Affiliate Stigma Among Caregivers of Older People Living with HIV: A Descriptive Phenomenological Study

The pivotal role of caregivers in HIV care for older people living with HIV (PLWH) stands in stark contrast to the scarcity of research on their experiences, particularly regarding affiliate stigma. Older PLWH face a unique intersection of HIV-related stigma and ageism, which may place their family caregivers at heightened risk of affiliate stigma. However, the manifestations, sources, and coping strategies related to this stigma remain poorly understood.

The descriptive phenomenological study was conducted between May and June 2025 at an HIV care clinic of a tertiary hospital in Sichuan Province, China. Using purposive sampling, fifteen caregivers of elderly individuals living with HIV were recruited. Data were collected through face-to-face, semi-structured interviews.

Four overarching themes and eleven sub-themes were extracted: (1) sources of affiliate stigma-'Inadequate knowledge of HIV transmission routes', 'Ageism', and 'Infidelity stigma'; (2) experiences of affiliate stigma-'Stigma endorsement', 'Concealment of a family member's HIV-positive status' and 'Psychological distress'; (3) consequences of affiliate stigma-'Estrangement among family members', 'Substantial caregiver burden' and 'Social avoidance'; and (4) coping with affiliate stigma-'Enhancing knowledge of HIV/AIDS' and 'Seeking social support'.

This study investigates affiliate stigma among caregivers of older people with HIV. Healthcare providers should recognize this stigma and its negative effects. Effective interventions must be developed to alleviate this burden, thereby improving the welfare of both caregivers and patients.