulletin (Jablensky et al. 1999a; Jablensky et al. 1999b). Additional bulletins present detailed analysis and discussion of findings from the study. Four companion bulletins cover: the employment of persons with psychotic disorders (Frost et al. 2002); the effects of stigma and discrimination (Carr and Halpin 2002); an economic analysis of disability and service costs associated with psychosis (Carr et al. 2002); and, a detailed analysis of the use of psychopharmacological and other treatments by people living with psychosis in Australia (Morgan et al. 2002). This bulletin considers the functioning, housing and social relationships of people living with psychosis in Australia.

1.2 The importance of functioning and disability of persons with psychosis

There is increasing recognition of the importance of the functional impact of mental disorders and the need to estimate disability associated with these disorders, as exemplified by the Global Burden of Disease study (Murray and Lopez 1997). In considering recovery from psychosis, it is now acknowledged that improved functioning does not equate with, or automatically follow from, resolution of psychotic symptoms (Carpenter and Strauss 1991; Harding et al. 1992) and so recovery involves a more complex and varied process than previously thought. Consequently, the pathways to improved functioning and recovery, for individuals or groups of individuals receiving particular services are likely to be more varied and necessitate a wider range of treatment approaches from service providers. In Australia, consultation with service providers, Disability, homelessness and social relationships among people living with psychosis in Australia 1

carer groups and consumer groups has suggested that improved functioning (as contributing to disability) and quality of life are outcomes rated as significantly more important than improvement in symptoms or consumer satisfaction (Andrews et al. 1994). This is supported by the personal stories of people with psychosis. Thus, people living with mental illness (especially psychosis) have emphasised the importance of improved functioning, as distinct from symptom resolution, to their experience of recovery (Leete 1989; Davidson and Strauss 1992; Deegan 1996). The findings of the LPD study as they relate to functioning and disability of people living with psychosis in Australia provide some insight into personal experiences of recovery since those experiences are reflected in the ratings made within the semi-structured interview to assess disability (see Appendix 1). The findings reported here on functioning and disability have important implications for service organisation and delivery.

1.3 Scope of this bulletin

Although functioning is complex and inadequately defined (Fossey and Harvey 2001), and models of disability are still evolving, one recent model of human functioning and disability that has gained recognition is that of the World Health Organisation's ICIDH-2 (World Health Organisation 1999). In their revision of this International Classification of Impairment Disability and Handicap, human functioning and disability are viewed as outcomes of an interaction between a person's physical and mental condition and their social and physical environment. The World Health Assembly has recently ratified this model, now referred to as the International Classification of Functioning, Disability and Health (ICF). (World Health Organisation 2001) Figure 1. Current understanding of interactions between dimensions of ICF

Health condition

(disorder or disease)

body functions and structure

activity

participation

environmental factors

personal factors

Source: Adapted from the World Health Organisation 2001 ICF

This bulletin provides a detailed description of how people living with psychosis are functioning in relation to their activities and participation in community life, in the following areas: · · · · · · 2 occupational performance (including paid and unpaid occupations) participation in household activities social relationships intimate relationships sexual relationships quality of interpersonal relationships Disability, homelessness and social relationships among people living with psychosis in Australia

· self care · interest in the outside world. These areas cover performance of activities to meet basic needs (such as caring for oneself) as well as the nature and extent of their participation in life situations (for example, employment). As summarised in the ICF model (Figure 1), there is a dynamic relationship between health conditions (in this case, psychosis), these aspects of functioning, and personal and environmental contextual factors. In this bulletin, diagnosis and course of psychotic disorder categorise the health condition itself. Some personal factors relevant to functioning in general (World Health Organisation 1999) as well as to functioning in psychosis in particular (Harding and Keller 1998; Jablensky 2000a) are gender and age. Numerous environmental factors are affected by, and have an effect on people, including those living with psychosis (Jablensky 2000b). These include social relationships and living conditions exemplified in people's housing. These aspects of the health condition, and personal and environmental factors will now be elaborated.

1.4 The relevance of the attributes of the health condition and personal factors to functioning

Persons with psychosis are generally considered to have a more severe degree of psychiatric symptomatology and associated poorer functioning than for those without psychosis. For example, when psychotic symptoms are part of the picture of affective disorder, the outcome is less positive. Persons with psychotic affective disorders continue to demonstrate functional deficits, especially in short-term follow up studies, although improvement is likely over time (Henry and Coster 1996). It has been thought that an even poorer social and occupational functioning is associated with schizophrenia compared with affective psychoses. A majority of studies show that the functional difficulties (including in social relationships) in schizo-affective disorder are intermediate between those of schizophrenia and affective disorders (Kendler et al. 1995). There is general agreement that the course of the disorder (that is, the pathways or trajectories of the disorder) has an impact on social and occupational outcome (Jablensky 2000a). Typically, the more protracted the episodes of illness, the shorter the periods of remission and/or the greater the `residual symptomatology', the more substantial the negative impact on social and occupational functioning (Strauss and Carpenter 1977; Henry and Coster 1996). Age is also important for two main reasons. Firstly, from a developmental perspective, the impact of a psychotic disorder on a person's functioning depends on the age at which the disorder develops and the subsequent impact on developmental tasks-for example, getting a job (EPPIC 2001). Secondly, the trajectory of the disorder and thus, its functional impact, may vary with the person's age. In the case of schizophrenia, this disorder used to be considered as an intractable, deteriorating illness (Jablensky 2000a). There is now a growing realisation from carefully conducted long-term follow-up studies that a high proportion of people recover, either completely or with mild residual abnormalities, after decades of severe illness (Harding et al. 1987). There is less effect of age on outcome of mood disorders, apart from in the elderly where depression, although milder, is often more prolonged and hence may have a more sustained impact on everyday and social functioning. Recent studies of first-episode psychosis suggest that the disorder is less severe and episodes are less frequent in women. In the early stages of the illness, men tend to demonstrate poorer social and occupational functioning. However, these gender effects seem to diminish over time (Jablensky 2000a). Although both non-psychotic and psychotic depressions are more common in women, reports of gender differences in functional outcomes are scarce. Disability, homelessness and social relationships among people living with psychosis in Australia 3

1.5 The relevance of environmental factors to a person's functioning

The Diagnostic Interview for Psychoses - Disability Module (DIP-DIS) was specially designed to assess the functioning and disability of participants in this study (Gureje et al, 2001). See Appendix 1 for details. The central core of the DIP-DIS is an abridged and modified version of the World Health Organisation. Disability Assessment Schedule (WHO/DAS). (World Health Organisation 1988) Consistent with the WHO/DAS, the baseline for rating was provided by the prevalent social norms and expectations about the particular role, since disability can be manifest only in a social context. When making their ratings, interviewers took into account that there is no single norm that is valid for all ages, for both sexes, and for each social and cultural setting. Beyond this, the LPD was not designed to take account of all environmental circumstances and conditions relevant to an evaluation of the functioning of persons with psychosis. For example, in relation to social functioning, it has been suggested that `the whole person, the illness, and the environment must be measured simultaneously if we are to begin to understand these complex and interactive processes' (Harding and Keller 1998). While this was not possible, information from the LPD is unusually rich in a study of this scope and allows us to describe and begin to explore the interaction between key environmental features and persons with psychosis. Our objective is to explore this interaction as far as the data will allow. Accommodation type and social networks are highlighted as these two factors influence each other-each indicate an important aspect of quality of life and are closely related to the social isolation often experienced by those living with psychotic disorders (Davidson et al. 1998).

1.6 The importance of adequate housing and the problem of homelessness

Most persons with psychosis experience significant socio-economic disadvantage as evidenced by the high proportion (85% of the LPD population) living on a government pension or some form of social benefit (Jablensky et al. 1999b). In these circumstances income is less sensitive as an indicator of relative socio-economic disadvantage among persons with psychosis than their type of accommodation. Moreover, consumers often identify basic needs such as shelter and a decent home as integral to their experience of satisfactory quality of life in the community (Davidson et al. 1996; Owen et al. 1996; Young and Ensing 1999). The different settings in which study participants live are also related to the type of social networks and support available to them. For these reasons we describe people with psychosis who were interviewed for the LPD, according to the accommodation in which they were living at the time. We pay special attention to the subgroup of participants who were homeless, or marginally accommodated, at the time of the study. Homeless people with mental illness have specific health and social needs that are often inadequately met by services. Stability of housing is an important pre-requisite for clinical improvement and episodes of illness may undermine such stability. Public concern about homeless people, and particularly the sub-group of them with mental illness, is evident in Europe (eg Scott 1993; Craig and Timms 1995; Kovess and Lazarus 1999), the USA (eg Caton 1990) and Australia (Herrman 1996; Teesson et al. 2000). The numbers of homeless people, however defined, appear to be growing in several countries (Scott 1993), and the characteristics of the sub-group with mental illness appear to be changing. The process of deinstitutionalisation began over 40 years ago when people with severe mental illness living in large psychiatric institutions moved to living in the community. A number of observers have assumed that de-institutionalisation is the main cause of increased numbers of homeless mentally

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ill people. However, careful studies of the discharge of long stay psychiatric patients, for example the TAPS (Team for the Assessment of Psychiatric Services) study in London, report that few people drifted into homelessness following hospital closure (Leff 1993). Commentators emphasise that it is not the policy of de-institutionalisation per se but its inadequate implementation that is likely to be relevant to the growing number of people who are homeless and mentally ill (Herrman et al. 1989; Thornicroft and Bebbington 1989). Consequently, the lack of appropriate community support services and adequate housing, and poor co-ordination of these services for homeless people with mental illness, have been criticised (Thomas and McCormack 1999). The relevance of these criticisms in Australia is supported by one of the main findings of the National Inquiry into the Human Rights of People with Mental Illness that there is a lack of appropriate housing and support to meet each person's individual needs (Burdekin et al. 1993). We therefore examine the circumstances of people with psychosis who are homeless or living in marginal accommodation and how these factors may be associated with their level of disability, social relationships and use of services.

1.7 The value of social networks

Nearly everyone wants and benefits from social relationships. People with psychosis are no different (Young and Ensing 1999). Social support and social networks are important factors in helping most people deal effectively with stress and life challenges. Supportive social interactions are associated with recovery from physical illness, emotional well-being and good work performance (Sarason et al. 1996). However, social isolation and loneliness is common among people with psychosis (Davidson and Stayner 1997). Living with a psychotic disorder can be stressful in its own right. The recruitment of social support is one coping skill that may moderate the negative effects of stressful life events (Henry and Coster 1996). However, people with psychosis often have marked deficits in social functioning. Social dysfunction interferes with performance at work, within the family and in the wider social environment (Bellack 1997). In turn, social disability is a primary source of stress, and affects quality of life (Bellack 1997). People with schizophrenia often have fewer social networks than other people and may have fewer opportunities to increase their social network (Albert et al. 1998). How this may be related to their functioning is relatively unexamined. In addition, most studies have not distinguished between having friends and having family in defining social networks. Therefore it is difficult to determine the separate effects of having either friends or family on functioning. The LPD study offers an opportunity to explore how contact with friends and/or family is associated with how people with psychosis are functioning. Interactions between several aspects of the lived experience of psychosis are described in this bulletin. These include the level of functioning in key life areas such as occupation and social relationships, and their interaction with a person's living situation. For example, a person living in a rooming house who is unemployed and has difficulties with their self care will have few opportunities to meet new people or participate in recreational activities that open up new social contacts. Likewise, if finances are limited, it is harder for people to keep up with old friends. We will examine these interactions using the data from the LPD survey. Subsequent chapters of this bulletin will consider disability, homelessness and social relationships for persons with psychosis in Australia. Recommendations are made concerning the implications for service delivery, training and education, research and public health.

Disability, homelessness and social relationships among people living with psychosis in Australia

5

1.8 Summary of aims

Our present aims are to: · describe the profile of functioning in subgroups of people living with psychosis, as defined by key demographic and clinical features (chapter two) · describe the study population of those living with psychosis according to subgroups defined by accommodation type, presenting a profile of their demographic and clinical characteristics, substance use, daily activities, social participation and quality of life (chapter three) · present a detailed case study of people with psychosis living in marginal accommodation, based on findings from the Melbourne site (chapter four) · describe the study population according to their social networks of family and friends, and explore the relationship between social integration and personal and occupational functioning (chapter five).

6

Disability, homelessness and social relationships among people living with psychosis in Australia

2.

Functioning and disability ­ relevant personal and clinical factors for people with psychosis

Over the past few decades the care of people with psychosis, in particular schizophrenia, has shifted from psychiatric hospitals to community settings. The resulting demands of community living have posed additional challenges for those who are attempting to live with their psychosis. Adequate living skills are required for community living but are often lacking among people with psychosis (Lesage et al. 1991). Hence, how well people are functioning in the community is an important question, since adequate performance of activities of daily living is a fundamental aspect of maintaining residential independence (Dickerson et al. 1999). Further, consumers report that everyday living skills for tasks such as food preparation, maintenance of hygiene, and taking care of one's living space are important factors in their recovery process, as are establishing a routine or taking part in exercise (Young and Ensing 1999). Friendship and social support (Davidson et al. 1998), and having a meaningful occupational role (Mueser et al. 2001) are also highly valued by people with schizophrenia and other psychotic disorders who are living in the community. Similarly, people with psychiatric disabilities (including those associated with psychosis) who had lived in institutional care felt that a successful return to the community was influenced by employment and support, as well as a desire to remain out of hospital and a positive sense of identity (Davidson et al. 1996). The aim of this chapter is to describe the functioning and disability of people with psychosis, with particular reference to those activities that are important for recovery and successful community living. Functioning and disability have been defined according to those aspects of the ICF framework (World Health Organisation 2001) that describe the activity and participation of individuals, and the contextual factors (personal and environmental), which interact with them in affecting individuals' functioning. The ICF framework encompasses the following components: · Body functions and structures. These are defined as the physiological and psychological functions of the body systems, and the anatomical parts (structures) of the body, such as organs, limbs and their components. Impairment is the term used to refer to problems in any of these body functions and structures. · Activity. This refers to an individual's execution of tasks or actions associated with activities in any area of life (for example, self care, domestic life, work, education, recreation, relationships), ranging from simple activities to complex and composite tasks that incorporate several simpler activities. Thus, activity is concerned with the person's ability to carry out tasks in his or her environment ­ ie, what the person can do (McLaughlin-Gray 2001). Thus, the term `activity limitation' is used to describe the difficulties a person may have executing tasks or actions in a life area. · Participation. Participation differs from activity in that it describes the individual's involvement with life situations, that is, what the person does in his or her environment across the range of areas of life. It denotes the individual's degree of involvement, incorporating notions of inclusion, acceptance and access to necessary resources for participation (McLaughlin-Gray 2001). Thus, society's responses to individuals may be either to facilitate or to hinder participation in any area of life, and problems that individuals may experience with participation in life situations are referred to as participation restrictions.

Disability, homelessness and social relationships among people living with psychosis in Australia

7

· Contextual factors. These refer to the various personal and environmental factors that can interfere with, or promote an individual's functioning in a given context, reflecting acknowledgment of the significance of person-environment interaction to functioning and health (McLaughlin-Gray 2001). Personal factors refer to those aspects of a person's particular background and life experience (for example, age, gender, educational and cultural background) that provide a context for current experience and functioning. Environmental factors include aspects of the physical, social and attitudinal environment that can act as barriers or facilitators of a person's activities and participation. While functioning reflects the interaction between these components, disability is perhaps most easily observed as activity limitations, bearing in mind that impairments (for example, in cognitive function) and participation restrictions may be contributing to these activity limitations. In this respect, social disadvantage could be seen as related to the individual (for example, his or her experiences of mental illness, activities and participation) and environmental barriers, such as those related to stigma and social exclusion. Although this survey was not designed to take full account of either the impairments or environmental factors relevant to functioning and disability, the findings regarding the nature and extent of participants' activities and participation will be presented with regard to contextual factors wherever possible. In addition, the public health implications of the findings will be explored. Using the ICF framework, the survey findings relating to functioning and disability of persons living with psychosis will be presented with attention to the factors indicated below: Figure 2.1 Adaptation of the ICF model to survey findings relating to function and disability

Health condition

disorder or disease (psychosis ­ diagnosis, course)

body functions and structure (hearing voices)

activity (self care)

participation (employment)

environmental factors (accommodation, social networks)

personal factors (age, gender)

The choice of personal factors (age and gender) and attributes of the health condition (in this case, psychotic diagnosis and course of illness or chronicity) were determined by a review of those factors already known to be important in determining a person's level of functioning (as described in chapter one).

8

Disability, homelessness and social relationships among people living with psychosis in Australia

2.1 Measures and definitions used in this chapter

The disability questionnaire used in this survey (DIP-DIS) is composed of abridged sections of the WHO/DAS (World Health Organisation 1988), the Lancashire Quality of Life Profile (Oliver et al. 1997), and the Social Contact Questionnaire by Tucker (Tucker 1982). Appendix 1 describes the development of the DIP-DIS together with its main features and properties, including inter-rater reliability. The DIP-DIS allows for assessment of functioning over the preceding 12 months in the following activities: · occupational performance ­ whether the person was less efficient in their work (either paid work or housework or studies) than they would have liked to be, and whether they have been criticised by others as a consequence · household activities ­ doing things for the family or household that were normally expected of the person such as cleaning, washing up or cooking · socialising ­ how the person was getting on with other people, including neighbours, members of the family and people at work. The overall rating reflected the person's perception of how successful their social interactions were · social withdrawal ­ whether the person preferred to be alone; whether the presence of others bothered them. The overall rating reflected the degree of avoidance of social contacts · quality of interpersonal relationships ­ whether the quality of interpersonal relationships had improved or deteriorated when compared to previous years. The rating estimated the change over time in one or both of the previous categories · intimate relationship* ­ whether the person had a close friend, that is, someone they could rely on for assistance or support if they needed. This can be taken as a proxy of social support · sexual relationship* ­ whether the person was in a sexual relationship and whether they were satisfied with this relationship. * These ratings need to be interpreted with caution as these items had lower inter ­ rater reliability (see Appendix 1) The following activities were assessed for the preceding month: · self care ­ whether the person had put effort into their appearance, and was keeping fit and healthy · interests and information ­ whether the person was keeping up with what was happening in the world, or with hobbies or interests. After a series of semi-structured probes to establish relevant life circumstances, opportunities and details of functioning (past and current) of the person in each area, the interviewer then made a rating that used all of the information. All items, except `quality of interpersonal relationships' were scored as: · 0 (no dysfunction) · 1 (obvious dysfunction) · 2 (severe dysfunction). Quality of interpersonal relationships was scored as: · · · · 0 (no deterioration perceived) 1 (deterioration due to subject's health or loss of interest) 2 (deterioration due to other people's loss of interest) 4 (improvement perceived). 9

Disability, homelessness and social relationships among people living with psychosis in Australia

A rating of 8 was made if an item was impossible to assess and 9 if not applicable. For example, 8 was used if the rating was still uncertain after detailed questioning and probing, and 9 was used if the person was not part of a household or was not in a sexual relationship. Psychotic disorder was sub-divided according to the following diagnostic groupings: · · · · schizophrenia schizo-affective disorder delusional and other psychosis (`other psychosis' in the tables) bipolar disorder with manic episode(s). (For simplicity, referred to as `bipolar mania' in the text and tables hereafter.) · psychotic depression Figure 2.2. Categories used for classifying course of disorder, which also serve as a proxy for severity of health care condition Categories used in data collection

Single episode good recovery

Categories used in data presentation

Single episode

Multiple episodes with good recovery

Multiple episodes

Multiple episodes with partial recovery

Chronic illness little or no deterioration

Chronic episodes

Chronic illness with clear deterioration

The above categories serve as a proxy for severity of health condition. They were assigned collaboratively through discussion between participants and interviewers. Diagrammatic representations of these different types of course of disorder were used to guide the assignment.

2.1.1 Service use

In order to begin to understand our findings related to functioning and disability and their implications for service organisation and delivery, a summary of participants' service use is provided in this chapter. Even without a comprehensive assessment of the participants' own views about their needs for services, this can be useful in beginning to draw inferences about 10 Disability, homelessness and social relationships among people living with psychosis in Australia

possible unmet needs. People were asked if they used the following services in the last 12 months: · medicine prescription · information about mental illness and about treatment and available services · psychotherapy, cognitive behavioural therapy, group therapy, counselling · help to improve your ability to work, or to use your time in other ways · help to sort out housing or money · help to improve your ability to look after yourself or your home · help to meet people for support and company. These items were scored as: · 0 (did receive service but needs not adequately met) · 1 (did receive service and needs were adequately met). Again, a rating of 8 was made if an item was impossible to assess and 9 if not applicable.

2.2 Findings

All tables of findings appear at the end of this chapter. Table 2.1 summarises the sociodemographic characteristics of the participants in the LPD. The remaining tables report the presence of dysfunction (either obvious dysfunction or severe dysfunction) among persons with psychosis according to: · age and gender (personal factors) · diagnosis and course of disorder (aspects of health condition).

2.2.1 Socio-demographic characteristics

A total of 980 people participated in the study (586 men and 394 women), the overwhelming majority of whom met diagnostic criteria for psychosis (Jablensky et al. 1999b). Table 2.1 summarises their socio-demographic characteristics. Most were single and had never married (64%); this was particularly so among men aged 34 years or younger (91%). Among females aged 45 and above, 51% were married or living in a defacto relationship. Just under half of the people interviewed had left school before obtaining qualifications. A somewhat higher proportion of people aged under 35 had completed secondary school (24%), compared with people aged 45 and above (12%). More than four out of five people were receiving a government pension, and 68% were receiving the Disability Support Pension.

2.2.2 Work, study, and home duties

Tables 2.2, 2.3 and 2.4 describe participation in work, study and home duties. Overall, only 10% were participating in full-time, and 18% in part-time employment during the previous 12 months (Table 2.2). A slightly higher proportion of males was in full-time employment (11%) compared with females (8%). There was a progressive decline in the proportion of people engaged in fulltime or part-time employment with increasing age. Involvement in employment declined with increasing severity of psychosis as indicated by course of disorder (Table 2.3). Thus, those with a single episode of psychosis had the highest levels of full-time and part-time work (21% and 27%, respectively) compared to only 4% and 11%, respectively, of those who had a more chronic illness. A lower proportion of people with a diagnosis of schizo-affective disorder (4%) were in full-time employment than people in other diagnostic groups (Table 2.4).

Disability, homelessness and social relationships among people living with psychosis in Australia

11

Small proportions of persons with psychosis participated in either housework (6%) or study (5%). The main difference between the groups was in gender roles, with a higher proportion of females engaged in home duties (14%) than males (0.3%) and a higher proportion of females studying (7%) than males (3%). See Table 2.2. People with chronic illness were less likely to be involved in either home duties or study (2% in both cases). See Table 2.3. More than half of the sample was not involved in any work, study or home duties. Of the 374 people (38%) who said they had some sort of occupation (paid work, study or home duties), 46% were rated as having activity limitations in this area (Table 2.2). Occupational dysfunction was defined as being less efficient in the preceding 12 months in their occupation than they would have liked and receiving criticism about this from others (supervisors, work-mates, members of the household). A slightly higher proportion of males reported occupational dysfunction (49%) compared with females (43%). As seen in Table 2.4, those with schizophrenia and schizoaffective disorder reported the most occupational dysfunction among all the diagnostic groups (42% and 44%, respectively). Household activities Of those interviewed, 53% described themselves as part of a household. A much higher proportion of females (59%) compared with males (48%) were living in households (Table 2.2). Of the people experiencing a chronic course of illness, 45% were living in a household compared with 59% of people with a single episode (Table 2.3). Those living in a household were asked about their ability to do things normally expected by their family or other members of the household (`household activities'). As seen in Table 2.2, a total of 49% of those in households said they were unable to do these tasks because of illness or loss of interest in such tasks. A slightly lower proportion of women (47%) reported having problems in this area compared with men (51%). Of those with chronic illness, 61% experienced limitations in performing household activities compared with 35% of those with a single episode of illness (Table 2.3). There was no marked difference between the different psychotic diagnoses when men and women were considered together (Table 2.4). However, men with either psychotic depression (67%) or delusional disorder and other psychoses (62%) more frequently reported difficulties with household activities than other diagnostic groups, whereas women with bipolar mania reported most limitations (56%), and those with delusional disorder and other psychoses reported least (43%).

2.2.3 Relationships with others, self care and outside interests

Socialising Table 2.5 shows that the majority of interviewees (59%) were rated as having dysfunction in socialising, that is, they experienced a lack of success in their social interactions. A higher proportion of males (63%) compared with females (53%) was rated as having such difficulties. Increasing age seems to be associated with more disability in this area of functioning (Table 2.5), as does having a more chronic course of illness (Table 2.6). With respect to course of disorder, the group experiencing least success in socialising was males with chronic illness. Almost three of every four (74%) in this group reported dysfunction in socialising. With respect to diagnosis, difficulties in socialising were most common among those with schizo-affective disorder (67%) and least common among those with bipolar mania (51%). See Table 2.7. The group with most limitations was males with psychotic depression (78%). Social withdrawal Fifty eight per cent of interviewees were rated as having obvious or severe social withdrawal (Table 2.5). Once again, a higher proportion of males (61%) compared with females (52%) were 12 Disability, homelessness and social relationships among people living with psychosis in Australia

rated as having problems in this area. Among people with chronic illness, 69% reported social withdrawal (Table 2.6). Consistent with the features of depression, a higher proportion of people with psychotic depression (73%) reported social withdrawal than any other diagnostic category including schizophrenia (60%). This was most marked among males with psychotic depression (85%). See Table 2.7. Intimate relationships Over the preceding 12 months, 39% of participants lacked an intimate relationship (Table 2.5), with a higher proportion for males (44%) than females (32%). There was little variation across age groups, except the figure was considerably higher (38%) for women aged over 44 years compared with those under 35 years (28%) or those aged between 35 and 44 (25%). Many more people with a chronic course of illness (53%) reported the absence of an intimate relationship compared with those experiencing other courses of their disorder (Table 2.6). Table 2.7 indicates that a higher proportion of people diagnosed with schizophrenia (48%) did not have a close friend compared with people with other diagnoses. Sexual relationships Nineteen per cent of those surveyed reported that they had no sexual relationship or no opportunity for one in the preceding year (Table 2.5). Of those in sexual relationships, 21% reported they were not satisfied or had problems in their sex life as a result of their illness. There were no real differences between men and women. Differences between those with different courses of disorder were less marked than for other aspects of social relationships, whilst people with schizophrenia (15%) reported less dysfunction in this area than other diagnostic groups, despite being the least likely to report having intimate relationships (Table 2.7). Self care Obvious or severe dysfunction in self care was experienced by 30% of people living with psychosis (Table 2.5). A higher proportion of males (34%) than females (24%) was rated as having dysfunction in this area. People aged 45 years and above were more likely to be rated as having difficulties in self care (34%), compared with people aged less than 35 years (27%) and this was most evident among males (40%). A much higher proportion of people with a chronic illness course (43%) was assessed as having difficulties with self care compared with those with a single episode (17%). See Table 2.6. More people with schizophrenia (35%) had difficulties in caring for themselves than any of the other diagnostic groups (Table 2.7). Outside interests Outside interests were rated for the past month. Overall two out of five interviewees had obvious or severe dysfunction in relation to keeping up outside interests (Table 2.5). Men were more likely to experience these kind of difficulties (42%) compared with women (36%). There were no striking age differences. Chronicity of illness course had a large impact on people's interest in the outside world ­ 54% of those with a chronic course were not keeping up with events compared with 22% of people experiencing a single episode (Table 2.6). As shown in Table 2.7, more people with schizophrenia (45%) had dysfunction in this area than any other diagnostic group.

2.2.4 Service use

When discussing the range of disability among people with psychosis it is also important to examine their service use (see section 2.1). Overall, most people were receiving prescribed medication (91%), fewer people were receiving therapy or counselling (39%) and even fewer participated in rehabilitation or a day program (19%). See Table 2.8. People aged 45 years or

Disability, homelessness and social relationships among people living with psychosis in Australia

13

more were less likely to receive services such as provision of mental health information, therapy or counselling, or help to improve work skills and use of time. This is particularly striking given that older people were less likely to be meaningful occupied than their younger peers. Males were slightly more likely to receive guidance in housing and financial matters (36%) than females (30%) and females were slightly more likely to receive counselling or therapy (43%) compared with males (37%). People with a chronic course of illness were less likely to receive mental health information, therapy or counselling, or assistance with work skills or time use than people with a single or multiple episodes of illness, but were more likely to receive assistance in managing housing and financial matters (Table 2.9). They were also less likely than those with multiple illness episodes to attend a rehabilitation or day program (17% and 22%, respectively). With respect to diagnostic categories, people with psychotic depression and schizo-affective disorder were more likely to receive a service to improve their work or time use skills (Table 2.10). People with schizophrenia were least likely to receive therapy or counselling (34%). People with psychotic depression (21%) and bipolar mania (24%) were less likely to have received services to assist with housing and financial matters. People with a diagnosis of bipolar mania were also less likely to receive assistance with self care compared with their peers with other diagnoses.

14

Disability, homelessness and social relationships among people living with psychosis in Australia

Table 2.1

Males (n=586) Females (n=394) Total (n=980) Total <=34 35-44 >=45 340 271 369 394 Total 980 Total <=34 35-44 >=45 167 106 121 586 35-44 >=45 173 165

Socio-demographics by gender and age (per cent)

Age (years)

<=34

n

248

Marital status

78.8 53.8 76.6 68.6 46.2 24.6 43.9 83.7 66.1 18.1 15.9 10.6 5.7 24.6 31.5 24.6 50.9 33.0 20.8 17.4 14.0 10.1 13.3 15.6 30.6 8.5 12.7 39.4 20.0 40.6 63.5 15.9 20.6

Single, never married

91.1

Divorced/separated/widowed

7.3

Married/defacto

1.6

Education ­ Highest qualification

20.6 8.7 17.9 25.6 13.2 15.0 17.8 23.6 20.1 7.6 46.6 2.1 17.0 15.0 47.2 3.0 13.8 15.6 53.3 2.3 17.9 20.8 43.4 4.7 20.7 9.1 42.1 2.5 22.0 9.4 48.1 2.6 27.2 10.4 50.9 2.8 20.0 12.1 44.2 3.1 17.7 19.2 15.5 43.9 3.7 11.8 20.6 12.9 52.1 2.6 17.9 20.0 11.6 47.8 2.7

Completed secondary school

22.6

Trade or other certificate

19.8

Undergraduate/postgraduate

6.9

Left school, no qualifications

48.8

Other

1.9

Source of income

90.3 86.7 88.6 81.0 75.5 82.6 68.9 61.3 53.7 72.4 83.2 78.2 80.2 62.2 86.2 58.5 84.5 71.6 84.7 76.2 85.2 68.3

Government pension

88.7

Disability, homelessness and social relationships among people living with psychosis in Australia

Disability Support Pension

60.9

15

16

Males (n=586) Females (n=394) Total (n=980) Total <=34 35-44 >=45 338 269 366 392 Total 973 Total <=34 35-44 >=45 167 105 120 581 35-44 >=45 171 164 12.2 7.0 11.0 13.3 6.7 5.4 8.2 13.1 10.0 20.4 7.8 3.3 23.0 4.1 7.4 17.3 13.8 6.6 2.8 51.3 179 43.0 232 47.4 52.5 174 51.7 214 46.7 58.4 113 48.7 134 52.2 11.4 12.0 5.4 6.6 44.2 46.7 59.3 56 33.9 89 48.3 57 45.6 60 56.7 66 48.5 83 39.8 22.9 20.0 3.8 20.8 10.8 10.8 18.8 0.3 3.0 3.3 9.9 2.9 63.7 195 49.2 283 50.5 65.9 71.9 31 29.0 78 51.3 56 51.8 74 48.6 11.1 18.9 6.2 11.2 5.9 2.7 8.3 65.7 87 32.2 167 49.7 9.9 18.2 5.8 4.6 2.9 58.7 374 46.3 515 49.1

Table 2.2 Work, study, home duties by gender and age (per cent)

Age (years)

<=34

n

246

Main ccupation

Full-time work outside the home

13.0

Part-time work outside the home

24.0

Housework

0.8

Studying

5.7

Retired

None of above

56.5

Those in main occupation* (n)

108

Obvious/severe dysfunction in occupational performance

53.7

Those in household (n)

131

Obvious/severe dysfunction in household activities

51.1

Disability, homelessness and social relationships among people living with psychosis in Australia

* Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.

Table 2.3

Males (n=586) Females (n=394) Total Total 392 82 470 421 581 29 218 145 multiple chronic single episode episodes illness single episode multiple episodes chronic illness single multiple episode episodes chronic illness 276 53 252 Total (n=980) Total 973

Work, study, home duties by gender and course of disorder (per cent)

Course of disorder

n

Main occupation

24.5 20.8 3.8 5.7 1.9 43.4 29 15.1 24.2 4.7 13.4 2.2 3.3 76.4 56 31.0 21 23.8 19 47.3 135 43.7 21.1 37.9 78 60.3 37.5 112 49.2 283 50.5 61.6 43.0 232 47.4 11.0 18.8 0.3 3.3 2.9 63.7 195 13.8 37.9 3.4 13.8 11.0 21.1 19.7 8.3 3.7 36.2 129 2.8 7.6 6.9 2.8 2.1 77.9 29 8.2 17.3 13.8 6.6 2.8 51.3 179 20.7 26.8 3.7 8.5 1.2 39.0 50 36.0 48 35.4 4.0 2.8 54.0 110 56.4 142 43.0 44.8 29 44.8 13.2 22.8 9.1 6.0 3.2 45.7 239 51.5 277 43.3 4.0 11.4 2.4 2.4 2.9 77.0 85 37.6 190 61.1 9.9 18.2 5.8 4.6 2.9 58.7 374 46.3 515 49.1

Full-time work outside the home Part-time work outside the home Housework Studying Retired None of above Those in main occupation *(n) Obvious/severe dysfunction in occupational performance Those in household (n) Obvious/severe dysfunction in household activities

Disability, homelessness and social relationships among people living with psychosis in Australia

* Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.

17

18

Males (586) Females (n=394) Total (980) 5 6 Total 1 2 3 4 5 6 143 100 508 8.3 110 13.6 67 392 45 20.0 11.9 15.6 26.9 6.7 13.4 8.2 3.6 2.7 4.4 9.0 4.4 6.0 48.9 32.8 22 39 8.2 17.3 13.8 6.6 2.8 51.3 179 43.0 232 47.4 64 9.4 25.0 14.1 7.8 3.1 40.6 36 38.9 40 42.5 43 4.7 Total 973 9.9 18.2 6.3 8.0 2.6 1.0 4.9 3.5 50.0 67.7 55.0 51.0 52 150 46 65 51.9 42.0 43.5 46.2 27 39 29.6 56.4 57 261 46 85 50.9 48.3 50.0 52.9 5.8 4.6 2.9 58.7 374 46.3 515 49.1 6 Total 1 2 3 4 167 6.6 52 9.6 23.1 10.2 14.0 17.3 9.0 20.9 6.0 9.3 0.0 3.0 3.8 3.8 42.3 65.3 51.2 28 52 22 46.4 44.2 40.9 34 99 15 55.9 48.5 53.3 40 5.0 32.5 22.5 10.0 2.5 27.5 27 48.1 27 51.9 26 23.1 15.4 11.5 3.8 3.8 42.3 14 35.7 17 23.5 581 11.0 18.8 0.3 3.3 2.9 63.7 195 49.2 283 50.5 79 4 5 57 3.5 15.2 341 9.1 4.0 12.6 21.8 14.8 22.0 21.7 3.1 10.0 3.5 0.3 1.8 0.0 2.5 3.8 7.0 1.8 2.3 2.3 24 29 50.0 56.4 45

Table 2.4

Work, study, home duties by gender and diagnosis (per cent)

Diagnosis* 1

2

3

n 19

27

58

Full-time work outside the home 15.8 22.2 17.2

Part-time work outside the home 15.8 18.5 20.7 17.0 28.1 19.0

Housework

0.0

0.0 0.0

Studying

5.3

7.4 3.4

Retired

5.3 11.1 1.7

None of above

57.9 40.7 56.9 68.9 57.9 59.5

Those in main occupation (n) **

8

12

24 98

Obvious/severe dysfunction in occupational performance

75.0 75.0 58.3 40.8 45.8 55.2

Those in household (n)

10

12

23 162 31

Obvious/severe dysfunction in household activities

40.0 66.7 43.5 48.1 48.4 62.2

Disability, homelessness and social relationships among people living with psychosis in Australia

*1= no psychosis 2= psychotic depression 3= bipolar, mania 4= schizophrenia 5=schizo-affective 6=other psychosis ** Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.

Table 2.5

Relationships with others, self care and outside interests by gender and age (per cent)

Males (n=586) Females (n=394) Total (n=980) Total <=34 35-44 >=45 Total 980 59.1 57.6 39.1 269 20.1 28.2 24.4 26.8 39.3 29.2 39.9 27.4 17.9 33.5 39.7 795 20.6 29.7 23.3 29.8 39.6 340 62.4 58.5 40.9 271 59.0 60.1 38.0 208 24.5 369 56.1 54.7 38.2 318 18.6 33.0 27.5 394 53.3 52.3 31.5 340 21.2 27.4 29.2 23.6 36.0 Total <=34 35-44 >=45 167 58.7 52.1 38.3 141 23.4 23.2 24.4 26.9 35.9 106 48.1 53.8 24.5 87 26.4 28.2 31.1 21.7 43.4 121 50.4 51.2 28.1 112 14.3 32.5 34.2 20.7 29.8 586 63.0 61.1 44.2 455 20.2 31.3 19.3 34.0 42.0 <=34 35-44 >=45 173 65.9 64.7 43.4 128 16.4 31.4 11.6 39.9 43.4 165 66.1 64.2 46.7 121 23.1 28.3 20.1 33.9 37.6 248 58.9 56.5 43.1 206 20.9 33.2 24.2 29.8 44.0

Age (years)

n

Obvious/severe dysfunction in socialising

Obvious/severe social withdrawal

No intimate relationship/s

Those in relationship (n)

Obvious/severe dysfunction in sexual relationships

Social deterioration in last 12 months

Social improvement in last 12 months

Obvious/severe dysfunction in self care

Disability, homelessness and social relationships among people living with psychosis in Australia

Obvious/severe dysfunction in outside interests

19

20

Males (n=586) Females (n=394) Total (n=980) Total 394 53.3 45.8 51.0 49.5 28.3 375 24.3 30.3 23.2 16.9 36.0 21.7 28.2 20.1 29.8 44.6 31.3 62 19.4 32.9 52.3 31.5 340 21.2 27.4 29.2 23.6 70.8 69.1 52.6 358 17.0 28.4 17.7 43.2 54.0 Total 980 59.1 57.6 39.1 795 20.6 29.7 23.3 29.8 39.6 Total 586 63.0 40.0 47.5 64.8 64.1 44.1 134 14.2 28.4 21.3 37.2 49.0 45.2 24.7 183 27.3 26.9 34.3 16.4 30.1 46.7 20.0 23 13.0 26.7 30.0 10.0 16.7 61.1 44.2 455 20.2 31.3 19.3 34.0 42.0 multiple episodes 219 n 49.1 53.9 73.8 71.7 57.0 224 18.8 28.4 15.9 46.2 56.6 53.1 31.5 192 21.4 33.3 23.0 23.2 29.5 43.4 37.7 39 single multiple chronic episode episodes illness 53 254 279 single episode 30 chronic illness 145 single multiple episode episodes 83 473 chronic illness 424 36.5 19.2 20.8 24.5

Table 2.6

Relationships with others, self care and outside interests by gender and course of disorder (per cent)

Course of disorder

Obvious/severe dysfunction in socialising

Obvious/severe social withdrawal

No intimate relationship/s

Those in relationship (n)

Obvious/severe dysfunction in sexual relationships 23.1

Social deterioration in last 12 months

Social improvement in last 12 months

Obvious/severe dysfunction in self care

Disability, homelessness and social relationships among people living with psychosis in Australia

Obvious/severe dysfunction in outside interests

Table 2.7

Males (586) Females (n=394) Total (980) 6 Total 1 2 3 4 5 6 145 53.1 49.7 27.6 91 422 77 120 28.3 25.5 23.4 24.1 40.0 110 510 102 394 46 67 Total 980 59.1 57.6 39.1 795 20.6 29.7 23.3 29.8 39.6 5 6 Total 1 2 3 4 5 44 64 168 52 40 586 26 42.3 50.0 50.0 57.7 65.9 42.2 53.3 54.3 61.2 50.9 61.2 66.7 42.3 65.0 50.0 55.4 56.8 39.1 52.3 47.8 73.1 50.9 59.6 59.8 19.2 30.0 15.4 44.6 27.3 18.8 31.5 30.4 35.8 24.5 48.4 30.4 18 37 44 148 35 58 340 31 54 58 81 1 2 3 4 58 342 27 20 70.0 77.8 51.7 62.9 67.2 61.7 63.0 55.0 85.2 51.7 61.7 62.1 58.0 61.1 45.0 44.4 32.8 50.3 32.8 34.6 44.2 13 17 47 274 42 62 455 15.4 23.5 17.0 15.0 35.7 35.5 20.2 35 48.1 34.5 28.7 38.6 28.2 31.3 10 18.5 22.4 20.6 17.5 15.4 19.3 30.0 33.3 19.0 38.3 31.0 29.6 34.0 45.0 37.0 24.1 45.9 39.7 40.7 42.0

Relationships with others, self care and outside interests by gender and diagnosis (per cent)

Diagnosis*

n

Obvious/severe dysfunction in socialising

Obvious/severe social withdrawal

No intimate relationship/s

Those in relationship (n)

Obvious/severe dysfunction in sexual relationships

16.7 21.6 36.4 14.9 31.4 20.7 21.2 16.1 22.2 26.4 14.9 33.8 16.0 22.5 34.6 27.9 35.7 22.2 27.4 24.4 32.8 34.5 28.4 37.4 36.0 35.0 26.9 24.8 33.3 33.3 29.2 24.4 28.4 24.5 22.0 24.2 7.7 20.0 21.2 29.2 27.3 17.2 23.6 17.4 25.4 20.0 35.3 29.4 26.9 25.0 25.0 42.3 36.4 39.1 36.0 34.8 29.9 24.5 44.7 38.2

Social deterioration in last 12 months

Social improvement in last 12 months

Obvious/severe dysfunction in self care

Obvious/severe dysfunction in outside interests

Disability, homelessness and social relationships among people living with psychosis in Australia

*1= no psychosis 2= psychotic depression 3= bipolar mania 4= schizophrenia 5=schizo-affective 6=other psychosis

21

22

Males (n=586) Females (n=394) Total (n=980) Total <=34 35-44 >=45 Total 980 91.0 47.3 39.1 35.3 28.3 24.4 30.6 18.5 26.5 18.5 33.5 25.2 30.7 19.1 340 89.7 37.0 30.3 28.0 271 91.1 50.6 39.9 38.4 36.9 22.9 369 92.1 54.5 46.7 39.8 35.8 27.6 34.7 20.1 394 93.1 49.7 42.7 34.3 29.7 23.6 29.4 19.5 >=45 Total <=34 35-44 >=45 106 167 94.6 37.1 35.9 27.6 26.4 22.8 26.4 19.8 91.5 56.6 41.5 37.7 30.2 21.7 29.2 17.9 121 92.5 61.1 52.9 40.5 33.9 26.4 33.9 20.7 586 89.6 45.8 36.7 36.0 36.0 26.3 31.5 18.8 173 85.0 37.0 24.9 28.3 30.1 26.0 26.6 17.3 <=34 35-44 165 90.9 46.6 38.8 38.8 41.2 23.6 31.6 18.8 248 91.9 51.2 43.5 39.5 36.7 28.3 35.1 19.8 n

Table 2.8

People who received the following services by age and gender (per cent)

Age (years)

Medicine prescription

Provision of mental health information

Therapy, counselling

Help to improve work skills or time use

Guidance in managing housing and financial matters

Self care

Social support

Disability, homelessness and social relationships among people living with psychosis in Australia

Rehabilitation/day program

Table 2.9

Males (n=586) Females (n=394) Total (n=980) chronic illness 145 394 83 473 93.5 55.6 44.8 38.0 30.1 24.1 29.4 19.5 33.7 10.8 30.4 24.1 32.4 22.4 91.5 54.2 39.8 37.4 93.1 49.7 42.7 34.3 29.7 23.6 88.3 40.0 35.2 31.0 38.7 26.9 31.7 19.3 424 88.2 36.8 32.6 31.9 37.5 26.6 28.3 17.0 Total single multiple chronic episode episodes illness Total 980 91.0 47.3 39.1 35.3 33.5 25.2 30.7 19.1 single multiple episode episodes 30 219 95.9 56.6 47.1 36.9 23.7 22.4 29.2 21.0 96.7 46.7 46.7 30.0 30.0 16.7 20.0 10.0 single episode n 53 254 279 586 89.6 45.8 36.7 36.0 36.0 26.3 31.5 18.8 88.2 35.2 31.2 32.3 37.0 26.5 26.5 15.8 91.3 54.7 42.9 38.9 36.2 25.6 35.1 23.6 88.7 58.5 35.9 41.5 30.2 28.3 41.5 11.3 multiple chronic Total episodes illness

People who received the following services by gender and course of disorder (per cent)

Course of disorder

Medicine prescription

Provision of mental health information

Therapy, counselling

Help to improve work skills or time-use

Guidance in managing housing and financial matters

Self care

Social support

Disability, homelessness and social relationships among people living with psychosis in Australia

Rehabilitation/day program

23

Table 2.10

Males (586) Females (n=394) Total (980) 6 Total 1 2 3 4 5 510 110 67 394 46 64 6 6 Total 1 2 3 4 5 44 168 52 40 26 88.5 97.5 98.0 92.2 88.6 93.7 93.1 30.8 57.5 61.5 44.0 70.5 43.8 49.7 46.1 65.0 42.3 34.5 52.3 42.2 42.7 26.9 45.0 28.8 35.1 45.4 25.0 34.3 38.4 25.0 19.2 33.9 31.8 25.0 29.7 26.9 25.0 21.1 25.0 27.3 17.2 23.6 19.2 32.5 28.8 33.4 38.6 15.6 29.4 15.4 25.0 15.4 17.9 31.8 17.2 19.5 586 81 92.5 89.6 46.9 45.8 42.0 36.7 40.7 36.0 35.8 36.0 33.4 26.3 32.1 31.5 18.5 18.8 2 3 4 5 58 91.3 43.1 39.7 39.7 46.5 22.4 31.1 27.6 342 88.6 44.7 33.4 33.9 38.0 25.7 30.7 15.8 58 27

People who received the following services by gender and diagnosis, per cent

Diagnosis*

1

Total 980

n

20

102 145

Medicine prescription

80.0 92.6 91.4

84.8 95.5 94.6 89.8 90.2 93.1 91.0 45.6 55.2 51.8 44.5 54.9 45.5 47.3 37.0 56.7 44.6 33.7 45.1 42.1 39.1 28.2 47.8 31.0 34.3 42.1 33.8 35.3 32.6 20.9 23.6 36.6 40.2 31.0 33.5 32.6 26.9 19.1 25.5 24.5 26.2 25.2 28.2 32.9 31.0 31.6 34.4 24.9 30.7 19.6 23.9 20.0 16.5 29.4 17.9 19.1

Provision of mental health information

65.0 51.8 43.1

Therapy, counselling

25.0 44.4 46.5

Help to improve work skills or time use

30.0 51.8 32.8

Guidance in managing housing and financial matters

25.0 14.8 27.6

Self care

40.0 29.6 17.2

Social support

40.0 33.3 32.7

Rehabilitation/day program

25.0 22.2 24.1

Disability, homelessness and social relationships among people living with psychosis in Australia

*1= no psychosis 2= psychotic depression 3= bipolar, mania 4= schizophrenia 5=schizo-affective 6=other psychosis

24

2.3 Conclusions

The LPD study - a prevalence study of psychotic disorders in selected urban areas across Australia - was designed with a particular focus on `treated' point prevalence, that is, on the number and characteristics of people using specialised mental health services (Jablensky et al. 2000). While sampling for interview was random within each source of recruitment (inpatients, outpatients etc.), inpatients were over-represented and out patients under-represented in the final interviewed sample compared to their actual numbers within the population. Thus, the interviewed sample was somewhat weighted towards those with more severe illness, which needs to be taken into account in the interpretation of the findings that follow (Jablensky et al. 2000). Nevertheless, the LPD study did interview individuals with psychosis who were experiencing less disability, and in many respects had recovered, many of whom were among 173 participants who were predominantly or exclusively under the care of GPs or private psychiatrists. Notwithstanding the above caveats, it is clear that a substantial number of people with psychosis experience activity limitations and participation restrictions in key life areas. This is particularly so for those men and women with persisting psychosis. Despite this, very few participate in rehabilitation programs that have the potential to address these difficulties through individually tailored pharmacological, psychological, social and occupation-focused therapies. With respect to schizophrenia, a number of such therapies with substantial evidence of efficacy have been identified (Mojtabai et al. 1998) and incorporated into a series of treatment recommendations (Lehman et al. 1998). The first report from this LPD study noted that less than one-fifth of interviewees in the LPD survey participated in a rehabilitation or a day hospital program during the previous year (Jablensky et al. 1999b). Only 62 people (6% of the sample) had been involved in such programs for 6-12 months, and only 21 people had been involved in programs run over 5 days per week (Jablensky et al. 1999b). As highlighted in that report, mental health services are predominantly providing pharmacological treatments, with relatively little emphasis on the other therapies. This is particularly true for those people experiencing persisting illness and this is of concern, not only because they generally experience the most disability, but because there is some evidence that psychosocial treatments are more beneficial in the later stages of illness (Mojtabai et al. 1998). The findings indicate that those with single episodes of psychosis have a higher level of functioning in nearly all areas compared with people with chronic illness. The trajectories of recovery from psychosis are many and varied and it is apparent that substantial recovery or considerable improvement is expected in the majority of patients (EPPIC 2001). Nevertheless, between 10% and 20% of people with a first episode of psychosis do not achieve remission of symptoms after 12 months (Lieberman et al. 1993; Edwards et al. 1998) with the possibility of continued disruption to social, interpersonal and occupational role functioning (McGlashan 1988; EPPIC 2001). At present, rehabilitation programs are considered only when people are experiencing established difficulties in a number of areas and, as already indicated, relatively few people have access to such programs. There is emerging evidence that effective treatment and specialised psychosocial interventions should be considered and instituted at an early stage of illness to improve functioning and minimise further deterioration (EPPIC 2001). Only 10% of people with psychosis reported full-time employment and a further 18% were in part-time employment in the last 12 months. Employment is an important component of adult life and self-identity, providing socially valued roles for most people. The psychological, physical and social impact of unemployment must therefore be considerable, as it is in those who are not psychotic (Marsden and Duff 1975). Much of this may be avoidable as experience elsewhere in the world has shown that a much higher proportion of people with serious mental illness, including psychotic disorders, can be meaningfully employed (Warner 1999; Frost et al. 2002). Disability, homelessness and social relationships among people living with psychosis in Australia 25

The findings indicate that it is less likely that older people who are living with psychosis are in employment. This may partly reflect the progression or chronicity of the illness and the impact of secondary disability. It may also reflect the general experience of those who have periods of unemployment that, the longer one is unemployed, the less common and perhaps the harder it is to re-enter the workforce. Other meaningful occupations in which people may participate include study. This could be a viable alternative to work for many people with psychosis, and indeed one which could assist them to re-enter the workforce in the longer term. However, a low proportion of people with psychosis was undertaking any course of studies. Indeed, most participants in this study identified no major occupation, suggesting that boredom and under-activity are likely to be contributing to diminished well-being and quality of life. This is an under-recognised problem in the community, although the adverse impact of impoverished social environments in mental hospitals (providing few opportunities for meaningful activity) was first recognised many years ago (Wing and Brown 1970). It was assumed that the problem of under-stimulating environments in large psychiatric institutions would be solved by de-institutionalisation-when most people with mental illness would continue to live in the community. However, even when occupied, almost half of those interviewed experienced some occupational dysfunction, suggesting an inadequate fit between motivation, interest, skills and other personal attributes and the nature and challenge of the available occupations. People with schizophrenia and schizo-affective disorder are less likely to be employed compared with others with psychotic disorders. There are a number of possible explanations for this. The greater impact of these disorders on people's ability to perform in the workplace (for example, with regard to specific symptoms and associated cognitive impairment) may be relevant. This may also be due to greater stigma associated with these conditions, meaning their opportunities for participation in work are more restricted. Women appear to function better than men in caring for themselves, social relationships and maintaining interest in the outside world. This is consistent with other studies, especially of people with schizophrenia, suggesting that women often experience better functional outcomes than men. The association between a person's diagnosis and level of functioning varies according to the type of activity in question. Those with bipolar mania and delusional disorder and other psychoses generally fared better than those with any other psychotic diagnosis. In areas such as self care and interest in the outside world, people living with affective disorders (both psychotic depression and bipolar mania) are experiencing fewer difficulties than those with non-affective disorders. A different picture emerged for difficulties with participating in household activities. Here, men with psychotic depression and women with bipolar mania were most incapacitated. Thus, it cannot be assumed that people with affective psychoses function uniformly better than those with non-affective psychoses, or vice versa.

2.4 Recommendations

2.4.1 The extensive disability among people living with psychosis in Australia, reflected in their activity limitations and restricted participation in many aspects of community life as documented here, needs to be addressed. Given the limited involvement of this population in rehabilitation programs that might address these needs, greater access to such programs and/or treatments with a rehabilitation or recovery focus appears to be much needed. The National Mental Health Strategy and state planning frameworks should reflect this need, and federal and state mental health resources should support the development of such programs by mental health services and the psychiatric disability support sector. 26 Disability, homelessness and social relationships among people living with psychosis in Australia

2.4.2 Greater consideration should be given to the impact of under-activity and boredom on people with psychosis living in the community. Access to a variety of meaningful occupations is required. This will necessitate a number of systemic changes. Examples include public education initiatives to ensure that those with psychosis have equal access to the range of activities available to others in their community. Policies and legislation need to be reviewed to ensure that financial barriers to meaningful occupation and community re-integration do not continue to exist. 2.4.3 Not enough is known about the mechanisms that underlie people's difficulties in functioning in the context of psychotic illness (for example, whether difficulties are related to volition, skills or context). Thus, it is not always clear what the focus of the clinical intervention should be (for example, whether improving someone's social integration would assist with his or her daily living skills). Research into these issues would advance our understanding and assist services to develop more effective interventions. 2.4.4 It should be acknowledged that difficulties in daily living skills might result from mental as well as physical illness or impairments. People with mental illness therefore should have equal access to services provided by the joint federal and state program, Home and Community Care (HACC). These services include housekeeping, the provision of meals, personal care and home nursing services, and provision of environmental supports to enable people to compensate for their difficulties. 2.4.5 Much is already known about what works well in case management and in rehabilitation ­ specifically about the psychosocial interventions that may alleviate some of these reported difficulties in functioning. Such interventions include cognitive behaviour therapy for depression and the positive symptoms of psychosis, and family interventions in serious mental illness. Given the prevalence of functional difficulties, more attention should be given to ensuring that mental health workers are fully trained in the use of treatments that are known to be effective and that case managers can call on other clinicians and service providers with the necessary skills and resources. 2.4.6 There is further scope for research into the effective ingredients of both case management and rehabilitation. Since disability among people living with psychosis is relatively widespread, there is a need for greater understanding about how this can be addressed within the specific framework of mental health and other services in Australia. This will require research into, and evaluation of, services to understand how best to implement current research evidence about recovery from psychosis in `the real world'. 2.4.7 Research that examines relevant environmental and personal barriers is required to explore the issues that prevent people with psychosis from gaining and retaining meaningful occupation. Research should aim to increase understanding of lowered selfimage/self-esteem, and how it may result from interaction between other personal factors, the illness itself and social factors during the course of illness. Without a full understanding of all relevant barriers to meaningful occupation, it is difficult to design appropriate rehabilitation and vocational programs that facilitate the recovery of selfefficacy, through the acquisition of work and other occupations. 2.4.8 Rehabilitation should be available at all stages of psychotic illness to treat and prevent the development of functional difficulties. Both adult mental health services and services for early intervention in psychosis should ensure that prevention of disability and rehabilitation of skills are key priorities for service delivery.

Disability, homelessness and social relationships among people living with psychosis in Australia

27

2.4.9 Most people with psychosis require assistance either to retain or regain employment. Younger people often need assistance to gain skills for employment, especially when illness disrupts their education. They might also require assistance to retain their jobs in the face of continuing episodes of disorder. Such assistance might be both at the systemic level (such as greater employer awareness of mental health issues or flexible working practices) and at the individual level (such as refreshing skills lost during relapse or attention to lowered self-esteem and confidence in one's abilities). There are specific issues for older people with psychosis ­ reflected in the higher proportion of unemployed in this age group ­ who require more targeted interventions. If unemployed for some time, as experienced by the wider community, the obstacles for such people re-entering the workplace are greater. This is compounded by their (often) more severe disability as a result of their experience of longer duration of illness. More detailed and specific recommendations regarding employment, vocational training and education are outlined in the companion bulletin (Frost et al. 2002).

28

Disability, homelessness and social relationships among people living with psychosis in Australia

3.

Disability, service use and quality of life among people living in different types of housing across Australia

One of the biggest obstacles in the lives of people with mental illness is the absence of adequate affordable and secure accommodation. Living with a mental illness - or recovering from it - is difficult even in the best circumstances. Without a decent place to live it is virtually impossible. (Burdekin et al. 1993, p.337)

Adequate housing is widely acknowledged as a fundamental human right. Housing or accommodation type has been viewed as a variable indicating the level of socio-economic disadvantage. It is also recognised as an indicator of quality of life (Young and Ensing 1999). Using a prevailing Australian cultural norm about what constitutes desirable housing, most people would prefer to live in a dwelling that has a room to sleep in, a room to live in, one's own kitchen and bathroom, and some security of tenure (Chamberlain and Mackenzie 1998). People with psychosis may be no different in ascribing to this cultural norm, as a recent Australian study found that people with psychiatric disabilities preferred living in their own home after which government subsidised housing was preferred. Interestingly, low cost rooming house accommodation was preferred over housing with psychiatric support. Homelessness, long-term hospitalisation and crisis accommodation were the least preferred living arrangements. Features of accommodation that were most highly valued in addition to shelter were safety, privacy and the provision of food (Owen et al. 1996). Furthermore, access to appropriate housing has been recognised as an important aspect in the success or failure of a person living with mental illness remaining in the community. Unsuitable accommodation, or none at all, can erode or destroy the benefits of treatment or rehabilitation received in hospital (Burdekin et al. 1993). Hence, for all these reasons, an examination of the profile of people living with psychosis in different types of accommodation is very informative. The purpose of this chapter is to describe the following characteristics of people living with psychosis grouped according to their main accommodation type in the last 12 months: · · · · · · socio-demographic characteristics clinical features substance use disability profile service use quality of life.

In chapter 4, special emphasis will be given to people living in marginal accommodation in Melbourne. The reason for highlighting this group is that the methods used in Melbourne involved a stratified random clustered sample design. This design allowed us more confidence in estimating the prevalence of people with psychosis living in such accommodation. In addition, and unlike in the original reporting of the LPD (Jablensky et al. 1999b), all those who were interviewed and living in these marginal settings in Melbourne are included in this chapter, irrespective of whether they were identified in marginal accommodation or via other agencies during the census. This allows a comprehensive account of the level of disability, substance use and service needs of this representative group of people with psychosis living in marginal accommodation in a part of Melbourne.

Disability, homelessness and social relationships among people living with psychosis in Australia

29

3.1 Measures and definitions used in this chapter

3.1.1 Accommodation type

(refer to Figure 3.1) Institutional accommodation: this refers to large psychiatric hospitals (long stay wards - a remnant of the `asylum'), nursing homes and, more recently, community care units (which have been replacing the old psychiatric institutions in some states). People living in institutional accommodation or in a setting with intensive professional support often represent the most `unwell' and this is particularly the case if they have been so accommodated for the last 12 months. Among the people interviewed for this survey, 6.1% were living in institutional settings (such as a community care unit) at the time of interview or had been in hospital or an institutional setting for the whole of the preceding 12 months. Supported housing: This includes residential disability support services that are specifically designed for those with mental health problems as well as group homes providing supervised care. Essential components of supported housing are that it is secure, affordable, and with reliable support from staff with adequate training and resources. Typical examples of these residential services are run by organisations such as the Richmond Fellowship of Victoria, the Schizophrenia Fellowship (now known as Mental Illness Fellowship, for people with mental illness, their families and friends) and the Association of Relatives And Friends of the Emotionally and Mentally Ill (ARAFEMI). The aim of these supported housing programs is that people will move through a graded system of accommodation and achieve independence. Among those interviewed, 4.9% were living in supported housing. Marginal accommodation: This was defined as residential accommodation affordable on a pension and characterised by a lack of secure tenure, little privacy, and shared kitchen and bathroom facilities. This included living in a rooming house or boarding home. These are often characterised by lack of secure tenure, lack of privacy and poor living conditions (small dark rooms). Some provide meals for residents whereas others provide shared kitchen and bathroom facilities. Hostels were also included in our definition of marginal accommodation. Hostels tend to be larger than group homes and more institutional in nature. They usually house people with some sort of disability and are often privately run for profit. The environment tends to foster a sense of dependency since the staff usually manage residents' meals, medication and finances. Emergency accommodation and shelters for the homeless (often run by charities) were included in our definition as were those in the situation of being roofless (ie, those without any shelter). Of those interviewed, 23.8% were living in marginal accommodation either most recently or at some time in the past year. Thus, people were included in this category even if they were not currently living in marginal accommodation but had done so at some time in the past year, in acknowledgment of the episodic and changing nature of homelessness for many individuals. The term marginal accommodation is quite comparable with the definition of homelessness provided by Chamberlain (Chamberlain 1999). Rented home: This refers to public or private rental accommodation, including public housing. Of those interviewed, 27.1% were living in rented homes. Own home: This refers to people living in their own home or the family home. Of those surveyed, 26.7% were living in their own or family home. A further 10.5% were excluded from the analysis because at the time of the survey they were in hospital, as acute inpatients. It was assumed that most of these individuals would be experiencing an acute relapse and therefore their level of functioning would not be reflective of their usual level. 30 Disability, homelessness and social relationships among people living with psychosis in Australia

Figure 3.1. Categories of accommodation Categories used in data collection Categories used in data presentation

Institution: hospital Institutional Institution: nursing home, lodge

Supported Supported Group home

Homeless / no fixed address Crisis shelter or rooming house Marginal Hostel Hotel / rented room

Rented home (public) Rented Rented home (private)

Own home Own home Family home

Disability, homelessness and social relationships among people living with psychosis in Australia

31

3.1.2 Substance use

Substance use will be described in detail in this chapter. Substance abuse is a common co-morbid problem among people with psychosis. For people with schizophrenia, cannabis use in particular is recognised as contributing to exacerbation of symptoms and associated poor outcomes. A similar pattern of co-morbid substance dependence (especially alcohol) being associated with poor outcomes has emerged for individuals with mood disorders. A number of studies have shown that substance use is a risk factor in unstable housing (Lipton et al. 2000; Odell and Commander 2000) and one of the key characteristics that distinguish the homeless mentally ill from non-homeless mentally ill people (Caton et al. 1994). All participants were asked about their alcohol consumption during their life-time, how many standard drinks they had on a typical day when drinking and how often they drank. Interviewees were asked how many cigarettes they smoked in the last 12 months. They were also asked about illicit drug use. This included substances such as cannabis, amphetamines, tranquillisers, heroin, cocaine, LSD, PCP, and inhalants/solvents. People were asked whether they took these drugs and how often they took them.

3.1.3 Quality of life

A number of items in the DIP directly or indirectly related to the concept of quality of life. These included the participant's own evaluation of their satisfaction with their circumstances as well as indicators of adversity associated with social isolation, marginalisation and socio-economic deprivation such as victimisation. The following indicators are reported: · · · · · · · feeling safe in present locality being a victim of violence in the last 12 months need for police/legal assistance in the last 12 months arrested in the last 12 months deliberate overdose or self-harm in the last 12 months satisfaction with own independence satisfaction with life as a whole in the last 12 months.

3.2 Findings

3.2.1 Socio-demographic characteristics

There was a preponderance of males among residents in supported housing (77%), institutional settings (70%), and in marginal accommodation (71%) while the sex distribution was more even in rented housing (51% males) and among those residing in their own home (54% males). See Table 3.1. Institutional accommodation and supported housing shared very high proportions of people who were single and had never married (83% and 88%, respectively). Almost three in four people in marginal accommodation were single, and one in four married or in a defacto relationship. Approximately half of those in their own or rented homes were single and the other half either married, in defacto relationships, divorced, separated or widowed. Table 3.1 shows that trade or other certificate qualifications were possessed by a lower proportion of people living in an institutional setting (7%), marginal accommodation (15%) and supported housing (15%). A similar picture emerged for tertiary qualifications. By comparison, among people who lived in a rented home, 22% had trade qualifications and 14% had tertiary qualifications. Among people living in their own home, 24% had trade qualifications and 19% had tertiary qualifications. 32 Disability, homelessness and social relationships among people living with psychosis in Australia

A somewhat higher proportion of people living in marginal accommodation were receiving a government benefit (95%) than people living in rented accommodation (88%) and people living in their own home (68%). The Disability Support Pension was by far the most common pension received in staffed settings. Table 3.1 Socio-demographics by accommodation type (per cent)

Institutional n Male 60 70.0 Supported 48 77.1 Marginal 233 71.2 Rented home 266 51.1 Own home 262 54.2

Accommodation type

Marital status

Single, never married Married/de facto Divorced/separated/widowed 83.3 16.7 0 87.5 10.4 2.1 73.4 22.3 4.3 57.5 23.7 18.8 55.3 18.7 26.0

Education (highest qualification)

Highest qualification Completed secondary school Trade or other certificate Undergraduate/postgraduate Other Left school, no qualifications 73.3 13.3 6.7 6.7 25.0 14.6 2.1 6.3 50.0 12.9 14.6 6.9 2.1 62.2 23.7 21.8 13.9 1.9 38.0 18.7 23.7 18.7 1.1 36.6

Source of income

Government pension Disability Support Pension 91.7 90.0 97.9 91.7 95.3 79.4 87.6 69.9 68.3 49.6

3.2.2 Clinical features

Of the people living in institutional, supported accommodation, and marginal accommodation a higher proportion were diagnosed with schizophrenia (83%, 63%, and 60% respectively) compared with those living in their own home (42%). See Table 3.2. A higher proportion of people in institutional accommodation (88%) had a chronic course of illness (that is, many episodes with some deterioration) compared with the other groups. There was also a high proportion of people residing in marginal accommodation who had a chronic course of illness (60%) compared with those who lived in a rented home (31%) or their own home (28%).

3.2.3 Substance use

Table 3.3 indicates that smoking was highly prevalent among people living with psychosis. It was particularly high among those living in institutional settings (80%), in supported accommodation (79%) and in marginal accommodation (76%). This compares with figures from the National Drug Strategy Household Survey (Adhikari and Sumerill 2000), which indicated that 27% of the Australian population aged 14 years or more were recent regular and occasional smokers. The majority was smoking more than 20 cigarettes per day across all accommodation categories (ranging from 63% of all people in institutional settings to 53% in marginal accommodation). The comparable figure for the Australian population of smokers aged 14 years or more is 28% (Adhikari and Sumerill 2000). Disability, homelessness and social relationships among people living with psychosis in Australia 33

Table 3.2

Clinical characteristics by accommodation type (per cent)

Accommodation type Institutional Supported Marginal Rented home 266 Own home 262

n

60

48

233

Diagnosis

Schizophrenia Schizo-affective disorder Bipolar mania Other psychosis Depressive psychosis Did not meet criteria for psychosis 83.3 5.0 0.0 5.0 1.7 5.0 62.5 12.5 10.4 10.4 2.1 2.1 60.1 6.9 7.7 15.9 5.6 3.9 43.6 15.4 13.9 14.3 7.5 5.3 42.0 9.5 12.6 19.1 10.7 6.1

Course of disorder

Single episode Multiple episodes good/partial recovery Chronic course, little recovery ­ 11.9 88.3 ­ 50.0 50.0 7.3 33.0 59.7 9.8 59.8 30.5 13.0 59.2 27.9

People were asked about the amount of alcohol they consumed on a typical day. About a half of the people living in institutional or supported accommodation consumed 1-2 standard drinks per day (see Table 3.3). More people living in marginal accommodation consumed 13 or more standard drinks (16%) compared with people living in other accommodation settings, such as institutional (2%) or supported housing (2%). The rate of harmful drinking was also highest in this marginal group (27%). This may be partially a reflection of more restrictions on alcohol consumption, more staff supervision and readiness of staff to enforce drinking restrictions in institutional and supported accommodation compared with the other accommodation types. For comparison, among the general Australian population aged 14 years or more who reported alcohol consumption on a typical day: · · · · · · 48.7% had 1-2 standard drinks 26.6% had 3-4 standard drinks 11.9% had 5-6 standard drinks 5.2% had 7-8 standard drinks 4.4% had 9-12 standard drinks 3.3% had 13 or more standard drinks.

Source: Adhikari and Sumerill (2000)

In terms of illicit drug use, people were asked if they had used any of a number of drugs in their lifetime. A high proportion of people across the accommodation settings had used cannabis, ranging from 23% in institutional settings to 41% of people who lived in a rented home (Table 3.3). For comparison with the Australian population, according to a Report on Drug Use in Australia 1998 (Higgins et al. 2000), 39% of people report a lifetime history of cannabis use. In terms of the `harder' drugs, a higher proportion of people living in marginal accommodation were using LSD (17%), amphetamines (16%) and heroin (13%) than people in other accommodation settings. Comparable national figures for the general population aged 14 years or more are that 9% of people had used amphetamines, 10% had used LSD and 2% of people had used heroin in their lifetime (Higgins et al. 2000).

34

Disability, homelessness and social relationships among people living with psychosis in Australia

Table 3.3

Institutional Supported Marginal Rented home 266 262 233 48 60 Own home

Substance use by accommodation type (per cent)

Accommodation type

n

Cigarette use

80.0 79.2 75.5 66.9 11.8 31.5 56.2 0.6 17.7 (16.7) 17.6 23.9 53.4 5.1 19.6 (17.2) 15.8 23.7 57.9 2.6 20.9 (17.0) ­ 35.4 62.5 2.1 23.8 (17.3) 58.0 18.4 22.4 57.9 1.3 14.9 (16.9)

Person does smoke

Smoking 1-10 cigarettes per day

Smoking 11-20 cigarettes per day

Smoking more than 20 cigarettes per day

Number not known

Mean number of cigarettes smoked per day (SD)

Alcohol use on a typical day

8.3 4.7 5.6 31.3 17.4 9.2 4.6 6.2 15.9 9.7 8.5 (13.3) 58.1 11.6 4.7 2.3 7.0 2.3 9.3 3.1 (3.8) 45.8 8.3 10.4 6.3 8.3 2.1 10.4 4.5 (7.8) 7.9 37.7 21..8 11.3 5.9 6.3 7.5 1.7 4.8 (5.7) 5.3 42.7 19.9 12.6 1.6 4.9 7.7 5.3 4.7 (6.6)

No use of alcohol (low risk)

1-2 standard drinks (low risk)

3-4 standard drinks (low risk)

5-6 standard drinks (hazardous)

7-8 standard drinks (harmful)

9-12 standard drinks (harmful)

13+ standard drinks (harmful)

Not known

Mean number of drinks (SD)

Illicit drug use ever

23.3 5.0 5.0 5.0 1.7 3.3 37.5 10.4 4.2 6.3 4.2 10.4 39.1 16.3 12.0 12.9 6.9 17.2 40.6 15.0 7.1 9.8 6.8 12.4 34.0 10.7 6.1 6.9 5.0 8.4

Cannabis

Disability, homelessness and social relationships among people living with psychosis in Australia

Amphetamines

Tranquillisers

Heroin

35

Cocaine

LSD

3.2.4 Work, study, and home duties

Table 3.4 shows that the majority (93%) of people who lived in an institutional setting reported having no occupation. Even for people living in their own home, almost half reported no occupation. Among those who did have an occupation, a high proportion of people reported below average performance in these roles. This was true across all the accommodation types, ranging from 39% of people who lived in supported accommodation to 46% of people who lived in their own home. Household activities No one who lived in institutional accommodation saw themselves as part of a household (Table 3.4). A further 62% of people living in marginal accommodation and 52% of people living in rented accommodation were not part of a household. This compares with 23% of people who lived in their own home and 29% of people who lived in supported accommodation. Of the people who were in households, approximately half in all accommodation types reported that they were not able to adequately do things expected of them at home in the past 12 months. Table 3.4 Work, study, home duties by accommodation type (per cent)

Institutional n 60 Supported 48 Marginal 233 Rented home 266 Own home 262

Accommodation type

Main occupation

Full-time work outside the home Part-time work outside the home Housework Studying Retired None of above Those in main occupation*(n) Obvious/severe dysfunction in occupational performance Those in household (n) Obvious/severe dysfunction in household activities 0 1.7 0 0 5.1 93.2 1 0 0 0 4.2 16.7 0 6.3 2.1 70.8 13 38.5 34 41.2 6.1 13.9 1.3 0.9 2.2 75.8 51 45.1 89 51.7 12.9 20.8 8.7 6.4 2.7 48.5 127 44.1 128 43.8 14.2 24.2 8.1 5.8 3.5 44.2 138 46.4 203 46.3

Household activities

No opportunity to watch favourite television program with others No opportunity to play games 100 100 45.9 83.3 75.6 84.6 60.9 75.2 37.0 69.9

Everyday living tasks in the last month

No opportunity to make or answer telephone calls No opportunity to drive a motor vehicle No opportunity to ask people for a favour such as being given a lift Did not /no opportunity to bet on a lottery 28.4 96.6 53.3 80.0 12.5 79.2 37.5 75.0 21.0 85.9 42.5 71.3 3.4 57.9 33.5 62.0 3.5 41.6 30.6 56.5

*Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.

36

Disability, homelessness and social relationships among people living with psychosis in Australia

Everyday living tasks A list of everyday tasks was provided to study participants. A higher proportion of people living in institutional accommodation (28%) and in marginal accommodation (21%) did not have the opportunity to make or answer phone calls (see Table 3.4). By comparison, 3% of people living in rented housing or their own home did not have this opportunity. The majority of people living in institutional (97%) or marginal accommodation (86%) did not have an opportunity to drive a car. This compares with 79% in supported housing, 58% in rented homes and 42% in their own homes. A higher proportion of people living in institutional (53%) and marginal accommodation (43%) did not have the chance to ask people for a favour such as giving them a lift.

3.2.5 Relationships with others, self care and outside interests

Among people with psychosis, more people who lived in institutional accommodation said they had no friends (23%) compared with those who lived in marginal accommodation (14%) and those who lived in a rented home (7%) or their own home (8%). See Table 3.5. When asked if people had an intimate friend, a very high proportion of people living in institutional accommodation (70%) said they did not have such a person in the last 12 months or ever. Many people who lived in marginal accommodation said the same (44%). Approximately a third of people in the other settings stated they did not have such a person in their lives. Thus, social isolation defined in this way is relatively common in all the accommodation settings (Table 3.5). It is important to note that 52% of people in institutional accommodation felt that they needed and would like to have more `good' friends (Table 3.5). A considerable proportion of people in the other accommodation settings reported a need and desire for friendship (ranging from 42% in supported accommodation to 47% in rented homes). A person's perceived success in social interactions was rated using a range of probes about a person's socialising (see Chapter 2 for details). A higher proportion of people who lived in institutional accommodation was rated as having dysfunction in this area (82%) compared with people living in marginal accommodation (66%), supported accommodation (44%), their own home (51%) or a rented home (53%). A similar pattern was observed for social withdrawal in that higher proportions of people living in institutional settings (73%) and marginal accommodation (61%) were rated as having this problem (Table 3.5). Self care Self care was a problem for a greater proportion of people living in institutional settings (60%) and in marginal accommodation (38%) compared with people living in supported housing (27%), rented homes (23%) and their own homes (21%). See Table 3.5. Outside interests A much higher proportion of people who lived in institutional accommodation (72%) lacked interest in everyday events over the past month compared with people living in marginal accommodation (49%), supported housing (44%), rented homes (32%) and their own homes (27%).

Disability, homelessness and social relationships among people living with psychosis in Australia

37

Table 3.5

Relationships with others, self care and outside interests by accommodation type (per cent)

Institutional Supported Marginal Rented home 266 53.0 56.4 31.6 Own home

Accommodation type

n Obvious/severe dysfunction in socialising Obvious/severe social withdrawal No intimate relationship(s)

60 81.7 73.3 70.0

48 43.8 47.9 33.3

233 66.1 60.5 44.2

262 51.1 50.4 31.7

Availability of friends

No availability of friends 23.3 10.4 13.7 6.8 8.0

Perceived need for friends

Doesn't need good friends Needs and wants more friends Has as many as needs Social deterioration in last 12 months Social improvement in last 12 months Obvious/severe dysfunction in self care Obvious/severe dysfunction in outside interests 8.3 51.7 35.0 21.4 16.1 60.0 71.7 4.2 41.7 52.1 18.8 31.3 27.1 43.8 8.2 42.9 48.5 31.9 18.8 37.8 49.4 2.6 46.6 50.4 26.3 28.2 22.9 32.3 3.1 45.0 51.1 26.9 25.4 20.6 27.1

3.2.6 Service use

Overall, a high proportion of people with psychosis used some kind of health care service in the previous 12 months (Table 3.6). This is partially due to the fact that people were recruited for this study primarily from health care services. Given the nature of the illness experienced by people living in institutional settings, it is not surprising that a high proportion (82%) had an in-patient admission in the last 12 months. A somewhat lower proportion of people living in marginal accommodation settings (46%) used outpatient or community mental health services in the last 12 months compared with people living in all other non-institutional settings: supported housing (63%), rented home (66%) and own home (60%). It has already been noted that the use of illicit substances and alcohol is quite high across all accommodation types, and in particular in marginal accommodation, yet the number of people attending a drug and alcohol clinic is very small. Table 3.6 Service use in last 12 months by accommodation type (per cent)

Institutional 60 81.7 50.0 11.9 3.3 15.0 30.0 Supported 48 29.2 12.5 62.5 0.0 37.5 83.3 Marginal 233 31.3 18.0 45.5 2.6 36.9 85.4 Rented home 266 42.1 22.2 65.8 1.9 36.8 90.2 Own home 262 38.5 10.7 60.1 1.1 30.5 86.6

Accommodation type n In-patient admission Involuntary admission Community mental health Drug and alcohol unit Emergency department GP

38

Disability, homelessness and social relationships among people living with psychosis in Australia

People were asked about other services received in the last twelve months and whether they were satisfied with the service they received. Most people with psychosis received prescribed medication across all accommodation types and most stated that they were satisfied with this service. With respect to receiving mental health information, the proportions varied across accommodation types, the lowest (surprisingly) being for people living in institutional settings and (not surprisingly) for those in marginal accommodation (38% in each case). Less than half of people living in any setting received therapy or counselling. The figures were especially low for those in institutional (28%) and marginal accommodation (32%). Across all accommodation types, the proportions of those receiving a service designed to improve work skills or use of time differ ­ usually markedly ­ from the proportions that are unoccupied. For instance, of people living in: · institutional accommodation, 93% were unoccupied and only 42% were receiving a service to improve work or time use · supported accommodation, 71% were unoccupied and only 35% were using such a service · marginal accommodation, 76% were unoccupied and only 36% were using such a service · rented home, 49% were unoccupied and 32% were using such a service · their own home, 44% were unoccupied and 38% were using such a service. It is not surprising that people living in stable housing received fewer services to help them manage their housing or financial matters. Nevertheless, the proportion of people in less stable accommodation using such a service is not as high as one might expect: for example, only 46% of people in marginal accommodation. While it is unclear what proportion of this represents an unmet need or an absence of need, that many people living in inadequate accommodation are nevertheless not in receipt of help relating to housing is a striking observation. People were asked if they received a service directed at social support in the last 12 months, and their answers contrast with the level of dysfunction in their socialising. Of people living in: · institutional accommodation, 82% had dysfunction in socialising and only 40% were receiving a service to improve their social support · supported accommodation, 44% had dysfunction in socialising and 33% were using such a service · marginal accommodation, 66% had dysfunction in socialising and only 34% were using such a service · rented home, 53% had dysfunction in socialising and only 29% were using such a service · their own home, 51% had dysfunction in socialising and 27% were using such a service. In general, fewer people in marginal accommodation were satisfied with services received. The level of use of services provided by government and non-government agencies varied among the different accommodation types. Perhaps the most striking difference is found among people who used the government department for housing. Given that marginal accommodation may be regarded as the least stable accommodation type, only 18% of people in this setting had accessed this service. This contrasts with 47% of people who lived in a rented home.

3.2.7 Quality of life

Among people living in different accommodation types, a higher proportion of people in marginal accommodation reported being a victim of violence (26%) compared with people living in their own home (8%) or in supported accommodation (10%). See Table 3.7. It is also Disability, homelessness and social relationships among people living with psychosis in Australia 39

important to note that the proportion of residents in institutional accommodation who had been victims of violence (22%) was almost as great as the proportion in marginal settings. A relatively high proportion of people living in marginal accommodation also reported feeling unsafe in their environment (22%) and experiencing unmet need for police assistance (18%). By comparison, 11% of people who lived in their own home felt unsafe and 8% reported unmet need for police assistance. The corresponding figures for those in supported, rented and institutional settings lay between these two extremes. People living in marginal accommodation were also more likely to report that they had been arrested (17%) or charged (14%) in the last 12 months. By comparison 5% of people living in their own home had been arrested and 4% charged in the last 12 months. Again, figures for those in supported, rented and institutional settings were intermediate. A slightly higher proportion of people living in marginal accommodation reported deliberate self harm or overdose in the last 12 months (19%) compared with people living in the other settings (Table 3.7). However the figures for those living either in a rented home or their own home (15% and 16%, respectively) were also alarmingly high. When people were asked how satisfied they were with their own independence, two-thirds of those living in institutional settings were dissatisfied compared with about one third of those living in their own or a rented home, supported housing or marginal accommodation. Once again, a higher proportion of people who lived in institutional accommodation reported being dissatisfied with their life as a whole. In this regard, it would appear that marginal accommodation might offer some perceived benefits with respect to independence (Owen et al. 1996). Table 3.7 Quality of life by accommodation type (per cent)

Institutional 60 21.7 13.3 8.3 10.0 6.7 13.3 6.7 65.5 63.4 Supported 48 10.4 14.6 12.5 10.4 8.4 10.4 4.2 40.4 52.1 Marginal 233 26.2 21.9 17.6 16.7 14.1 18.9 9.9 35.4 52.5 Rented home 266 15.8 13.5 13.2 9.1 7.1 14.6 6.0 30.2 52.7 Own home 262 8.4 10.7 8.4 5.3 3.5 15.6 6.9 35.2 50.0

Accommodation type n Victim of violence in past 12 months Not feeling safe Unmet need for police help Arrested in last 12 months Charged in last 12 months Deliberate self harm/overdose last 12 months Occasions of drug overdose and not seeking help last 12 months Dissatisfied with independence Dissatisfied with life as a whole

40

Disability, homelessness and social relationships among people living with psychosis in Australia

3.3 Conclusions

There is an emerging picture of a typical resident among those studied in supported, marginal or institutional accommodation being single, male and often diagnosed with schizophrenia. In the case of the marginal and institutional settings, the resident often has less education than others who are living with psychosis, and has a smaller chance of being employed. With respect to employment prospects, the situation for residents of supported housing is slightly better. The extent of smoking among people living with psychosis is a major public health issue. It has long been known that the physical health of those with psychosis is worse than for comparable groups in the general population (Brugha et al. 1989). Further, among people with schizophrenia, life expectancy is reduced compared with the general population, even after accounting for their higher suicide rate (Newman and Bland 1991; Mortensen and Juel 1993). These observations are very likely to be linked. In comparison to the Australian population, harmful alcohol consumption is more prevalent among people with psychosis living in all accommodation settings except for those in supported housing. This rate is of particular concern among those living in marginal accommodation as alcohol and drug use are known risk factors for housing instability (Rickards et al. 1999; Odell and Commander 2000; Sullivan et al. 2000). In contrast, access to drug and alcohol services among people with psychosis is extremely low. Heroin use among people living with psychosis is alarmingly high across all accommodation settings, but especially in marginal accommodation. Under-activity is more common in staffed settings such as institutions, supported housing and hostels. It seems clear that the presence of staff does not of itself address people's underoccupation, for reasons that are likely to be complex. Greater attention to facilitating meaningful activity within and outside of these settings would be likely to enhance residents' well-being and quality of life. Data on everyday living tasks suggest that opportunities are especially limited for people in marginal and institutional settings. This suggests people's functioning may be limited through environmental barriers to activity and participation, as well as the effects of the psychosis itself and associated impairments. In general, the greatest disability exists among people with psychosis living in settings where some staff input is available. Whilst this is reassuring in the sense that such disability provides one of the rationales for placement of people in institutional and supported settings, it is worrying that disability and other problems such as substance misuse are so prevalent among residents in marginal accommodation. This is because marginal settings are not specifically designed to cater for people with mental-health related needs. In the case of residents of supported accommodation, there are some ways in which they seem to be doing better than the other two aforementioned groups. For example, there is a greater chance that they will be occupied (including in paid work), they have fewer difficulties with caring for themselves and they experience a lower level of social dysfunction. Indeed, with regard to social dysfunction, people living in `independent accommodation' (rented or own home) may be more incapacitated than people living in supported accommodation. People in institutional settings, and to a lesser degree those in marginal accommodation, lack intimate friendships. So, whilst there are people nearby, there is a lack of intimacy in social interactions. Yet there is an expressed desire amongst many residents in these settings for such intimacy.

Disability, homelessness and social relationships among people living with psychosis in Australia

41

The degree of mismatch between people's needs (as inferred from the findings with regard to functioning) and service use appears to depend on the setting. For instance, more people living in independent accommodation and in need of occupational assistance receive help in this area. Although this may be due to the perception that people in other settings are too ill or unmotivated to benefit from such input, the success of programs overseas cautions us to avoid this assumption. Most people living in staffed settings get little support in managing housing or financial matters even though it could be anticipated that many have needs in this area. Particularly striking is the low use of the housing department by people in marginal settings. More encouraging is that there is a closer fit between level of social difficulties and assistance offered with social support for those in supported accommodation. This may be one of the strengths of this type of service.

3.4 Recommendations

3.4.1 Specially designed programs to help people with psychosis reduce or quit smoking, such as the recently established SANE Australia Smoke Free Kit, need to be developed and made widely available through agencies such as community health, primary care and nongovernment organisations. 3.4.2 People with psychosis urgently require improved access to drug and alcohol services. There should be greater availability of specially targeted drug and alcohol programs (such as the SUMITT program in North Western Melbourne) for this subgroup, since specialised input is required to deal with the co-morbidity of mental illness and substance misuse. 3.4.3 Institutional settings such as long-stay wards, community care units and nursing homes care for those with the greatest disability. While acknowledging this, it is crucial that the widespread under-activity and social isolation in these settings are addressed. To improve individuals' participation in meaningful activities and intimate relationships requires both maximising the use of environmental supports to accommodate individuals' functional difficulties, and minimising environmental barriers that constrain their opportunities for occupations and relationships. Provision of improved access to rehabilitation and disability support could help to address these issues. 3.4.4 It is clear that there are differences between the level and types of disability experienced by people with psychosis living in different settings. Greater attention should be given to the interaction between personal and environmental factors in recovery from psychosis. It is important to assess the individual's needs rather than make assumptions based on his/ her current environmental circumstances, and to facilitate their recovery by matching their needs with the most appropriate environment. 3.4.5 Clinical services, housing services and disability support services, including those provided by non-government organisations, should be better coordinated in order to more successfully meet the needs of people with regard to both their mental illness and their living circumstances (Victorian Homelessness Strategy Ministerial Advisory Committee 2001). Implementing the co-ordination of housing supply and community support has proved to be very difficult and it has been proposed that a co-ordinating body is required (Thomas and McCormack 1999). 3.4.6 At a government level, the Departments of Housing and Health should work together to develop a range of secure and stable accommodation options, with flexible support to meet the range and changing needs of people with psychosis. Support options should include assertive outreach responses, since these are recognised as effective in reducing homelessness (Mueser et al. 1998). 42 Disability, homelessness and social relationships among people living with psychosis in Australia

4.

Disability and service use among homeless people living with psychotic disorders in Melbourne

P is a 45 year old male who lives in a rooming house in inner Melbourne. He feels unsafe in his neighbourhood and was beaten up recently. The police came but said he was drunk and took him down to the station. He saw his brother five years ago and basically lives alone with little or no contact with friends or family. He first became unwell after the death of his wife. This was 10 years ago. He hears voices that continually tell him that he is no good and that people are out to get him. He believes he is the prince of darkness. He drinks everyday, usually two litres of wine. This stops him hearing the voices. He doesn't attend any mental health services. He might visit the local doctor and front up to the hospital emergency department if he has injured himself while drunk. He says he is mostly satisfied with his life and would like to stop drinking but it is very hard.

This chapter provides a detailed description of people with psychosis who are homeless. This group is doubly disadvantaged and therefore particularly vulnerable. A number of reports have documented that their needs are not fully understood or met by either the mental health system or the housing sector (Victorian Homelessness Strategy Ministerial Advisory Committee 2001). As has already been mentioned (Chapter 1), public concern about homeless mentally ill people, and reports of the growing number of this subgroup in various countries, have sometimes been linked with the process of de-institutionalisation. Indeed, an apparent dilemma arises when homelessness and psychiatric disability are found among people even where relatively good community psychiatric and health services exist. The popular response to this recognition is a call to slow down the process of dismantling the institutions, or even to bring back the asylums. Yet large-scale institutional care has mostly failed and is no longer acceptable (Singh 1992). The growing number of mentally ill homeless people is not a uniform finding. Contradictory findings may be partially explained by the use of different methods for defining and identifying this group of people (see below), and are not necessarily linked to de-institutionalisation. For example, the prevalence of schizophrenia among hostel residents in Edinburgh was lower in 1992 than in 1966 even after taking into account potential confounding factors, and despite a large reduction in the number of occupied psychiatric beds (Geddes et al. 1994). The relatively low prevalence of schizophrenia among homeless people in Edinburgh could be explained by developments in the provision of health, housing and welfare services. Even so, as the authors emphasise, the prevalence of 9% is several times higher than in the general population. Within the Australian context, the prevalence of psychosis in general, and schizophrenia in particular, among the homeless population has increased over time. In 1985, Doutney et al. (1985) reported the prevalence of schizophrenia among men living in a homeless refugee in Sydney as 15%. In 1987, a Melbourne study found a life-time prevalence of 21% for psychotic disorders among people living in marginal accommodation (Herrman et al. 1989). More recently, in Sydney, the prevalence of schizophrenia found in hostel users was 29% (Hodder et al. 1998). It is important to define and delimit the scope of the mentally ill homeless population especially when studies in different settings report different rates of mental illness among the homeless

Disability, homelessness and social relationships among people living with psychosis in Australia

43

(Bachrach 1995). Homeless mentally ill people differ widely in their diagnosis, treatment histories, disabilities and service needs. Even though mentally ill homeless people are diverse in so many ways, and share many characteristics with the majority of homeless people (who are not mentally ill), they possess unique service requirements that may be overlooked. By and large, they require mental health services in addition to social support, housing, and economic security to alter their life circumstances (Bachrach 1995). Homeless mentally ill people with psychotic disorders tend to have high rates of previous contact with traditional psychiatric services, but typically have limited current contact and low rates of psychotropic medication use (Herrman et al. 1992; Hamid et al. 1995a; Hamid et al. 1995b; Marshall 1996). On the other hand, accessible and relevant specialist services for homeless people, including outreach services, can encourage helpful service contact (Geddes et al. 1994; Buhrich and Teesson 1996), and homeless mentally ill people will use accessible primary health care (Herrman et al. 1992). There is a need for further studies to assess the needs of homeless people and help direct the policy and resources to meet their needs. The different rates of psychosis among homeless populations in various countries have already been highlighted. In this respect, it is crucial to estimate the extent of the problem in Australia. However, an understanding of the rate of disorder does not in itself give a good indication of the need for services. Few of the hostel workers in Edinburgh had formal training in caring for people with such disorders, and contact with psychiatric services does not necessarily imply that health needs are being met. To illustrate, there was still considerable unmet need among mentally ill hostel residents in Oxford, as measured by the MRC Needs for Care Schedule, despite a specialised GP service and weekly visits from a psychiatric registrar (Hogg and Marshall 1992). A sub-group of hostel residents in any city will have significant mental disorder and related disability (Hamid et al. 1995a; Hamid et al. 1995b). The social disability of these residents can be reduced with adequate psychiatric treatment (Marshall 1996), but without an in-depth assessment of their disabilities and needs, including the views of residents and staff (Hogg and Marshall 1992), it is not possible to plan accurately for community based services.

4.1 Definition of homelessness

Overseas, the definition of homelessness has narrowed over time. For example, several decades ago in the United States, homelessness encompassed people living in substandard housing, whereas today the term refers to people who are roofless or living in public and private shelters and institutions providing temporary accommodation (Daly 1996). The general consensus among researchers is that the term homeless refers to something more than just `house-less-ness' (Baum and Burnes 1993; Daly 1996). This is reflected in the following excerpt:

The term `homeless' is actually a catch word, a misnomer that focuses our attention on only one aspect of the individual's plight: his lack of residence or housing. In reality, the homeless often have no job, no function, no role within the community; they generally have few social supports. They are jobless, penniless, functionless, and supportless as well as homeless. (Lipton and Sabatini 1984, p.156)

An important aspect of `homelessness' is the person's alienation from society. This is reflected in the definition provided by the Council of Homeless Persons, Victoria.

A homeless person is without a conventional home. She/he is often cut off from support of relatives and friends, she/he has few independent resources and often has no immediate means and in some cases, little future prospects of self-support.

People may be transiently, episodically or chronically homeless and homeless people may, according to this definition, be roofless, or moving about between refuges, shelters, hostels or 44 Disability, homelessness and social relationships among people living with psychosis in Australia

relatives and friends, or living in rooming houses or cheap hotels (Arce and Vergare 1984). In other words, homelessness is a series of states that exist along the continuum of time and the continuum of place, and entry to, or exit from, the homeless state is usually part of a process rather than a single jump. Within the Australian context the definition of homelessness has remained broad, taking into account various states of homelessness as described in the definition below:

Primary homelessness: people without conventional accommodation such as those who `sleep out', or use derelict buildings, cars, railway stations, for shelter. Secondary homelessness: people who frequently move from temporary accommodation such as emergency accommodation, refuges, temporary shelters. People may use boarding houses or family accommodation but on a temporary basis. Tertiary homelessness: people who live in rooming houses or boarding houses on a medium or longterm basis, where they do not have their own bathroom and kitchen facilities and tenure is not secured by a lease. (Chamberlain 1999)

This chapter reports on a nested study within the Melbourne catchment area (an inner-city and suburban site) of the main LPD survey. The Melbourne site added to the core a systematic survey of an at-risk population group: residents of marginal accommodation and users of `drop-in' disability support services in the catchment area. This allowed the estimation of the prevalence of psychotic illness among homeless people in inner Melbourne, a decade after a previous study (Herrman et al. 1989). A broad definition of homelessness was used, including a definition of marginal accommodation as residential accommodation affordable on a pension characterised by a lack of secure tenure, little privacy, and shared kitchen and bathroom facilities (see Chapter 3). This nested study also extended the identification of the homeless by including drop-in centres and other non-residential disability support agencies in the scope of the systematic survey. These agencies included charitable organisations that provide emergency relief, food parcels or meals for people who are homeless or economically and socially disadvantaged, as well as that give peer support to people living with mental illness. Some of the agencies offer independent living skills training, using both centre-based and outreach approaches. The disability and service use are described in this group of homeless people in order to define their needs for care.

4.2 Methodology of the nested study of the homeless population with psychosis in Melbourne

The nested study was designed to screen a representative sample of `at risk people' who were using marginal accommodation places and day facilities in the Melbourne catchment area. We used the same age and diagnostic criteria for inclusion of participants, as well as instruments for screening and interviews, as in the main LPD survey (Jablensky et al. 1999b; Jablensky 2000). However, the methodology of this nested study has not been previously described, so a brief description will be provided here, with further details available in Appendix 2.

4.2.1 The catchment area for the Melbourne study

The area comprises two local government areas in Melbourne, the inner city of Yarra (incorporating the former cities of Fitzroy, Collingwood and Richmond), and the contiguous more affluent suburban city of Boroondara (former cities of Kew, Hawthorn and Camberwell). The total adult population of Yarra in the 1996 mid-term Census estimates was 65,000, and of Boroondara 145,000. The City of Yarra has traditionally been a working class area with a significant proportion of people who are economically disadvantaged and socially isolated, and it Disability, homelessness and social relationships among people living with psychosis in Australia 45

is an area settled by people arriving from many non-English speaking backgrounds over several decades. There is a high rate of illicit drug use and alcohol abuse. The area has large public housing estates and a number of rooming and boarding houses. In recent times, artists and professionals wishing to live close to the city have settled this area. In contrast, the City of Boroondara is predominantly a middle-class area without any large-scale public housing, although still containing a number of large properties functioning as rooming and boarding houses.

4.2.2 Study design

The study design had three components. Firstly, the sampling frame of accommodation and day facilities in the catchment area was established. This required compiling a list of all accommodation facilities, drop-in centres, soup kitchens and specialised disability support programs in the designated catchment areas. In the course of this exercise it became evident that a number of houses previously in use as marginal accommodation were no longer in existence, or had been converted into apartments (see Appendix 2). Secondly, a stratified sampling frame was constructed for accommodation places. Houses meeting the criterion definition of marginal accommodation were stratified by local government area (City of Yarra, and Boroondara) and number of beds (fewer than 20; 20 to 49; 50 and above). From this sampling frame a random list of houses was produced for each of the six strata. Using a stratified random cluster sample design gave an equal chance of inclusion to each person living in a particular stratum (defined by city and size of house), while giving different weights to each stratum to allow inclusion of a minimum number of people from a variety of different settings. Women were over-sampled because they were a small minority in the population. In other words, all women from the few women-only dwellings were included (there were 4 houses for women who agreed to take part, all in the fewer than 20 bed range in the City of Yarra with a total of 61 beds; an additional house of 12 beds in the same bed range in Yarra declined). A target of 500 residents was used as a basis for obtaining 360 screens and in-depth interviews with up to 90 residents who were screened as positive (see Appendix 2 for more detailed rationale for these numbers). This target of 500 was divided between the strata as described above; the number of houses required to provide the estimated number of respondents were drawn from the randomly ordered list of all houses in that cluster. If the proprietor of a selected house did not agree to the study proceeding, the next rooming house on the list was contacted. Of the 80 houses in the final list, a total of 13 did not respond to inquiries about taking part in the survey, 17 refused, and 13 were agreeable to taking part but ultimately were not required as sufficient numbers were obtained from the final sample of 37 houses. Thirdly, conducting the census and interviewing participants took place over a six-week period, including the study census, in winter 1997. Interviewers had backgrounds in clinical psychology, social work, and psychiatric nursing, and were trained according to procedures established for the national study and supervised by Oye Gureje locally. Various homeless outreach workers, including staff from the local mental health service and the Royal District Nursing Service, gave them advice.

4.2.3 Interviewing and sampling results in marginal accommodation

In a number of the houses, the management informed the residents of the intent to conduct the survey. Trained interviewers went in pairs to the randomly selected houses and knocked on all doors in each house. Three separate attempts were made to contact a person in each room with the interviewers visiting on different and pre-determined days and times. When a resident

46

Disability, homelessness and social relationships among people living with psychosis in Australia

answered the door, the interviewer introduced her/himself, explained the purpose of the visit, described the study, and administered the screening questionnaire to those who gave verbal consent. Apart from a number of people who did not meet the study criteria because they were over the age limit, had insufficient English language skills to answer the questions or had an intellectual disability, all those who screened positive were invited by the interviewer to take part in the indepth interview. As some people living in these places move in and out of accommodation frequently, the interview was booked with as little time lag between screening and interview as possible. As many interviews as possible were done concurrently with the screening. Of the 597 beds that met study criteria, 348 people (58.3%) residing there were screened and 164 people (47.1%) had a positive screen. Details of the houses and facilities together with other sampling results appear in Appendix 2, including Table B1.1.

4.2.4 Interviewing and sampling results in drop-in centres

People were sampled from drop-in centres to supplement the sampling frame of accommodation houses for the following reasons: 1. People who lived in the sampled rooming house could be attending a local drop-in centre during the day. Sampling in drop-in centres was therefore used as an additional strategy in locating people who were not home when interviewers called on the selected rooming house. 2. People who are sleeping rough or are shelterless often attend drop-in centres to receive meals, clothing or participate in social activities. Sampling in drop-in centres was a way of accessing these roofless individuals. 3. People living in other types of accommodation who attend drop-in centres for emergency relief, food, or clothing were deemed eligible for inclusion in a study of marginal populations since their attendance at drop-in centres indicated a high level of poverty and social disadvantage. After compiling the sampling frame of relevant agencies in the catchment area (see Appendix 2), leaflets giving information about the study were distributed to program participants. Participation in the study was voluntary and only those people who wished to participate were screened. The interviewers approached the program participants, discussed the study and conducted the screen. Details of sampling results appear in Appendix 2. In summary, the estimated overall number of participants in the 10 agencies on an average day was 570. Of those, 150 were screened (26%), among whom 65 (43%) screened positive. See Table B1.1, Appendix 2. As people were screened, those identified as positive for psychosis and fulfilling the other inclusion criteria were invited for interview, or listed for later approach. The quota for interview in this segment of the study was 25. Initially, arrangements were made for interview the same day. However, in view of a greater than expected proportion of screens with positive results, the procedure was changed mid-way through the study period. The names of people eligible for interview were listed, and a random sample of individuals generated for sequential approach requesting agreement to the indepth interview. If an individual screened positive but was intoxicated, behaved in an aggressive manner, or was severely agitated, then the interviewer neither invited that person for interview nor put their name on the list.

Disability, homelessness and social relationships among people living with psychosis in Australia

47

4.3 Findings

4.3.1 Calculating the prevalence of people living with psychosis in marginal accommodation

The total number of people screened and interviewed is displayed in Table B1.1 (Appendix 2). Of those interviewed, 97% in the marginal accommodation sector and 96% in the drop-in centres were confirmed as having a lifetime diagnosis of psychosis according to the International Classification of Diseases, 10th revision (ICD-10) criteria described in Table B1.1. The sample was designed as a stratified random sample of houses; within each stratum of houses a cluster sample of beds was obtained. Standard formulae for cluster sampling (Cochran 1977) were used to obtain estimates and standard errors of prevalence within each stratum separately. These estimates and standard errors were then combined using the known (population) weights for the numbers of houses within each stratum, using standard formulae for stratified sampling (Cochran 1977). The results of these calculations are shown in Table 4.1. The estimated prevalence for lifetime psychotic disorder among those living in marginal accommodation is 42.1%. The standard error (se), allowing for the stratified cluster design and the finite population, is 2.4%. Therefore the 95% confidence interval (CI) for the true prevalence is 37% to 47% (that is, the estimate +/- 1.96 se). The total number of places occupied by people eligible for the study in the sampling frame is 1053. The estimated total number of people living in these houses with psychotic disorders is 444 (1053x42.1%), with a standard error of 26: hence a 95% confidence interval of 393 to 494. In general, this nested study supports the previously reported findings on socio-demographic characteristics, clinical features, substance use, disability profile, service use and quality of life of homeless people with psychosis (Chapter 3). Key features will be emphasised below. Table 4.1

Beds

Marginal Accommodation Prevalence Data

Eligible beds* Number screened Number interviewed Total 87 +ve 82 42.1% .024 37.4%, 46.9% Lifetime prevalence

se

CI

All known Houses in Houses in All known Total +ve houses sample sample houses** 1355 757 597 1053.1 348 164

*For sampled houses, some beds were found to be ineligible because the rooms were vacant or used by the house manager, or because the people living there were of non English speaking background, intellectually disabled, outside the age limits of the study, screened elsewhere, or they provided insufficient details; for non-sampled houses, the number of eligible beds was not determined. **Estimated as proportionate to that found in the sampled houses.

4.3.2 Socio-demographic characteristics

The majority of residents with psychosis in marginal accommodation in Melbourne were single unemployed men (Table 4.2), a similar finding to that of the main LPD survey. Women residents were also likely to have never married (54%), although more women than men had either been married (33%) or were currently in a marital or de facto relationship (13%). The median age of all residents was 39 years. As in the main survey, the vast majority (95% of men, 100% of women) was receiving government benefits or pensions. This reflects the very low proportion of people employed at the time of interview, and contrasts with the much higher proportion of people employed prior to illness.

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Disability, homelessness and social relationships among people living with psychosis in Australia

Table 4.2

Socio-demographic characteristics among people living in marginal accommodation (per cent)

Males (n=82) 38 79 Females (n=24) 41 88 Total (n=106)** 39 82

Variable (%) Age (median years) Australian born

Education

Left school 16 years or earlier Completed secondary school Post-school qualification* 54 22 20 50 21 13 54 22 18

Marital status

Single, never married Married or de facto (6 months or more) Separated, divorced or widowed 85 2 12 54 13 33 78 5 17

Employed

Before onset of illness At time of interview Receiving government benefits or pensions 68 9 95 92 13 100 74 9 95

*Includes trade certificate/apprenticeship, other certificate, associate diploma, undergrad diploma, bachelor or master degree, and PhD. **Since women were over-sampled for interview, findings for the total should be interpreted with care.

4.3.3 Clinical features

Among people living in marginal accommodation, about half had a lifetime diagnosis of schizophrenia (Table 4.3). A slightly higher proportion of women had this diagnosis than men. The most marked gender difference was among those diagnosed with depressive psychosis (21% of females compared with 5% of males). On the other hand, males were more likely to receive a diagnosis of `other psychosis' (28%) than their female counterparts (8%). Table 4.3 Clinical characteristics among people living in marginal accommodation (per cent)

ICD10 rating (lifetime) Depressive psychosis Bipolar, mania Schizophrenia Schizoaffective Other psychosis

Males (n=82) 5 7 44 16 28

Life-time Females (n=24) 21 4 50 17 8

Total* (n=106) 9 7 45 16 24

Males (n=61) 5 2 54 16 23

Present state Females (n=17) 6 6 65 12 12

Total* (n=78) 5 3 56 15 21

*Since women were over-sampled for interview, findings for the total should be interpreted with care.

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4.3.4 Substance use

The most striking finding was that a much higher proportion of the Melbourne homeless subgroup used illicit drugs at some point during their life-time (Table 4.4) than the marginal accommodation group described in chapter three. Examples where the Melbourne group's use of illicit substances is almost double that of the national `marginal' group include: cannabis use (Melbourne group 64% versus `marginal' 39%), amphetamines (Melbourne group 32% versus `marginal' 16%) and heroin (Melbourne group 25% versus `marginal' 13%). A much lower proportion of women was using illicit substances compared with men. This finding is contrary to that reported by Teesson et al. (2000) who found that among hostel residents in Sydney, a higher proportion of women had a drug use disorder than men. Table 4.4

Variable (%) Currently smoking tobacco

Substance use among people living in marginal accommodation (per cent)

Males (n=82) 89 Females (n=24) 71 Total (n=106)* 85

Substance use ever

Cannabis Amphetamines LSD Heroin Cocaine Tranquillisers 67 37 30 29 16 28 54 17 13 8 0 4 64 32 27 25 13 23

Daily use past year

Cannabis Amphetamines Heroin Tranquillisers 35 18 12 12 17 8 4 4 32 17 11 11

Lifetime abuse/dependence

Alcohol Cannabis Any other 45 32 29 21 21 13 40 30 26

*Since women were over-sampled for interview, findings for the total should be interpreted with care.

4.3.5 Relationships with others, home duties, self care and outside interests.

It is surprising that a high proportion of people did not see themselves as part of a household (Table 4.5), even though most would have been living in a rooming house with many other tenants and shared kitchen and sometimes dining facilities. In terms of social relationships, a high proportion reported social withdrawal and difficulties in socialising with others (see Table 4.5). A higher proportion of homeless women reported difficulties in the area of social relationships compared with men. This is reflected in a number of studies that characterise homeless women as having fewer social networks than other women (Cohen et al. 1997). A slightly higher proportion of Melbourne homeless women (42%) reported the absence of an intimate friend compared with men (38%). These figures were comparable with the national 50 Disability, homelessness and social relationships among people living with psychosis in Australia

`marginal' group (44%). The Melbourne group was more likely to report no friends and the desire for more friends was also expressed more often (51%) than among the national `marginal' group (43%). A higher proportion of women reported lack of outside interests compared with men (Table 4.5). Homeless men reported more difficulties with self care. Table 4.5 Relationships with others, home duties, self care and other interests among people living in marginal accommodation (per cent)

Males (n=82) 74 57 66 64 38 Females (n=24) 92 50 71 79 42 Total (n=106)* 77 58 68 68 38

Variable (%) Proportion not living in a household Living in household but with dysfunction in every day tasks Obvious/severe dysfunction in socialising Obvious/severe social withdrawal No intimate relationship/s

Availability of friends

No availability of friends 18 17 18

Perceived need for friends

Doesn't need good friends Needs and wants more friends Has as many as needs Obvious/severe dysfunction in self care Obvious/severe dysfunction outside interests 11 49 39 39 35 8 58 33 29 42 10 51 38 37 38

*Since women were over-sampled for interview, findings for the total should be interpreted with care.

4.3.6 Service use

Almost all this subgroup had used some health service in the preceding year (Table 4.6). Contacts with specialist mental health services in the preceding year were also relatively high, as were those with general practitioners (both 82%). A minority used specialist inpatient services only, hence the majority had contact with specialist mental health services in the community and, of these, slightly more than half (51% of men and 54% of women) had a case manager (Table 4.6). In contrast to the high prevalence of substance use within this subgroup, relatively few used drug and alcohol services in the past year (4% of women and 7% of men). However, these figures are slightly higher than the figure for the national `marginal' group. A worrying feature was the higher rates of deliberate self-harm or overdose over the previous twelve months in this Melbourne homeless subgroup (Table 4.7), compared with those previously reported (30% and 19%, respectively). See Chapter 3. Similarly, there were more participants in this Melbourne study who overdosed and did not seek help in the preceding year (20% versus 10%). Both these findings are of great concern.

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Table 4.6

Variable (%)

Service use among people living in marginal accommodation (per cent)

Males (n=82) Females (n=24) Total (n=106)*

Service use in past year

Any use of specialist mental health services (MHS) Specialist MHS ­ inpatient admissions Specialist MHS ­ involuntary inpatient admissions Specialist MHS ­ inpatient admissions only Community (specialist) MHS Case manager in community (specialist) MHS GP Emergency department Drug and alcohol unit 82 37 20 0 82 51 80 52 7 83 25 13 4 79 54 88 50 4 82 33 18 1 81 52 82 52 7

*Since women were over-sampled for interview, findings for the total should be interpreted with care.

4.3.7 Quality of life

There were notably higher annual rates for most of the quality of life indicators within this Melbourne study (Table 4.7) compared with those reported in Chapter 3. Thus, being a victim of violence (32% versus 26%), having an unmet need for police assistance (23% versus 18%), having been arrested (24% versus 17%) and charged (18% versus 14%) were all more common in the Melbourne homeless subgroup. More strikingly, dissatisfaction with independence (49%) and life as a whole (70%) was even greater than reported in the main LPD survey for this subgroup (35% and 53%, respectively). Within the Melbourne homeless group, men were much more likely to have been arrested or charged and were also more likely to be dissatisfied with their independence and life as a whole than women (Table 4.7). Table 4.7

Variable (%) Feel unsafe in present locality Victim of violence in past year Unable to access police/legal assistance as needed in past year Arrested in last 12 months Charged in last 12 months Deliberate self harm/overdose in last 12 months Occasions of drug overdose and not seeking help in last 12 months Dissatisfied with independence Dissatisfied with life as a whole

Quality of life among people living in marginal accommodation (per cent)

Males (n=82) 24 30 27 29 22 30 18 50 72 Females (n=24) 17 33 13 4 0 29 21 38 63 Total (n=106)* 23 32 23 24 18 30 20 49 70

*Since women were over-sampled for interview, findings for the total should be interpreted with care.

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Disability, homelessness and social relationships among people living with psychosis in Australia

4.4 Conclusions

There is an unexpectedly high prevalence of people living with psychotic disorders in marginal accommodation in Melbourne (42%). This compares with findings in 1989 whereby 21% of people living in marginal settings in Melbourne had a lifetime diagnosis of psychosis (Herrman et al. 1989). Housing for people on low incomes in the two cities had become much scarcer over several years before the study. For instance, in the City of Boroondara in 1987 there were 53 houses (786 beds); in 1995 there were 22 houses (486 beds) [source: Inner Eastern Regional Housing Needs Assessment, 1995]; and in 1997 there were 20 houses (419 beds) [field work for this study]. There is a possible link between these two observations above ­ that is, as housing for people on low incomes becomes scarcer, it may be increasingly occupied by those who are particularly disabled or disadvantaged, of whom people with psychosis are an important subgroup. Except for those people with psychosis in institutional settings, disability in everyday, occupational and social functioning is higher for those living in marginal accommodation than any other group. See Chapter 3. The high level of unemployment and the frequency of difficulties with social relationships (both the perceived success of social interactions as well as the degree of avoidance of the same) are particularly striking. The degree to which residents are experiencing a lack of safety in their day-to-day environment also deserves comment. As already noted, safety is a valued attribute of people's accommodation. This relative lack of safety together with other adverse features of the environment may be contributing to the high levels of dissatisfaction observed amongst residents. The frequent use of illicit substances of all types as well as high rates of lifetime abuse and dependence in this homeless subgroup of people with psychosis has enormous implications. This is especially so given the low rate of use of drug and alcohol services. Previous studies in Sydney and Melbourne (Herrman et al. 1989; Teesson et al. 2000), and in other countries, have documented similar high rates of overlap in individual homeless respondents between substance dependence and mood and psychotic disorders. Such co-morbidity of substance use with mental disorders is probably an important factor in the genesis of homelessness. Co-morbidity is also a problem in homeless women, although the rates of disorder reported here are less than those in men. The needs of those with dual diagnosis are especially complex. However, work in the US in particular has shown that flexible, coordinated and adequately resourced services can make a difference to most people, even those with severe disabilities. Both early intervention and rehabilitation or maintenance in adequate housing with opportunities for social contact and activity are useful and appropriate. Homeless women with psychotic illness have some particular characteristics pointing to a different profile of needs. Co-morbidity of psychotic illness with substance use is high, although less than for homeless men, as already indicated. Homeless women in Melbourne have a different profile of psychotic diagnoses compared with men, with more experiencing psychotic depression. Furthermore, more homeless women than men are married or have previously been so, indicating a possible role of marital breakdown in their progression to homelessness. Finally, the women in this study had greater difficulties in their social functioning and were less likely to have an intimate relationship compared with men. The findings raise the question: is this the best we can do? This study was undertaken in a catchment area with an organised, sectorised, specialist mental health service. There were high rates of contact with specialist mental health services, including community mental health services, among those interviewed. There were also high rates of contact with general

Disability, homelessness and social relationships among people living with psychosis in Australia

53

practitioners and hospital emergency services. However, we do not know the focus of these contacts with services, whether they were addressing mental health issues and associated disabilities (as documented above) and indeed, whether these services were in contact with each other. It has been previously reported that people, when they have access to specialist services, do make contact with them (Herrman et al. 1989). However, at the same time they have high levels of disability and unmet needs. As previously argued, existing methods of assessing disability are not especially good, and a more intensive analysis of needs is required (Hogg and Marshall 1992). Furthermore, the low use of rehabilitation and vocational services has already been noted. Even the best clinical services will fail to meet the needs of those with the most complex problems unless there is close co-operation with housing, welfare and disability support services (including vocational services) to provide support and assistance to each individual.

4.5 Recommendations

4.5.1 More in-depth analyses of disability and unmet need among homeless people with psychosis are required, including the perspective of residents and staff. The results will be crucial information for planning future services. 4.5.2 Service systems must be linked at all levels to remove barriers and promote efficient use of services; this includes psychiatric services with housing, social services, substance abuse treatment, and the criminal justice system. In particular, coordinated service provision is essential for those with complex needs. 4.5.3 Substance abuse treatment must be an integral part of comprehensive psychiatric services for people with severe mental illnesses. 4.5.4 While wider factors are involved, attention to risk factors at the individual level may reverse or prevent a drift towards homelessness. Thus, good management of severe mental illness is required and is similar in principle whether or not the patients are homeless, and is likely to contribute to the prevention of homelessness. At the same time service providers need to be aware of factors particular to the management of homeless people. The provision of a decent place to live is a primary need, complemented by access to appropriate treatment and support. 4.5.5 A range of housing options is required. Independent living with the availability of support services is both possible and preferred by most people with mental illnesses. Because this does not meet the needs or preferences of everyone, however, other choices may have to be considered. Negotiation of the role, resources and service links of the various sectors providing housing support will be necessary for this to be successful. 4.5.6 Preventive health care and education are critical, especially relating to the risks of HIV/ AIDS, tuberculosis and smoking. This is most likely to be effective if provided within the framework of accessible and relevant primary health care. 4.5.7 The needs of families and the factors that may enhance the ability and willingness of families to provide care have often been disregarded. The breakdown of family links may increase the chances of homelessness for an individual with severe mental illness. Therefore, continuing attention to the needs for family and individual support to help prevent homelessness and its persistence among those with mental illness is required. 4.5.8 The particular needs of homeless women with psychotic disorders need to be addressed in the provision of appropriate services. These will include attention to marital breakdown and wider aspects of social functioning. 4.5.9 Research programs into homelessness and serious mental illness should include longerterm follow-up studies that focus on how to sustain early gains. 54 Disability, homelessness and social relationships among people living with psychosis in Australia

5.

Social networks and functioning of people with psychosis

S is a 33 year old female who lives in her own home with her husband and three children. She felt very sad after having her last child. She was very lonely and did not have any family support as her parents live in the country. Her friends were helpful but there was only so much she could ask. She started to develop thoughts that she was very important. Everything that was said to her took on special significance; it was like people were talking in metaphors. She saw herself being talked about on the television and in newspaper headlines. Things came to a crisis when she thought that she and her children were dead. She stayed in hospital for a few weeks and was discharged into the care of a private psychiatrist. Her husband has been very supportive and took time off work to spend time with her and the family. She is mostly satisfied with the future and believes it is important to have more support services.

5.1 People with schizophrenia and their social networks

Most studies of the association between people's social relationships and their overall well-being have looked at people's social networks ­ defined as the organisation of people's ties to one another, the frequency of their contact with various network members, and in particular the number of relationships or social roles a person has (Thoits 1995). Social support, on the other hand, is a subjective assessment of the affective or emotional value of the network interactions (Albert et al. 1998). It has been concluded that social networks and social support have benefits for the individual by either acting as a buffer against stress, assisting in recovery from physical illness, or having positive effects on general well-being (Henderson 1988). In the field of mental illness, most studies have concentrated on people with schizophrenia and the evidence for a beneficial effect of wider social networks and greater social support in those with psychosis (especially schizophrenia) is still accumulating (Buchanan 1995). Indeed, it has been noted that certain types of social interaction are too stressful for some people with psychosis (Buchanan 1995). Nevertheless, positive benefits of social support include a role in preventing homelessness among people with psychotic disorders (Odell and Commander 2000). It is certainly the case that people with schizophrenia are more likely to have smaller social networks and their network is likely to decrease as duration of illness increases. Also, their network is more likely to comprise family members and to be made up of more dependent relationships than for people from the general community (Hammer et al. 1978; Buchanan 1995; Albert et al. 1998; Becker et al. 1998). Among members of the general population, an intimate psychosocial network consists of about 25 people. In contrast, people with severe mental illness report between 5 and 13 people in their social network (Albert et al. 1998). It appears that the most dramatic reduction in social networks occurs after the first hospitalisation. People with schizophrenia assessed during their first admission reported larger social networks than those assessed after a number of hospital admissions (Lipton et al. 1981). The latter were more likely to have family contacts and proportionally fewer friendship or acquaintance contacts; indeed, one third did not have a close friend (Lipton et al. 1981). Thus, it seems likely that the family network declines less rapidly than friendship networks in the course of a schizophrenic illness. Disability, homelessness and social relationships among people living with psychosis in Australia 55

The interactions between persons with severe mental illness and their families are complex and the impact of having family in one's network may be mixed. For instance, several studies have reported that persons whose social networks are composed primarily of friends, neighbours and others who were not kin, tended to demonstrate better occupational functioning, better symptomatic recovery and lower relapse rates than those whose social networks were composed primarily of relatives (Henry and Coster 1996). A number of researchers (Brown et al. 1972; Vaughn and Leff 1976; Lukoff et al. 1984) have found that people with schizophrenia were more likely to relapse if their family members expressed negative emotions towards them. These negative emotions (which could be viewed as less adaptive coping responses) included high levels of criticism, over-involvement and hostility directed towards the person by a family member (either a parent or spouse). Erickson et al. (1998) found that non-family social resources were correlated with good prognosis in schizophrenia and affective psychosis, while involvement of family members predicted good prognosis among people with affective psychosis but poor outcomes among people with schizophrenia. However, a Finnish study indicated that people with schizophrenia who were living outside of their family, particularly men, were less likely to have good recovery of their functioning over a five year period (Salokangas 1997). These various and contradictory findings suggest a need to look more carefully at the possible impact of both family and friends in the network of people with psychosis. This is particularly relevant given that current models of mental health service delivery do not seem to be very effective in improving people's social functioning (Mueser et al. 1998). This chapter aims to describe the LPD participants in terms of their social networks and associated life circumstances.

5.2 Measures and definitions used in this chapter

· A `social network' is defined as having face-to-face contact with family and friends in the last 12 months. · `Socially isolated' refers to no contact or very minimal contact with one family member and no friends or just one friend. · `Friends dominated network' refers to a few or many friends and no or minimal family contact. · `Family dominated network' refers to frequent family contact and one or no friends. · `Socially integrated' refers to a few or many friends and frequent family contact. Of the 980 people in the survey, 968 had complete data for the above variables allowing them to be categorised accordingly.

5.3 Findings

A total of 66 people (7%) were identified as socially isolated. While 112 people (11%) were identified as having friends dominated networks, 143 (15%) had family dominated networks. Finally, the majority of participants were classified as socially integrated (647, or 66%).

5.3.1 Socio-demographic characteristics

When examining the characteristics of people across these four groups defined by their social networks, there was a higher proportion of males in the socially isolated group (73%) compared with that in the socially integrated group (57%). In terms of marital status there were no obvious differences between the groups (Table 5.1). Those without family contact in their network were older than those with relatives in their network. A higher proportion of people who were socially isolated was living in marginal accommodation 56 Disability, homelessness and social relationships among people living with psychosis in Australia

(52%) compared with those who were socially integrated (23%) and those with family dominated networks (20%). People who were socially isolated were much less likely to be living in their own home (6%) or living in rented accommodation, either public or private (15%), and more likely to be in institutional accommodation (20%) compared with the other groups (Table 5.1). Table 5.1 Socio demographic characteristics by social networks (per cent)

Social network Socially isolated n Gender ­ male Age (median years) 66 72.7 43.5 Friends dominated network 112 63.4 43.5 Family dominated network 143 63.6 38 Socially integrated 647 56.9 38

Marital status

Single, never married Married/defacto Divorced/separated/widowed 69.7 21.2 9.1 64.3 25.9 9.8 62.9 20.3 16.8 62.4 19.9 17.6

Education

Highest qualification Completed secondary school Trade or other certificate Undergraduate/postgraduate Other Left school, no qualifications 57.6 22.7 13.6 3.0 17.0 15.2 8.9 1.8 56.3 56.6 17.5 20.3 5.6 17.5 21.6 14.5 2.3 43.0

Living arrangements

Living alone Institutional accommodation Supported housing Marginal accommodation Rented home Own/family home 74.2 20.4 7.4 51.9 14.8 5.6 72.3 8.7 6.8 44.7 31.1 8.7 48.3 6.8 5.1 20.3 32.2 35.6 41.9 5.0 5.3 22.6 32.0 35.2

Source of income

Government pension Disability Support Pension 93.9 77.3 92.0 81.3 92.3 71.3 81.6 64.1

5.3.2 Clinical features

There were no striking differences between people grouped according to social network in terms of type of disorder (Table 5.2). There is a relatively even distribution of schizophrenia and schizo-affective disorder among the four groups. In terms of course of the disorder, a much higher proportion of people who were socially isolated had a chronic course of their disorder with little or no recovery (64%) compared with those who were socially integrated (38%).

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Table 5.2

Clinical characteristics by social networks (per cent)

Social network Socially isolated n 66 Friends dominated network 112 Family dominated network 143 Socially integrated 647

Diagnosis

Schizophrenia Schizo-affective disorder Bipolar mania Other psychosis Depressive psychosis Did not meet criteria for psychosis 51.5 12.1 13.6 13.6 4.5 4.5 55.4 8.9 8.9 13.4 8.0 5.4 52.4 9.8 11.9 16.8 5.6 3.5 51.0 10.5 11.4 15.0 7.1 4.9

Course of disorder

Single episode Multiple episodes good/partial recovery Chronic illness 3.0 33.3 63.6 8.0 42.9 49.1 5.6 44.8 49.7 9.9 52.1 38.0

5.3.3 Work, study, and home duties

More people who were socially integrated were in full-time (12%) or part-time employment (23%) compared with those who were socially isolated (5% and 3%, respectively). See Table 5.3. A somewhat higher proportion of people with family dominated networks was also employed compared with those with friends dominated networks. Overall, a higher proportion of people who were socially isolated was unoccupied (86%) compared with people in other categories. Even among those who were occupied, a substantial proportion reported dysfunction in their performance across all categories.

5.3.4 Household activities

People without family members in their network were less likely to be part of a household (Table 5.3). Of those who were in a household, a lower proportion of people who were socially integrated (43%) was rated as having dysfunction in performing household tasks (such as cooking for others, cleaning up, washing up, shopping for the household, and doing other chores and errands), compared with the other groups (socially isolated 63%, friends dominated network 62% and family dominated network 70%).

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Table 5.3

Work, study, home duties by social network (per cent)

Social network Socially isolated 66 Friends dominated network 112 Family dominated network 143 Socially integrated 647

n

Main occupation

Full-time work outside the home Part-time work outside the home Housework Studying Retired None of above Those in main occupation* (n) Obvious/severe dysfunction in main occupation performance Those in household (n) Obvious/severe dysfunction in household activities 4.6 3.1 0.0 1.5 4.6 86.2 7 28.6 19 63.2 3.6 9.8 2.7 2.7 8.0 73.2 21 38.1 34 61.8 7.0 12.7 8.5 6.3 2.8 62.7 48 58.3 77 70.1 12.1 22.6 6.2 5.0 1.9 52.2 296 45.6 382 43.2

* Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.

5.3.5 Relationships with others, self care and outside interests

Participants' socialising was assessed by asking questions about how well they felt they were getting on with people at work, neighbours and members of the family. A higher proportion of people who were socially isolated were rated by the interviewers as having obvious or severe dysfunction in relating to people around them (86%) compared with those who were socially integrated (50%) (Table 5.4). Interestingly, a higher proportion of those with family dominated networks (82%) also had obvious or severe dysfunction in this area compared with those with a network dominated by friends (64%). A similar pattern was observed with respect to social withdrawal. Having an intimate relationship was defined as whether the person had a special person, for example, a best friend with whom they could share their thoughts and feelings. This variable has been used as a proxy for social support, giving some indication of the quality of support available within the social network. A higher proportion of socially isolated people did not have such a person (67%) compared with people who were socially integrated (33%). It is interesting to note that a third of people who had a network comprised of both family and friends felt that they did not have a person that they could rely on or who could offer them emotional support (Table 5.4). Conversely one third of those who were isolated, that is they only had one friend or one family member, felt that they did have one person who could offer them emotional support. When asked if people had as many good friends as they needed, a much higher proportion of people who were socially isolated (27%) or had family dominated networks (14%) said that they did not need good friends at all, compared with those with friends dominated networks (4%) and those who were socially integrated (1%). More people who were socially isolated reported a deterioration in their relationships with others in the last 12 months (53%) than all the other groups (33%, 37% and 25%, respectively). See Table 5.4.

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Self care In terms of self care, a higher proportion of people who were socially isolated was rated as having dysfunction in the area of keeping oneself fit and healthy, eating well, and looking after one's general appearance (50%) compared with those who were integrated socially (23%) (Table 5.4). A lower proportion of people with friends dominated networks had dysfunction in self care (35%) than those with family dominated networks (47%). Outside interests People who were socially integrated were more likely to be interested in activities and events in either the wider or immediate environment than any of the other groups. Table 5.4 Relationships with others, self care and outside interests by social networks (per cent)

Social network Socially isolated n Obvious/severe dysfunction in socialising Obvious/severe social withdrawal No intimate relationship/s 66 86.4 83.3 66.7 Friends dominated network 112 64.3 61.6 41.1 Family dominated network 143 81.8 83.2 53.8 Socially integrated 647 49.8 48.1 33.1

Need for friends

Doesn't need good friends Needs and wants more friends Social deterioration in last 12 months Social improvement in last 12 months Obvious/severe dysfunction in self care Obvious/severe dysfunction in outside interests 27.3 51.5 52.5 6.6 50.0 53.0 3.6 45.5 33.0 11.9 34.8 48.2 14.0 58.7 37.1 20.0 46.9 49.0 1.1 41.7 25.4 27.8 22.6 34.0

5.4 Conclusions

The findings indicate that relative social isolation amongst people living with psychosis is common. Although the group of participants who were classed as socially integrated had some social networks consisting of both friends and family, many were still experiencing some social dysfunction and almost half wanted more friends. One third of these people stated that they had no intimate friend (someone who they could rely on for support). It also seems that people with psychosis who are in contact with relatives (but not friends) may often be experiencing almost as much social dysfunction as those with virtually no contact with either friends or family. In these situations, relatives may be attempting to overlook or compensate for the social difficulties that many with psychosis are experiencing and friends may be less tolerant of these difficulties. A small but nevertheless important minority of those participants who were isolated or had only family members in their networks appear to actively reject the need for more friends. This is consistent with phenomenological research suggesting that some people who have experienced multiple social losses in the course of their disorder give up trying to make and keep friends. Thus:

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For us giving up was a way of surviving. Giving up, refusing to hope. Not trying. Not caring: all of these were ways of trying to protect the last fragile traces of our spirit and our selfhood from undergoing another crushing. (Davidson and Stayner 1997, p.10). Nevertheless, there may be underlying needs and desires for social relationships ­`despite their outward appearance at times suggesting the contrary' (Davidson et al. 2001, p.276). There is an important association between social isolation and socio-economic disadvantage, such as lack of employment and inadequate housing. The most socially isolated individuals are far less likely to have a job or live in `independent accommodation' (own or family home or rented accommodation). It is possible that stigma, lack of employment and poverty as indicated by sub-standard accommodation may limit a person's opportunity for social participation, which in turn may limit their ability to meet new people and retain old friendships. Some of the explanation for this association may also be afforded by the more chronic course of illness experienced by the socially isolated, which allows little respite from symptoms during which to pursue a social life. However, it is also possible that social isolation leads to greater apparent `chronicity' of illness. The presence of other people in a person's living arrangement may not truly reflect their opportunities for, and engagement in, social interactions. For example, many people living in institutional settings or marginal accommodation where other people are often around are nevertheless socially isolated. Conversely, one cannot assume that people who are living in rental properties (often alone) are without contact with friends and family. This is consistent with research by Brown (1996) indicating that when people were compared across living situations (living alone, in a group home, with family) there was no difference in reported loneliness. It has already been noted that the ability to care for oneself is an important goal for consumers and a valued contributor to quality of life. It is striking that those survey participants who had friends in their social networks were rated as having better self care. It is possible that friendships serve as a greater incentive for those with mental illness to look after themselves, via interactions and activities that promote self-esteem. Alternatively, it may be that families are more tolerant than friends and acquaintances of people's difficulties in this area. The converse association is observed for employment. People with networks dominated by family were more likely to be employed than those in friends dominated networks. It seems likely that the nature of people's social networks, whether primarily composed of friends or family members, may have differing relationships to varied aspects of their functioning. Consistent with the literature on social networks, the type of psychotic disorder (diagnosis) bears little relationship to people's social networks. However, the course of the psychotic disorder is important, since those people experiencing little or no recovery are more likely to be isolated.

5.5 Recommendations

5.5.1 Community mental health services should broaden their focus to provide psychological, social and practical input that will assist people with psychosis to establish and reestablish their social networks and also provide support to maintain existing networks to prevent future loss or deterioration in relationships. In this regard, people's preferences should be taken into account, since some people actively reject more friends: the underlying causes of this require exploration.

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5.5.2 Public education campaigns are required to combat stigma and minimise the possibility that friendships and family relationships will be disrupted by the experience of psychotic illness. In addition, local, state and national organisations providing social opportunities in the broader community should examine whether their policies allow for appropriate access by those with psychotic disorders. Significant differences in overall social outcome have been shown to be associated with differences in mental health policy (de Sisto et al. 1995). 5.5.3 People with psychosis who are more socially isolated require greater rehabilitation input to perform their activities of daily living, including assistance to regain (and learn, if necessary) relevant skills. Community mental health services should review their policies to ensure that they have effective outreach procedures to facilitate their access by people with psychosis who are particularly socially isolated. In addition, this subgroup of people should be specifically targeted by services for assessment of, and effective intervention for, their difficulties with regard to daily living skills. 5.5.4 Education and training programs are required to develop specific professional skills that will assist people with psychosis to improve their social functioning more effectively. 5.5.5 To date, most research has concentrated on the size of a person's social networks and little attention has been paid to the quality of existing relationships, that is, how supported the person feels emotionally and instrumentally. There should be more quantitative and qualitative research that focuses on the quality of relationships of people with psychosis. Further, the expressed needs of consumers with regard to social relationships should be surveyed and taken into account. 5.5.6 Most research studies are designed from the perspective that social dysfunction is an inevitable consequence of the experience of psychotic disorder. Insufficient attention is given to the person's social context and especially to the identified obstacles to social relationships that are not directly to do with the disorder (Harding and Keller 1998). These should be considered in future research programs.

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Appendix 1: The Diagnostic Interview for Psychoses-Disability Module (DIP-DIS)

Background and rationale for development of the DIP-DIS

In order to assist with service planning, the Study of Low Prevalence Disorders (LPD) aimed to provide data on the degree of disability associated with the experience of psychosis. This was done by assessing those aspects of objective circumstances and subjective experience that have a bearing on the quality of life of persons experiencing psychosis (Lehman 1983; Jenkins 1998). The conceptual framework for this assessment of the impact of psychotic disorder was the rehabilitation model (Anthony et al. 1990) with its emphasis on disability as restriction or lack of ability in role performance. However, this framework was deliberately broadened to incorporate more recent notions of the consequences of mental illness embodied in the recovery model (Deegan 1988; Anthony 1993) and in particular, to include more subjective outcomes (Kaiser et al. 1997; Orley et al. 1998). Existing tools for the assessment of role performance, including social adjustment and quality of life of persons with mental illness (Weissman et al. 1981; Lehman 1996), were judged to be inappropriate for this survey since they are often specific to particular disorders (for example, schizophrenia) or limited in scope to, for example, social roles (Weissman 1975). Thus, a working group of the LPD investigators identified qualities that were required in a measure of disability. These included: 1) acceptability to largely community-dwelling respondents 2) applicability to persons with psychosis 3) relative comprehensiveness to cover the main areas of disability experienced by people with psychosis 4) inclusion of the perspective of the patient and clinician 5) brevity (could be administered in 10 - 15 minutes). The objective was to have an instrument that would measure performance in the areas of personal and social activities and manifest behaviour that could be attributable to illness and not to lack of personal or social opportunities.

The Disability Module (DIP-DIS)

As explained in Chapter 2, the DIP-Disability Module (DIP-DIS) consists of a core made up of an abridged and modified version of the WHO/DAS (World Health Organisation 1988). This was supplemented by sections of the Lancashire Quality of Life Profile (Oliver et al. 1997) and the Current Social Contacts Scale described by Tucker (1982). Items were selected from these sources to reflect the range of disabilities associated with the experience of psychosis, as identified during consultative meetings with consumers and mental health professionals. The DIP-DIS assesses functioning in the areas of participation in household activities, socialising, social withdrawal, quality of interpersonal relationships, occupational performance, interests and information, intimate relationships, sexual relationships, and self care. These items are rated by research interviewers using all information gathered with a series of open-ended questions to Disability, homelessness and social relationships among people living with psychosis in Australia 63

determine relevant life circumstances and opportunities and details of functioning of the respondent. Most items are rated on a 3-point scale: 0 (no dysfunction), 1 (obvious dysfunction) and 2 (severe dysfunction). Two other items asked respondents to rate their satisfaction with their own independence and with life on a 4-point scale: mainly satisfied, mixed or often dissatisfied, mostly seriously dissatisfied, and uncertain or impossible to rate. The reliability and validity of the DIP-DIS, that is, its consistency and appropriateness to the constructs of interest, were tested. (Details of the internal structure of the DIP-DIS and the internal consistency of the items are provided in Gureje et al., 2001.)

Inter-rater reliability

The inter-rater reliability, that is the consistency of the ratings made by different raters, was determined from independent ratings by five research interviewers of 10 videotaped interviews. The results are shown in Table A1.1. Most of the items achieved good to excellent reliability, the exceptions being intimate relationships and sexual relationships. Table A1.1

Items Participation in household activities Socialising Social withdrawal Quality of interpersonal relationships Intimate relationships Sexual relationships Occupational performance Self-care Interests and information Satisfaction with independence Satisfaction with life * p<.01

Inter-rater reliability

Intra-class correlation .94* .90* .88* .86* .36 .19 .67* .94* .94* .99* .99*

Agreement with another measure of disability: Criterion validity

How well do the ratings on the DIP-DIS agree with an independent measure of quality of life? This question was addressed by comparing the DIP-DIS ratings of a sub-sample of 140 participants in Victoria with their scores on a self-completed measure of quality of life, designed by the World Health Organisation, the WHOQOL-Bref. The WHOQOL-Bref, is a 26-item questionnaire with demonstrated reliability and validity (The WHOQOL Group 1998). For this analysis, the DIP-DIS was compared with the four domain scores derived from the WHOQOLBref: physical health, psychological, social relationships, and environment. The two measures of subjective satisfaction (satisfaction with own independence and satisfaction with life) were consistently correlated with the four domains of the WHOQOL-Bref. See Table A1.2. Other than these two items, only overall socialising, social withdrawal, and sexual relationships showed significant correlations with the domain of psychological health on the WHOQOL-Bref (Table A1.2). A summated score of the DIP-DIS was computed, consisting of all items but excluding 64 Disability, homelessness and social relationships among people living with psychosis in Australia

those that would a priori disadvantage some of the patients or are otherwise not applicable to some: participation in household activities, sexual relationships, and overall performance in main occupation. This summated score correlated with all four domains of WHOQOL-Bref (Table A1.2). In general, this finding would suggest that interviewer ratings of disability using the DIPDIS were supported by patients' assessment of their own quality of life, emphasising the link between the two (Gureje et al. 2001). Table A1.2 Agreement with another measure of disability: Criterion validity (Criterion: WHOQOL-BREF; Correlations(0.30)

WHOQOL-BREF ITEMS Physical health Socialising Social withdrawal Sexual relationships Satisfaction with independence Satisfaction with life Summated score of DIP-DIS -0.34** -0.47** -0.42** Psychological -0.30** -0.30** -0.30* -0.35** -0.53** -0.52** -0.49** -0.53** -0.51** -0.45** -0.44** -0.53** Social relationships Environment

DIP-DIS 1tems#

# DIP-DIS is the Disability Module of the Diagnostic Interview for Psychoses; WHOQOL-BREF is the World Health Organisation Quality of Life, Brief Version * p<0.01 ** p<0.001

Sensitivity to differences in disability: Discriminant validity

Among the 324 persons interviewed in Victoria were a substantial number of homeless people who were residing in several types of marginal accommodation. This sample thus provided an opportunity to examine the ability of the DIP-DIS to discriminate between groups of individuals who may be expected to have varying levels of disability. In doing this, an examination was made of the ability of the instrument to discriminate between respondents drawn from mainstream psychiatric outpatient clinics (n=150), those receiving exclusive follow-up care from general practitioners (GPs) or private psychiatrists (n=36), and respondents residing in marginal accommodation (and not receiving mainstream psychiatric services, n=103). The performance of the three groups of respondents on the summated disability score (computed as described above) were: patients with GPs/private psychiatrists 2.8 (standard deviation 2.3), those in mainstream services 3.8 (2.9), and those in marginal accommodation 5.2 (2.8). These values were significantly different (F = 12.7, df. 2,286, p<.001) and followed gradations in the expected direction: patients with GPs/private psychiatrists were least disabled, and residents of marginal accommodation were the most disabled.

Discussion

The DIP-DIS was designed to be brief and yet comprehensive in its coverage of the common forms of disability among individuals with psychosis. Its development was strongly influenced by the views of those directly affected by psychosis and of those who cared for them. This may explain the observations made by research workers of its high acceptability during the study.

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65

The result of the inter-rater exercise, while encouraging, shows that items relating to sexual and intimate relationships may be too personal to rate reliably among respondents with experience of psychosis. In the assessment of the relationship of the DIP-DIS to an independent measure of quality of life, it was revealing that the items that most strongly correlated with the four domains of the WHOQOL-Bref were those dealing with respondents' subjective assessment of satisfaction with own independence and with life. These observations suggest that while the concept of quality of life is integral to that of disability, the latter is nevertheless broader than the former. The results of the discriminant analysis provided an indication that the DIP-DIS is sensitive to differences in the levels of disability. However, future studies should provide a more direct assessment of its sensitivity to change. Overall, the DIP-DIS seems an appropriate and valid measure of disability among persons with the experience of psychosis. Its rating of disability may however be improved and enriched by supplementary longitudinal assessment of functioning together with information supplied by key informants and observational assessments of functioning.

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Appendix 2: Details of the methodology of the systematic case study in Melbourne

Instruments

The screening protocol was developed for the national LPD study (Jablensky et al. 2000). The Psychosis Screen (PS), includes a set of five questions about specific psychotic symptoms (current or at any time in the past) and a sixth question asking whether a doctor had ever told the person he/she may have schizophrenia, schizo-affective disorder or bipolar disorder (manic depression). It also has an item recording the clinical judgement of the key worker administering the PS (where applicable; or the trained clinician conducting the screen as in this nested study) as to whether, on the basis of all information available, psychotic symptoms were present. Scoring two or more items as positive was selected as the criterion for a positive screen after pilot testing the instrument before the national survey (Jablensky et al. 1999b). With sensitivity and specificity at 0.67 and 0.84, respectively, the positive predictive value of the screen was 0.70 and the negative predictive value 0.80. The clinicians administering the screen were instructed to score the screen positive rather than negative in cases of doubt, and doubtful instances were reviewed with the fieldwork supervisor and trainer [Helen Evert (HE) and Oye Gureje (OG) in the nested study reported here].

Compiling the sampling frame for marginal accommodation

A list of all marginal facilities in the catchment area was compiled from various sources. The state government Department of Housing, local councils, non-government community and religious agencies and other researchers (Bryan Speed, Project Epidemiologist, Infectious Diseases Physician, Austin & Repatriation Medical Centre, who conducted a study into the prevalence of TB among people living in rooming houses; Source: Reid et al. 1998) all assisted. Information was collected about the number of rooms, the `turn over' of residents, and staffing and support in each facility identified. The original list of appropriate houses and establishments (`houses') obtained from these sources was amended to exclude houses with insufficient contact details or bed numbers. This list was further reduced when interviewers contacted houses and discovered that they were no longer in existence, or had been converted into apartments or student accommodation (32 houses in Yarra, 38 houses in Boroondara). In preparation for the study, HE contacted a number of key non-government agencies. These included Yarra Community Housing Co-operative (300 residents living in 21 properties), Fitzroy, Richmond and Collingwood Accommodation Service, the Inner Urban Regional Housing Council, The Rooming House Tenant's Association, The Royal District Nursing Service (RDNS) Homeless Persons Program, Bedford Street Outreach service, and Hawthorn Project run by the Salvation Army. Religious organisations also have a number of properties that provide long-term and short-term accommodation, and The Catholic Homeless Network provided a forum for Catholic welfare agencies to discuss common issues. The Mental Health Issues Group is another important forum where key non-government agencies discuss issues and concerns about mental health services. HE discussed the study and methodology with both of these groups. Disability, homelessness and social relationships among people living with psychosis in Australia 67

A number of the organisations were concerned about privacy for tenants and specifically about the possibility of information about people's mental health being available to the manager or proprietor of the rooming house. Meetings were held to assure various groups that the census would be conducted in a sensitive manner. A focus group was convened through consumer consultants from the Victorian Mental Illness Awareness Council (VMIAC) who invited people living in rooming houses to discuss their views on the best ways to conduct the study. Five people attended the session, and unanimously expressed a strong view that screening be conducted by direct contact between interviewers and residents. Confidentiality, privacy and information were critical considerations for residents. People felt it was important to inform occupants about the study in advance, giving them the option of not participating in the census, and that this could be accomplished by approaching residents directly to conduct the screen. The interviewers promoted the study to proprietors and residents through working closely with the non-government agencies and St. Vincent's Mental Health Service (SVMHS), specifically the outreach service to homeless people. Residents were informed about the study in a number of ways: articles in the local newspaper, posters on rooming houses' notice boards and individual leaflets under people's doors. Each resident in Yarra Community Housing received a letter from the manager describing and endorsing the study. A number of meetings were held between the interviewers and staff from SVMHS, the Royal District Nursing Service and the Yarra Community Housing Group to advise the interviewers about safety issues. Interviewers went into the houses in pairs, with a mobile phone, and their itineraries were logged and monitored.

Rationale for number of residents approached for screening

We had the resources to locate and conduct the in-depth interviews with up to 90 residents who were screened as positive. The pilot data on the screening instrument suggested a positive predictive value of 70% for current psychotic disorder. Based on a presumed prevalence for psychotic disorder of 30% among homeless people, we calculated that we would need to screen about 360 people to identify 110 to 120 people with positive screens (of whom we expected 90 to consent to and attend an interview). Since we expected a sizeable number of residents to decline screening, a target of 500 residents was used as a basis for obtaining 360 screens.

Ethical procedures

During initial approach for screening, all residents were informed about the study and specifically told that it was a random selection of accommodation settings, they were free not to participate, and information collected was confidential and would be used in an aggregate form. They were also informed that they could be asked to participate in a longer interview. After individuals agreed to participate in the latter, they were informed that they would be reimbursed for their time. All interviewed residents signed a consent form.

Sampling results in marginal accommodation

The final list contained a total of 80 houses or other facilities (`houses') with 1355 beds. 37 houses with a total of 757 beds were randomly selected and participated in the study. 28 of these were in the City of Yarra from a list of 61 houses, and 9 were selected in Boroondara from 19 houses. 27 selected houses (with 322 beds) had less than 20 beds, 8 houses (with 272 beds) had 68 Disability, homelessness and social relationships among people living with psychosis in Australia

20 to 49 beds, and 2 houses (with 163 beds) had more than 50 beds. From the total sample of 757 beds (Table B1.1), 348 screens were collected (46.0% of the total), of which 164 (47.1%) were positive and 184 (52.9%) were negative. Of the 409 beds not screened, 117 people (15.5% of the total of 757 beds) refused to participate, 132 (17.4%) were not contacted after three attempts, and 160 (21.1%) did not meet the criteria for screening (i.e. they were too old, could not speak English, had an intellectual disability or provided insufficient details). This meant that of the 597 beds that met study criteria, 58.3% were screened. Table B1.1 Sampling results and overview of `case-finding'

Beds/places All in Eligible sample Classification Crisis shelters Rooming/boarding houses SRS Marginal accommodation total Drop-ins2 Grand total 83 555 119 757 570 1327 75 472 50 597 570 1167 45 262 41 348 150 498 23 111 30 164 65 229 15 62 10 87 25 112 13 59 10 82 24 106 Screens All +VE Interviews All +VE1

1 A positive ICD10 psychotic disorder is here defined as any non-zero ICD10 value that does not explicitly exclude psychosis. 2 Numbers of `drop-in' clients are estimates, based on average reported daily attendance. Participation levels fluctuate from day to day. Also, the same person may have visited a number of the drop-in centres during the census month; once screened at one service, they were not screened again at the next, although they would still appear on the books of each service. The overall figure of 570 does not take into account this possible overlap.

Compiling the sampling frame for drop-in centres and other non-residential disability support agencies

A list of services in the catchment area was compiled with assistance from outreach staff in SVMHS and other local informants, and with reference to directories of non-government organisations, such as the Directory of Catholic Social Services. Fourteen agencies were listed, and all were approached about the study. Ten agreed to participate; the others were concerned about jeopardising their relationship with their clients, who may be sensitive to workers from a clinical setting.

Sampling results in drop-in centres and other nonresidential disability support agencies

The estimated overall number of participants in the 10 agencies on an average day was 570. Of those, 150 were screened (26%), among whom 65 (43%) screened positive (see Table B1.1). A significant number of people (175; 31%) did not fulfil the screening criteria, that is they were too old, non English speaking, or had an intellectual disability significant enough to prevent understanding of the study and participation. Eighty-three (15%) refused to participate. A further 62 people (11%) were screened but lived outside the catchment area. 100 people (18%) remain unaccounted, although the figure of 570 is necessarily an imprecise estimate. Participation levels would fluctuate from day to day, and the interviewers were not at each centre every day during Disability, homelessness and social relationships among people living with psychosis in Australia 69

the study period of one month. In addition, the same person may have visited a number of the drop-in centres; once screened at one service, they were not screened again at the next. The overall estimate of 570 did not take into account this possible overlap in attendance across agencies by the same individuals. If an individual screened at a drop-in centre reported living in one of the houses selected for screening in the study we transferred the screen to the marginal accommodation category.

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