What question did this study set out to answer?

The study aims to explore the lived experiences of family caregivers of PLWHA regarding their psychosocial transformation, advocacy, and end-of-life perceptions during hospitalization.

May 28, 2026Open Access

Navigating Adversity: Psychosocial Transformation, Service Advocacy, and End-of-Life Perceptions Among Family Caregivers of PLWHA During Inpatient Treatment in Hunan, China

Key Points

The study aims to explore the lived experiences of family caregivers of PLWHA regarding their psychosocial transformation, advocacy, and end-of-life perceptions during hospitalization.
Descriptive qualitative design with 17 family caregivers interviewed.
Data collected through face-to-face in-depth interviews.
Thematic analysis method employed using NVivo 14.
Participants reported positive transformation in psychological resilience and caregiving responsibility.
Caregivers advocated for enhanced services, including psychological support and financial relief.
End-of-life perceptions were complex, with diverse attitudes towards death and anticipatory grief.

Abstract

Background: 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. Methods: 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. Results: 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). Conclusion: 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. Keywords: HIV, AIDS, family caregivers, qualitative research, delivery of healthcare

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