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Home Care Needs of Patients with Amyotrophic Lateral Sclerosis and Care Burden of Caregivers

Naile Alankaya and Ayfer Karadakovan

Background: Amyotrophic Lateral Sclerosis (ALS) is one of the chronic diseases that have an increasing prevalence, and ALS patients are dependent on others and nursed by their relatives at home rather than at a hospital. The aim of this study was to determine the home-care needs and life quality of the patients with amyotrophic lateral sclerosis, the care-burden and quality of life of caregivers, and the efficacy of nursing education given to caregivers in line with their needs.

Methodology: Thirty patients and thirty caregivers participated in the study. This study employed a single-group, quasi-experimental, pretest–posttest design with repeated measures. The data of the study were gathered through Daily Living Activities Scale (ADL Scale), Duke Health Profile (DUKE), Caregiver Burden Inventory (CBI), and a demographic data form. The educational needs of caregivers were determined through the use of the cards prepared by the method of card sorting. The relationship between the variables was assessed using Pearson’s correlation coefficient. Diagnostic group differences in variables were assessed using student t-test or one-way analysis of variance (ANOVA) and Post Hoc test. Cluster analysis was done in order to evaluate the questions on the cards.

Results: The mean CBI scores of the caregivers participated in the study were found between 60.13 ± 23.93 and 53.23 ± 25.12, and their mean DUKE scale scores were found between 18.07 ± 5.97 and 20.07 ± 4.07. The mean ADL scale scores of the patients and caregivers ranged from 20.13 ± 10.34 to 20.07 ± 4.07. 76.7% of the patients were male, 90.0% of the caregivers were female.

Conclusion: It was found that the training given on the subjects of patient care for which a need was felt by caretakers does not decrease the high burden of care.