Decision Making in Pediatric Heart Failure and Transplant: A Qualitative Analysis of Parental Decision Making

Parents of children with advanced heart failure face complex, emotionally charged decisions regarding mechanical circulatory support (MCS) and heart transplantation. Understanding their informational needs and decision-making factors is crucial to optimizing their education and providing support.

We conducted a qualitative study with parents of children (< 18 years) who are listed for or who underwent heart transplantation within the past 3 years. Participants engaged in focus groups or interviews exploring informational needs, decision-making perceptions, influencing factors, and educational tool preferences. Transcripts underwent thematic coding and analysis.

Nineteen parents participated. Four major themes emerged: (1) Informational Needs-Parents sought medical facts from providers and valued lived experiences from like-peers for practical insights. (2) Decision Making Perception-Most viewed transplant as the only viable option; others viewed it as a genuine decision; all desired autonomy in decision making. (3) Decision Factors-Survival and quality of life were primary drivers; external stressors (financial, logistical, emotional) were seen as inevitable consequences rather than determinants. (4) Parental Distress-Emotional burden was substantial, with parents emphasizing the need for better preparation and mental health support. Parents preferred a multimodal educational tool incorporating digital and physical resources, visual aids, and customizable journey maps.

These findings highlight the significance of peer support groups, the role of social support in managing external stressors, the potential of decision support tools for families to clarify their goals.