Impact of Care Burden on the Quality of Life in Families of Children with Solid-Organ Transplants.

OBJECTIVES: This study aimed to investigate the effects of care burden on the quality of life of parents who have children who have undergone solid-organ transplant.

MATERIALS AND METHODS: The research was conducted as a descriptive correlational study. Researchers collected data through face-to-face interviews with parents of patients registered in the Solid Organ Transplantation and Pediatric Nephrology outpatient clinic of Akdeniz University Hospital. The data collection tools included a Descriptive Information Form, the SF-36 Quality of Life Scale, and the Zarit Caregiver Burden Scale. Data were analyzed using descriptive statistics, percentages, Pearson correlation analysis, t tests, analysis of variance, and the Kruskal-Wallis test.

RESULTS: Parents in the study had a mean age of 32.12 ± 5.42 years; 100% of the parent participants were mothers. Among children who received transplants, 55.8% were boys. Solid-organ transplant types included 86% with liver transplants and 6.9% with kidney transplants. The mean burden of care score of parents was 38.72 ± 7.12, and the mean quality of life score was 28.14 ± 1.49. A significant negative correlation was found between the care burden of parents and their quality of life.

CONCLUSIONS: Families of children with solid-organ transplants face a significant care burden, which negatively affects their quality of life. The burden extends beyond parents to siblings and the overall family dynamics. Health care providers should recognize and address this burden by implementing comprehensive support services tailored to the specific needs of these families. A multidisciplinary approach involving various professionals is necessary to provide effective support. Interventions such as respite care, support groups, counseling services, and educational programs can help alleviate the burden and improve the overall well-being of these families. Future research should aim to develop targeted interventions and explore the experiences of these families in more depth.