ArticleInternational journal of qualitative studies on health and well-being2026
Balancing hope and uncertainty: family perspectives on lung transplantation in cystic fibrosis - a qualitative study.
Article in International journal of qualitative studies on health and well-being, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
purposeCystic 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.
methodEmploying 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.
resultsThe 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.
conclusionThis 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.
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