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Mapping out the meaning of community

Research Roundup​​​​​​​​​​

​Mapping out the meaning of community

CAMH study sheds light on the experiences of South Asians with schizophrenia in Canada

Revealed over neighbourhood walks and visits to coffee shops and faith centres, a CAMH study captures what community means to South Asians with schizophrenia in Canada. The research points to challenges and opportunities to enhance well-being and recovery that are specific to this population.

People of South Asian origin make up the largest visible minority group in Canada, representing nearly five per cent of the country’s population. Yet, “we don’t know enough about their experiences,” says Dr. Gursharan Virdee, Research Analyst in Complex Care and Recovery Program at CAMH, and lead author of the study.

Dr. Gursharan Virdee

The study team sought to expand knowledge through in-depth interviews with three men and four women of South Asian origin diagnosed with psychosis or schizophrenia and living in Toronto. Shorter interviews also took place with 19 service providers and community members whose roles bring them in close contact with South Asians.

Published in January 2017 in the International Journal of Culture and Mental Health, the study was part of a wide-ranging project – called ‘Community’ Reconsidered – that aimed to answer what community means for people with psychosis.

Dr. Sean Kidd“The idea of community comes up a lot,” says Dr. Sean Kidd, Clinician Scientist in the Complex Care and Recovery Program and Clinical Psychologist at CAMH, who is also the senior author of the study. “But it’s a challenge when its meaning is unclear, and it has importance in shaping mental health policy and care. Its use can outstrip what it means.”

Supports, and barriers

Two main areas emerged that form a person’s experience of community for South Asians living with schizophrenia: community-level factors, including family, faith and collective stigma, and service-level factors, related to obtaining support from services.

 “A number of things intersect at the community level that have an impact on mental health, on the way we view ourselves, on whether we seek help and at what time point,” says Dr. Virdee. For example, one woman recounted that her family didn’t understand her experiences of psychosis and kept her home, rather than seeking care. “The literature shows that, in South Asian communities, family looks after the individual who is experiencing mental illness, but we found that, for some people, family can be a major stressor,” she says. “Family members don’t always have the right education and don’t know how to seek help, and collective stigma means there is a fear of seeking help.

“Participants identified faith centres as spaces where they felt safe, included, heard,” she says. “For many new immigrants, faith communities become their first home. So a number of faith leaders understand what we would call the social determinants of health – issues of housing, poverty, racism that affect well-being – because they see how these issues affect the people they serve.”

At the service level, “by and large, people felt that they belonged in these services,” says Dr. Virdee. Particularly important were service providers who were open to different cultural viewpoints. For example, says Dr. Virdee, “in many faiths, hearing voices can be viewed as a gift. Some agencies have been able to embrace that, and use it to engage in conversation.”

A deep dive

“We did a deep dive truly trying to describe what community is,” says Dr. Kidd. With each of the seven South Asian participants with schizophrenia, a researcher and the participant met three times over 10 months, spending up to eight hours together in total. “At each meeting, we would go on a walk in their neighbourhood and ask individuals to take us to places they identified as part of their community,” says Dr. Virdee. “It’s interesting to be in the space with the person, and capture that data.”

The team also interviewed 19 service providers and community members, including social workers, imams and priests, who were in close contact with South Asians. These shorter interviews focused on participants’ observations of the local community and experiences of interacting with South Asians with schizophrenia.

For Dr. Virdee, shining a light on mental health within South Asian communities is a driving force in her work. She also co-leads the Collaborative for South Asian Mental Health, a Toronto-based group of researchers focused on improving mental health in South Asian communities. “Since I was 17, I’ve worked with the South Asian community around mental health. This is based on my experience of wanting to speak to someone about my mental health, and not being able to do so in my own community,” she says.

Enhancing recovery

The researchers also identified strategies to support individuals’ well-being and recovery in their own communities. To raise awareness and understanding of mental health in South Asian populations, “messaging needs to be culturally appropriate. This is missing in most broad-scale mental health campaigns,” says Dr. Virdee. “How the message is delivered is another consideration,” she says. “How can we work with faith leaders to reach people around mental health, and navigating services?

“At the service level, there is an emerging body of work around culturally adapted assessments and interventions. The DSM V Cultural Formulation Interview is under-used, but it’s a great tool,” says Dr. Virdee.

Further research involving South Asian communities, particularly understanding pathways to care and the effectiveness of services and interventions, is also needed, she says.

The study was supported by the Ontario Mental Health Foundation.​

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