Caregiver decision-making on pediatric research participation in congenital heart disease in western China: a qualitative study.
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.
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.
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.
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.
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.
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.
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.
Authors
Peng Peng, Ding Ding, Li Li, Shao Shao, Cui Cui, Zhao Zhao, Hua Hua, Zhou Zhou, Wang Wang, Li Li, Yan Yan
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