# Balancing hope and uncertainty: family perspectives on lung transplantation in cystic fibrosis – a qualitative study

## TL;DR

This study explores the emotional and practical challenges faced by families of cystic fibrosis patients undergoing lung transplantation and highlights the need for better family-centered support.

## Contribution

The study introduces a qualitative exploration of family perspectives in CF lung transplantation, emphasizing unmet needs and suggesting improvements in supportive care.

## Key findings

- Family members experience a balance of hope and despair during the transplant waiting period.
- Post-transplant challenges include navigating recovery while finding emotional relief.
- Families report unmet informational and support needs before and after transplantation.

## Abstract

Cystic fibrosis (CF) is a genetic disease primarily affecting the lungs and digestive system. Individuals with advanced CF lung disease may require transplantation to survive. Family members often take on significant caregiving roles, facing both emotional and practical challenges throughout the transplantation process. This study explores the experiences of such family members to inform and improve supportive care practices.

Employing a naturalistic, exploratory design, this qualitative study used purposive sampling to recruit 19 family members of lung transplant recipients with CF. Data were collected through semi-structured interviews and analysed using reflexive thematic analysis.

The analysis identified three main themes and eight subthemes: (I) balancing hope and despair on the waiting list, (II) navigating challenges and finding relief after the transplantation, and (III) unmet support and informational needs before and after transplantation.

This study highlights the emotional burden and caregiving responsibilities shouldered by family members of individuals with CF who have undergone lung transplantation. The findings emphasise the importance of person- and family-centred interventions, including support for palliative care discussions. A more structured and inclusive framework is essential to address the often-overlooked needs of families throughout the transplantation process.