Amyotrophic Lateral Sclerosis determination of expectations and caregiving burden of family members providing home care services

This study aims to determine the expectations of family members of ALS patients regarding home care services and their caregiving burden. This descriptive study was conducted between September 2023 and November 2024. The population of the study consisted of caregivers of all ALS-MNH patients registered with the Turkey ALS-MNH Association. No sampling was performed, and the entire population (N=700) was included in the study. A total of 260 participants took part. Data collection tools used were the 'Introductory Data Form' and the 'Zarit Caregiving Burden Scale.' The data obtained in the study were analyzed using IBM SPSS Statistics for Windows, Version 22.0 (SPSS INC., Chicago, IL, USA). Descriptive statistics, including frequency, percentage, mean, and standard deviation, were used in the analysis. For advanced analysis, independent samples t-test, ANOVA, and post-hoc Tukey and LSD tests were applied. According to the study findings, 57.7% of the caregivers were women, and 42.3% were men. The age distribution showed that 22.3% were between 20-30 years old, 25.0% were between 31-40 years old, 28.5% were between 41-50 years old, and 24.2% were 51 years and older. The mean score for the "perceived home care competency level" was 5.92±2.62 (Min=1; Max=10). The mean score for the total caregiving burden was 33.96±18.83 (Min=0; Max=87). When analyzing the distribution of caregiving burden among the caregivers, it was found that a large portion of the participants experienced mild and moderate caregiving burdens. Of the participants, 26.5% (69 individuals) were in the mild caregiving burden group, expressing fewer difficulties and less stress during the caregiving process. The largest group (37.3%, 97 individuals) experienced moderate caregiving burden. Correlation analysis between caregiving burden, age, and perceived home care competency level revealed no statistically significant relationships (p>0.05). It was vii concluded that caregiving burden is independent of age and perceived home care competency level. In terms of caregiving location, 69.2% of the caregivers provided care at the patient's home. The most common source of support during caregiving was other family members (89.8%). Regarding personal care, 56.5% of caregivers reported being able to allocate time for their own personal care, while 30.4% had to quit their jobs to provide care. Caregiving location created a significant difference in caregiving burden scores. Those providing care at the patient's home had lower caregiving burden scores compared to caregivers at healthcare institutions or other locations. This finding suggests that the caregiving location has an impact on caregiving burden, with those caregiving at home feeling a lower burden. Correlation analysis between caregiving burden, age, and perceived home care competency level also showed no statistically significant relationships (p>0.05), confirming that caregiving burden is independent of these variables. Keywords: Amyotrophic Lateral Sclerosis, Motor Neuron Disease,Home Care, Caregiving Burden