Faculty of Dentistry-Oral Health Science, University of British Columbia (Brondani), Faculty of Integrated Sciences, University of British Columbia (Moniri), Treatment Outreach and Community Representation and Engagement, Positive Living Society of British Columbia (Kerston)
"In the case of our experience, the involvement of people living with HIV/AIDS prompted us to develop this study as one of the local HIV resource organization, as our unit of identity, told us that 'given the discrepancy between the demographics of HIV cases in Vancouver and the demographics of our current members, what are the educational and service needs of those we are not reaching?'"
In order to attempt to answer a research question that was posed by a local British Columbia, Canada, HIV-resource organisation, these researchers developed a community-based participatory research by training peer-led volunteers following an interview guide to facilitate discussions on the part of Aboriginal and refugee populations. [Footnotes removed throughout by the editor.]
Researchers developed focus groups, recorded sessions, and analysed the content for themes related to HIV, assembling them into a spatial representation through conceptual mapping for the purpose of identifying gaps in the awareness of printed media, support groups, and drop-in resource services.
Thematic categories that emerged in the analysis were empowerment, resources, and support.
- "Empowerment referred to the willingness participants had in being included in the decision-making processes that affect their lives.... For empowerment, group members mentioned the idea of having services that were significant to their ethnocultural background within the idea of self-identity and brotherhood...", including, for Aboriginal participants, having medical doctors who are First Nations people themselves. "Electronic and verbal communication in general, and between doctors and the patients in particular, was perceived as being empowering in the sense that individuals are able to get valuable information and proactively self-learn about their health and the progression of their disease." Spanish speakers focused on language barriers to services, including a lack of doctors who are native Spanish speakers. The study cites research showing that there is a lack of language-specific information on how to deliver services to immigrant and refugees from HIV-endemic regions.
- Resources included antiretroviral and other medications, financial support, food banks, and by-donation clothing stores. However, pride and/or lack of information were named as barriers to using these resources.
- "Faith-based organizations and spiritual counsellors can be highly effective in improving the overall health of the HIV patients along with reducing the rate of HIV transmission and social stigma within their living environments. This is mainly due to the fact that people tend to perceive such organizations as places that offer a sense of security and social acceptance." Social networks were seen as important, including families, but the refugees had left families behind when migrating, leaving key social capital resources behind as well. Also, "[d]ue to high levels of stigma, more frequently than not HIV patients became disconnected from their support networks of family members and partners."
The study concludes with some considerations, including:
- The Aboriginal participants emphasised relationships with family and community over individual health considerations, suggesting a need to tailor programmes to fit this social and cultural context.
- Participants identified ongoing needs in different areas, including the following communication-related areas:
- information on, and increased advocacy for, income assistance;
- culturally relevant and language-sensitive HIV education and awareness material;
- opportunities for exchange of information within culturally relevant and language-sensitive services and peer-led supporting groups and spaces;
- improved communication within and between patients, health professionals, and the community at large;
- faith-based organisations along with spiritual counsellors.
- Researchers concluded that: "It remains imperative that research within people living with HIV fosters egalitarian and participatory methods.....The value of community-based research initiatives lies on its ability to give voice to, and collaboratively engage, community members that would have remained silent otherwise."
Interdisciplinary Perspectives on Infectious Diseases, Volume 2012 (2012), Article ID 601027, accessed May 17 2013.