Defining Community for Persons with Psychosis: The Toronto Context (aka Main Study)
Background
Participation and integration into the community for people with mental health concerns has been emphasized as a priority in the clinical best practice literature and policy commentary. Participation in community is regarded as an important treatment outcome, a key component of the recovery process, and a civil right. Despite the ubiquitous use of the term "community," research into the spaces, interactions, and experiences that comprise community is very limited.
Approach
We are currently wrapping up an in-depth, longitudinal qualitative study of community participation among people who have been diagnosed with psychosis living in 5 downtown Toronto neighbourhoods. We are using grounded theory, ethnographic, and social mapping methods to explore the experiences of community among a diverse group of 31 participants with representation from each of Toronto's four largest ethno-racial populations (South Asian, East Asian, African Caribbean, white European origin). Participant experiences of community were evaluated 3 times over the course of one year, examining the physical, social, psychological, political, economic, and cultural dimensions of community participation. We have also interviewed family members and service providers of participants as well as community members with whom they are in frequent contact (e.g., convenience store clerk).
Importance
In a context of increasing emphasis upon community participation as a treatment goal and civil right, and evidence indicating the negative impacts on mental health of discrimination and social exclusion, this work represents an important and much called for line of investigation. With an in-depth understanding of community participation for this population we will be in a far better position to begin to explore how we might better facilitate participation, integration, and inclusion and, in turn, evaluate those efforts. As long as the concept of community remains vague and vulnerable to misguided assumptions, we will not be able to effectively move beyond rhetoric to generate solutions guided by evidence. For the hundreds of thousands of Canadians who experience mental health concerns and their families, this would seem to be a line of inquiry with significant implications in both health and civil rights domains.
Detailed findings coming soon. In the meantime, here is an infographic detailing main themes emerging from the study:
Funded by the Ontario Mental Health Foundation
"...Community is supposed to be a safe place to be and helping each out in a way that everybody feels safe in this community..."
- Participant quote
"What community means to me, well that would be a place where you have friends, you know, a place where you're comfortable."
- Participant quote
"The right community can be the difference between feeling like you're living or dying."
- Participant quote
Some barriers to community participation identified by participants in the Main Study include:
- mental health discrimination and stigma
- racial discrimination
- poverty
- poor and unsafe housing conditions
- experiences of trauma and victimization
- immigration status
- lack of social support
- constrictions in choice (e.g., boarding home rules)
"...as soon as they find out that you're schizophrenic, they think less of you .... So I'm stuck with doing small jobs that I can't even…you know, I can do a little better than, you know what I mean, because you know I still want to help. I just have to go with whatever there is. But I can help a little more..."
- Participant quote