Utilization of health care for children with disabilities and evaluation of factors determining parental satisfaction

Objective: The purpose of this study was to determine the health burden of the individuals who applied to the Health Board of Recep Tayyip Erdoğan University Faculty of Medicine Education and Research Hospital and to determine the health burden, quality of life, expectations, needs and satisfied factors of the caregivers. Method: Sociodemographic data form, which were prepared by the researchers, Zarit Care Burden Scale, Maslach Burnout Scale, Family Quality of Life Scale were administered to 50 caregivers who were gives care for severely diasabled people under 18 years of age who were admitted to Rize Training and Research Hospital between January 2016 and January 2019. Results: Most of the children with severe disabilities were male, 6-10 years of age. It was determined that disability was diagnosed most frequently (70.8%) in the first year of life and the type of physical disability was most common (37.5%). Most of the caregivers were middle-aged women. It was found that the gender of the disabled individual was a girl and that the gender of the caregiver was a woman increased emotional burnout (p=0.01, p=0.02). There was a significant difference between the age of the disabled individual and the quality of life (p = 0.01). It was found that the personal success of the caregiver increased with the fact that the caregiving family member did not work in another job, the monthly income of the family increased, received home care services and the family lived in the village (p=0.02, p=0.04, p=0.02, p=0.03). There was no significant difference between disability type and clinical scales. There was a significant difference between caregiving burden and burnout living or quality of life (p = 0.02, p = 0.03). It was found that 72.9% of people receiving home care service were not satisfied with the service. It was seen that the most complaining part of the caregivers did not have information about the service, proper home care plans were not established, home care charges were insufficient and the transportation of the hospital to the house was difficult. Conclusion: This study, that we aimed to determine the healtcare for the children with disabilities and determining the satisfied factors of the parents, was vanishes that sociodemographic data were important in patient satisfaction and some of the data affected care burden, quality of life and burnout in various degrees during caregiving process.