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

## TL;DR

Parents of children with heart failure make complex decisions about transplants and need better support and information.

## Contribution

The study identifies key factors and needs in parental decision-making for pediatric heart failure and transplant.

## Key findings

- Parents prioritize survival and quality of life when making decisions.
- Emotional and social support are crucial for managing stress and decision-making.
- Multimodal educational tools are preferred to help clarify goals and provide information.

## Abstract

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.

After engaging with 19 parents of children who had undergone or are listed for heart transplant, we concluded that survival and quality of life primarily drive their medical decision making. They require like‐peer education, extensive emotional/social support, and would benefit from decision support tools to clarify their goals.