Barriers to social participation among patients with hemophilia: a qualitative study using social-ecological systems...

Social participation greatly determines health-related quality of life, while people with hemophilia face severe social engagement restrictions. Current studies only explore such barriers from single dimensions including joint function, employment and mental distress, lacking a comprehensive social-ecological perspective. Based on social-ecological systems theory, this study systematically analyzes multi-level barriers to social participation among Chinese hemophilia patients to support integrated nursing intervention development.

A descriptive phenomenological qualitative design was employed. Purposive and snowball sampling strategies were used to recruit 15 adults with hemophilia from the hematology department of a tertiary hospital in China between February and July 2026. Individual semi-structured in-depth interviews were conducted using a topic guide informed by the three-system framework (micro-, meso-, and macro-). Data were analyzed using Colaizzi's seven-step method, with two researchers independently coding and reaching consensus through discussion. NVivo 14 was used to facilitate data management.

Nine themes and 20 sub-themes were identified across the three system levels. Micro-system barriers comprised: (1) progressive joint damage and functional limitations; (2) psychosocial distress and maladaptive coping; and (3) inadequate disease knowledge and self-management deficits. Meso-system barriers comprised: (4) catastrophic medication costs and family resource depletion; (5) family caregiving deficits and role overload; and (6) employment exclusion and social network contraction. Macro-system barriers comprised: (7) insurance coverage gaps and treatment access barriers; (8) geographic disparities in healthcare access; and (9) social stigma and inadequate institutional support. Critically, barriers across the three levels did not operate in isolation but interacted to produce a cumulative, compounding deprivation of social participation.

Social participation barriers among people with hemophilia represent a complex, multi-layered phenomenon embedded within the micro-, meso-, and macro-systems of the social ecology. Nursing care should shift from a biomedical-only paradigm toward an integrated model: strengthening symptom management and psychological empowerment at the micro-level, promoting family enablement and social network reconstruction at the meso-level, and advancing policy advocacy and public education at the macro-level.