By YY Chen, Research Project Coordinator, Committee for Accessible AIDS Treatment (CAAT). This article originally appears in” Compass” Winter 2007 Issue by the OHTN, a community resource in HIV/AIDS-related CBR. The theme of this issue of the Compass is on HIV and immigrant and refugee communities. Download Newsletter from OHTN
The HIV discourse affecting immigrants and refugees from diverse ethno-racial communities tends to focus on issues of screening and the identification of risk factors. There have been very few studies that have examined the lived experiences of immigrant, refugee and non-status people living with HIV/AIDS in Canada. Fewer still are studies focusing on this population that meaningfully engage them throughout the research process.
The Committee for Accessible AIDS Treatment (CAAT), a coalition of community-based agencies that works to improve the lives of immigrant, refugee and people without status who are living with HIV/AIDS, conducted community-based research in 2001 that has since led to innovative strategies in facilitating access to legal, health, and community social services for this population. Building on this success, CAAT initiated another community-based research project in the fall of 2005 to better understand mental health needs, and to improve access to mental health services.
As a partnership project involving Toronto’s five ethnoracial AIDS service organizations, immigrant, refugee and non-status people living with HIV/AIDS originally from South Asia, Southeast/East Asia, Africa, the Caribbean, and Spanish-speaking countries in Latin America are the focus of this study. The entire project consists of six interconnected components that are grouped into two phases. In the first phase, the research team will conduct focus groups, individual interviews, surveys and a peer empowerment exercise to examine social determinants affecting mental health, the capacity of existing services to address these determinants, and elements considered as best service delivery practices. Grounded by these findings, the second phase of the study seeks to promote inclusive mental health support by developing a training curriculum for service providers, pilot-testing and evaluating best practice models, and facilitating inter-sectoral collaboration and policy changes.
Guided by the principles of Greater Involvement of People Living with HIV/AIDS, (GIPA) this study engages immigrant, refugee and non-status people living with HIV/AIDS in every aspect of the research process. For example, through their presence on the Research Advisory Committee, community members play an important role in setting strategic directions for the study from the onset. Immigrant, refugee and non-status people living with HIV/AIDS will be recruited for paid positions to undertake the day-to-day research activities. As well, a group of 20 will be involved in data analysis and the synthesis of best practice guidelines. In so doing, the study helps not only to build the capacity of people living with HIV/AIDS from these ethno-racial communities, but to situate immigrant, refugee and non-status people living with HIV/AIDS at the centre of the HIV-immigration discourse as active contributors.
“I was drawn to the project because of its commitment to include people living with HIV/AIDS in all aspects of the research design; research was conducted WITH immigrant people living with HIV/AIDS like myself FOR immigrant, refugee and non-status people living with HIV/AIDS. I met people living with HIV/AIDS from the Greater Toronto Area and from the global community. I listened to their stories of survival and contributions to Canadian society, and learned valuable lessons from their experiences.”
Riz Quiaoit, Peer Research Assistant
“As a peer research assistant in this project, I learned that there are a lot of different issues that have not been addressed in the mental health field for people living with HIV/AIDS. There needs to be more services that will help people living with HIV/AIDS deal with these problems and also to make people living with HIV/AIDS feel safe to discuss or ask for help that they need, and more trained service providers to help in this area. I have learned that we all have a story to tell and I do hope that [by telling our stories] we will make a difference in the world.”
D. Hintzen, Peer Research Assistant
The study is currently at the beginning stage of data analysis. Preliminary analysis has pinpointed a number of interconnected mental health stressors faced by immigrant, refugee and non-status people living with HIV/AIDS, including their HIV condition, experiences with the migration and settlement process, and social stigma and discrimination. Like the ethnoracial community at large, cultural beliefs play an important role for immigrant, refugee and non-status people living with HIV/AIDS by influencing their understanding of mental health and subsequently dictating the strategies they use to cope. When immigrant, refugee and non-status people living with HIV/AIDS choose to access formal support, they often report experiences of ill treatment from service providers that are perceived to be rooted in the ignorance and personal biases of practitioners. Some immigrant, refugee and non-status people living with HIV/AIDS also find a lack of information on services, long wait times, and language issues as barriers to their timely access to mental health care.
Improving access to mental health services by immigrant, refugee and non-status people living with HIV/AIDS will require a comprehensive strategy that involves collaboration among all stakeholders, including immigrant, refugee and non-status people living with HIV/AIDS, service providers, and policy makers. It is therefore important for projects like this to continue being championed by funders so that the voices of marginalized populations will have a channel to emerge, and a coherent action plan leading to an inclusive mental health service model can be properly developed and implemented.
“The CAAT project has been an eye opener and a great learning experience, because I have been able to not only get to know the various concerns of immigrants and refugees living with HIV/AIDS, but I have also been given a challenge to address various needs and issues on a personal and community level… I have been impressed with the research team as a whole for the complete dedication and enthusiasm towards the success of the project. The project has recognized the greater and meaningful involvement of people living with HIV/AIDS and included ethnoracial communities of diverse backgrounds; to me it is a milestone in community based research.”
Henry Luyombya, Peer Research Assistant
“There is never a refugee or non-status person living with HIV/AIDS who doesn’t have a problem and each and every story [that I heard] describes different versions of the same sad story. I personally would love to see some changes through our research project which could change and make a great difference to a lot of people.”
Amutha Samgam, Peer Research Assistant
For more information, please contact Y.Y. Chen at: firstname.lastname@example.org