HIV-related stigma among people with HIV and their families: a qualitative analysis

We examined the interconnectedness of stigma experiences in families living with HIV, from the perspective of multiple family members. Semi-structured interviews were conducted with 33 families (33 parents with HIV, 27 children under age 18, 19 adult children, and 15 caregivers). Parents were drawn from the HIV Cost and Services Utilization Study, a representative sample of people in care for HIV in US. All of the families recounted experiences with stigma, including 100% of mothers, 88% of fathers, 52% of children, 79% of adult children, and 60% of caregivers. About 97% of families described discrimination fears, 79% of families experienced actual discrimination, and 10% of uninfected family members experienced stigma from association with the parent with HIV. Interpersonal discrimination seemed to stem from fears of contagion. Findings indicate a need for interventions to reduce HIV stigma in the general public and to help families cope with stigma.