Vulnerable transitions in family caregiving after treatment of congenital heart disease in children: a qualitative journey-mapping study

Congenital heart disease (CHD) affects about 9 per 1000 live births worldwide,1 and care often continues after treatment as families manage medicines, monitor symptoms, support daily activities, and attend follow-up. Qualitative studies have described caregivers’ uncertainty and responsibility after paediatric cardiac surgery,2,3 but little is known about how this work changes across care settings or whether difficulties cluster at specific transitions. Patient journey mapping relates people’s experiences to stages, transitions, and contacts with services.4,5 We used this approach to examine changes in family caregiving after transcatheter intervention or cardiac surgery and to identify where cardiovascular nursing support may be most useful. This qualitative descriptive study took place from April 2025 to April 2026 at a national-level regional paediatric medical centre in western China. Maximum-variation purposive sampling6 from follow-up records recruited 30 primary caregivers of children treated by transcatheter intervention or cardiac surgery, with variation in child age and clinical complexity, residence, caregiver role, and follow-up status. Interrupted follow-up meant that scheduled reviews had stopped, but registry contact remained possible for research. Three health professionals trained in qualitative interviewing, none of whom had a clinical relationship with participants, conducted face-to-face semi-structured interviews lasting 45–60 min. Interviews were audio-recorded, transcribed verbatim in Chinese, de-identified, and checked and confirmed by participants.