Navigating the Lung Transplantation Journey: A Qualitative Study of the Caregivers’ Experiences and Needs

Abstract

Caregiver; Communication; Experiences

Cuidador; Comunicación; Experiencias

Cuidador; Comunicació; Experiències

Introduction The burden of supporting patients undergoing lung transplantation often falls on family members, who become primary caregivers. This role significantly impacts their lives, leading to changes in family roles, physical and emotional exhaustion, and substantial psychological strain. This study explores the experiences, needs, and expectations of family members throughout the lung transplantation process. Materials and Methods A qualitative study with a descriptive phenomenological approach was conducted between 2018 and 2022 at Vall d’Hebron University Hospital. In-depth interviews were performed with 31 adult relatives of lung transplantation patients. Data were analyzed using Colaizzi’s method, identifying central themes and subthemes to better understand participants’ experiences. Results Interviewees report having experienced changes in their family and social roles, attending the needs of others more than their own. Although exhausted on many occasions, they are surprised by how they can muster their energy at critical moments. Anxiety and fear are present throughout the process. The future generates uncertainty. The support of their relatives and health staff is crucial for them, but they believe that social and financial support should be increased. Conclusion Family caregivers of lung transplant recipients face significant challenges, including role changes, psychological distress, and emotional ambivalence, which align with the transitional experiences described in Meleis’ theory of transitions. Effective support systems, including reliable information, robust social networks, and financial assistance, are crucial for helping caregivers adapt to these demands. Targeted psychological interventions and tailored nursing strategies can mitigate stress, improve caregiver well-being, and enhance the overall success of the transplantation process. This study highlights the importance of integrating caregiver-centered approaches into healthcare practices to address the multidimensional needs of this vulnerable population.