Functionality and quality of life of people with amyotrophic lateral sclerosis and perception of overload and social support of informal caregivers
DOI:
https://doi.org/10.11606/issn.2317-0190.v27i3a172216Keywords:
Amyotrophic Lateral Sclerosis, Quality of Life, Caregivers, Social Support, Rehabilitation CentersAbstract
Objective: This research aims to measure the functionality and quality of life of Amyotrophic Lateral Sclerosis (ALS) patients and provide evidence about the potential excessive burden of care generated for their informal caregivers. Method: This is a quantitative, exploratory and descriptive study, and cross sectional investigation. The study sample was 24 participants, being 12 patients with ALS and 12 informal caregivers, recruited at a Specialized Rehabilitation Center. Individuals with ALS were administered the following instruments: Demographic Information Questionnaire; Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R); Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) and caregivers: Informal Caregiver Burden Assessment Questionnaire (QASCI); Medical Outcomes Study Social Support Survey (MOS). Results: Strong correlations were found between ALSFRS-R and ALSAQ-40 (r = - 0.709 p < 0.010), between the Daily Living Activities domain and ALSFRS-R (r = - 0.877 p < .001), between the domains of QASCI and MOS, Efficiency and Control Mechanism and material support (r = - 0.598 p < 0.040), Role and Family Satisfaction and Affective Support (r = - 0.604 p < 0.037), and Family Support and Interaction Positive Social (r = - 0.683 p < 0.014). Conclusion: The functionality and quality of life of the patient with ALS influence the provision of care, the perceived social support was a moderating variable of the caregivers' stress burden.
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