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  • Stigma as a Facet of Community–Academic Partnership
  • Sally Mason

The Positive Families Project is a partnership between parents living with HIV, service providers, and myself, an academic at a public university. Our projects investigate the need for and develop social services with HIV–affected families. Often services focus only on the person living with HIV. Our mission is to support people living with HIV who are also parents so that families with an HIV+ member can be healthy and productive. Stigma reduction is key to our approach as stigma can contribute to multiple risks for parents and their children.

The partnership has encompassed several projects, starting with pilot studies in 2006–2010 on the stigma experiences of non–HIV+ teens living with HIV+ parents. Parents and community–based service providers originally were research participants and the data analysis team. The team reviewed transcripts, identifying themes and making recommendations for future services. Currently parents and service providers meet monthly to develop ideas for family–focused services and review funding possibilities. Recently, we received funding to implement psychoeducational group sessions for parents with HIV. Parents and service providers recruited participants, co–facilitated groups, and reviewed evaluation data. Originally my role was researcher and a program coordinator/facilitator. Now I convene and facilitate the planning group, assist with programming when funded, and provide resources such as meeting space, writing skills, and supplies.

I was drawn to partnership and participatory methods through our pilot studies on stigma. One finding about stigma was that positive parents and their non–positive but HIV–affected children used silence as a form of protection from stigma. They identified wanting to find “safe others” who they could trust with their secret. If we, as researchers, asked them to open up, to be less vigilant for an hour or two in an interview, first, how could we reduce (and not reproduce) stigma for them during this process and, second, what was our responsibility to give them a safe place to talk in the future?

Coincidentally, I was meeting regularly with researchers committed to community collaboration and participatory methods. I became increasingly convinced that participatory methods have the potential to, at least, not reproduce stigma and, at most, reduce stigma’s impact. By leveling the power differential between researchers, service providers, and families (a difference which may be exacerbated by stigma), participation can be an antidote to stigma, by engaging families, as Paolo Freire would say, in “the struggle for their redemption.” [End Page 30]

As a service provider, I had experienced courtesy stigma as described by Goffman or stigma–by–association with people living with HIV. Due to my status—race, class—and with support from educated family and friends, I was able to thwart efforts to label me as less than “normal” or to be silenced in my work. What I had not anticipated was how, as boundaries between academic and community members blur, parents’ stigma situations became part of the process, immersing me in their experience and confronting me with fresh personal and professional dilemmas.

A prime example occurred while convening a community group to help with the analysis of data collected during focus groups with HIV+ parents and their non–infected adolescent children. Sandy (pseudonym) was an African–American woman who had been engaged with our projects over the years. She had known her HIV status for at least 15 years and had often been a peer facilitator in our parenting groups. She called me one day saying that she had told a church member about our project. This church member was a graduate student in community psychology and was intrigued by our recent research. Sandy thought this young woman would be an asset to our process providing some assistance as we prepared the final reports and articles. Sandy was excited to involve the student and asked if she could give this young woman my number. As we always need more resources, I heartily agreed.

After hanging up the phone, I realized that I did not know if the graduate student or anyone at Sandy’s church knew Sandy’s HIV status. I called Sandy back. She said that only the minister at her church knew...


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pp. 30-33
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