The experience of stigma by African-American adolescents whose mothers have HIV

Purpose: HIV disease is one of the most stigmatized illnesses in modern history. People with HIV report stigma as a primary stressor and family members experience courtesy stigma or stigma-by-association. As African-American women account for a growing percentage of people with HIV and as people with HIV are living longer, increasing numbers of African-American youth are affected by their mothers' HIV. These are the same women and children who experience significant health and mental health disparities. Several studies report that HIV-affected adolescents who know their mother's status have higher rates of emotional/thought problems, substance use, and sexual risk, than those who do not know mother's status. Knowledge of mother's status is also a prerequisite for stigma, suggesting a relationship between stigma and risk. Little is known, however, about how HIV-affected teens experience or manage stigma.

Methods: As part of a larger study of HIV-affected adolescent risk, 27 non-infected African-American adolescents, living with a HIV-positive mother and knowing her HIV status, responded to four open-ended questions. The teens ranged in age from 13-18 years; 48% were female. Analysis was an inductive and iterative process. Using ATLAS.ti, two researchers independently coded all transcripts and met after each level of analysis to scrutinize and clarify codes or, at higher levels of analysis, coding schemes until a consensus emerged. Coding schemes and processes were also examined and discussed regularly by the full research team --experts on HIV, stigma, adolescents, family systems, and mental health.

Results: Broad themes identified were: stigma's impact on relationships, stigma experiences, and stigma management. Teens described relationship changes with extended family members but few changes with friends, as most had not told any friends about mother's HIV. At the same time, shared stigma appeared to bring the mother and child closer together. Teens anticipated a range of reactions if they told a friend, including sadness, fear, understanding, and anger. HIV-affected teens described rare direct experiences of stigma but feared potential stigma and adapted their behavior to avoid stigma. In order to protect themselves and mother from potential stigma, teens were vigilant and silent. The teens described potential or actual reasons for telling others and their decision-making process about whom to trust. Some teens were confident in their ability to tolerate insults and hurt; others appeared caught between protecting mother and needing her support to manage feelings and stigma.

Conclusions and Implications: The study was conducted with a small sample of African-American teens willing to talk about this difficult subject so may not be generalizable to all affected teens. However, the findings point to stigma's power to affect adolescents' key relationships and the adaptive behaviors that teens use to manage the burden. Management strategies generally reduced peer interactions and reinforced the mother/teen connection – a combination at odds with the peer relationships and independence fundamental to adolescent development. For future research and program development, community-based participatory methods will provide a safe space for at-risk teens to come together, break the silence, and actively participate in knowledge and service development.