Consumer/Survivor Stories of Empowerment
and Recovery in the Context of Supported Housing
Shannon D. Parkinson, BA,MA
Department of Psychology
Wilfrid Laurier University
Geoffrey Nelson, PhD
Community Developer Professor
Department of Psychology
Wilfrid Laurier University
Parkinson, S (2003) Consumer/Survivor Stories of Empowerment and Recovery in the
Context of Supported Housing. International Journal of Psychosocial Rehabilitation. 7, 103-118.
Acknowledgements: We would like to thank the staff and residents of Options in Support and Housing, CMHA/ Winnipeg Branch and Waterloo Regional Homes for Mental Health for their participation in this research and John Lord, Joanna Ochocka, Rich Janzen, and Sylvia Cornell who were researchers for the project with Waterloo Regional Homes for Mental Health. Part of the research on which this paper is based was completed for an M.A. thesis in Community Psychology at Wilfrid Laurier University by the first author under the supervision of the second author. Direct requests for reprints of this article to Shannon Parkinson, 414 Victor Street, Winnipeg, MB, Canada R3G 1P9, or Geoffrey Nelson, Department of Psychology, Wilfrid Laurier University, Waterloo, ON, Canada N2L 3C5.
Key Words: Empowerment, Recovery, Consumer/survivor stories, Supported Housing Consumer/Survivor Stories of Empowerment and Recovery in the Context of Supported Housing
AbstractWe examined the stories of empowerment and recovery of five psychiatric consumer/survivors who participated in supported housing programs. Interviews with these five participants and members of their social networks were used to gather qualitative data on their lives prior to supported housing, their experiences with supported housing, and the impacts/changes that they experienced through supported housing. Changes in personal empowerment, community integration, and access to valued resources were reported in each of the five stories. The qualities of the supported housing programs that were reported to contribute to individualsí empowerment and recovery included individualized and consumer-controlled support, diverse sources of support, and assistance with accessing basic resources. The implications of these findings for research and practice were discussed.
IntroductionIn the past decade, there have been two emerging areas of inquiry in community mental health concerning adults with serious mental health problems: (a) empowerment and recovery and (b) supported housing. While these two bodies of research have developed independently of one another, they are both guided by a paradigm that emphasizes the values of empowerment, community integration, and social justice and de-emphasizes the traditional medicalized view of "mental illness" and "psychiatric patients" (Carling, 1995; Nelson, Lord, & Ochocka, 2001). Our aim in this paper is to tie these two areas together by studying consumer/survivor empowerment and recovery in the context of supported housing. We begin by providing a brief overview of these two areas of research. For many years, the medical model emphasized the "chronic" nature of mental illness. However, the notion of chronicity has been challenged by recent research. Harding et al. (1987) followed up a sample of people who had been diagnosed with schizophrenia and admitted to the Vermont State Hospital in the 1950s. While the outcomes were quite variable, 20-25 years later, more than half the sample showed considerable improvement or recovery. With the accumulation of research on recovery (McGuire, 2000), the hopelessness of "chronicity" is yielding to a more hopeful view of "recovery," which Anthony (1990) has argued should be the guiding vision for the mental health system.
Consumer/Survivor Empowerment and Recovery
Recently, several qualitative studies have been undertaken to understand the processes of empowerment (Lord & Hutchison, 1993; Lucksted, 1998) and recovery (Baxter & Diehl, 1998; Smith, 2000; Kloos, 2001; Weaver Randall & Salem, 2001; Young & Ensing, 1999) of people with a history of serious mental health problems. But what are empowerment and recovery? Both of these concepts have been used to focus on change, growth, and improvement, and both emphasize the development of strengths, the process of change, and the importance of contextual factors in contributing to change. At the same time, however, the concepts of empowerment and recovery have had somewhat different emphases.
The term empowerment has an explicit focus on power and politics (Chamberlin, 1990) and is part of an alternative paradigm in community mental health that is guided by three core values: (a) individual empowerment, (b) community integration, and (c) access to valued resources (Nelson et al., 2001). The value of empowerment means a reversal of the traditional power imbalance that psychiatric consumer/survivors typically experience with mental health professionals, choice, control, skills, and self-esteem (Chamberlin, 1990, 1997; Lucksted, 1997). Second, empowerment theorists have argued that community integration is a part of empowerment, that the development of self occurs through relationships with other people and participation in typical community settings, not segregated service facilities (Lord & Hutchison, 1993). Third, access to valued resources, such as housing, employment, education, and income, is critical to the empowerment process. These three values suggest that empowerment is a multilevel construct, which includes individual, community-relational, and socio-economic resources (Rappaport, 1987).
Recovery, on the other hand, has been defined as "the development of new meaning and purpose in oneís life as one grows beyond the catastrophe of mental illness" and the redefinition of "attitudes, values, feelings, goals, and skill and/or roles" (Anthony, 1993, p. 19). The development of self, a reconstituted identity, finding meaning and purpose, and securing valued social roles are central aspects of the concept of recovery (Baxter & Diehl, 1998; Smith, 2000; Kloos, 2001; Weaver Randall & Salem, 2001; Young & Ensing, 1999). Like empowerment, recovery is viewed as both a process and an outcome with tangible changes in oneís life experiences and circumstances. However, recovery has been constructed more in terms of internal psychological qualities, whereas empowerment has been constructed more in terms of transactions between the individual and the environment.
In the 1990s, Carling (1993) proposed a new paradigm in housing for people with serious mental health problems called supported housing. This new approach stands in contrast to the traditional custodial and supportive housing approaches (Trainor, Morrell-Bellai, Ballantyne, & Boydell 1993; Parkinson, Nelson, & Horgan, 1999). In custodial housing, private owners operate what are often large residences and provide "care" services for profit; there is typically little emphasis on rehabilitation, empowerment, or community integration; these settings have an institutional character and a dependency orientation; and residents have little power in such settings and are often subjected to numerous rules and restrictions (Parkinson et al., 1999). Board-and-care, lodging, and nursing homes are examples of custodial housing.
Supportive housing developed as an alternative to this type of residential care. The concept of a residential continuum, ranging from high support group homes to more independent clustered apartments, is an integral part of supportive housing (Ridgway & Zipple, 1990b). As residents improve in their functioning, they progress through the continuum from highly staffed settings to more independent settings. In supportive housing, the housing and support are provided by a non-profit housing or mental health agency; there is an emphasis on rehabilitation by staff who are often present in the residence; and residents have little choice over where they live (Parkinson et al., 1999).
In contrast to these two approaches, supported housing emphasizes consumer/survivor choice and control and community integration in "normal" housing. In the supported housing approach, consumers are encouraged to "choose, get, and keep" the type of home that they want. The supported housing approach makes a shift from patient (custodial housing) or resident (supportive housing) to citizen with normal tenant and social roles and rights to community participation and valued resources (Carling, 1993; Ridgway & Zipple, 1990b). The supported housing approach is oriented to the strengths of the person supported (Ridgway and Zipple, 1990a). Staff operate from an attitude of "How can I best assist?," as opposed to "I know whatís best" (Pyke & Lowe, 1996, p. 8). Services are not forced on consumer/survivors if they do not believe they require them, and housing and support are "delinked" in supported housing, so that the individual can choose the type and amount of support that she or he desires, rather than having staff located in their home (Ridgway & Zipple, 1990a, 1990b). Supported housing is based on the values of empowerment, community integration, and access to valued resources, which also underlie the philosophy of empowerment described in the previous section.
Outcome studies of supported housing are relatively new (Parkinson et al., 1999; Ridgway & Rapp, 1997). The most common findings are that supported housing programs increase resident stability and independent living and decrease rates of homelessness (Depp, Dawkins, Seizer, Briggs, Howe, & Toth, 1986; Dixon, Friedman, & Lehman, 1993; Goldfinger, Schutt, Tolomiczenko, Seidman, Penk, Turner, & Caplan, 1999; Hurlburt, Wood, & Hough, 1996; Newman, Reschovsky, Kaneda, & Hendrick, 1994; Tsemberis & Eisenberg, 2001). Living in a home found through supported housing has also been shown to lead to reductions in hospitalization rates (Brown, Ridgway, Anthony, & Rogers, 1991; Burek, Toprac, & Olsen, 1996) and psychiatric symptoms (Dixon, Krauss, Myers, & Lehman, 1994).
However, there is considerably less research on supported housing that has examined quality of life and psychosocial outcomes for people who have access to supported housing. Depp et al. (1986) found no differences between supported housing participants and non-participants on measures of housing satisfaction, social network composition, and community integration, and Burek et al. (1996) found that the majority of participants in their study wanted but were unsuccessful in obtaining employment. Moreover, some studies have reported problems of social isolation of people who have accessed supported housing (Champney & Dzurec, 1992; Depp et al., 1986; Pulice, McCormick, & Dewees, 1995).
Much of the research in community mental health consists of outcome studies of different programs. While valuable, this type of research is limited in several important respects. First, when the program is in the foreground, the persons who participate in the research are reduced to aggregated outcome statistics. Second, outcome measures do not capture the richness of the many different experiences of the individuals under study, both related to the program and to other factors in their social environments. Third, with its emphasis on determining cause and effect, outcome research designs portray the individuals as passive, people who are influenced by the program, rather than as agents who actively cope with their life circumstances. In a recent article, Stephanie Riger (2001) has suggested that community research should overcome these limitations by pursuing research in which: (a) persons are in the foreground, not programs; (b) multiple dimensions of peopleís experiences are examined; and (c) the agency of individuals is emphasized.
Consumer/Survivor Empowerment and Recovery in the Context of Supported Housing
We believe that the new paradigm in community mental health, which emphasizes consumer/survivor empowerment and supported housing (Carling, 1995; Nelson et al., 2001), lends itself well to Rigerís (2001) suggestions about how to frame research questions. In this research we examined the following question: What role does supported housing play in consumer/survivorsí journeys of empowerment and recovery? While we did not formulate hypotheses for expected results, we were guided two analytic concepts: (a) the core values of the alternative paradigm (empowerment, community integration, and access to valued resources) and (b) time (life prior to supported housing, involvement in supported housing, and the impacts of supported housing). We wanted to know if consumer/survivors experienced changes or positive outcomes related to the three core values and how supported housing to contributed to such changes.
In this research, we engaged participants, asked questions, and utilized the findings in a manner consistent with the value of empowerment (Nelson, Ochocka, Griffin, & Lord, 1998). A story approach was chosen as the narrative has been credited for suggesting "new ways to become more sensitive to such voices" (Rappaport, 1995, p. 799). The accounts given are stories, limited by a beginning and end and containing linked information (Riessman, 1993). The definition of a narrative approach varies widely, but for this study, narrative is viewed as an individualís personal construction of reality (Riessman, 1993). This construction is a representation of a personís situation in a particular time and context, which are major influences on his/her interpretation. Therefore, the narrative is continuous and undergoes transitions, but the account given is that personís reality at that point in time and in that specific life context (Crossley, 2000; Rappaport, 1993, Riessman, 1993). Stories not only recount events, but they involve meaning as the storytellers understand the situations that they have experienced. The essential components of the narrative/story approach were to involve and understand the person as a whole, support the person to share the parts of his/her life that were meaningful to the process, and use the opportunity tp promote growth and understanding. While the stories offered an in-depth look at individual experiences, a thematic analysis allowed us to identify patterns across stories.
Two organizations which provide supported housing hosted the research. One is located in western Canada and one in southwestern Ontario. Both of these organizations had previously followed a supportive housing approach, but made a conscious change in their organizational philosophy, programs, and services in the early 1990s to move to a supported housing approach. Staff from both of these organizations were interested in the research and worked collaboratively with us to shape the research questions and approach.
We gathered five stories of consumer/survivor empowerment and recovery, three from the supported housing program in western Canada and two from the supported housing program in southwestern Ontario. The participants were three women and two men, all of whom had been involved in one of the supported housing programs for at least one year. The participants were purposefully selected to reflect diversity in terms of age, gender, and stage of recovery. An interview guide was used to conduct semi-structured, qualitative interviews with the participants. For the most part, individuals openly told their stories of involvement and the interview guide questions were used only to probe or clarify points of the stories. The interview guide was organized to gather information about what their lives were like prior to supported housing, experiences of their involvement in supported housing, and changes that they had experienced since entering supported housing (particularly in terms of empowerment, community integration, access to valued resources).
Participants and Interviews
In the western Canadian program, we also asked participants to identify a trusted friend or family member and a staff person who could provide information on their perceptions of the individualís story. In the program in southwestern Ontario, we asked the individuals to nominate a friend, a family member, a peer (someone with whom they worked or participated in some activity in the community), and a staff support worker. These interviews provided multiple perspectives on the consumer/survivorís experiences before and during their involvement in supported housing. This network approach was used to establish the trustworthiness of the data and to provide a rich story from the experiences of the individuals and key people in their lives. Each of the individuals gave their consent for us to contact these network members. We purposefully decided to emphasize depth over breadth in this research. While the stories of only five individuals were examined, they were studied in depth. Moreover, interviews with 19 different people were completed.
Each of the interviews was transcribed and given back to the participants for their review and comments prior to the data analysis. The perspectives of the participant and their network members were then integrated into a summary story, which was given to the five participants for their review and approval. The consumer/survivorís account formed the basis of the story with the other participantsí comments inserted to support the individualís account, provide additional information, or offer differing perspectives. The transcripts were also coded to provide an overall thematic analysis of the similarities across the five stories.
Due to space limitations, we present only one of the stories. This is followed by an overall thematic analysis of the five stories.
Stories and Themes
Prior to Anneís involvement with the supported housing program, she had several hospitalizations causing her to lose her housing and forcing her to deal with a stressful experience of moving into unsatisfactory accommodations. Anneís support network was comprised of a negative relationship with a hospital psychiatrist and her family, on which she was quite dependent despite conflict and poor communication. Anne experienced loneliness, and she felt used by friends.
When Anne came to the supported housing program she felt: "I didnít know how to look after myself. Well, I knew how to wash my clothes and stuff like that, but I guess I mean being able to stand up for myself, being assertive, communicative, things like that." Anne was described by network members as "quite hard on herself" and "it was hard for her to start stuff" and follow through. Anne desired education, but found school to be stressful and overwhelming.
When she first became involved in supported housing, Anne experienced many difficulties with her education which eventually led to her leaving school. A period of crisis, disappointment, suicidal thoughts, and disengagement in her recovery process ensued. Finally, Anne realized that she "had had enough garbage and I wasnít going to do it anymore."
Anne began working on self-esteem and communication. She joined a discussion group organized by the program, assisted with committees of the supported housing program, and volunteered in the community at a flexible and understanding organization. Anne believes that these experiences of connecting with other people and community settings improved her mental health.
Anne also took an empowerment program provided by the supported housing organization to work on assertiveness and learn to "stand on my own two feet." Becoming independent from her parents was part of that process, and her community worker assisted with resources, skill development, and advocacy. Although Anneís housing was stable while in the program, she was dissatisfied with her housing. Her community worker assisted her in finding the type of housing that she wanted. Due to income restrictions, Anne found housing that met many but not all of the qualities that she desired. Importantly, Anne managed the move independently and, over time, showed less of a need for staff support. Anneís community workerís final role was to link Anne with a supported employment program to fulfil her goal of obtaining employment. At the time Anne told her story, the staff worker was in touch with Anne only on "as needed" basis.
At the time of the interview, Anneís mental health was quite stable and positive. She had not been hospitalized in two to three years. She was still depressed at times, but she had developed coping skills and "she doesnít experience such severe ups and downs." Anne believed that her newly found skills and friendships accounted for her recovery. However, Anneís physical health was poor, and in addition to lack of income, poor health impeded her employment and activity.
Anneís friendships had improved as she picked friends "that are really friends. I guess Iíve learned what I want in a friend and what I donít want in a friend, setting limits." Through the program, Anne met some friends and a boyfriend who has become an important person in her life. Together they have found a lot of happiness but continue to struggle with their illnesses. Anne displayed increased self-esteem and communication skills in several situations, which has made her more independent by "learning to depend on myself, theyíve taught me that." Anneís mother commented that the program gave her control over her life and "the ability to stand on her own two feet. Sheís not as dependent anymore." Family relationships have improved as well.
The comparison of the five stores identified consistencies in consumer/survivor experiences before entering the program, while involved, and the impacts experienced. The cross-story analysis is examined in terms of the core values of the empowerment paradigm in mental health and time.
Comparison of Stories
Prior to Involvement in Supported Housing
Empowerment. Powerlessness was a theme that emerged from all the interviews to describe the participantsí situations before entering the program. The individualsí lives were unstable, with frequent hospitalizations and poor mental health. Four individuals had attempted suicide. This lack of control over health was coupled with a lack of control over most areas of their lives, including decision-making, resources, time, family relations, addictions, friendships, jobs, and housing security and quality. Powerlessness was coupled with a lack of confidence, skills, and income to achieve what they wanted. Physical ailments that controlled or limited activities were also common. Three individuals were dealing with addictions and two had lost custody of their children. The "chaotic," "needy," and "self-destructive" state of the consumer/survivorsí lives was described with an absence of hope and a lack of power to make change.
In search of answers to their problems, these individuals turned to professionals for help. However, the typical experience was that professionals decided what was best for them. One participant shared that she "did what I was supposed to do, what everybody was telling me. . . thatís existing." Closely related to experiences of powerlessness were feelings of dependence. One participant described herself as always compliant with professionals because she was "too scared to not do anything." Another participant said: "I was very needy. . . I needed to be with somebody 24 hours a day. . . I was scared." Another participant said "hospital became my way of life."
Community integration. All of the participants experienced conflict in their relationships with family and friends. One participant described the abuse she suffered at the hands of her alcoholic parents. A sister of another participant made the following comment about her sisterís marriage. "Oh, it was a rotten marriage. It really was." Another participant who was living with his brothers reported that he moved out because he was experiencing considerable conflict with one of the brothers.
Despite the dependence on professionals and others noted above, isolation was common. Two of the individuals spent most of their time in bed. One participant explained that he "didnít see anybody for days. . . I was just eating and sleeping." Another person interacted only with her living companions, who had also experienced mental health problems. Participants indicated that they often felt lonely and withdrawn.
Access to valued resources. Another theme that emerged from all the participants was poor housing situations. Each of the individuals had lived in a variety of housing situations that were unstable and/or of poor quality. Safety was often an issue. Apartments were chosen without much research or knowledge of options as individuals entered the community or fled the last uncomfortable situation. One individual explained that he "was living in a real dump of a place. I took it because it was the first place I could get out of the hospital. I had to have a place to go when I got out of the hospital." Two individuals found themselves unsettled and staying with friends or family to avoid their apartments. Another person lived for short periods in boarding homes and eventually ended up homeless.
Involvement in the Program
Empowerment. One theme was consumer/survivorsí readiness for change. For example, in the stories of individuals the supported housing program in Ontario, individuals described the initial security of quality and comfortable housing where they were able to make friends. This set the stage for further changes. In the other supported housing program, staff spend considerable time helping people to prepare for change. The length of this process varies depending upon the individual. While four of the five individuals began to focus on what they wanted shortly after acquiring supported housing, one individual struggled for two years before she became more clear on what she wanted. As one participant stated:
Across both settings, individualized support controlled by consumer/survivors was mentioned as an important factor in the empowerment process. Participants stated repeatedly that the community support workers listened and understood their individual situations, and they described themselves as being in control of the support process. "I felt comfortable as soon as I came over. As soon as I came to the apartments here I felt comfortable. I knew I was ready to work on myself - some things that I had to get out of the way. And also, too, I felt good just right from the beginning. You know, Iíve had a good roommate. She made it feel like home, so I was lucky." In this manner, individuals received holistic support because all areas of their lives were addressed and could become a focus if chosen. The support was described as individual, flexible, and ongoing, so support was adapted or implemented as it was helpful, appropriate, or agreeable to the consumer/survivor. Consumer/survivors were able to learn skills and information and develop a focus that was specific to their interests. "Iím not told what to do and how to do it, this is what you think always. Iím writing the play."
"She [community worker] just seemed to listen more than other workers Iíve heard about."
The participants reported a variety of empowering support/experiences to believe in oneself. The support they received from their community workers was focused on increasing their beliefs that they could accomplish their goals. All interview participants described efforts to increase self-esteem and validation of skills, capabilities, and opinions. Several volunteer, employment, and educational experiences were important opportunities in assisting consumer/survivors to recognize that they could work successfully and competently. Three individuals described opportunities to work within the organizations to develop confidence and skills. Encouragement and recognition of skills was emphasized as participants were supported to believe in and care for themselves. Community workers commented that they focused on strengths when working with individuals on their goals.
Community integration. During involvement in the programs, participants identified that they had developed a range of supports that were both informal and formal. This diversification of support extended beyond the worker from the supported housing program and included a range of mental health professionals, other medical professionals, self-help, generic supports or services, friends, neighbours and family. In those cases in which the individuals had ongoing relationships with friends and family, staff worked with them to make these relationships more supportive and healthy. Meeting new friends for supportive relationships was a common experience that was facilitated through supported housing. Workers encouraged the people they supported to participate in supportive environments, including the supported housing organizations themselves. Individuals met friends through activities and opportunities through these settings. For example, one participant made many good friends with other people who live in the apartments, and she regularly attended the Residentsí Council meetings and social events held by the supported housing organization.
Access to valued resources. All participants desired resources, such as education, employment, housing, activities, and rights information within and outside the organizations, and all reported receiving assistance with resources. The program in western Canada has funds available that each individual accessed for items that enhanced their recovery. Also, community workers assisted consumer/survivors to obtain access to resources they deserved through advocacy. Self-advocacy skill development was supported and facilitated so that individuals could learn to meet their own needs.
Empowerment. Each participant and network member reported stable mental health as an impact of supported housing. Participantsí mental health at the time of the interviews contrasted sharply with the unstable mental health, crises, and frequent hospitalizations that characterized their lives prior to their involvement in supported housing. The individual stories showed less severe fluctuations in mental health, improved coping skills and self-awareness about oneís mental health problems, and decreased hospitalizations. No one had attempted suicide since entering supported housing, whereas this was a common theme in their life stories prior to entering supported housing. When asked what difference the supported housing organization had made in her life, one participant said the following:
The following quotes illustrate improved mental health outcomes: "I wouldnít have had a life. I would have been dead probably Ė just would have self-destructed eventually." There are several areas in which each participant displayed more power and control. Common examples were developing assertiveness, communication, self-esteem, boundaries, self-respect, individual identity, healthy sleep patterns, an understanding of entitlements, choices, and skills for independent living and social interactions. The following quotes from the participants illustrate this theme. "Sheís certainly less depressed. . . Sheís not suffering clinical depression anymore, sure she gets down but sheís not into this big black hole anymore and she can kind of take it in stride and sheís got some coping skills, yeah sheís more satisfied. Sheís maybe more at peace than when she first came in her and her life I donít think is as chaotic." (Community worker)
"I canít really see her getting back into the hospital trap again." (Community worker)
Increased confidence was part of this heightened power and control. Confidence inspired the individuals to take on more opportunities to practice and use decision-making and assertiveness in the individuals= homes, support networks, and communities. Additionally, participants developed independence, which contributed to and was influenced by the amount of control they possessed and the opportunities to use it. Specific opportunities such as employment, committee work, and an empowerment program were credited as significant factors in promoting independence. "Learning that I didnít have to do what I was told, it was a choice."
"Iím not going to take any more garbage, and standing on my own two feet and Iíve learned to pick friends that are really friends."
"Iím in more control of my life."
Developing and fulfilling dreams was another theme. Each participant was able to outline his/her plans or goals and expected more from themselves. The impact was described as regaining hope as "[community worker] had always thought that I could work in human services, and I thought Ďno, thatís a fantasy, it would be nice but noí. . . I had lost something, [community worker] was able to pull it back." There was significant work to do to achieve many of these dreams, but supports were in place to help people towards their goals. Individuals were able to see a brighter future and to experience more enjoyment of the present.
Community integration. Enhanced community integration was a theme expressed by all participants as each person had become more involved in the community for recreation, volunteering, employment, education, or shopping. Lack of money to regularly attend activities of interest was a problem mentioned by two individuals. However, each is comfortable in his/her neighbourhood, visiting friends and family, and participating in activities. In comparison to the isolation experienced beforehand, these individuals feel more involved and active.
There was agreement among all those interviewed that relationships had improved for the consumer/survivors. For two individuals, relationships with children had improved due to several factors (i.e., confidence, better mental health, better apartment, cooking skills, communication). Four consumer/survivors were closer with family now and had addressed family issues through the program. Friendship was another domain impacted for all individuals. Friendships were more plentiful, healthy, reciprocal and of their choice. Friends were recognized as long-term, dependable supports for all but one participant who continued to work on building more friendships. Despite varying levels of social connectedness, isolation was reduced for all. These improved relationships were also characterized by trust. One participant stated that she has changed from being a withdrawn, cold, and confrontational young adult into a person who is more open and giving. Moreover, she no longer feels isolated and lonely, but meets often with friends, whether at her daily trips to the coffee shop, or in the evening watching videos together.
Access to valued resources. The homes that the consumer/survivors researched and obtained all were described by them as feeling like home or beginning to feel like home. Personal touches and being hosts or developing skills to be hosts helped develop the sense of home feeling. Moreover, each individual had increased stability in his/her home. Individuals with a new apartment appreciated that they had support to find an affordable option, usually subsidized public housing, which they had been unable to find on their own. The homes were also described as better quality than previous accommodations and "comfortable" due to the surroundings and, sometimes, the friendly neighbours.
As the consumer/survivors were seeking valued roles in society, employment was desired. Two individuals were successful in securing meaningful employment. Others had connected with volunteer opportunities and a supported employment program, but stable employment had not yet been obtained.
The five stories provide in-depth information about the processes of recovery and empowerment experienced by psychiatric consumer/survivors in the context of supported housing. We begin by considering changes/impacts that the participants and their network members reported. Next we consider the way in which the supported housing programs helped to contribute to these changes/impacts.
The broad themes/values of the empowerment/community integration paradigm provided a useful framework for understanding the impacts/changes experienced by the five individuals in this study. While evaluation research typically reports personal changes as outcomes on standardized measures, the in-depth narrative approach that we used is consistent with the view that empowerment (Lord & Hutchison, 1993) and recovery (Baxter & Diehl, 1998; Weaver Randall et al., 2001) are processes that unfold over time. While each story is unique, we found some common themes in these stories.
Stories of Empowerment and Recovery
As can be seen in Table 1, all of the individuals in this study reported lengthy periods of powerlessness and dependence prior to their involvement in supported housing. Lord and Hutchison (1993) also found that powerlessness and dependence were common experiences of disadvantaged individuals in their examination of the process of personal empowerment, and Baxter and Diehl (1998) found that the lives of mental health consumers are often plagued by repeated crises. However, after settling into supported housing, all of the individuals reported positive changes. One area of empowerment for the individuals was control over their illness as they became more aware of and better able to cope with mental health issues. Both Lord and Hutchison (1993) and Weaver Randall (2001) found that empowerment and recovery begins with an awareness and recognition of how oneís life circumstances impact on oneís sense of self and quality of life. This increased awareness resulted in more stable mental health and fewer hospitalizations and crises, which is consistent with previous reports of reductions in hospitalization rates (Brown et al., 1991; Burek et al., 1996) and psychiatric symptoms (Dixon et al., 1994) for individuals who access supported housing. The individualsí lives became more stable and less chaotic.
Key Dimensions of Consumer/Survivor Experiences Over Time in Relation to the Core Values of Empowerment, Community Integration and Access to Valued Resources
Core Values of the Alternative Paradigm Prior to Involvement in Supported Housing During Involvement in Supported Housing Impacts/Changes Experienced in Supported Housing Empowerment * Powerlessness
* Readiness for change
* Individualized support controlled by individuals
* Empowering support/experiences to believe in oneself
* Stable mental health
* Power and control
* Developing and fulfilling dreams
Community Integration * Conflict in relationships with family and friends
* Diversification of support * Community integration
* Improved relationships
Access to Valued Resources * Poor housing situations * Assistance with resources * Sense of home
The findings of this research go beyond previous research in demonstrating that consumer/survivors living in supported housing experienced increased power and control and the opportunity to develop and work towards their personal dreams that were either lost or unimaginable given their earlier life circumstances. The ability to regain a sense of self-respect and hope for the future provided energy to work towards more personal life goals and ambitions. Components of power and control included assertiveness, communication skills, self-esteem, individual identity, and skills for independent living and social interaction, all of which are part of what consumer/survivors define as empowerment (Chamberlin, 1997). In their study of the process of personal empowerment, In their descriptions of recovery, Baxter and Diehl (1998) note the importance of rebuilding independence; Young and Ensing (1999) speak of "returning to basic functioning" (p. 224); and Smith (2000) reported a sense of control and independence.
As we noted at the beginning of this paper, empowerment and recovery develop in the context of relationships and community (Kloos, 2001; Lord & Hutchison, 1993; Smith, 2000; Weaver Randall, 2001). Prior to their involvement in supported housing, the five individuals were profoundly disconnected from their communities. Where relationships with family and friends existed, they were typically fraught with conflict. Moreover, experiences of isolation and loneliness were common. Individuals involved in this research discussed the desire to contribute to and become active in society. Through supported housing, each of the individuals focused on activities that provided increased integration in the community through relationships, activities, employment, or training. Lord and Hutchison (1993) similarly found that learning new social roles and initiating/participating in the community accelerated the process of empowerment. The finding of decreased social isolation stands in contrast to some earlier studies of people who have accessed supported housing (Champney & Dzurec, 1992; Depp et al., 1986; Pulice et al., 1995). Perhaps the individuals in those earlier studies had adequate housing, but inadequate support.
Although success levels varied, the supported housing programs assisted each individual to make advances in her/his goals to become more integrated and improve relationships. Based on these individualsí experiences of damaged self-worth due to a lack of belonging in society, the positive feelings and improved assertiveness that developed as they became more active validates the belief that integration is part of empowerment that promotes the development of identity (Kloos, 2001; Lord & Hutchison, 1993: Nelson et al., 2001; Smith, 2000; Weaver Randall, 2001).
The final important component of the empowerment/community integration paradigm is access to valued resources. Like previous research (Depp et al., 1986; Dixon et al., 1993; Goldfinger et al., 1999; Hurlburt et al., 1996; Newman et al., 1994; Tsemberis & Eisenberg, 2001), we found that each of individuals was able to obtain more stable and desirable housing. Moreover, the five individuals experienced their new housing as homes, not just as places to live. While the individuals still struggled with limited income, each made some progress in terms of finding employment, volunteer work, or other meaningful activity in the community. This finding has not been reported in previous research on supported housing.
Overall, there were significant shifts over time in the personal stories of the five individuals. The lives of all of these people prior to their involvement in supported housing were quite chaotic and troubled. Experiences of powerlessness, dependence, significant mental health problems and psychiatric hospitalization, social isolation, interpersonal conflict, and poor housing were common in the lives of each person. Each person had little sense of identity aside from the role of "psych patient," and none of the individuals had life goals or saw a positive future for themselves. With the resources of housing and support, however, each individual was able to begin to reconstruct their identity, life story, and dreams for the future (Crossley, 2000). Through stable housing and support, individuals recovered their mental health, regained a sense of power and control, developed new skills, became more active participants in life, improved their relationships, and worked towards employment and meaningful activity in the community. These stories of personal transformation go beyond previous studies that have reported some positive outcomes associated with supported housing. We now consider how the context of supported housing contributed to these impacts/changes in the life stories of the individuals.
We found that both personal motivation and qualities of the supported housing programs were important for the processes of empowerment and recovery. Previous qualitative research has found that "taking responsibility for own recovery" (Young & Ensing, 1999, p. 224) and "time to get going" (Baxter & Diehl, 1998, p. 352) were words used by consumers to describe their own motivation for change. Both Lucksted (1998) and Smith (2000) found that "turning points," either positive or negative events, provide a "shake up" that is the impetus for change. We found that in some cases the acquisition of supported housing stimulated the processes of empowerment and recovery. However, in other cases, support workers needed to spend more time with the individuals to help them become more motivated. Both the consumer/survivors and support workers recognized the need for individuals to want to change. The community workers supported individuals to become ready for change, but the process could not be forced and it was necessary to give individuals the strength to choose and direct their process that would empower them. Had the time not been allowed for individuals to become ready, the process would not have been one of individual empowerment, but forced activity. This stage of developing "readiness for change" is an important component of the empowerment process, but there is currently limited insight into how such readiness develops. Further research is needed on this part of the empowerment process.
How Supported Housing Contributes to Change
The impacts described in the previous section resulted from support that was flexible, self-directed and empowering. This philosophy of "doing with" not "doing for" has been stressed by Carling (1993). Similarly, the support was individualized and ongoing to continue the development in an empowering philosophy once the individual was ready for change. At all times, the support providers kept the principles of empowerment at the forefront by recognizing strengths, teaching skills, providing encouragement, exploring opportunities, and letting the individual chose the process (Hogan & Carling, 1992; Ridgway & Zipple, 1990a, 1990b).
Each individual had goals aimed at becoming more integrated in the community and the component of the program that contributed to the achievement of these goals was diversity. Each individual embarked on a unique process of change, which included developing oneís own social network and experiencing different activities and opportunities. Individuals chose their supports and activities not from a list of limited options but from a complete scan of the community and their skills and interests.
As individuals who enter supported housing programs are often lacking resources, tangible support is needed to meet basic needs. Advocacy, support for self-advocacy, and material or monetary resources were used to assist individuals to access valued resources. Once again, we found that it is not just providing assistance in gaining valued resources, but encouraging individuals to acquire the types of resources that they wish. The empowerment philosophy that underlies supported housing has been successfully used to enable consumer/ survivors to access other valued resources, such as employment (Bond, Drake, Mueser, & Becker, 1997).
This study provided an in-depth examination of the stories empowerment and recovery of five psychiatric consumer/survivors in the context of supported housing. One limitation of this study is the small sample size. We emphasized depth over breadth in this study to develop an initial understanding of changes in the life stories of consumer/survivors and how supported housing may play a role in facilitating those changes. Another limitation is that this type of research cannot make "cause-effect" conclusions about the extent to which supported housing accounted for the impacts/changes that were reported. Future research on this topic can build on this study in several different ways. First, narrative studies using qualitative data could use larger sample sizes to examine the extent to which factors such as gender and ethnicity influence the narratives of psychiatric consumer/survivors who participate in supported housing. Second, as was mentioned earlier, the issue of "readiness for change" needs more careful examination. How do individuals begin to break the downward spiral of powerlessness and dependence that often characterizes their lives? And how can supported housing staff help the people that they support to prepare for change? Third, the types of changes reported by participants in this study could inform the development of outcome measures that could be employed in more traditional evaluation studies of the impacts of supported housing. In particular, the need for measures of personal empowerment, independence, life skills, and community integration are suggested by the findings of this study.
The results of this study reinforce the trend towards more empowering, consumer-controlled services and supports (Carling, 1995; Nelson et al., 2001). The participants in this study spoke of the importance of individualized, flexible, and consumer-controlled supports, diverse sources of support, and assistance with accessing basic resources for their empowerment and recovery. The shift from "doing for" to "doing with" is one that needs to be supported through staff training and organizational changes (Lord, Ochocka, Czarny, & MacGillivary, 1998). Finally, there is a need for social policy to move beyond the narrow focus on mental health services towards a broader focus on housing, employment, and community support, which is what the individuals in this research felt was necessary for them to pursue empowerment and recovery.
Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16, 11-23.
Baxter, E. A., & Diehl, S. (1988). Emotional stages: Consumers and family members recovering from the trauma of mental illness. Psychiatric Rehabilitation Journal, 21, 349-355.
Bond, G., Drake, R. E., Mueser, K. T., & Becker, D. R. (1997), An update on supported employment for people with severe mental illness. Psychiatric Services, 48, 335-346.
Brown, M. A., Ridgway, P., Anthony, W. A., & Rogers, E. S. (1991). Comparison of outcomes for clients seeking and assigned to supported housing services. Hospital and Community Psychiatry, 42, 1150-1153.
Burek, S., Toprac, M., & Olsen, M. (1996, February). Third-year outcomes of supported housing in Texas: Measuring the long-term effects of system change. Paper presented at the Sixth Annual National Conference on State Mental Health Agency Services Research and Program Evaluation, Arlington, VA.
Carling, P. J. (1993). Housing and supports for persons with mental illness: Emerging approaches to research and practice. Hospital and Community Psychiatry, 44, 439-450.
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabilities. New York: The Guilford Press.
Chamberlin, J. (1990). The ex-psychiatric patients= movement: Where we=ve been and where we=re going. The Journal of Mind and Behavior, 11, 323-336.
Chamberlin, J. (1997). A working definition of empowerment. Psychiatric Rehabilitation Journal, 20, 43-46.
Champney, T. F., & Dzurec, L. C. (1992). Involvement in productive activities and satisfaction with living situation among severely mentally disabled adults. Hospital and Community Psychiatry, 43, 899-903.
Crossley, M. L. (2000). Narrative psychology, trauma and the study of self/identity. Theory and Psychology, 10, 527-546.
Depp, F. C., Dawkins, J. E., Seizer, N., Briggs, C., Howe, R., & Toth, G. (1986). Subsidized housing for the mentally ill. Social Work Research and Abstracts, 3-7.
Dixon, L., Friedman, N., & Lehman, A. (1993). Housing patterns of homeless mentally ill person receiving assertive community treatment. Hospital and Community Psychiatry, 44, 286-288.
Dixon, L., Krauss, N., Myers, P., & Lehman, A. (1994). Clinical and treatment correlates of access to Section 8 certificates for homeless mentally ill persons. Hospital and Community Psychiatry, 45, 1196-1200.
Goldfinger, S. M., Schutt, R. K., Tolomiczenko, G. S., Seidman, L., Penk, W. E., Turner, W., & Caplan, B. (1999). Housing placement and subsequent days homeless among formerly homeless adults with mental illness. Psychiatric Services, 50, 674-679.
Harding, C., Brooks, G., Ashikaga, T., Strauss, J., & Brier, A. (1987). The Vermont longitudinal study of persons with severe mental illness: I. Methodology, study sample, and overall status 32 years later. American Journal of Psychiatry, 144, 718-726.
Hogan, M. F., & Carling, P. J. (1992). Normal housing: A key element of a supported housing approach for people with psychiatric disabilities. Community Mental Health Journal, 28, 215-225.
Hurlburt, M. S., Wood, P. A., & Hough, R. L. (1996). Providing independent housing for the homeless mentally ill: A novel approach to evaluating long-term longitudinal housing patterns. Journal of Community Psychology, 24, 291-310.
Kloos, B. (2001, June). Meaning-making and recovery: Contributions of mutual help world view to residential treatment for persons with serious mental illness. Paper presented at the Annual Meeting of Society for Community Research and Action, Atlanta.
Lord, J., & Hutchison, P. (1993). The process of empowerment: Implications for theory and practice. Canadian Journal of Community Mental Health 12(1), 5-22.
Lord, J., Ochocka, J., Czarny, W., & MacGillivary, H. (1998). Analysis of change within a mental health organization: A participatory process. Psychiatric Rehabilitation Journal, 21, 327-339.
Lucksted, A. (1998, August). Empowering turning points in the lives of mental health care consumers. Poster presentation at the Annual Convention of the American Psychological Association, San Francisco, CA.
MacGillivary, H., & Nelson, G. (1998). Partnership in mental health: What it is and how to do it. Canadian Journal of Rehabilitation, 12(2), 71-83.
McGuire, P. A. (2000, February). New hope for people with schizophrenia: A growing number of psychologists say recovery is possible with psychosocial rehabilitation. Monitor on Psychology, 31(2). Washington, DC: American Psychological Assocation.
Nelson, G., Lord, J., Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards empowerment and community. Toronto: University of Toronto Press.
Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). ANothing about me, without me@: Participatory action research with self-help/mutual aid organizations for psychiatric consumer/ survivors. American Journal of Community Psychology, 26, 881-912.
Newman, S. J., Reschovsky, J. D., Kaneda, K., & Hendrick, A. M. (1994). The effects of independent living on persons with chronic mental illness: An assessment of the Section 8 Certificate Program. The Milbank Quarterly, 72, 171-198.
Parkinson, S., Nelson, G., & Horgan, S. (1999). From housing to homes: A review of the literature on housing approaches for psychiatric consumer/survivors. Canadian Journal of Community Mental Health, 18(2), 145-164.
Pulice, R. T., McCormick, L. L., Dewees, M. (1995). A qualitative approach to assessing the effects of system change on consumers, families, and providers. Psychiatric Services, 46, 575-579.
Pyke, J., & Lowe, J. (1996). Supporting people, not structures: Changes in the provision of housing support. Psychiatric Rehabilitation Journal, 19, 6-12.
Rappaport, J. (1987). Terms of empowerment/exemplars of prevention: Toward a theory for community psychology. American Journal of Community Psychology, 15, 121-148.
Rappaport, J. (1993). Narrative studies: Personal stories and identity transformation in the mutual help context. Journal of Applied Behavioral Science, 29, 239-256.
Rappaport, J. (1995). Empowerment meets narrative: Listening to stories and creating settings. American Journal of Community Psychology, 23, 795-807.
Ridgway, P., & Rapp, C. A. (1997). The active ingredients of effective supported housing: A research synthesis. Lawrence, Kansas: The University of Kansas School of Social Welfare.
Ridgway, P., & Zipple, A. M. (1990a). Challenges and strategies for implementing supported housing. Psychosocial Rehabilitation Journal, 13, 115-120.
Ridgway, P., & Zipple, A. M. (1990b). The paradigm shift in residential services: From the linear continuum to supported housing approaches. Psychosocial Rehabilitation Journal, 13, 11-31.
Riessman, C. K. (1993). Narrative analysis. Newbury Park, CA: Sage.
Riger, S. (2001). Transforming community psychology. American Journal of Community Psychology, 29, 69-78.
Smith, M. K. (2000). Recovery from a severe psychiatric disability: Findings of a qualitative study. Psychiatric Rehabilitation Journal, 24, 149-158.
Tanzman, B. H. (1993). Researching the preferences for housing and supports: An overview of consumer preference surveys. Hospital and Community Psychiatry, 44, 450-455.
Trainor, J., Morrell-Bellai, T. L., Ballantyne, R., & Boydell, K. (1993). Housing for people with mental illness: A comparison of models and an examination of the growth of alternative housing in Canada. Canadian Journal of Psychiatry, 38, 494-500.
Tsemberis, S., & Eisenberg, R. F. (2000). Pathways to housing: Supported housing for street-dwelling homeless individuals with psychiatric disabilities. Psychiatric Services, 51, 487-493.
Weaver Randall, K., Salem, D. A., & Reischl, T. M. (2001, June). Understanding recovery from schizophrenia in a mutual help organization. Paper presented at the Annual Meeting of Society for Community Research and Action, Atlanta.
Young, S. L., & Ensing, D. S. (1999). Exploring recovery from the perspective of people with psychiatric disabilities. Psychiatric Rehabilitation Journal, 22, 219-231.
Copyright © 2002, Hampstead Psychological Associates, Ltd - A Subsidiary of Southern Development Group, SA.
All Rights Reserved. A Private Non-Profit Agency for the good of all, published in the UK & Honduras.