Abstract
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.
Abbreviations
HIV, Human Immunodeficiency Virus; AIDS, Acquired Immune Deficiency Syndrome; PLWHA, People Living with HIV/AIDS; WHO, World Health Organization.
Data Sharing Statement
The datasets analyzed during the current study are available from the corresponding author on reasonable request.
Ethics Approval and Consent to Participate
All participants were explained the purpose of this study and provided their verbal informed consent, and participants were only included in this research if consenting to publication of anonymized responses. The Ethics committee of Beijing Ditan Hospital, Capital Medical University approved this study (including verbal informed consent process).
Acknowledgments
We would like to thank all the caregivers who voluntarily participated in this study and research assistants who performed the data collection.
Author Contributions
All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.
Disclosure
The authors report no conflicts of interest in this work.