What parents teach us about congenital heart disease beyond the hospital
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What parents teach us about congenital heart disease beyond the hospital
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Parents' lived experiences shape this discussion on congenital heart disease (CHD), moving beyond clinical outcomes to explore the emotional and everyday realities of raising a child with a heart condition. Drawing on qualitative research, Dylan Nemes shares what families told his team about navigating diagnosis, surgery, the transition from hospital to home, and the long-term uncertainty that can follow.
The discussion highlights the importance of family-centred care, the lasting emotional impact of CHD on parents, and why supporting caregiver well-being is essential to children's health and development. It also examines the role of physical activity in the lives of children with CHD, where gaps in guidance can exist, and how listening to families can help improve care, communication, and support.
Learn more about the topics discussed in this episode:
Growing up with congenital heart disease: A qualitative research study of parents’ and clinicians’ experiences and perspectives, CJC Pediatric and Congenital Heart Disease
All episodes written and produced by the Research Communications team at BC Children's Hospital Research Institute.
Theme music: "Life Is Beautiful" by Anastasia Kir