“Like being in a cage”: stigma as experienced by adolescents whose mothers are living with HIV

Abstract

Stigma affects not only the person living with HIV, but also, by association, their family members. Stigma-by-association may contribute to adverse outcomes for children of parents living with HIV. We interviewed 27 African-American adolescents, 13–18 years old, who were not HIV-positive but whose mothers were living with HIV. As part of a broader study, adolescents responded to four open-ended questions regarding their experience of HIV stigma-by-association. Their responses were analyzed using ATLAS.ti to identify themes. About half of the teens had not told anyone their mother’s HIV status but had heard peers make fun of or insult people with HIV. Anticipating stigma, teens used a range of strategies from being silent and vigilant to brushing off insults as ignorance and refusing to feel shame. In some instances, these strategies strained peer interactions and reinforced the mother/teen connection. With guidance, mothers may be well positioned to coach children and teens to identify stigma situations, manage those situations, and ultimately reduce stigma’s impact on both adolescent and mother. Group interventions with HIV-affected teens, with or without parental involvement, can ameliorate the strained peer relationships which teens described, reducing their isolation and empowering them with knowledge and decision-making skills.

Keywords:

• stigma-by-association
• maternal HIV
• adolescents
• management strategies
• courtesy stigma

Acknowledgements

The authors would like to thank Geri Donenberg, Kesha Eason, Stephanie Schmitz, Carol Ferrans, and the adolescents who participated for their contributions to this project.

Notes

1. Based on the literature and our experience we knew that, although parents report that they have told their children, the children may not remember or understand the information or are reluctant to speak about it. In those instances, the teen’s participation in the study would not have been appropriate or ethical.