Involving participants in the dissemination of HIV research results.

Abstract

Abstract Participatory action research initiatives engage research participants as co-investigators and provide them with an avenue to explore own experiences. It is not always easy, however, to determine how to involve participants in meaningful ways. Funding limitations and rigid methodological procedures pose barriers for creative approaches to inquiry. Nonetheless, the HIV program at the Hospital for Sick Children in collaboration with the University of Victoria, has taken an important step towards involving participants in a meaningful way - through the dissemination of research results. The present article describes the procedure used to share the role of researcher/author. INTRODUCTION Researchers are beginning to understand that the more they involve participants in the process of research, the more powerful and meaningful are the outcomes. This is especially true in the ever-changing field of HIV research where the experiences of affected individuals are so closely interconnected with care and treatment. The more that affected families contribute to the process of creating knowledge, the greater the overall contribution. Involvement in research initiatives provides many families with a way to increase sense of empowerment and, hence, overall quality of life (Roberts & Cairns, 1999). Participatory action research methodologies have much to offer research in the areas of health. Funding and traditional methodological limitations often create barriers to involving participants in meaningful ways. Creative approaches to inquiry need to be used to avoid these barriers. This article describes how the HIV team at the Hospital for Sick Children - in collaboration with the University of Victoria - took an important step towards significantly engaging participants in the process of research. Namely, selected participants, acting as co-authors, were engaged in the process of disseminating the results of a national, multisite research project. CONTEXT In 1997, the HIV team at the Hospital for Sick Children in Toronto published a study (Salter Goldie, DeMatteo, King, & Wells, 1997) focusing on the psychosocial issues for families in Canada living with HIV/AIDS. Parents were greatly concerned with how to disclose own HIV status to children, as well as how to tell a child of his or her own HIV infection. Disclosure had the potential for creating conflict among family members and between families and professionals. The HIV team examined these concerns with a national, multisite research project focusing exclusively on the complex issues surrounding disclosure (DeMatteo et al., 1999). Families who participated in this study expressed an interest in creating a disclosure handbook that could help families share with each other disclosure experiences. The HIV team agreed that the creation of a disclosure handbook could both meet this need as well as serve as a way to significantly involve families in the research process. PROCEDURE The first step in this project was to strengthen community partnerships as a way of overcoming inherent barriers. The HIV team used an already established, multisite, national research network to recruit participants from the initial study (DeMatteo et al., 1999). Eleven families from across the country (representing 25% of families who participated in the first study) were asked to continue in this follow-up based on situation (i.e., we considered it inappropriate to invite gravely ill families) and ability and willingness to attend research meetings. A co-investigator participated at each site and involvement was crucial to the success of the project. In addition to helping organize travel plans locally, they contributed to discussions, willingly and conscientiously took notes, remained tuned into the needs of their families, and quietly solved problems. Perhaps most importantly, all families who attended knew someone who was a member of the research team. …