Peer-reviewed article
Beyond Survival: Parents' Experiences and Healthcare Professionals' Perspectives on Family-Centred Care for Children with Congenital and Acquired Heart Disease: A Qualitative Study.
Ünal EN, Mercan UB, Aypar E, Yalçın SS ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored how parents and healthcare professionals experience family-centred care for children with congenital and acquired heart disease. Researchers interviewed 39 parents and 6 healthcare professionals from tertiary cardiac centres to understand families' long-term needs beyond medical survival. Parents described caregiving as an evolving journey involving emotional adaptation, increasing competence, and changing family roles, while professionals highlighted the need to address developmental, psychosocial, nutritional and educational needs alongside cardiac treatment. The study found that heart disease in children should be understood as a long-term developmental and family experience, not just a medical condition. Integrated family-centred care combining developmental surveillance, caregiver empowerment, multidisciplinary collaboration and continuity is recommended.
Key points
- Parents experience caregiving as an evolving process characterised by uncertainty, emotional adaptation, increasing caregiving competence, and changing family roles
- Healthcare professionals identified unmet needs in developmental, psychosocial, nutritional, and educational support alongside specialist cardiac management
- Continuity of care and effective communication emerged as central to supporting families throughout the disease trajectory
- Parents develop into expert caregivers through progressive learning and adaptation over time
- Childhood heart disease should be understood as a long-term developmental and family experience, not only as a chronic medical condition
Limitations
The study was conducted at single and tertiary centres only, so findings may not represent experiences in other healthcare settings or countries. The small sample size (39 parents, 6 professionals) and predominance of mothers (32 of 39 parents) limits generalisation of the perspectives captured.
Abstract
Background: As survival increases among children with congenital and acquired heart disease (HD), understanding how families adapt to long-term care and family needs has become increasingly important. This study explored parents' experiences and healthcare professionals' perspectives to identify unmet needs and inform family-centred paediatric cardiac care. Methods: A qualitative study informed by a constructivist perspective was conducted. In-depth semi-structured interviews were conducted with 39 parents (32 mothers and 7 fathers) of young children with congenital or acquired HD recruited from a single tertiary paediatric cardiology centre, and six healthcare professionals recruited from three different tertiary centres. Data were analysed using inductive reflexive thematic analysis following Braun and Clarke's six-phase approach. Bronfenbrenner's Ecological Systems Theory was subsequently used as a sensitising framework to support interpretation of the findings. Results: Six interrelated themes emerged: (1) childhood HD as a long-term developmental journey beyond survival; (2) the impact on everyday life and family participation; (3) parents' progressive psychological adaptation; (4) the central role of communication and continuity of care; (5) parents' transformation into expert caregivers; and (6) healthcare professionals' support for integrated family-centred care. Parents described caregiving as an evolving process characterised by uncertainty, emotional adaptation, increasing caregiving competence, and changing family roles. Healthcare professionals similarly highlighted the need to address developmental, psychosocial, nutritional, and educational needs alongside specialist cardiac management. Conclusions: The findings suggest that childhood HD may be understood not only as a chronic medical condition but also as a long-term developmental and family experience. Parents' and healthcare professionals' complementary perspectives highlight the need for integrated family-centred paediatric cardiac care that combines developmental surveillance, caregiver empowerment, multidisciplinary collaboration, and continuity of care throughout the disease trajectory.