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Hearing [our] Voices: A Participatory Research Study on Schizophrenia and Homelessness

a documentary film by Tom Everrett, produced by Barbara Schneider, and featuring members of the research team:

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THIS DOCUMENTARY FILM was produced as part of a participatory action research project on housing for people with schizophrenia. It was carried out by Dr. Barbara Schneider at the University of Calgary and nine co-researchers from the Schizophrenia Society of Alberta, Calgary Chapter.

Participatory research involves members of a community group in meaningful participation in all stages of the research process, including developing the research question, gathering the data, analyzing the data, and disseminating and using the results. (See the wikipedia definition of PAR for more information on participatory action research.) This project involved as co-researchers nine members of the Peer Support Unsung Heroes Program at the Schizophrenia Society of Alberta, Calgary Chapter, all of whom have schizophrenia and have experienced housing instability. The members of this group initiated the research, chose the topic, and, under the guidance of Dr. Schneider, conducted interviews and focus groups with others who have schizophrenia and have experienced homelessness or housing instability.

The documentary film is based on interviews conducted with the nine people with schizophrenia who took part in the participatory action research project. Research team members describe their experiences with schizophrenia, their involvement in a support group for people with schizophrenia, and their involvement in the research project.

Also included in the documentary is a segment of a dramatic performance about the research presented by the members of the research team. The narratives from the interviews and focus groups conducted for the study were woven into a powerful and moving dramatic performance entitled Housing for People with Schizophrenia: Dilemmas of Care and Control. The film and the presentation allow people directly affected by housing issues to speak about their experiences in their own words.

KEY THEMES:

The main theme arising from this research is the tension between care and control. People with psychiatric disabilities want, need, and appreciate the help and care they receive from family members, mental health professionals, government agencies, and housing and other service providers. However, to receive that care, they must submit themselves to a variety of forms of what they regard as intrusive surveillance and coercive control over many, perhaps all, areas of their lives. If they are not willing to do this, they run the risk that this care -- including housing -- will be withheld.

One of the most important outcomes of this research project is that it allows people with schizophrenia to speak to care and service providers in their own words in a way that can be heard. A number of recommendations have been developed to address the tension that exists between care and control as it relates to housing. These recommendations can be found at the end of this document and are intended to provide a basis for discussion for families, friends, housing service providers, mental health professionals, medical practitioners, social policy researchers, and other professionals who provide services to people with schizophrenia.