Its relationship with care load,perceived social support and quality of life in family members giving primary care to amiotrophic lateral sclerosis (ALS) patients

This study aimed to examine the relationships between caregiving burden, perceived social support and quality of life of family members who provide primary care to an ALS patient. It was investigated how the caregiving burden and quality of life of family members who provide primary care to an ALS patient are affected by perceived social support, ALSFRS-R score, and the characteristics of the ALS patient and the caregiver. The study is an analytical cross-sectional type study. The population of the research consists of family members who care for ALS patients. The sample of the study consisted of 118 caregivers of the ALS MNH Association. The data of the study were collected using the sociodemographic data form, ALSFRS-R, Care Burden Scale, Multidimensional Perceived Social Support Scale and SF-12 Quality of Life Scale. Data were analyzed with SPSS 27.0 program. In data analysis, percentage, mean, standard deviation, minimum and maximum values, chi-square test, t test in independent groups, one-way analysis of variance (ANOVA), Tukey, Mann Whitney U, Kruskal Wallis, Spearman and Pearson correlation tests and linear regression analysis. Was used. The cutoff value for statistical significance was p<0.05. In the study, the mean score of the family members caring for an ALS patient on the Caregiving Burden Scale was 43.0±13.9, the mean total score on the Multidimensional Perceived Social Support Scale was 51.7±19.6, and the mean score on the physical component of the SF-12 Scale was 40.5±8. .5 and the mean of the mental component of the SF-12 Scale was found to be 35.5±9.5. According to the findings, the ALSFRS-R score, the caregiver living in the same house with the ALS patient, the caregiver having difficulty in communicating with the ALS patient, and the caregiver having difficulty in caring for the ALS patient significantly affect the caregiving burden of the family members who provide primary care to the ALS patient. The number of caregivers is high, the caregiver is female, the caregiver lives in the same house with the ALS patient, the number of people in the patient's household, the time since the patient was diagnosed with ALS, the patient's perception of his/her income as medium or higher, the caregiver having difficulty in communication, the patient's employment, the patient's perception of health as moderate or above, ALSFRS-R score, MSPSS total score and caregiving burden scale score significantly affect the quality of life of family members who provide primary care to an ALS patient. Since it has been found that the quality of life decreases as the perceived care burden of family members caring for ALS patients increases, it has been suggested that efforts be made to reduce the perceived care burden of caregivers and to increase social support for this purpose.