Exploring social alienation experiences among people living with HIV and their spouses: a qualitative study in mainland China

Background Social alienation is an important psychosocial challenge for people living with HIV and has been linked to poorer mental health and reduced quality of life. While HIV-related stigma may affect both patients and their spouses, few qualitative studies have examined social alienation from the perspectives of both groups in mainland China. This study explored the social alienation experiences reported by people living with HIV and their spouses to inform family-centered support interventions. Methods This study adopted a qualitative descriptive design guided by a descriptive phenomenological approach to explore the social alienation experiences of people living with HIV and their spouses. Participants were selected using purposive sampling at a tertiary hospital in mainland China. One-to-one semi-structured interviews were conducted separately with each member of 13 matched couples between March and April 2026. Data analysis followed an inductive approach consistent with descriptive phenomenology. Results In total, 26 participants (13 matched couples), including 13 people living with HIV and their 13 spouses, were recruited. Three themes and eight subthemes were identified: (1) Manifestations of social alienation (accumulation of negative emotions; active avoidance; internalized stigma, self-doubt, and relational detachment); (2) Concealed living and relational alienation under illness-related stigma (concealment; family spillover of stigma); and (3) Expectations of support (seeking understanding; knowledge needs for disease management and self-empowerment; accessible and affordable healthcare resources). Conclusion The findings suggest that both people living with HIV and their spouses experience social alienation. Family-centered and culturally responsive interventions may help address the psychosocial needs of both groups and improve their well-being.