Quality of life measures for aphasia: Patient and caregiver perspectives
The purpose of this study was to compare two quality of life measures designed for persons with aphasia. Five persons with chronic expressive aphasia and their nominated family member/caregiver participated in this study. A preliminary interview was conducted with each participant. The Stroke and Aphasia Quality of Life Scale (SAQOL-39) and Assessment for Living with Aphasia (ALA) were then administered. Assessments were administered to family members under two conditions: (1) how they would rate the PWA’s quality of life and (2) how they thought the PWA would rate themselves. A brief post-assessment interview was then given to help establish the validity of the quality of life assessments given. The reported outcomes on individual measures for each participant were compared against outcomes on the other (i.e., SAQOL-39 vs. ALA). Outcomes reported by the PWA were then compared to those reported by their family member. Responses from the preliminary interviews were analyzed to establish common themes, as well as to aid in establishing validity of the quality of life assessments used. Results indicated substantial variances existed between assessment outcomes and PWAs vs. family members. The dual presentation (i.e., “as” PWA and “for” PWA) of each assessment allowed responses by caregivers to be closer to those of the PWA, suggesting that similar practice or at minimum a “priming” of the caregiver should occur prior to administration of any qualitative assessment for which they will serve as proxy to gain the most accurate picture. Outcomes also suggested that these assessments, in combination best captured the overall picture for each PWA’s quality of life.
Thesis (M.A.)--Wichita State University, College of Health Professions, Dept. of Communication Sciences and Disorders