{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T05:05:46Z","timestamp":1789967146953,"version":"4.0.1"},"reference-count":29,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T00:00:00Z","timestamp":1789948800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100006407","name":"Natural Science Foundation of Henan Province","doi-asserted-by":"publisher","award":["252300421612"],"award-info":[{"award-number":["252300421612"]}],"id":[{"id":"10.13039\/501100006407","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1937214","type":"journal-article","created":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T04:28:48Z","timestamp":1789964928000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Barriers to social participation among patients with hemophilia: a qualitative study using social-ecological systems theory"],"prefix":"10.3389","volume":"14","author":[{"given":"Jing","family":"Zhang","sequence":"first","affiliation":[{"name":"Department of Hematology, Henan Cancer Hospital","place":["Zhengzhou, 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