Research Article  |   March 2017
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
Author Affiliations
  • Stephanie Johnson, MHS, OTR/L, is Assistant Professor, Department of Occupational Therapy, College of Allied Health Sciences, Augusta University, Augusta, GA; Sjohnson8@augusta.edu
  • Bryant Alonso, OTR/L, is Occupational Therapist, Valdosta Pediatric Therapy Services, Valdosta, GA
  • Katie Faulkner, OTR/L, is Occupational Therapist, Baltimore Orthopaedics and Rehabilitation, Charleston, SC
  • Haley Roberts, OTR/L, is Occupational Therapist, Columbus Regional Health: Northside Medical Center, Columbus, GA
  • Britton Monroe, OTR/L, is Occupational Therapist, University Health System, Augusta, GA
  • Leigh Lehman, PhD, OTR/L, is Associate Professor, Department of Occupational Therapy, College of Allied Health Sciences, Augusta University, Augusta, GA
  • Pamalyn Kearney, EdD, OTR/L, is Associate Professor, Department of Occupational Therapy, College of Allied Health Sciences, Augusta University, Augusta, GA
Article Information
Health and Wellness / Mental Health / Neurologic Conditions / Special Issue
Research Article   |   March 2017
Quality of Life Perspectives of People With Amyotrophic Lateral Sclerosis and Their Caregivers
American Journal of Occupational Therapy, March 2017, Vol. 71, 7103190010p1-7103190010p7. doi:10.5014/ajot.2017.024828
American Journal of Occupational Therapy, March 2017, Vol. 71, 7103190010p1-7103190010p7. doi:10.5014/ajot.2017.024828
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.