All ETDs from UAB

Advisory Committee Chair

PattiFuhr

Advisory Committee Members

Laura E Dreer

Mary Jean Sanspree

Michael Williams

Document Type

Thesis

Date of Award

2007

Degree Name by School

Master of Science (MS) School of Optometry

Abstract

Purpose: We typically think of those with severe visual impairment as having to receive care or assistance for tasks in everyday living. However, with the aging of the population, more persons who are severely visually impaired are now caring for a spouse of significant other. Very little is known about visually impaired (VI) caregivers. Thus, the purpose of this qualitative study is to learn more about this vulnerable population of VI caregivers. Methods: Focus groups and one-on-one interviews were conducted with English speaking adults who were legally blind (U.S. definition) and served as informal caregiver of an adult family member. Caregivers discussed the challenges of caregiving and how their visual impairment affected their caregiving responsibilities. Focus group transcripts were analyzed separately, using grounded theory, by three researchers. Standardized questionnaires were also administered to capture demographic and social characteristics. Results: Fourteen adults (M age = 72; 12 male, 2 female) completed all questionnaires, 9 of whom participated in a focus group and 3 completed the one-on-one interviews. Seven major themes emerged from the focus groups: 1) impact of lack of transportation, 2) concern over care recipient’s quality of life, 3) utilization of support, 4) all encompassing demand 5) cyclical adaptations 6) anxieties of the caregivers, and 7) positive aspects of caregiving. Conclusions: In general, VI caregivers experience similar challenges as other caregivers reported in the literature, yet have the added burden that comes with their own visual impairment. Unique to this population was an overriding iii concern regarding transportation for themselves and their care recipient. Though expressing a feeling of all encompassing demand in caregiving, the visually impaired caregivers consistently shared their concern for their care recipient’s quality of life and emotional health. VI caregivers reported many adaptations and dependence on low vision devices and techniques to accomplish activities of daily living for themselves and their care recipients. This is to our knowledge the first qualitative study of visually impaired caregivers, and should help healthcare professionals and rehabilitation specialists become aware of the unique problems faced by this special cohort of caregivers.

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