The relationship between caregiving burden and resilience levels of family members who care for Duchenne Muscular Dystrophy patients

This research aims at putting forward the difficulties faced by family members who provide care to individuals with DMD as well as demonstrating the relationality between their maintenance loads and levels of resilience. In this research carried out by a quantitative research method; "Correlational Scanning" among scanning models was used. The sample of research is comprised of 70 family members who have agreed to participate voluntarily in the study and who are primarily responsible for the care of patients who receive services due to the diagnosis of Duchenne Muscular Dystrophy between 09.12.2019-12.03.2020 from the İzmir Branch of The Turkish Muscular Diseases Association and Izmir Tepecik Education and Research Hospital, which is affiliated with the Ministry of Health, from the Center for Muscle Diseases. All data were collected face-to-face. As data collection tools, sociodemographic information form, Caregiving Burden Scale, Caregivers' Burden Inventory, and Family Resilience Scale were used. Statistical analysis was conducted using the IBM SPSS Statistics 25.0 package program. Of the caregivers surveyed, 92.9% were female and 7.1% were male. All caregivers were parents. The average age of caregivers was 40.96 % 10,347. In our research; the level of care burden of family members who care for DMD patients has been found to be "Medium-Light". In terms of resilience levels; Family members who care for DMD patients can be said to be "resilient" individuals in general. In our research; there was no statistically significant relationship between the burden of care and resilience levels of family members who care for the DMD patient. However, a relationship in the negative direction was found between Caregivers Burden Inventory Developmental Burden subdimension and Family Resilience Scale Control sub-dimension; Emotional Burden sub-dimension, and Self-Competence and Control sub-dimensions. The findings highlight the need to demonstrate social service interventions and strategies for reducing the burden of care for family members who care for individuals with DMD and increasing their level of resilience. In this context; it is thought that the research will make significant contributions to the field. Key Words: Duchenne muscular dystrophy, family, parent, caregiver burden, resilience, family resilience