HIV-related stigma in a sample of HIV-affected older female African American caregivers

Older women of color increasingly act as informal caregivers for adults and children with HIV disease. Nineteen older female (mostly African American) informal caregivers of HIV-infected individuals participated in qualitative interviews to explore their experiences with HIV-related stigma. Perceived and directly experienced stigma were examined in the context of disclosure of the presence of HIV disease. Overt HIV-related stigma was rarely experienced by these respondents, primarily because they had not widely disclosed the presence of HIV in the family and therefore had not given anyone the opportunity to ostracize or judge them. HIV-related stigma was internalized, so that disclosure decisions were based on their anticipation of censure. There also was evidence of associative stigma and of stigma management. The findings suggest the need for social work practitioners to increase awareness of the needs of stigmatized, isolated HIV-affected caregivers. Practitioners should conduct aggressive outreach and strive to provide more support to this often invisible population of caregivers to HIV-infected people.