Investigation of the relationship between burden of care, social support, and quality of life in parents caring for pediatric dialysis patients

Abstract

Background and purpose: The objective of our study is to identify the social support requirements of parents caring for pediatric dialysis patients and evaluate how the burden of care impacts caregivers' quality of life. Methods: This study employed a descriptive cross-sectional study design. Data were obtained using the "Introductory Information Form," the "Zarit Burden of Caregiving Scale," the "World Health Organization Quality of Life Scale Short Form," and the "Multidimensional Perceived Social Support Scale." Results: The individuals reported some physical problems after starting caregiving; fatigue level increased and sleep duration reduced by 94.9 %. Participants reported some psychological problems such as increased desire to cry by 93,93.5 %, feeling of distress by 91.6 %, feeling of fear by 86 %. Social problems mentioned as relation with people decreased by 97.7 %, having financial problems reported by 76.7 %. The main burden of care for caregivers was 38.884 +/- 14.177, the perceived social support was 49.484 +/- 17.923, and the quality of life was 80.349 +/- 13.124. A statistically significant negative correlation (r = 0.303, p < 0.05) was found between burden of care and quality of life, positive correlation (r = 0.253) was observed between overall perceived social support and quality of life. Conclusion: Our results confirm that caregivers of pediatric patients have high care burden, low quality of life, and moderate social support. Implication for practice: Healthcare professionals should prioritize not only the well-being of patients but also parents, who play a crucial role in providing care at home. If the caregiver is overwhelmed, it is more probable that patients' needs will not be adequately met. (c) 2025 Elsevier Inc. All rights are reserved, including those for text and data mining, AI training, and similar technologies.