“I Wish No Child Died Like This”: Analyzing Responses from Parents of Children Who Died of Complex Congenital Heart Disease in Pediatric Intensive Care Unit

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Abstract
Background: The death of a child due to complex congenital heart disease (CCHD) in pediatric intensive care units profoundly affects families, often resulting in lasting grief and emotional distress. Despite advancements in pediatric palliative care (PPC), significant gaps persist in communication and end-of-life (EoL) planning. This study explores the experiences and perceptions of bereaved parents to identify areas for improvement in PPC delivery. Methods: A qualitative phenomenological design was used to analyze the lived experiences of 18 bereaved parents whose children died from CCHD at a tertiary cardiac center. Semi-structured telephone interviews were conducted, incorporating five open-ended questions. Data were analyzed inductively using Colaizzi’s method to identify recurring themes and subthemes. Results: Four key thematic areas emerged: communication issues, the parental role, child care, and bereavement support. Parents highlighted inconsistent communication, lack of preparedness for EoL decisions, and emotional isolation as major challenges. Positive experiences often involved compassionate healthcare providers and structured psychological support. A significant proportion of parents identified family support and faith as key coping mechanisms, while others expressed dissatisfaction with post-mortem follow-up and absence of long-term bereavement care. Conclusions: Bereaved parents’ experiences underscore the need for improved communication strategies, greater parental involvement in care, and enhanced bereavement support. Integrating structured decision-making pathways early in the care trajectory may help mitigate parental distress and improve the quality of EoL experiences for children with CCHD.
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