Exploring palliative care needs of advanced AIDS patients in China: insights from a descriptive phenomenological study.

Abstract

Background: HIV is still an incurable disease, causing many problems in the daily lives of patients and affecting their overall quality of life. Previous studies have shown that advanced AIDS patients have more serious physical, psychological, social, and economic problems than HIV patients and that advanced AIDS patients have more unmet needs at this time. The main objective of this study is to better understand the needs of late-stage AIDS patients and to develop targeted palliative care services for them.

Method: Descriptive phenomenological methods were used. Advanced AIDS patients were selected using purposive sampling in a tertiary infectious disease hospital. Participants (n = 15) were interviewed in one-to-one semi-structured interviews between March and May 2024. Data saturation was reached after the 15th interview, as no new themes emerged. A phenomenological thematic analysis method was used to analyze the interviews.

Results: The following four themes emerged and are reported in this study: (1) Physiological needs: Participants often reported that chronic pain and fatigue were the main concerns and needed help from daily activities. (2) Information needs: Patients emphasized the gap in understanding treatment plans and drugs, hoping to get clear guidance from medical service providers. (3) Psycho-spiritual needs: Participants expressed their desire for respect, friendship, and dignity, as well as their fear of future uncertainty and humiliating experiences. (4) Social support needs: economic burden, limited nursing continuity, and social discrimination are the outstanding challenges faced by participants.

Conclusion: This is the first study to comprehensively examine the palliative care needs of advanced AIDS patients in China. The findings underscore the urgent need for culturally sensitive, policy-driven interventions to address these multifaceted needs. Tailored strategies can significantly enhance the quality of life for this vulnerable population and provide actionable insights for healthcare policymakers to bridge existing care gaps.