Investigation of the effect of the care burden of parents with hemophilia children on perceived social support and life quality

Investigation of the Effect of the Care Burden of Parents With Hemophilia Children on Perceived Social Support and Life Quality Aim: The study was carried out to evaluate the effect of care burden of parents of children with hemophilia on perceived social support and quality of life. Material and Method: Sample selection wasn't made in the study, and it was done descriptively with 44 parents who had a child with hemophilia that applied to the Turgut Özal Medical Center Pediatric Oncology/Hematology Polyclinic between July 2019 and June 2020.The data were collected using "Parental Descriptive Information Form", "WHOQOL-8.TR. World Health Organization Quality of Life Survey", "Perceived Multidimensional Social Support Scale", "Zarit Care Burden Scale".For the course of the trainings, the number, percentage are examined in terms of perceived social progress, social aspects, while the perceived social aspects are examined in terms of interest and support. Results: It was observed that 18.2% of the children with hemophilia had pain, 13.6% had bleeding, 43.2% were admitted to the hospital once a month. It was found that 68.2% of the caregivers were women, 65.9% weren't working, 75% had moderate economic status. It was observed that the quality of life decreased as the care burden increased. It was determined that 86.4% of the caregivers didn't receive any support, 70.5% of the caregivers brought a financial burden. It was observed that the quality of life of parents whose social support increased. Conclusion: The study, increased care burden of parents lack of social support were found among the factors affecting quality of life. Nurses can inform parents, provide professional support to parents and be recommended. Keywords: Care burden, parents, hemophilia, social support, quality of life