Navigating Adversity: Psychosocial Transformation, Service Advocacy, and End-of-Life Perceptions Among Family...

The HIV epidemic remains a global challenge. In China, family caregivers bear most caregiving responsibilities for people living with HIV/AIDS (PLWHA). However, the lived experiences of these caregivers regarding psychosocial transformation, service advocacy, and end-of-life perceptions during hospitalization remain underexplored within the Chinese sociocultural context.

From August 2024 to January 2025, a descriptive qualitative design was utilized to interview 17 family caregivers of inpatients with HIV/AIDS at the Infectious Disease Ward of the Second People's Hospital in Chenzhou, Hunan Province. Data were collected through face-to-face in-depth interviews and analyzed using the thematic analysis method with NVivo 14. The criteria of credibility, dependability, transferability, and confirmability were applied to ensure rigor.

Seventeen participants (nine females, 52.9%; eight males, 47.1%) aged 22 to 74 years were interviewed. Three major themes emerged: (1) positive transformation and growth (psychological resilience, caregiving responsibility, caregiving capital, and family bonds); (2) advocacy for enhanced services (psychological support, HIV education and medication management, healthcare accessibility, respectful non-discriminatory care, and financial relief); (3) complex death perceptions (diverse attitudes towards death, anticipatory grief, and dignified dying).

The findings reveal that family caregivers of PLWHA experience positive personal growth, hold complex end-of-life perceptions, and advocate for service improvements. Healthcare policies and clinical practices are recommended to develop structured, family-centered support interventions, including professional psychological support, financial assistance, as well as integrated end-of-life care and death education for both PLWHA and their families.