REHABDATA Detailed Record Quality of life perspectives of people with amyotrophic lateral sclerosis and their caregivers.
American Journal of Occupational Therapy (AJOT). Volume 71(3), Pgs. 7103190010.
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What's this? Author(s): Johnson, Stephanie
Study explored differences in perspectives on quality of life (QOL) between people affected by amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive neurodegenerative disease that results in muscle atrophy, loss of voluntary muscle control, changes in reflexes, speech and swallowing difficulties, and cognitive challenges. Because QOL is complex and influenced by multiple factors, people with ALS and their caregivers may have different perspectives on what constitutes QOL. Thirty patient-caregiver dyads completed the Short Form–12 Health Survey Questionnaire Version 2, a measure of QOL, and the results were compared and identified patterns. The results revealed perspective differences and similarities within the dyads. In terms of physical condition, patients with ALS and their caregivers gave similar ratings of each other’s status. However, regarding mental, social, and emotional well-being, patients with ALS and their caregivers did not have accurate views of the other’s mental state. This finding highlights the importance of clinicians emphasizing communication between patients and their caregivers in relation to each other’s emotional well-being, including spirituality, social wellness, and overall mental wellness.
CAREGIVERS, NEUROMUSCULAR DISORDERS, OCCUPATIONAL THERAPY, QUALITY OF LIFE.
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Johnson, Stephanie, Alonso, Bryant, Faulkner, Katie, Roberts, Haley, Monroe, Britton, Lehman, Leigh, Kearney, Pamalyn. (2017.)
Quality of life perspectives of people with amyotrophic lateral sclerosis and their caregivers.
American Journal of Occupational Therapy (AJOT).
(3), Pgs. 7103190010. Retrieved 4/6/2023, from REHABDATA database.
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