When Soutoura (Dignity (Paperback)

As of the end of 2005, there were 25.8 million people living with HIV/AIDS (PLA) throughout the world (UNAIDS, 2006). As a result, the fight against AIDS has become two-fold: preventing new infections and improving the life of the individuals living with the disease. At the center of the work on improving the life of PLAs is the fight to eliminate stigma because of its damaging impact on PLAs' treatment, their physical and social well being as well as their overall quality of life. The present study addresses this void by exploring HIV/AIDS stigma in the family context from the lens of PLAs in Dakar, Senegal. The focus on the family context of stigma accounts for the strong family structures in most African communities. Furthermore, the voice of PLAs is still not adequately heard. Since PLAs are the ones primarily affected and impacted by stigma and the study is concerned with obstacles to their treatment and well being, this perspective is essential. Thus, overall goal is to understand PLAs' perceptions of stigma and family communication and develop an assessment tool of HIV/AIDS stigma in the family context in Africa. In the first phase, 4 focus groups and 10 individual interviews were completed. Eight key features of family stigma were identified: (1) Cultural and social stigma, (2) dynamic stigma, (3) financial or need-based stigma, (4) double stigmas, (5) strategic disclosure decisions, (6) stigma and social-familial relationships, (7) recounting specific stigmatizing behaviors, as well as (8) stigma and self-concept. In the second phase of the study, the family stigma communication scale was developed and administered. The scale was created using words of the PLA participating in the first phase. The draft scale had two parts: frequency (33 items) and opinion (25 items); it was administered to 204 Senegalese PLAs. The final family stigma communication scale had 16 items and 5 subscales addressing both specific stigma experiences (specific stigma behaviors and disclosure strategies) and stigma attitudes (perceptions of PLA treatment and self-stigma). The implications for stigma measurement and communication are discussed.