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)
Disability, homelessness and social relationships among people living with psychosis in Australia
iii
iv
Disability, homelessness and social relationships among people living with psychosis in Australia
Contents
Acknowledgments
viii
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
xi
xi
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xiv
1. Disability, homelessness and social relationships - an introduction
1.1
1.2
1.3
1.4
1.5
1.6
1.7
1.8
1
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
1
1
2
3
4
4
5
6
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
Disability, homelessness and social relationships among people living with psychosis in Australia
7
9
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33
v
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
vi
Disability, homelessness and social relationships among people living with psychosis in Australia
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37
38
39
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42
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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
Disability, homelessness and social relationships among people living with psychosis in Australia
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vii
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
Technical Advisory Committee:
Monique Decortis
Andrew Green
Naomi Harris
Chris Hill
Maggie McIntosh
Susan Roberts
Rosemary Thomas
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.
viii
Disability, homelessness and social relationships among people living with psychosis in Australia
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.
x
Disability, homelessness and social relationships among people living with psychosis in Australia
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.
Disability, homelessness and social relationships among people living with psychosis in Australia
xiii
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
environmental factors
activity
participation
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
4
Disability, homelessness and social relationships among people living with psychosis in Australia
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)
environmental factors
(accommodation, social networks)
participation
(employment)
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).
Disability, homelessness and social relationships among people living with psychosis in Australia
9
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
Multiple episodes with
good recovery
Categories used in data presentation
Single
episode
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
Disability, homelessness and social relationships among people living with psychosis in Australia
15
1.6
Married/defacto
19.8
6.9
48.8
1.9
Trade or other certificate
Undergraduate/postgraduate
Left school, no qualifications
Other
88.7
60.9
Government pension
Disability Support Pension
Source of income
22.6
Completed secondary school
Education – Highest qualification
7.3
Divorced/separated/widowed
248
n
91.1
<=34
Age (years)
78.2
90.3
3.1
44.2
12.1
20.0
20.6
12.7
8.5
78.8
165
35-44
83.2
86.7
2.8
50.9
10.4
27.2
8.7
30.6
15.6
53.8
173
>=45
Males (n=586)
72.4
88.6
2.6
48.1
9.4
22.0
17.9
13.3
10.1
76.6
586
Total
53.7
81.0
2.5
42.1
9.1
20.7
25.6
14.0
17.4
68.6
121
<=34
Socio-demographics by gender and age (per cent)
Single, never married
Marital status
Table 2.1
61.3
75.5
4.7
43.4
20.8
17.9
13.2
20.8
33.0
46.2
106
35-44
68.9
82.6
2.3
53.3
15.6
13.8
15.0
50.9
24.6
24.6
167
>=45
Females (n=394)
62.2
80.2
3.0
47.2
15.0
17.0
17.8
31.5
24.6
43.9
394
Total
58.5
86.2
2.1
46.6
7.6
20.1
23.6
5.7
10.6
83.7
369
<=34
71.6
84.5
3.7
43.9
15.5
19.2
17.7
15.9
18.1
66.1
271
35-44
76.2
84.7
2.6
52.1
12.9
20.6
11.8
40.6
20.0
39.4
340
>=45
Total (n=980)
68.3
85.2
2.7
47.8
11.6
20.0
17.9
20.6
15.9
63.5
980
Total
16
Disability, homelessness and social relationships among people living with psychosis in Australia
53.7
131
51.1
Obvious/severe dysfunction in
occupational performance
Those in household (n)
Obvious/severe dysfunction in
household activities
51.3
78
29.0
50.5
283
49.2
195
63.7
2.9
3.3
0.3
18.8
11.0
581
Total
39.8
83
48.5
66
44.2
10.8
10.8
20.8
13.3
120
<=34
56.7
60
45.6
57
46.7
3.8
20.0
22.9
6.7
105
35-44
48.3
89
33.9
56
59.3
6.6
5.4
12.0
11.4
5.4
167
>=45
Females (n=394)
47.4
232
43.0
179
51.3
2.8
6.6
13.8
17.3
8.2
392
Total
46.7
214
51.7
174
52.5
7.4
4.1
23.0
13.1
366
<=34
52.2
134
48.7
113
58.4
3.3
7.8
20.4
10.0
269
35-44
49.7
167
32.2
87
65.7
8.3
2.7
5.9
11.2
6.2
338
>=45
Total (n=980)
* Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.
48.6
74
51.8
31
108
Those in main occupation* (n)
56
71.9
65.9
56.5
None of above
3.0
11.1
7.0
171
>=45
9.9
5.7
Studying
18.9
12.2
164
35-44
Retired
0.8
24.0
Part-time work outside the home
Housework
13.0
246
n
Full-time work outside the home
Main ccupation
<=34
Age (years)
Males (n=586)
Table 2.2 Work, study, home duties by gender and age (per cent)
49.1
515
46.3
374
58.7
2.9
4.6
5.8
18.2
9.9
973
Total
Disability, homelessness and social relationships among people living with psychosis in Australia
17
2.2
3.3
76.4
56
4.0
2.8
54.0
110
56.4
142
43.0
44.8
29
44.8
61.6
37.5
112
4.7
13.4
276
15.1
24.2
252
chronic
illness
24.5
20.8
3.8
5.7
1.9
43.4
29
53
single multiple
episode episodes
50.5
49.2
283
11.0
18.8
0.3
3.3
2.9
63.7
195
581
Total
21.1
23.8
19
31.0
21
13.8
37.9
3.4
13.8
29
43.7
47.3
135
11.0
21.1
19.7
8.3
3.7
36.2
129
218
60.3
37.9
78
2.8
7.6
6.9
2.8
2.1
77.9
29
145
multiple chronic
single
episode episodes illness
Females (n=394)
47.4
43.0
232
8.2
17.3
13.8
6.6
2.8
51.3
179
392
Total
35.4
36.0
48
20.7
26.8
3.7
8.5
1.2
39.0
50
82
single
episode
43.3
51.5
277
13.2
22.8
9.1
6.0
3.2
45.7
239
470
61.1
37.6
190
4.0
11.4
2.4
2.4
2.9
77.0
85
421
chronic
illness
Total (n=980)
multiple
episodes
* Dysfunction in occupational performance was self-defined and hence does not necessarily correspond to the categorisation of occupation above.
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
n
Course of disorder
Males (n=586)
Work, study, home duties by gender and course of disorder (per cent)
Main occupation
Table 2.3
49.1
46.3
515
9.9
18.2
5.8
4.6
2.9
58.7
374
973
Total
18
Disability, homelessness and social relationships among people living with psychosis in Australia
1.8
7.0
3.8
2.5
12
24 98
24
29
12
23 162 31
45
40.0 66.7 43.5 48.1 48.4 62.2
10
75.0 75.0 58.3 40.8 45.8 55.2
8
57.9 40.7 56.9 68.9 57.9 59.5
2.3
2.3
50.5
283
49.2
195
63.7
2.9
23.5
17
35.7
14
42.3
3.8
3.8
11.5
15.4
23.1
26
1
51.9
27
48.1
27
27.5
2.5
10.0
22.5
32.5
5.0
40
2
6.6
167
4
4.7
43
5
3.0
6.0
0.0
9.3
9.0 20.9
52
22
15
55.9 48.5 53.3
34 99
46.4 44.2 40.9
28
42.3 65.3 51.2
3.8
3.8
17.3
23.1 10.2 14.0
9.6
52
3
Females (n=394)
42.5
40
38.9
36
40.6
3.1
7.8
14.1
25.0
9.4
64
6
47.4
232
43.0
179
51.3
2.8
6.6
13.8
17.3
8.2
392
67
2
39
39
29.6 56.4
27
50.0 56.4
22
48.9 32.8
4.4 6.0
4.4 9.0
6.7 13.4
15.6 26.9
20.0 11.9
45
Total 1
8.3
508
4
143
6
4.0 12.6
100
5
2.6
3.5
1.0
8.0
3.1 10.0
3.5
4.9
6.3
150
46
65
261
46
85
50.9 48.3 50.0 52.9
57
51.9 42.0 43.5 46.2
52
50.0 67.7 55.0 51.0
2.7
3.6
8.2
21.8 14.8 22.0 21.7
13.6
110
3
Total (980)
*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.
Obvious/severe dysfunction in
household activities
Those in household (n)
Obvious/severe dysfunction in
occupational performance
Those in main occupation (n) **
None of above
5.3 11.1 1.7
Retired
7.4 3.4
3.3
5.3
0.0
Studying
1.8
0.3
0.3
0.0
Housework
0.0 0.0
18.8
581
Total
Part-time work outside the home 15.8 18.5 20.7 17.0 28.1 19.0
79
6
11.0
57
5
3.5 15.2
9.1
4
Full-time work outside the home 15.8 22.2 17.2
27
n 19
3
341
2
Diagnosis* 1
Males (586)
Work, study, home duties by gender and diagnosis (per cent)
58
Table 2.4
49.1
515
46.3
374
58.7
2.9
4.6
5.8
18.2
9.9
973
Total
Disability, homelessness and social relationships among people living with psychosis in Australia
19
56.5
43.1
206
20.9
33.2
24.2
29.8
44.0
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
Obvious/severe dysfunction in outside interests
248
n
58.9
<=34
Age (years)
37.6
33.9
20.1
28.3
23.1
121
46.7
64.2
66.1
165
35-44
43.4
39.9
11.6
31.4
16.4
128
43.4
64.7
65.9
173
>=45
Males (n=586)
42.0
34.0
19.3
31.3
20.2
455
44.2
61.1
63.0
586
Total
29.8
20.7
34.2
32.5
14.3
112
28.1
51.2
50.4
121
<=34
43.4
21.7
31.1
28.2
26.4
87
24.5
53.8
48.1
106
35-44
35.9
26.9
24.4
23.2
23.4
141
38.3
52.1
58.7
167
>=45
Females (n=394)
36.0
23.6
29.2
27.4
21.2
340
31.5
52.3
53.3
394
Total
369
39.3
26.8
27.5
33.0
18.6
318
38.2
54.7
39.9
29.2
24.4
28.2
24.5
208
38.0
60.1
59.0
271
35-44
340
>=45
39.7
33.5
17.9
27.4
20.1
269
40.9
58.5
62.4
Total (n=980)
<=34
56.1
Relationships with others, self care and outside interests by gender and age (per cent)
Obvious/severe dysfunction in socialising
Table 2.5
39.6
29.8
23.3
29.7
20.6
795
39.1
57.6
59.1
980
Total
20
Disability, homelessness and social relationships among people living with psychosis in Australia
192
21.4
33.3
37.7
39
19.2
20.8
24.5
Those in relationship (n)
Obvious/severe dysfunction in sexual relationships 23.1
36.5
No intimate relationship/s
Social deterioration in last 12 months
Social improvement in last 12 months
Obvious/severe dysfunction in self care
Obvious/severe dysfunction in outside interests
29.5
23.2
23.0
31.5
53.1
43.4
53.9
Obvious/severe social withdrawal
n
56.6
46.2
15.9
28.4
18.8
224
57.0
71.7
73.8
single multiple chronic
episode episodes illness
53
254
279
49.1
Course of disorder
Males (n=586)
42.0
34.0
19.3
31.3
20.2
455
44.2
61.1
63.0
586
Total
16.7
10.0
30.0
26.7
13.0
23
20.0
46.7
40.0
single
episode
30
30.1
16.4
34.3
26.9
27.3
183
24.7
45.2
47.5
multiple
episodes
219
49.0
37.2
21.3
28.4
14.2
134
44.1
64.1
64.8
chronic
illness
145
Females (n=394)
36.0
23.6
29.2
27.4
21.2
340
31.5
52.3
53.3
394
Total
21.7
16.9
23.2
32.9
19.4
62
31.3
44.6
45.8
29.8
20.1
28.2
30.3
24.3
375
28.3
49.5
51.0
chronic
illness
424
54.0
43.2
17.7
28.4
17.0
358
52.6
69.1
70.8
Total (n=980)
single
multiple
episode episodes
83
473
Relationships with others, self care and outside interests by gender and course of disorder (per cent)
Obvious/severe dysfunction in socialising
Table 2.6
39.6
29.8
23.3
29.7
20.6
795
39.1
57.6
59.1
980
Total
Disability, homelessness and social relationships among people living with psychosis in Australia
21
342
5
58
81
6
586
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
Obvious/severe dysfunction in self care
Obvious/severe dysfunction in outside
interests
*1= no psychosis
2= psychotic depression
3= bipolar mania
4= schizophrenia
5=schizo-affective
6=other psychosis
10 18.5 22.4 20.6 17.5 15.4 19.3
455
Social improvement in last 12 months
62
35 48.1 34.5 28.7 38.6 28.2 31.3
42
Social deterioration in last 12 months
47 274
15.4 23.5 17.0 15.0 35.7 35.5 20.2
13 17
Obvious/severe dysfunction in sexual
relationships
Those in relationship (n)
40
2
52
3
168
4
6
44 64
5
Females (n=394)
394
2
46 67
Total 1
4
5
110 510 102
3
Total (980)
37
44
148
35
58
340
31
54
91 422
77
26.9 25.0 25.0 42.3 36.4 39.1 36.0 34.8 29.9 24.5 44.7 38.2
7.7 20.0 21.2 29.2 27.3 17.2 23.6 17.4 25.4 20.0 35.3 29.4
36.0 35.0 26.9 24.8 33.3 33.3 29.2 24.4 28.4 24.5 22.0 24.2
16.0 22.5 34.6 27.9 35.7 22.2 27.4 24.4 32.8 34.5 28.4 37.4
16.7 21.6 36.4 14.9 31.4 20.7 21.2 16.1 22.2 26.4 14.9 33.8
18
19.2 30.0 15.4 44.6 27.3 18.8 31.5 30.4 35.8 24.5 48.4 30.4
42.3 65.0 50.0 55.4 56.8 39.1 52.3 47.8 73.1 50.9 59.6 59.8
42.3 50.0 50.0 57.7 65.9 42.2 53.3 54.3 61.2 50.9 61.2 66.7
26
Total 1
45.0 44.4 32.8 50.3 32.8 34.6 44.2
58
4
No intimate relationship/s
27
3
55.0 85.2 51.7 61.7 62.1 58.0 61.1
2
Obvious/severe social withdrawal
20
1
70.0 77.8 51.7 62.9 67.2 61.7 63.0
n
Diagnosis*
Males (586)
Relationships with others, self care and outside interests by gender and diagnosis (per cent)
Obvious/severe dysfunction in socialising
Table 2.7
40.0
24.1
23.4
25.5
28.3
120
27.6
49.7
53.1
145
6
39.6
29.8
23.3
29.7
20.6
795
39.1
57.6
59.1
980
Total
22
Disability, homelessness and social relationships among people living with psychosis in Australia
51.2
43.5
39.5
36.7
28.3
35.1
19.8
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
Rehabilitation/day program
248
<=34
91.9
n
Age (years)
18.8
31.6
23.6
41.2
38.8
38.8
46.6
90.9
165
35-44
Males (n=586)
17.3
26.6
26.0
30.1
28.3
24.9
37.0
85.0
173
>=45
18.8
31.5
26.3
36.0
36.0
36.7
45.8
89.6
586
Total
20.7
33.9
26.4
33.9
40.5
52.9
61.1
92.5
121
<=34
17.9
29.2
21.7
30.2
37.7
41.5
56.6
91.5
106
19.8
26.4
22.8
26.4
27.6
35.9
37.1
94.6
167
35-44 >=45
Females (n=394)
19.5
29.4
23.6
29.7
34.3
42.7
49.7
93.1
394
Total
People who received the following services by age and gender (per cent)
Medicine prescription
Table 2.8
20.1
34.7
27.6
35.8
39.8
46.7
54.5
92.1
369
<=34
18.5
30.6
22.9
36.9
38.4
39.9
50.6
91.1
271
35-44
18.5
26.5
24.4
28.3
28.0
30.3
37.0
89.7
340
>=45
Total (n=980)
19.1
30.7
25.2
33.5
35.3
39.1
47.3
91.0
980
Total
Disability, homelessness and social relationships among people living with psychosis in Australia
23
58.5
35.9
41.5
30.2
28.3
41.5
11.3
Therapy, counselling
Help to improve work skills or time-use
Guidance in managing housing and financial matters
Self care
Social support
Rehabilitation/day program
53
Provision of mental health information
n
single
episode
88.7
Course of disorder
23.6
35.1
25.6
36.2
38.9
42.9
54.7
91.3
254
15.8
26.5
26.5
37.0
32.3
31.2
35.2
88.2
279
18.8
31.5
26.3
36.0
36.0
36.7
45.8
89.6
586
multiple chronic Total
episodes illness
Males (n=586)
10.0
20.0
16.7
30.0
30.0
46.7
46.7
96.7
30
21.0
29.2
22.4
23.7
36.9
47.1
56.6
95.9
219
single
multiple
episode episodes
Females (n=394)
19.3
31.7
26.9
38.7
31.0
35.2
40.0
88.3
145
chronic
illness
People who received the following services by gender and course of disorder (per cent)
Medicine prescription
Table 2.9
19.5
29.4
23.6
29.7
34.3
42.7
49.7
93.1
394
Total
10.8
33.7
24.1
30.1
37.4
39.8
54.2
91.5
83
22.4
32.4
24.1
30.4
38.0
44.8
55.6
93.5
473
17.0
28.3
26.6
37.5
31.9
32.6
36.8
88.2
424
single multiple chronic
episode episodes illness
Total (n=980)
19.1
30.7
25.2
33.5
35.3
39.1
47.3
91.0
980
Total
Disability, homelessness and social relationships among people living with psychosis in Australia
24
30.0 51.8 32.8
25.0 14.8 27.6
40.0 29.6 17.2
40.0 33.3 32.7
25.0 22.2 24.1
Help to improve work skills or time use
Guidance in managing housing and
financial matters
Self care
Social support
Rehabilitation/day program
*1= no psychosis
2= psychotic depression
3= bipolar, mania
4= schizophrenia
5=schizo-affective
6=other psychosis
25.0 44.4 46.5
Therapy, counselling
58
3
65.0 51.8 43.1
27
2
Provision of mental health information
20
1
80.0 92.6 91.4
n
Diagnosis*
15.8
30.7
25.7
38.0
33.9
33.4
44.7
88.6
342
4
27.6
31.1
22.4
46.5
39.7
39.7
43.1
91.3
58
5
Males (586)
586
Total
18.5 18.8
32.1 31.5
33.4 26.3
35.8 36.0
40.7 36.0
42.0 36.7
46.9 45.8
92.5 89.6
81
6
40
2
52
3
168
4
44
5
64
6
394
15.4 25.0 15.4 17.9 31.8 17.2 19.5
19.2 32.5 28.8 33.4 38.6 15.6 29.4
26.9 25.0 21.1 25.0 27.3 17.2 23.6
38.4 25.0 19.2 33.9 31.8 25.0 29.7
26.9 45.0 28.8 35.1 45.4 25.0 34.3
46.1 65.0 42.3 34.5 52.3 42.2 42.7
30.8 57.5 61.5 44.0 70.5 43.8 49.7
67
2
110
3
510
4
6
102 145
5
Total (980)
980
Total
19.6 23.9 20.0 16.5 29.4 17.9 19.1
28.2 32.9 31.0 31.6 34.4 24.9 30.7
32.6 26.9 19.1 25.5 24.5 26.2 25.2
32.6 20.9 23.6 36.6 40.2 31.0 33.5
28.2 47.8 31.0 34.3 42.1 33.8 35.3
37.0 56.7 44.6 33.7 45.1 42.1 39.1
45.6 55.2 51.8 44.5 54.9 45.5 47.3
84.8 95.5 94.6 89.8 90.2 93.1 91.0
46
Total 1
88.5 97.5 98.0 92.2 88.6 93.7 93.1
26
1
Females (n=394)
People who received the following services by gender and diagnosis, per cent
Medicine prescription
Table 2.10
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)
Accommodation type
Institutional
n
Supported
Marginal
Rented
home
Own
home
60
48
233
266
262
70.0
77.1
71.2
51.1
54.2
Single, never married
83.3
87.5
73.4
57.5
55.3
Married/de facto
16.7
10.4
22.3
23.7
18.7
0
2.1
4.3
18.8
26.0
13.3
25.0
12.9
23.7
18.7
Trade or other certificate
6.7
14.6
14.6
21.8
23.7
Undergraduate/postgraduate
6.7
2.1
6.9
13.9
18.7
6.3
2.1
1.9
1.1
73.3
50.0
62.2
38.0
36.6
Government pension
91.7
97.9
95.3
87.6
68.3
Disability Support Pension
90.0
91.7
79.4
69.9
49.6
Male
Marital status
Divorced/separated/widowed
Education (highest qualification)
Highest qualification
Completed secondary school
Other
Left school, no qualifications
Source of income
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
60
48
233
266
262
83.3
62.5
60.1
43.6
42.0
Schizo-affective disorder
5.0
12.5
6.9
15.4
9.5
Bipolar mania
0.0
10.4
7.7
13.9
12.6
Other psychosis
5.0
10.4
15.9
14.3
19.1
Depressive psychosis
1.7
2.1
5.6
7.5
10.7
Did not meet criteria for psychosis
5.0
2.1
3.9
5.3
6.1
–
–
7.3
9.8
13.0
Multiple episodes good/partial recovery
11.9
50.0
33.0
59.8
59.2
Chronic course, little recovery
88.3
50.0
59.7
30.5
27.9
n
Rented
home
Own
home
Diagnosis
Schizophrenia
Course of disorder
Single episode
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
Disability, homelessness and social relationships among people living with psychosis in Australia
35
Accommodation type
2.1
Number not known
8.3
10.4
6.3
8.3
2.1
10.4
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
3.3
5.0
Heroin
LSD
5.0
Tranquillisers
1.7
5.0
Amphetamines
Cocaine
23.3
Cannabis
Illicit drug use ever
4.5 (7.8)
45.8
1-2 standard drinks (low risk)
Mean number of drinks (SD)
8.3
No use of alcohol (low risk)
Alcohol use on a typical day
23.8 (17.3)
62.5
Smoking more than 20 cigarettes per day
Mean number of cigarettes smoked per day (SD)
35.4
Smoking 11-20 cigarettes per day
80.0
–
60
Smoking 1-10 cigarettes per day
n
Institutional
2.6
57.9
23.7
15.8
79.2
10.4
4.2
6.3
4.2
10.4
37.5
3.1 (3.8)
9.3
2.3
7.0
2.3
4.7
11.6
58.1
4.7
20.9 (17.0)
48
Supported
Substance use by accommodation type (per cent)
Person does smoke
Cigarette use
Table 3.3
5.1
53.4
23.9
17.6
75.5
17.2
6.9
12.9
12.0
16.3
39.1
8.5 (13.3)
9.7
15.9
6.2
4.6
9.2
17.4
31.3
5.6
19.6 (17.2)
233
Marginal
0.6
56.2
31.5
11.8
66.9
12.4
6.8
9.8
7.1
15.0
40.6
4.8 (5.7)
1.7
7.5
6.3
5.9
11.3
21..8
37.7
7.9
17.7 (16.7)
266
Rented home
1.3
57.9
22.4
18.4
58.0
8.4
5.0
6.9
6.1
10.7
34.0
4.7 (6.6)
5.3
7.7
4.9
1.6
12.6
19.9
42.7
5.3
14.9 (16.9)
262
Own home
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)
Accommodation type
Institutional
Supported
Marginal
Rented
home
Own
home
n
60
48
233
266
262
Full-time work outside the home
Part-time work outside the home
Housework
Studying
Retired
None of above
0
1.7
0
0
5.1
93.2
4.2
16.7
0
6.3
2.1
70.8
6.1
13.9
1.3
0.9
2.2
75.8
12.9
20.8
8.7
6.4
2.7
48.5
14.2
24.2
8.1
5.8
3.5
44.2
Those in main occupation*(n)
1
13
51
127
138
Obvious/severe dysfunction
in occupational performance
0
38.5
45.1
44.1
46.4
Those in household (n)
0
34
89
128
203
Obvious/severe dysfunction
in household activities
0
41.2
51.7
43.8
46.3
No opportunity to watch favourite
television program with others
100
45.9
75.6
60.9
37.0
No opportunity to play games
100
83.3
84.6
75.2
69.9
No opportunity to make or
answer telephone calls
28.4
12.5
21.0
3.4
3.5
No opportunity to drive a
motor vehicle
96.6
79.2
85.9
57.9
41.6
No opportunity to ask people for a
favour such as being given a lift
53.3
37.5
42.5
33.5
30.6
Did not /no opportunity to
bet on a lottery
80.0
75.0
71.3
62.0
56.5
Main occupation
Household activities
Everyday living tasks in the
last month
*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)
Accommodation type
Institutional
n
Supported
Marginal
Rented
home
Own home
60
48
233
266
262
Obvious/severe dysfunction in
socialising
81.7
43.8
66.1
53.0
51.1
Obvious/severe social withdrawal
73.3
47.9
60.5
56.4
50.4
No intimate relationship(s)
70.0
33.3
44.2
31.6
31.7
23.3
10.4
13.7
6.8
8.0
8.3
4.2
8.2
2.6
3.1
Needs and wants more friends
51.7
41.7
42.9
46.6
45.0
Has as many as needs
35.0
52.1
48.5
50.4
51.1
Social deterioration in last 12 months
21.4
18.8
31.9
26.3
26.9
Social improvement in last 12 months
16.1
31.3
18.8
28.2
25.4
Obvious/severe dysfunction in
self care
60.0
27.1
37.8
22.9
20.6
Obvious/severe dysfunction in
outside interests
71.7
43.8
49.4
32.3
27.1
Availability of friends
No availability of friends
Perceived need for friends
Doesn’t need good friends
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)
Accommodation type
60
48
233
Rented
home
266
In-patient admission
81.7
29.2
31.3
42.1
38.5
Involuntary admission
50.0
12.5
18.0
22.2
10.7
Community mental health
11.9
62.5
45.5
65.8
60.1
3.3
0.0
2.6
1.9
1.1
Emergency department
15.0
37.5
36.9
36.8
30.5
GP
30.0
83.3
85.4
90.2
86.6
n
Drug and alcohol unit
38
Institutional
Supported
Marginal
Own home
262
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)
Accommodation type
60
48
233
Rented
home
266
Victim of violence in past
12 months
21.7
10.4
26.2
15.8
8.4
Not feeling safe
13.3
14.6
21.9
13.5
10.7
Unmet need for police help
8.3
12.5
17.6
13.2
8.4
Arrested in last 12 months
10.0
10.4
16.7
9.1
5.3
Charged in last 12 months
6.7
8.4
14.1
7.1
3.5
13.3
10.4
18.9
14.6
15.6
Occasions of drug overdose and
not seeking help last 12 months
6.7
4.2
9.9
6.0
6.9
Dissatisfied with independence
65.5
40.4
35.4
30.2
35.2
Dissatisfied with life as a whole
63.4
52.1
52.5
52.7
50.0
n
Deliberate self harm/overdose
last 12 months
40
Institutional
Supported
Marginal
Own home
262
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
All known Houses in Houses in All known Total +ve
houses
sample sample
houses**
1355
757
597
1053.1
348 164
Number
interviewed
Total
+ve
87
82
Lifetime
prevalence
42.1%
se
.024
CI
37.4%, 46.9%
*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.
48
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)
Variable (%)
Males (n=82)
Females (n=24)
Total (n=106)**
Age (median years)
38
41
39
Australian born
79
88
82
Left school 16 years or earlier
54
50
54
Completed secondary school
22
21
22
Post-school qualification*
20
13
18
85
54
78
2
13
5
12
33
17
68
92
74
9
13
9
95
100
95
Education
Marital status
Single, never married
Married or de facto (6 months or more)
Separated, divorced or widowed
Employed
Before onset of illness
At time of interview
Receiving government benefits or pensions
*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)
Males
(n=82)
Life-time
Females
(n=24)
Total*
(n=106)
Males
(n=61)
Present state
Females
(n=17)
Total*
(n=78)
Depressive psychosis
5
21
9
5
6
5
Bipolar, mania
7
4
7
2
6
3
Schizophrenia
44
50
45
54
65
56
Schizoaffective
16
17
16
16
12
15
Other psychosis
28
8
24
23
12
21
*Since women were over-sampled for interview, findings for the total should be interpreted with care.
Disability, homelessness and social relationships among people living with psychosis in Australia
49
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
Substance use among people living in marginal accommodation (per cent)
Variable (%)
Currently smoking tobacco
Males (n=82)
Females (n=24)
Total (n=106)*
89
71
85
Cannabis
67
54
64
Amphetamines
37
17
32
LSD
30
13
27
Heroin
29
8
25
Cocaine
16
0
13
Tranquillisers
28
4
23
Cannabis
35
17
32
Amphetamines
18
8
17
Heroin
12
4
11
Tranquillisers
12
4
11
Alcohol
45
21
40
Cannabis
32
21
30
Any other
29
13
26
Substance use ever
Daily use past year
Lifetime abuse/dependence
*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)
Variable (%)
Males (n=82)
Females (n=24)
Total (n=106)*
Proportion not living in a household
74
92
77
Living in household but with dysfunction in every day tasks
57
50
58
Obvious/severe dysfunction in socialising
66
71
68
Obvious/severe social withdrawal
64
79
68
No intimate relationship/s
38
42
38
18
17
18
Doesn’t need good friends
11
8
10
Needs and wants more friends
49
58
51
Has as many as needs
39
33
38
Obvious/severe dysfunction in self care
39
29
37
Obvious/severe dysfunction outside interests
35
42
38
Availability of friends
No availability of friends
Perceived need for friends
*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.
Disability, homelessness and social relationships among people living with psychosis in Australia
51
Table 4.6
Service use among people living in marginal accommodation (per cent)
Variable (%)
Males (n=82)
Females (n=24)
Total (n=106)*
Service use in past year
Any use of specialist mental health services (MHS)
82
83
82
Specialist MHS – inpatient admissions
37
25
33
Specialist MHS – involuntary inpatient admissions
20
13
18
0
4
1
Community (specialist) MHS
82
79
81
Case manager in community (specialist) MHS
51
54
52
GP
80
88
82
Emergency department
52
50
52
7
4
7
Specialist MHS – inpatient admissions only
Drug and alcohol unit
*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
Quality of life among people living in marginal accommodation (per cent)
Variable (%)
Males (n=82)
Females (n=24)
Total (n=106)*
Feel unsafe in present locality
24
17
23
Victim of violence in past year
30
33
32
Unable to access police/legal assistance as needed in past year
27
13
23
Arrested in last 12 months
29
4
24
Charged in last 12 months
22
0
18
Deliberate self harm/overdose in last 12 months
30
29
30
Occasions of drug overdose and not seeking help in last 12 months
18
21
20
Dissatisfied with independence
50
38
49
Dissatisfied with life as a whole
72
63
70
*Since women were over-sampled for interview, findings for the total should be interpreted with care.
52
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)
Socially
isolated
Social network
n
Friends
dominated
network
Family
dominated
network
Socially
integrated
66
112
143
647
Gender – male
72.7
63.4
63.6
56.9
Age (median years)
43.5
43.5
38
38
Single, never married
69.7
64.3
62.9
62.4
Married/defacto
21.2
25.9
20.3
19.9
9.1
9.8
16.8
17.6
Completed secondary school
22.7
17.0
17.5
17.5
Trade or other certificate
13.6
15.2
20.3
21.6
3.0
8.9
5.6
14.5
Marital status
Divorced/separated/widowed
Education
Highest qualification
Undergraduate/postgraduate
Other
Left school, no qualifications
1.8
2.3
57.6
56.3
56.6
43.0
Living alone
74.2
72.3
48.3
41.9
Institutional accommodation
20.4
8.7
6.8
5.0
7.4
6.8
5.1
5.3
Marginal accommodation
51.9
44.7
20.3
22.6
Rented home
14.8
31.1
32.2
32.0
5.6
8.7
35.6
35.2
Government pension
93.9
92.0
92.3
81.6
Disability Support Pension
77.3
81.3
71.3
64.1
Living arrangements
Supported housing
Own/family home
Source of income
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%).
Disability, homelessness and social relationships among people living with psychosis in Australia
57
Table 5.2
Clinical characteristics by social networks (per cent)
Socially
isolated
Social network
n
66
Friends
dominated
network
112
Family
dominated
network
143
Socially
integrated
647
Diagnosis
Schizophrenia
51.5
55.4
52.4
51.0
Schizo-affective disorder
12.1
8.9
9.8
10.5
Bipolar mania
13.6
8.9
11.9
11.4
Other psychosis
13.6
13.4
16.8
15.0
Depressive psychosis
4.5
8.0
5.6
7.1
Did not meet criteria for psychosis
4.5
5.4
3.5
4.9
3.0
8.0
5.6
9.9
Multiple episodes good/partial recovery
33.3
42.9
44.8
52.1
Chronic illness
63.6
49.1
49.7
38.0
Course of disorder
Single episode
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%).
58
Disability, homelessness and social relationships among people living with psychosis in Australia
Table 5.3
Work, study, home duties by social network (per cent)
Social network
Friends
dominated
network
Family
dominated
network
66
112
143
647
Full-time work outside the home
4.6
3.6
7.0
12.1
Part-time work outside the home
3.1
9.8
12.7
22.6
Housework
0.0
2.7
8.5
6.2
Studying
1.5
2.7
6.3
5.0
Retired
4.6
8.0
2.8
1.9
86.2
73.2
62.7
52.2
7
21
48
296
28.6
38.1
58.3
45.6
19
34
77
382
63.2
61.8
70.1
43.2
n
Socially
isolated
Socially
integrated
Main occupation
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
* 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.
Disability, homelessness and social relationships among people living with psychosis in Australia
59
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
Friends
dominated
network
Family
dominated
network
Socially
integrated
66
112
143
647
Obvious/severe dysfunction in socialising
86.4
64.3
81.8
49.8
Obvious/severe social withdrawal
83.3
61.6
83.2
48.1
No intimate relationship/s
66.7
41.1
53.8
33.1
Doesn’t need good friends
27.3
3.6
14.0
1.1
Needs and wants more friends
51.5
45.5
58.7
41.7
Social deterioration in last 12 months
52.5
33.0
37.1
25.4
Social improvement in last 12 months
6.6
11.9
20.0
27.8
Obvious/severe dysfunction in self care
50.0
34.8
46.9
22.6
Obvious/severe dysfunction in outside interests
53.0
48.2
49.0
34.0
Need for friends
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:
60
Disability, homelessness and social relationships among people living with psychosis in Australia
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.
Disability, homelessness and social relationships among people living with psychosis in Australia
61
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.
62
Disability, homelessness and social relationships among people living with psychosis in Australia
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
Inter-rater reliability
Items
Intra-class correlation
Participation in household activities
.94*
Socialising
.90*
Social withdrawal
.88*
Quality of interpersonal relationships
.86*
Intimate relationships
.36
Sexual relationships
.19
Occupational performance
.67*
Self-care
.94*
Interests and information
.94*
Satisfaction with independence
.99*
Satisfaction with life
.99*
*
p<.01
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)
DIP-DIS 1tems#
WHOQOL-BREF ITEMS
Physical health
Psychological
Socialising
-0.30**
Social withdrawal
-0.30**
Sexual relationships
-0.30*
Social relationships Environment
Satisfaction with independence
-0.34**
-0.35**
-0.49**
-0.45**
Satisfaction with life
-0.47**
-0.53**
-0.53**
-0.44**
Summated score of DIP-DIS
-0.42**
-0.52**
-0.51**
-0.53**
# 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.
Disability, homelessness and social relationships among people living with psychosis in Australia
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.
66
Disability, homelessness and social relationships among people living with psychosis in Australia
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
Screens
All +VE
Interviews
All
+VE1
Classification
Crisis shelters
83
75
45
23
15
13
Rooming/boarding houses
555
472
262
111
62
59
SRS
119
50
41
30
10
10
757
597
348
164
87
82
570
570
150
65
25
24
1327
1167
498
229
112
106
Marginal accommodation total
Drop-ins
2
Grand total
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.
70
Disability, homelessness and social relationships among people living with psychosis in Australia
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