PFP Project

HIV, Families, & Stigma-by-Association

This series of studies explores how stigma affects, not only the person with the stigmatizing condition or characteristic, but also loved ones and family members. Specifically, we are examining how HIV-negative teens experience stigma when their mother has HIV, how stigma-by-association may impact teens’ risk for mental health problems, substance use, and sexual risks, and the interventions or services that can reduce the impact of stigma-by-association for teens and family members.

1) Developing a measure of stigma-by-association with African-American adolescents whose mothers are living with HIV. To address the need for a comprehensive and valid stigma measure for use with HIV-affected adolescents, the authors followed a multi-stage process beginning with scale construction and a content analysis by the authors -- experts in HIV, stigma, adolescents, families, and measure development. In the second stage, eight African-American HIV-affected teens participated in cognitive interviews approximately 2 hours in length to assess comprehension and relevance as well as content validity. Cognitive interviewing methods were also useful in ensuring that the measure’s language was culturally and developmentally appropriate. The last stage was data analytic with a small sample (N=27) of African-American HIV-affected teens resulting in further refinement of the measure and the establishment of initial psychometric properties on reliability.

Through the described stages of testing, the HIV Stigma-by-Association (HIVSBA) Scale went from 45 items to a 23-item measure with good internal reliability (alpha = .866) with African-American teens between the ages of 13 to 18 who are living with mothers with HIV. An additional item, suggested by qualitative data from a pilot study, will be added to the measure and used in further testing.

2) Stigma as a risk factor among African-American adolescents with an HIV-positive mother
This study’s objectives were: 1) to establish the feasibility of recruitment, enrollment, and assessment with thirty (30) HIV-infected mothers and one of their non-infected adolescent children; 2) to explore and characterize the types of HIV stigma-by- association experienced by African-American adolescents whose mothers have HIVAIDS; and 3) to explore the relationship among HIV stigma-by-association, adolescent adverse outcomes, and specific parent, adolescent, and parent/child relationship factors. Qualitative and quantitative findings are currently being analyzed.

3) Understanding and reducing stigma with adolescents of HIV+ mothers: Consumer/professional collaboration: Community/Professional collaboration

This study explores 1) HIV-affected adolescents’ and HIV-infected mothers’ perspectives and HIV service providers’ perspectives of the impact on teens of HIV stigma-by-association, including strategies used to reduce stigma’s impact, and 2) the feasibility and acceptability of programming to reduce stigma and thus risk among adolescents whose mothers have HIV.

Focus groups with teens, mothers, and service providers address questions about how teens experience stigma and what programs or interventions might support teens and mothers in managing stigma. After a preliminary analysis of the focus group data, a Collaborative Board of eight (8) consumers and service providers will analyze the focus group findings and make recommendations for future directions in research and programming.