Exploring the prevalence of clinical issues with sero-discordant couples.

For my thesis I will be conducting a PAR research project that focuses on gathering the stories of sero-discordant couples in Calgary, Alberta. Sero-discordant couples are defined as such when one person is HIV positive and the other is HIV negative. The methodology that I will employ is that of participatory action research. Because HIV has moved from being medically classified as an end of life illness to a chronic disease, many couples will live through multiple dimensions of their couple experience within the framework of sero-discordant couple status. This research will hopefully facilitate the co-empowerment of a marginalized community of couples that are recognized as being on the fringe of the HIV community. It will bring together couples of various age, class, ethnicity, ability and sexual preference/identity.

The ultimate vision of my research is to gather ten sero-discordant couples to discuss whether or not they would like to further explore the clinical issues that are of most importance to them. True to the nature of participatory action research, a community of sero-discordant couples requested more support and understanding of their unique experience of living with HIV. The tentative goal is that once the initial gatherings take place, a communal decision will be made regarding what the next steps will look. True to the nature of social constructionist theory, my research is a complex web of relationships with people that choose to recognize that we all live with HIV whether directly or indirectly. The social constructionist perspective invites my research to move outside of the medical model, which treats HIV as a virus separate from the person, to a more relational framework that recognizes HIV as an integral medical issue that co-exists with the person, and all his/her other relationships.

Currently I am negotiating the layers of requirements that the Alberta Health Care system, and the University of Calgary require, specifically through the conjoint ethics committee. Due to patient’s health information being seen as the property of the Calgary health region I am obligated to adhere to the appropriate ethical requirements that all medical researchers would engage. The ultimate outcome, or more specifically the board of ethics decision, is not definitive at this point due to there being significant caution around the issue of confidentiality and patients HIV status. The issue of confidentiality has invited lengthy discussion between myself and the ethics board chair. The PAR methodology has evoked much uncertainty and doubt about how to ensure significant safeguards around confidentiality and, in turn, this has prolonged my research project’s approval.