Abstract
Housing has been identified internationally as a major need for people with schizophrenia [1]. Controversy exists regarding different models of supported accommodation and their limitations. The linear model of housing, where the individual moves from one facility to another as their needs change, has been described as discriminatory and failing to appreciate rehabilitation principles in working with people who have serious mental illness [2]. A number of studies demonstrate that the majority of mental health consumers prefer to live independently with flexible support services [3, 4]. The capacity of a person with schizophrenia to achieve this is influenced by the extent of their disability. Systemic determinants are also critical, including the availability of low rental housing, the staffing levels and ethos of their local community mental health services.
In New Zealand supported accommodation is predominantly purchased using the linear model. Only 6–7% of people using mental health services live in supported accommodation and there is a high degree of housing instability. From a random survey of 2516 mental health consumers over three months, 33% had at least one change of housing and 9% had three or more changes [5].
The debate over housing for people with schizophrenia lacks any detailed analysis of the experiences of the individuals’ involved. People with persistent psychotic symptoms encounter a number of barriers regarding their involvement in decisions concerning their housing needs. Formal thought disorder, delusions and hallucinations constitute significant barriers to effective communication. Negative symptoms and cognitive problems compromise an individual's ability to identify advocacy services or utilize political mechanisms to improve their living conditions. Because people with long-standing psychotic disorders have often had experiences of adversity, including imprisonment or homelessness, their responses to structured questions may be skewed by low expectations [6].
The use of qualitative methodology in researching psychotic people's experience of housing can overcome assumptions made in quantitative surveys. It also provides a framework in which people who have difficulties in communicating may have more opportunity to respond, especially to semi-structured questions. Qualitative research is particularly useful as a tool to explore the relationship between individual behaviour and social environment. Considering the value of this methodology the lack of literature using qualitative research to explore housing experiences constitutes a major gap in our knowledge.
A notable exception is a triangulated study using both qualitative and quantitative methodology, which evaluated the residents’ experiences of supported housing in seven facilities in Canada [7]. The authors described residents’ experiences of support, control, quality of life and personal growth, and the relationship between these factors. Open-ended questions were asked and transcriptions made of the responses. However, the lack of adherence to specific methodology led the authors to using the responses merely to substantiate information gathered by quantitative means.
The present study uses grounded theory methodology because it carries a mandate to develop a social theory that is grounded in individual's experience. Strauss and Glaser, two American sociologists, developed grounded theory methodology in the late 1960s from the theoretical base of symbolic interactionism, which suggests that people create their own realities from a continuous process of negotiation and renegotiation with others [8]. This methodology has a rigorous process of data collection and analysis that guarantees validity and trustworthiness [9].
Grounded theory has been used very effectively in other studies with people who have persistent psychotic symptoms. Lorencz undertook a grounded theory based study on the perceptions of men with chronic schizophrenia prior to discharge from hospital [10]. The four men she interviewed had persistent auditory hallucinations, and examples of formal thought disorder were evident in the transcripts. Her work resulted in a theory that is concerned with ‘becoming ordinary’. It is relevant to note that she dealt with psychotic experiences in the interview by repeating phrases, asking for clarification and integrating delusional material within her analytic categories without differentiating between psychotic and non-psychotic experiences.
Another study using grounded theory study explored natural cognitive coping strategies in schizophrenia [11]. The authors proposed a concept of ‘coping self talk’, which they derived from nine lower level analytic categories but did not extend these findings to the stage of theory generation.
The study reported in this paper will add to the small body of literature that has used grounded theory methodology for people with psychotic symptoms. In particular it will discuss the impact of persistent psychosis on this methodology. It will also show the importance of housing in the subjective experiences of people living in high care facilities.
Methods
All residents with a diagnosis of schizophrenia living in registered accommodation with 24-hour staffing in South and Central Auckland were eligible to take part in this study. Those who were acutely unwell or who did not speak English were excluded from the study. Participants were identified from the staff at local community mental health centres. Community mental health records were reviewed to confirm their diagnosis.
Thirteen participants were interviewed from 12 different residential facilities. Ten were male and three were female. Duration in their residence ranged from three months to 10 years. All were treated with antipsychotic medication.
Initially, open sampling was used and no specific demographic features or length of stay were sought when obtaining participants. As the study progressed different types of theoretical sampling were employed. People whose demographic characteristics were not represented were sought to see what aspects of the developing theory needed expansion or modification. Theoretical sampling was also used to modify the core questions used in the interview based on the responses that were received.
The first interview was audiotaped and open-ended questions were asked to encourage responses in a narrative form. The questions related to their experiences of different housing situations. Interviews were transcribed then open coding was used to generate preliminary categories. Participants were then interviewed again to discuss the interview transcripts and the main themes that arose.
Open coding involved reading the transcriptions several times and underlining common or salient themes. These were then given a title, either a term used by the participant or one generated by the researcher. Quotations illustrating these categories were cut using scissors and pasted onto a separate sheet and referenced on alphabetical index cards. At the end of this process 37 initial categories were generated.
This was followed by axial coding, which involved developing an understanding the properties of the categories and how they related to each other. Diagrams were drawn articulating statements of such relationships. It became apparent that some of the 37 initial categories were subsets of more generic categories. The relative importance of each initial category was determined by the weight it was given by the participants, the relative frequency of its emergence throughout progressive interviews, and its uniqueness (i.e. its inability to be accounted for by another category). Categories were coded according to whether they were predominantly a strategy, condition or consequence and the relationships between them were explored by grouping them in various possible arrangements. From axial coding seven major categories emerged, all of which had interlinking, yet distinct, features. It was this process that led to the emergent themes reported in this paper.
Selective coding was a subsequent process of identifying the central concept that made sense of the relationships between the seven major categories. It sought to identify a unifying concept that was apparent in all seven categories and, furthermore, in the various links between the categories. In reading the transcripts this central concept could also explain variations in individual experience. Selective coding relies on drawing diagrams that enable the analyst to integrate material at an increasingly abstract level.
Results
The result section will illustrate the central concept: ‘a way to survive’. It will show aspects of survival in all seven major categories generated by the analysis, as well as exploring aspects of survival itself. Quotations from the transcript show how the theory was grounded as well as the capacity of this form of research to provide insights into the world of the participants.
All participants had narratives of survival ranging from the life threatening to the mundane. Survival embraces the apparent contradiction of supported accommodation: it was perceived as something that helped them survive, yet the accommodation itself provided challenges to be survived.
A way to survive
The following quotations from three participants illustrate key aspects of survival.
‘In all those places I knew a way to survive… I've been very, very lucky. I'm just one of these lucky people who take it in the right way.’ ‘I'm going to change my life when I get out of here… So I can survive, I don't want to die.’ ‘I just muck about, muck about trying to stay alive. Experiences of survival permeated the dialogue, ranging from accounts of violence to stories of the stress of chronic privation and persistent psychotic symptoms. Four of the seven major categories pertained to aspects of the participants’ lives that required survival strategies – these were psychosis, alienation, basic life stuff and health services. Three of the categories referred to the survival strategies themselves; religion (or God), family and identity.
What had to be survived
Surviving psychosis
Every participant spontaneously discussed their psychotic experiences regardless of the attribution they gave them. The psychotic symptoms were also a key part of the interview process because of their impact on effective communication. The affective experience of psychosis was one of fear and distress punctuated by boredom.
Two participants dealt with recurrent psychotic symptoms that were based on actual past threats to their physical safety: a boarding house fire and a car accident. Five participants made determined suicide attempts in response to their psychotic symptoms. ‘I had a panic attack one night, it suddenly happened out of nowhere. I just went nuts I know I just went nuts. They gave me medication, I had a smoke sitting there going puff, puff, puff. Next thing Jeff's out on the road trying to kill himself in front of a car.’
Surviving alienation
The participants described a wide range of experiences that alienated them from their families and friends and prevented them from fulfilling a number of roles in the community. Alienation was a direct result of the intrapsychic experience of psychosis and its consequent treatment, an important component of this was the physical alienation of being treated in hospital or living in residential facilities.
‘That's the thing about schizophrenia, it leaves you alone emotionally and alone physically… I got really lonely. People my own age left me alone… the trouble with schizophrenia was loneliness.’ ‘I was left lonely for so long it hurt, mental pain… I used to think what's wrong with me.’ The following quotation is from a woman who had been staying at supported accommodation for one year without receiving any psychiatric treatment. As a consequence of her withdrawal, residential staff had overlooked her need for psychiatric assessment. ‘Well at times we're left alone for quite a long time during the day and I find it quite lonely sometimes… I had schizophrenia and I was sort of a lonely person and I was quite withdrawn, really quite withdrawn some days on my own and quite lonely… I think it's part of the illness spending lonely periods on my own.’
Survival and basic life stuff
All participants had experiences of deprivation with respect to shelter, food acquisition and physical safety. A number of participants had been homeless and/or in prison. They spoke with gratitude about the supported accommodation providing the essentials of day to day living but still resented their inability to earn ‘real money’. They resented compulsory chores, prohibition on sex, and restricted access to food. The following quotations illustrate what the respondents perceived to be both punitive and infantilising aspects of supported accommodation.
‘I like it after being in prison for awhile… it's better to be in one of these corrective places than to go to jail.’ ‘If staff members find someone in your room and you are wide awake, and they know you are sleeping with them, they give you notice of two weeks.’ ‘Oh if you didn't want to do them [the chores] you just had to do them, like if you didn't want to do them they threatened to expel you from the house… and most of us wanted to be expelled.’
Surviving health services
Hospitals, medication and both inpatient and outpatient staff were perceived as things to be survived rather than services that facilitated survival. Participants’ felt that being told psychotic experiences were ‘not real’ invalidated their suffering. At the same time they were being treated as if they were ‘a schizophrenic’ on the basis of these same symptoms.
‘They can be ignorant, they can treat me like a little child, they can treat me like a spastic, they can treat me like a nothing. They treat me like a different sort of person, different, boring old Jack.’ ‘Even my psychiatrist he said, “You do understand it's a voice don't you”… then they go “Your voices aren't real, you know that don't you?” They are bloody real.’ ‘I was in hospital at the time, they put me on haloperidol and in a side room for three weeks… It was absolute hell.’
Survival strategies
Strategies of survival were found in participants religious beliefs, their connections with their family and their sense of an individual identity.
Religion/God
For a number of participants the omnipotence of God was the only thing more powerful than the psychosis. Their beliefs provided a sense of hope and meaning in the face of despair.
‘You know as well as I do that God can intervene in any situation if you give him time. Why worry about anything? God can stop it. No matter how many fires, no matter how many.’ ‘I know I can do things through God; that strengthens me.’ ‘Love is trying to break through to help people be themselves because of love and God and the relationship we have with God.’
Family
Every participant spontaneously discussed their family and their desire to be closer to them. Alienation from families had multiple causes including the impact of psychosis, separation because of hospitalization and subsequent residence in supported accommodation, poverty and the death or disability of elderly parents. Commonly the participants’ parents were the only visitors who knew them prior to the onset of their illness. The death of parents left some of the participants without family, as they had been unable to form families of their own. Community psychiatric records contained letters from parents expressing confusion and dissatisfaction regarding their child's treatment and descriptions of participants before the onset of their illness.
‘I love Dad and I think it's good if I can spend more time with my family you know.’ ‘My Mother's house… is not much to look at. It's actually a cracker bomb palace if you know what I mean? It's actually the bombiest [sic] place, but I just want to be with Mum, to live with Mum.’
Identity
Asserting a unique individual identity was a psychological strategy for taking control and surviving psychosis and its impact. A strong sense of identity was also established through identification with family or religion. You might notice that I'm very individual. I know that. I, myself, it's up to me, this person behind the face here. I know it's a bit fleshy, a bit funny, but that person that I am behind this face is responsible for all kinds of freedom. You see freedom's vital for that person but that freedom can only be obtained from that person. You can't get freedom from someone else, not really. Freedom is within your life, within your aura at the time, no matter how sick you get, no matter how good you feel.
The second extract is from the participant with the longest history of institutional care. He frequently questioned his identity and in contrast to the others seemed to gain a sense of purpose by identifying as ‘a schizophrenic’.
‘Do I have schizophrenia, do you see me as one as a psychiatrist? So I can be proud that in a big time country like New Zealand I've got schizophrenia.’
Discussion
The principle finding of this study is that people with schizophrenia living in supported accommodation have a wide range of experiences that can be conceptualized within the overall rubric of ‘survival’. Survival was a central concept that linked a range of data ranging from the intrapsychic experience of psychosis to the social impact of poverty and homelessness.
The importance of understanding survival as an integral aspect of the experience of people with severe schizophrenia cannot be overestimated. Psychotic symptoms, whether identified as such or not, were responsible for significant distress and disability. Ruocchio's first person account of psychosis describes pain and suffering in a similar manner to the participants in this research [12]. My greatest fear is this brain of mine, which torments me in times of psychosis, always threatens me, and seems to always be laughing at me, scorning my vulnerability. The worse thing imaginable is to be terrified of one's own mind, the very matter that controls all we are and all we do and feel.
As with their description of psychosis, alienation was described as painful. Participants were aware of the losses associated with being extruded from society into a marginal position. They described a sense of being ‘left behind’ from peers, an inability to engage in paid employment or to enter into sexual relationships.
In a study that looked at the experiences of women with schizophrenia by means of focus group discussions, marginalization emerged as a theme [13]. Analysis of transcripts demonstrated a sense of loss, loneliness and isolation. This was tied up with the impact of the illness on the participants’ self-perception as women. The effect of social and economic dislocation was also an important finding in this research.
In a phenomenological study of people with schizophrenia Corin et al. identified estrangement as a fundamental experience [14]. This was interpreted as a protective aspect of the individual's function and it was argued that the implementation of generic rehabilitation plans in the absence of understanding the meaning of estrangement was potentially damaging.
A major concern for participants in this current study was the difficulties they had in communicating with health professionals. Simple reassurance that phenomenon such as hallucinations were ‘not real’ was experienced as demeaning. The ability to implement treatment with the person experiencing psychotic symptoms requires that clinicians can discuss the world of psychosis in a truthful yet respectful manner.
Identified strategies for survival
Strategies for surviving psychotic illness are likely to vary from individual to individual. However, this research identified major areas that should be considered in working with people with schizophrenia. Family was not only important for the participants’ social contacts; families also provided a sense of identity and were sources of love and connection.
People with psychosis may have their spiritual beliefs intertwined or separate from their psychosis. Some participants found that their faith reduced their distress at persistent psychosis and gave them a sense of hope and meaning. This suggests that in forming a therapeutic alliance with someone with religious beliefs and mental illness it is crucial to understand the potentially healing role that these beliefs can provide.
Having a sense of personal identity was another crucial aspect of survival identified in this study. The difficulties in maintaining this occurred on several levels. Intrusive and persistent psychotic symptoms challenged the control that participants had over their own mental experiences. They also impeded the patients ability to plan for the future and develop an adult identity on the basis of vocational achievement or adult relationships. Restriction on where they could live and what they owned also inhibited a sense of personal identity.
Davidson and Strauss also wrote about the role of a sense of self in recovery from severe mental illness [15]. They performed semi-structured interviews over a 2–3 year period with people who had either major psychotic or affective illness. A key process in recovery for the participants was the acceptance of the illness as separate from themselves. This allowed endurance of, and distancing from, the symptoms they experienced. In their study and this current research, family and health professionals have an important role in facilitating this process.
Process of qualitative research with participants who have a psychotic illness
A number of issues related to the process of qualitative research with people who have schizophrenia emerged in the course of this research. The duration of interviews had to be flexible. Some participants became thought disordered as time progressed. Delusional thoughts also emerged during the interview. More effective communication occurred when questions were kept short. Sometimes questions that were too abstract needed to be reframed or abandoned.
Various responses to thought disordered participants were possible. Listening with no interruption resulted in increasingly unstructured dialogue as there were no cues to help the person return to the topic. By contrast poorly timed interruptions could lead to the participant feeling unheard and invalidated. Sometimes the participant would be asked if they could try and explain things more simply.
During the analysis of the transcripts, whether to include or exclude material markedly influenced by psychosis became an important consideration. It was inconsistent with inductive methods to exclude the psychotic content, but it was important to avoid over interpretation. The presence of psychotic symptoms in the extracts, reported in this paper, and the possible ambiguity in understanding resulting from this, mirrors the participants’ difficulties in communicating with people.
Conclusions
This research has demonstrated the value of a qualitative approach to research on housing for people with schizophrenia. Most of the research in this field has been quantitative and as such as lacked an appreciation of the perspective of the residents. People with schizophrenia living in supported accommodation have a range of survival experiences. Their quality of life relates to difficulties with psychosis, alienation and social deprivation and how these are balanced with a sense of self in relation to their families and often God. In this study, health services were another aspect of life to be endured. Improving services for people with schizophrenia is dependent on an understanding of the complex interplay of the intrapsychic, interpersonal and social challenges involved.
Footnotes
Acknowledgements
I thank Simon Hatcher and Josephine Stanton for their help. I am also grateful to the Schizophrenia Fellowship for a grant supporting this research.