Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS

Purpose: Informal caregivers are defined as families or close friends of patients, which take considerable responsibilities for providing care to people living with HIV/AIDS (PLWHA). Although there have been a number of studies in caregiver of PLWHA, research studies that sought to quantify the effects of informal caregiving for the caregivers failed to successfully provide empirical understanding of the nature of caregiving experience. Therefore, this study adopted a qualitative approach to explore the experiences and feelings of caregivers of PLWHA during the long-term care process. Methods: The qualitative study was conducted in August 2023 in Beijing, China. Data were collected through individual in-depth semi-structured interviews with informal caregivers of PLWHA. Theme analysis was used to identify themes from the interview transcripts. Results: A total of 21 participants were recruited into our study, 16 were family members of PLWAHA, and 5 were homosexual lover or close friend of PLWHA. Three major themes and ten sub themes were identified by thematic analysis: (1) care burden experience (including 5 sub-themes: negative emotional experience, psychological burden, economic burden, physical health loss and limitation of social interaction); (2) benefit findings from care (including 3 sub-theme: positive emotional experience, perceived social support, health promotion); (3) Demands for caregiving capacity (including 2 sub-theme: inadequate caregiving capacity and inadequate psychological comfort capacity). Conclusion: This qualitative study provides a comprehensive exploration of the experiences faced by informal caregivers of PLWHA in China, uncovering the complex spectrum of psychological, physical, social, and economic challenges inherent in their caregiving roles, while predominantly challenging, caregivers also reported personal growth, increased social support, and emotional fulfillment. The research results could help in developing effective interventions to reduce the caregiver burden and improve their mental health. Keywords: people living with HIV/AIDS, caregiver, care experience, care burden, benefit findings, qualitative research