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Updated: Dec 11, 2025
Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Diagnosis to death: family experiences of paediatric heart disease
Kathryn Neubauer1, Erin P Williams2,3, Pamela K Donohue4
1Department of Pediatric Palliative Medicine, The Johns Hopkins Children's Center, Baltimore, USA.
Insights
Parents navigating childhood congenital heart disease (CHD) mortality experience six key transitions. These include prenatal diagnosis, adapting to illness, and post-death adjustment, offering new support insights.
Area of Science:
- Pediatric Cardiology
- Childhood Mortality Research
- Parental Support Systems
Background:
- Congenital heart disease (CHD) is a major cause of child mortality in the U.S.
- Limited research exists on parental experiences from diagnosis through a child's death from CHD.
- Adult heart failure transitions offer a framework for understanding illness progression.
Purpose of the Study:
- To explore parental transitions during a child's life and death due to CHD.
- To determine if established adult illness transitions apply to parents of children with CHD.
- To identify novel transitions specific to this population.
Main Methods:
- Qualitative study utilizing semi-structured interviews.
- In-depth interviews with parents whose children died from CHD.
- Thematic analysis to identify and categorize parental experiences.
Main Results:
- The four transitions identified in adults with heart failure were present in parents of children with CHD.
- Two novel transitions were identified: 'Prenatal diagnosis' and 'Adjustment after death'.
- A total of six distinct transitions were identified in the parental journey.
Conclusions:
- The established four transitions for adult heart failure are applicable to parents of children with CHD.
- The addition of 'Prenatal diagnosis' and 'Adjustment after death' provides a more comprehensive model.
- Identifying these six transitions can improve support for families affected by childhood CHD.
Abstract:
CHD remains one of the leading causes of mortality of children in the United States. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) learning the diagnosis, 2) reframing the new normal, 3) taking control of the illness, and 4) understanding death is inevitable. In our qualitative study, we performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. We found that these four transitions were present in the parents we interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition ("Prenatal diagnosis") and one that occurred after the final Jones et al transition ("Adjustment after death"). It is our hope that identification of these six transitions will help better support families of children with CHD.
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