{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,23]],"date-time":"2026-06-23T17:48:11Z","timestamp":1782236891093,"version":"3.54.5"},"reference-count":33,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,6,23]],"date-time":"2026-06-23T00:00:00Z","timestamp":1782172800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"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>High-quality pediatric clinical research depends on effective and ethically robust recruitment, yet participation can be difficult for families of children with congenital heart disease (CHD), particularly in resource-constrained and culturally diverse settings. In western China, long-distance care-seeking, financial strain, family-centered decision-making, and evolving pediatric research protections may shape how caregivers understand and negotiate research participation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a qualitative descriptive study at a tertiary pediatric referral center in western China between June and December 2025. Caregivers of children with CHD participated in one-to-one semi-structured interviews. Interviews explored practical burden, perceptions of research and treatment, therapeutic misconception, trust, child assent, and strategies to improve recruitment. Audio-recordings were transcribed verbatim, anonymized, and analyzed using qualitative content analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thematic saturation was reached after 22 interviews. Four overarching themes were identified: (1) families' real-world constraints and the costs of research participation; (2) cognitive biases and tensions surrounding therapeutic misconception; (3) trust anchors and views on assent, insurance, and institutional protection under a changing policy context; and (4) strategies for optimizing recruitment. Caregivers commonly weighed research participation against treatment-related burdens, especially travel distance, accommodation costs, wage loss, and repeated hospital visits. Decisions were further shaped by collective family decision-making, culturally mediated concerns about bodily integrity, confusion between research and individualized treatment, and strong reliance on physician recommendation. Participation was generally more acceptable when procedures were non-invasive or integrated into routine care, whereas extra venipuncture was often resisted. Caregivers also emphasized the value of plain-language, visual, dialect-adapted, and child-friendly communication.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Caregivers' decisions about pediatric clinical research participation in western China are shaped by structural disadvantage, family-centered norms, therapeutic misconception, and trust in physicians and institutions. Recruitment should reduce burden, improve comprehension, support family communication, and accommodate children's developing role in research decisions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1843389","type":"journal-article","created":{"date-parts":[[2026,6,23]],"date-time":"2026-06-23T17:04:03Z","timestamp":1782234243000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Caregiver decision-making on pediatric research participation in congenital heart disease in western China: a qualitative study"],"prefix":"10.3389","volume":"14","author":[{"given":"Mou","family":"Peng","sequence":"first","affiliation":[{"name":"Department of Pediatric Cardiology, West China Second University Hospital, Sichuan University","place":["Chengdu, Sichuan, China"]},{"name":"Key Laboratory of Birth Defects and Related Diseases of Women and Children (Sichuan University), Ministry of 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