Abstract:

This study was conducted in order to identify the difficulties that family members who take care of Duchenne Muscular Distrophil (DMD) individuals face in the process of care, as well as the relationship between the care burden and the family age-related levels. In this research conducted by the Nicel research method, the "Relational Scanning Model" was used from the scanning models. The sample of the research is made up of 70 family members from the Center for Muscle Diseases of the İzmir Reactive Education and Research Hospital associated with the Ministry of Health and from the Association of Muscle Diseases of the İzmir Branch from 09.12.2019-12.03.2020 dates, who are first-degree responsible for patients who are diagnosed with DMD cause and who agree to participate voluntarily in the research. As data collection tools, the sociodemographic information form, the maintenance burden scale, the burden inventory of the caregivers, and the family disability scale have been used. The statistical analysis was done using the IBM SPSS Statistics 25.0 package program. In our study, it has been found that the level of care burden of family members who take care of the DMD patient is "Middle-Less". In terms of age levels, it can be said that the family members who take care of the DMD patient generally are "need". In our study, there was no statistically meaningful relationship between the care burden of the family members who care for the DMD patient and the levels of family infertility. However; The burden of the caregiver’s inventory has been detected in the negative direction between the developmental burden subdimensional and the family disability scale control subdimensional; the emotional burden subdimensional and the selfishness and control subdimensional. The findings obtained in the study highlight the need for social services interventions and strategies to reduce the care burden of family members who take care of individuals with DMD and increase their levels of disability. In this context, it is believed that the research will provide significant contribution to the area.

Keywords:

Abstract:

This research was carried out in order to reveal the difficulties faced by family members who care for individuals with Duchenne Muscular Dystrophy (DMD) in the process of caregiving, as well as the relation between caregiver burden and family resilience levels. In this research that has been carried out by quantitative research method, "correlational study model" is used. The research sample includes 70 family members who are primarily responsible for the care of patients receiving treatment for DMD diagnosis and agreed voluntarily to participate from the Neuromuscular Disorders Center of İzmir Tepecik Training and Research Hospital affiliated to the Ministry of Health, and the Izmir Branch of the Neuromuscular Disorders Association of Turkey between 09.12.2019-12.03.2020. Sociodemographic Questionnaire, Caregiver Burden Scale, Caregiver Burden Inventory and Family Resilience Scale are used as data collection tools. Statistical analyses are performed using IBM SPSS Statistics 25.0 package program. In the research, caregiver burden of family members who care for a DMD patient is found to be "Moderate-Mild". In terms of resilience levels, it can be said that family members who care for DMD patients are generally “resilient” individuals. The research found no statistically significant relationship between caregiver burden of family members who care for DMD patients and their family resilience levels. However, a negative relationship is found between the Caregiver Burden Inventory Developmental Burden Subscale and Family Resilience Scale Control Subscale; Emotional Burden Subscale and Self-efficacy and Control Subscale. The research findings highlight the need for social work interventions and strategies to reduce the caregiver burden of family members who care for individuals with DMD and to increase their level of family resilience. In this context, the research is thought to make significant contributions to the field.