Abstract
Deinstitutionalisation has occurred in the developed world to the extent that today most people with an enduring mental illness live in the community. Beginning gradually, the deinstitutionalisation movement in Australia gathered momentum after the 1960s. The population of psychiatric inpatients in Australia has declined from 281 per 100 000 in the early 1960s to 40 per 100 000 in 1992, an 86% reduction [1]. Institutional care has been replaced by care in the community.
Studies of the needs of mentally ill people in Australia and overseas largely focus upon issues of homelessness, vagrancy, poverty, added family burden and the increased inappropriate involvement of mentally ill people in the criminal justice system [1–5]. Negative media portrayals of neglected mentally ill people tortured by symptoms, wandering city streets, along with sensationalist headlines, such as ‘Killer inmates fleeing hospital’ leave many in the community anxious about deinstitutionalisation [6]. However, it has been shown that, with proper planning and ongoing adequate resources (both human and financial), many people with a long-term mental illness, including those with a long history of institutional care, can both be effectively treated and live successfully outside of hospital [7–10].
In Australia, one of the positive aspects of hospital downsizing and closure has been the increased opportunities for former long-stay patients to regain membership in the community [9]. This is possible as long as adequate resources from such closures are substantially retained and transferred to integrated, community-based mental health services, including local inpatient services and adequate provision for those who need long-term supervised residential care.
However, with increasing pressure on limited health resources, it is necessary to demonstrate the effectiveness of policy implementation through appropriate research. More qualitative research taking an ethnographic approach has recently been undertaken in Australia adding a new perspective to research in mental health arenas [11–13].
This paper focuses on the qualitative component of the Deinstitutionalisation project showing that former long-stay psychiatric patients can maintain successful community tenure with an enhanced quality of life. It is linked with the other two papers in this trio which examine the quantitative and economic components of the project [14,15].
The qualitative component fundamentally differs from the other research models insofar as ethnography, the practice of anthropology, ‘produces a different type of knowledge … than that produced by positivist clinical science’ [11]. Positivist science draws upon standardised techniques which can be ‘repeated reliably by a number of researchers in varying contexts’ where the outcome of such research is a ‘form of knowledge known as “facts”, which are attributed objectivity because they are quantifiable, replicable and lie beyond the interpretive discretion of the individual researcher’ [11]. Conversely, ethnographic research views and actively interacts with subjects within the context of their social world, while relying upon reflection and interpretation of the researchers as part of the analytic process. Therefore, central to good ethnographic inquiry, is rigour, integrity and sensitivity on behalf of the researcher to ensure that interpretations of observations and interviews or conversations, mirrors correctly the participant's view of their social world.
Method
Anthropology aims to reveal and describe. Through intensive day-to-day interactions, the ethnographer establishes trust and rapport and attempts to ‘understand the common-sense meanings and experiences of the participants of a social system’ [16]. To this end, a subjective, phenomenological perspective was adopted to allow study participants to speak for themselves, that is, to give them a ‘voice’.
‘There is today in social science circles, a simple and persistent belief that knowledge about people is available simply by asking’ [16]. Data obtained in this way, however, fail to tell the complete story. Often what people verbally report about themselves is incongruent with the way they act or how others interpret their behaviours.
People with a severe mental illness are often difficult to interview due to the presence of symptoms, their sometimes withdrawn state and poor verbal skills, as was found with some of our study participants, who were almost mute. Detailed observations help bridge this gap [12].
For this project, usual anthropological methodology was employed consisting of participant observational fieldwork, open-ended and semistructured interviews, life history taking and perusal of written records. Participant observation requires the researcher to be involved in the daily lives of study participants, while at the same time maintaining some detachment to facilitate accurate observation. The extent of acting in a participating or observational role varies according to particular situations, however, generally one continually fluctuates between both.
Fieldwork occurred on a daily basis over a 2.5-year period. Approximately 8 months was spent at the hospital campuses from where the patients were to be discharged. At this stage, time was spent getting to know those who would be selected for possible discharge. Daily routines, roles, general atmospheres and changes were documented. A further 2 years was spent post-discharge divided between the four community residential facilities in the four subareas of the Northern Sydney Area Health Service. The four residential facilities included three larger-style group homes, each housing 10 people in single or double bedrooms, and one block of four three-bedroom units. All were located in middle to upper-middle class areas.
The ethnographer participated in and observed many aspects of daily life through involvement within the residences and further afield at local shops, larger malls, cafes, hotels, on outings and in attendance at rehabilitation resource centre programs. Simply being with the study participants for extended periods of time in their own environment, provided data that were both relevant and at times unexpected.
Data collection comprised daily meticulous and copious field note taking (in excess of 1500 pages), audiotaped interviews and summaries of case records. Unlike quantitative methodology where hypotheses are set a priori, ethnographic themes are generated from observations occurring throughout the study period. Emerging patterns provide the basis for thematic analysis. The cyclical nature of qualitative research is such that, upon reflection and interpretation of developing themes, the researcher can go back to the field to follow up emerging ideas and check with participants that interpretations reflect their own beliefs and ideas. Themes are then collapsed into subcategories, indexed and cross-referenced with people, places and times; some computer-assisted analysis was used to facilitate this. (The computer package initially used was Kwalitan developed by the University of Nijmegen, The Netherlands but eventually it proved cumbersome for the task).
All qualitative ethnographic data were collected, stored and analysed separately from the quantitative data (in the previous paper [14]) by a separate researcher. The researchers met at research meetings and inevitably crossed paths at residential sites. Methodologically, the complete isolation of research officers from each other when both empirical and ethnographic studies are being done in parallel is hardly practical and not required, as we were not trying to establish interrater reliability. The essential issue of independence of observations was that each researcher was deemed to have rigorously followed their own research methodology as endorsed, respectively, by their empirical and ethnographic peers. Independent observations in an empirical sense between the two substudies were never a stated or appropriate strategy in these circumstances as the methodologies were so different.
The longitudinal nature of the study demonstrated that over 2 years the residents showed slow, but positive change. Table 1 provides details of the qualitative findings presented in this paper which are compared and linked with the clinical results, and complement them. In the Table, ‘residents’ refers to the discharged long-term clients, ‘staff’ refers to hospital staff in the hospital years column and community staff in the other sections, ‘community peers’ refers to mentally ill clients of the community health service who did not have a long-term history of institutionalisation, while ‘community members’ encompasses people living in the local area.
Common Responses and Observations During Fieldwork
Results
Qualitative findings: discussed in comparison with clinical results
Prior to discharge, most of the residents had spent a major portion of their adult life (from 2 to 43 years) in what Goffman described as a ‘total institution’ [17]. Within the hospital, which had many features of a total institution, the residents were somewhat isolated from mainstream society, all their needs were met under one umbrella organisation, life was governed by routine and external control with little variation from one month to the next. Residents were content enough and had largely accepted their situation, but had little opportunity to challenge themselves with the everyday tasks of independent living.
Upon discharge this changed dramatically. Suddenly they were confronted with the pressures of readjusting to the outside world and the need to learn new skills. Clinically, it had been expected that in the first few weeks post-discharge, there would be a deterioration in patients mental state. However, this did not occur as the residents were very much supported in the early transition period by dedicated and often familiar staff who helped them to manage symptoms. Residents also developed creative ways of dealing with symptoms, such as drowning out ‘voices’ with headphones, and telling each other not to listen to their ‘unreal voices’.
In terms of living skills, residents previously sheltered from the need to perform everyday tasks (such as shopping, cooking, cleaning, banking, managing money and using public transport) were now encouraged to learn these skills. In the community, the residents also had to find to new ways of developing relationships with each other to avoid friction within the households. Prior to discharge, in a group session at the hospital, residents were taught some of the skills that would be required for the outside world. Interestingly, one resident suggested that the main thing they would have to learn was to, ‘not fight and beat each other up’ when they wanted things, such as cigarettes. The need to change behaviours in order to adapt to a new set of social rules was evident. Spiro [18], explained that ‘since humans are highly plastic, what an individual must learn in order to participate in the social system is not at all identical with what he can learn, for what he is taught represents but one alternative among a large number of behavioural patterns which he is potentially capable of learning, or at least, thinking of learning’.
Acquisition of new skills and appropriate ways of behaving was not always an easy task for the residents. Not long after discharge, staff in the community who had not worked in the hospital lamented the highly dependent nature of the residents, they had expected that the residents would progress at a faster rate. Other service users of the wider mental health service also stigmatised the new residents by viewing them as more disabled or lower functioning than themselves. In the early days post-discharge they would often avoid the new residents, sigh or grimace with eyes rolled back, as the new residents attempted to participate in activities. Some hospital staff also believed that long-term institutionalised residents could not cope outside of hospital. One harshly queried if the researcher really thought community living could ‘resuscitate the dead!’ Residents also questioned their own ability to cope, with comments such as, ‘Can I survive out there?’ or ‘Will I fail and end up back where I started from?’
Nevertheless, most of the residents did develop the skills necessary to maintain community tenure. They also relinquished some of their old institutional behaviours such as hurriedly eating meals and clearing tables. Conversational skills of a less functional nature also developed as residents grew interested in each other's daily ventures. One resident summed up what he thought was different: ‘Well, we don't yell and scream at each other as much any more'.
Between 3 and 9 months post-discharge, some social behaviours deteriorated. This period was fraught with instability and friction at all the houses. The initial delight and enthusiasm immediately following discharge waned after about 3 months. Exacerbation of symptoms along with aggressive and violent behaviour from some of the residents unsettled others in the community facilities. Recognising their individual rights, those on the receiving end of aggressive incidents voiced their rejection of inappropriate behaviours and disruptive symptoms. Such behaviours were less tolerated than they had been in the hospital setting. Some examples: ‘Why should I have to live with them? They are all bloody schizos’, ‘Why should I have to be with all these criminally insane people, I don't want to live with a lot of mad people?' and ‘It's hard enough living out here without all that racket'.
Residents were also encouraged to be more actively involved outside of their homes, such as in the community and at rehabilitation resource centre programs. This challenge created some stress and many queried their own ability to cope, with comments such as, ‘It's tough out here, really tough, I want to go back, at least in hospital I know what to do' or ‘I'm so mad they should just lock me up'.
Most of the residents who returned to hospital for long-term care (five of the seven) did so during this period. Upon their return to hospital there was a sense of relief for the remaining residents and staff. Vacant positions in the community were filled with other long-stay patients. However, these new residents were more carefully assessed by community staff prior to transfer, regarding their suitability for fitting in with existing residents. Social behaviours subsequently improved by the 2-year follow up, reflecting more stable household configurations, consolidation of links into the wider community and a greater confidence by staff and residents that they could weather difficult periods.
In terms of mood state, it was not until the 2-year follow up that there was significant improvement in depressive affect. It was also not until about the middle of the second year post-discharge, that the ethnographer noticed subtle changes in the residents. They seemed more comfortable, were well accepted and relaxed within the local community and in the area mental health service programs. Perhaps it takes at least this long for residents to develop a sense of belonging and see a real future in a new environment.
In terms of quality of life, the qualitative findings support the empirical findings outlined in the previous paper. Residents demonstrated happiness through their laughter and jokes and through a strongly expressed preference for their current lifestyle. Maintaining and enhancing quality of life is difficult for people affected by a prolonged mental illness who are generally ‘unemployed, unmarried, suffer from residual symptoms and disability, have limited social relations, remain distant from their families and rely on disability funds for financial support’ [19]. All of the subjects in this study fitted this description to some extent; all had had a persistent, ongoing mental illness with significant but varying degrees of disability since their late teens and were clearly not going to make any magical recovery. Nevertheless, the importance of freedom, the ability to make choices, having some control over their future and the dignity afforded to them as everyday citizens in mainstream society, was something the residents valued greatly.
‘Freedom’ was cited by most residents as the best thing about living outside of hospital. While often manifested in general terms such as: ‘I've got more freedom now', the residents also cited specific freedoms. Some examples: ‘I can sleep in later, I don't get told to get out of bed as much', ‘I can do what I want to do’, ‘I have more time to work things out’, ‘I don't run away any more because I don't have to', ‘We can drink tea and coffee whenever we like’, ‘I can eat when I want to’ and ‘ It's my money and I can buy what I like and staff can't tell me what to buy'. Simply discovering previously unknown food items at the supermarket and being able to purchase these was an area of delight for some residents, as was experimenting with cooking. Shopping, even on a limited daily allowance (typically $5 per day) was something residents enjoyed, especially when they returned home to show others their bargains and purchases.
Periodically throughout the study period the residents were asked the basic question: ‘Where would you rather be?’ At the end of 2 years, all those remaining in the community expressed their preference to live outside of the hospital. Davidson
Conclusions
Carefully planned and adequately resourced deinstitutionalisation is effective. The challenge for mental health services is to find enduring but responsive solutions, without sacrificing underlying ideals surrounding quality of care.
Evaluation of policy implementation through comprehensive research is necessary to ensure that changes are effective from a clinical, economic and subjective client perspective. Qualitative research, and in particular the involvement of a lengthy field-work period, has limitations and advantages.
Limitations include a commitment from the researcher to follow it through to the end, as this type of research is time intensive. As well, access to the field needs to be maintained throughout. Working alone, the ethnographer requires an understanding and cultural sensitivity in regard to the area under study. Also in a scientific, medically oriented area, lack of legitimisation or value is accorded to the role of qualitative research and consequently obtaining funding can be difficult. In this study, data would have been enriched if it were possible for the ethnographer to live in on a 24-h basis, however, there were geographical (four residential facilities scattered over Sydney) and practical constraints. Also, an increased length of study would perhaps have highlighted more enduring changes. Generalisation of findings cannot be readily made to other areas as data is gathered from a particular context and, consequently, ethnography can be viewed as having a narrow or specific focus even though findings are more grounded and meaningful than some quantitative research outcomes. Nevertheless, findings about a particular group in society do have relevance to wider population groups and other researchers can adapt these to their own settings and populations. Reporting of findings sometimes has limitations insofar as the ethnographer, while acting as an advocate for participants, may uncover negative findings which are potentially harmful to the group. However, the researcher has a duty to report all findings and so ‘while findings must be accurate they must also be presented in sensitive ways’ [20].
The advantages of this type of research include the eliciting of contextual data which plays an ‘important role in improving the cultural specificity and validity of other survey instruments’ [20]. The methodology enables difficult-to-interview populations to have their views considered as well as the tapping of non-verbal data. Relevant, but unexpected, findings emerge from social situations which open up further areas for inquiry. Collaborative links between anthropologists, psychiatrists and clinical researchers are developing and the coexistence of research methodologies can only enhance the understanding of complex problems. The present studies demonstrate an integration of findings which are both consistent and complementary.
Acknowledgements
Thanks go to the residents and staff for their participation in the study, and also to Richard Basham (Department of Anthropology, University of Sydney) for his supervision of the ethnographic process. Funding was provided by the Australian Commonwealth Department of Family and Community Services – Research and Development Advisory Committee (RADGAC) and the Northern Sydney Area Health Services (NSAHS).