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Waiting for lung transplantation: family experiences of relocation
Carol Stubblefield1, Ruth L Murray
1Jewish Hospital College of Nursing and Allied Health, St. Louis, MO, USA.
Insights
Pediatric lung transplant waiting lists require families to relocate near the transplant center. Parents experienced significant life changes, including emotional and financial challenges, while adapting to a new support system.
Area of Science:
- Pediatric Healthcare
- Transplant Medicine
- Psychosocial Support
Background:
- Pediatric lung transplantation is a critical intervention for children facing imminent death.
- Waiting list candidates require constant proximity to transplant centers.
- Relocation presents unique challenges for pediatric transplant families.
Purpose of the Study:
- To explore the lived experiences of parents who relocated with their children for pediatric lung transplantation.
- To identify the psychosocial and practical challenges faced by these families.
- To inform nursing care and resource allocation for transplant programs.
Main Methods:
- Qualitative descriptive study.
- Semi-structured interviews with six parents who relocated for their child's transplant.
- Thematic analysis of interview data.
Main Results:
- Parents described 'experiencing relocation' as a major category.
- Key themes included putting life on hold, diminished emotional support, establishing new support networks, role changes, financial worries, and adapting to the situation.
- Families developed coping strategies to manage the relocation.
Conclusions:
- Relocation for pediatric lung transplantation significantly impacts family dynamics and well-being.
- Understanding these parental experiences is crucial for providing tailored nursing care.
- Effective resource allocation in transplant programs should consider the needs of relocating families.
Abstract:
The waiting period for pediatric lung transplantation begins when it is determined that a child's only choice, other than transplantation, is death within 1 year. Children who are on the waiting list must always be within beeper range of the transplant center. Six parents who temporarily relocated with their children to be closer to the transplant center shared their perceptions of the experience. Data analysis led to the formulation of a descriptive category, experiencing relocation, and six related themes--putting life on hold, experiencing diminished emotional support, establishing new sources of support, undergoing role change, worrying about money, and making the best of the situation. Recognizing the unique needs of parents who must relocate for a child's transplant supports the delivery of individualized nursing care and the effective allocation of program resources.