Psychosocial Impact of Congenital Heart Disease on Families

Congenital heart disease (CHD) affects approximately 1 % of live births and presents families with a chronic trajectory of surgical procedures, medical follow-up and developmental uncertainty. Beyond the immediate physical challenges for the child, CHD exerts profound psychological and social pressures on parents, siblings and extended family. Common parental experiences include heightened anxiety, depressive symptoms and post-traumatic stress around surgery and diagnosis, often compounded by financial strain, work disruption and alterations to family roles. Children and adolescents with CHD may encounter social isolation, stigmatisation and academic disruption, which in turn affect family dynamics. Sibling relationships can be marked by jealousy or protective behaviours. Over time, many families display remarkable resilience, drawing on social support networks, adaptive coping strategies and professional psychosocial services. However, access to tailored interventions remains uneven, particularly in low- and middle-income settings. A holistic family-centred approach that integrates early psychosocial screening, targeted counselling and peer support can mitigate adverse outcomes, promote parental self-efficacy and improve long-term quality of life for all family members.

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Psychosocial Impact of Congenital Heart Disease on Families publication trend

The graph below shows the total number of articles in psychosocial impact of congenital heart disease on families across all publications each year (not limited to Nature Index journals).

Technical terms

Congenital heart disease (CHD): A structural abnormality of the heart or great vessels present at birth.

Psychosocial impact: The combined psychological and social effects of a health condition on individuals and their relationships.

Sense of coherence: An individual’s global orientation expressing confidence in life’s comprehensibility, manageability and meaningfulness.

Family stressor scale: An instrument designed to measure specific stress factors experienced by families of children with chronic illness.

Coping strategies: Behaviours and cognitive efforts employed to manage internal and external demands perceived as taxing or exceeding personal resources.

References

1. An examination of the psychosocial consequences experienced by children and adolescents living with congenital heart disease and their primary caregivers: a scoping review protocol. Systematic Reviews (2023).
2. Development and validation of a questionnaire to measure the congenital heart disease of children’s family stressor. Frontiers in Public Health (2024).
3. Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study. JAMA Network Open (2020).