ArticleFrontiers in public health2026
Barriers to social participation among patients with hemophilia: a qualitative study using social-ecological systems theory.
Article in Frontiers in public health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: 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. Methods: 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. Results: 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. Conclusions: 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.
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