Quality of life perspectives of people with amyotrophic lateral sclerosis and their caregivers

Stephanie Johnson, Bryant Alonso, Katie Faulkner, Haley Roberts, Britton Monroe, Leigh Lehman, Pamalyn Kearney

Research output: Contribution to journalReview articlepeer-review

2 Scopus citations

Abstract

This study explored differences in perspectives on quality of life (QOL) between people affected by amyotrophic lateral sclerosis (ALS) and their caregivers. QOL is often thought of as related to physical limitations, without consideration of other factors (e.g., cognitive, emotional) that may be stronger predictors of QOL in people with long-term degenerative diseases. Because QOL is complex and influenced by multiple factors, people with ALS and their caregivers may have different perspectives on what constitutes QOL. This study investigated potential discrepancies in QOL perspectives between people with ALS and their caregivers. Thirty dyads from the Augusta University Health ALS Clinic completed a measure of QOL, and we compared the results and identified patterns. The most prominent finding was that members of the dyads misunderstood the mental experiences of one another.

Original languageEnglish (US)
Article number024828
JournalAmerican Journal of Occupational Therapy
Volume71
Issue number3
DOIs
StatePublished - May 1 2017

ASJC Scopus subject areas

  • Occupational Therapy

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