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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.