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Priyanka Kumar, Varshini Varadaraj, Bonnielin K Swenor; Stigma among older adults with age-related visual impairment. Invest. Ophthalmol. Vis. Sci. 2020;61(7):1574.
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Prior research examining the stigma associated with visual impairment has been largely limited to young adult or midlife populations. Here, we examine the relationship between vision impairment and stigma using questionnaires and guided interviews among a sample of older adults with age-related eye disease.
A total of 23 patients with vision impairment were recruited from the glaucoma (n=13) (visual fields mean deviations: >5 and <15) or retina (n=10) (visual acuity: <20/50 and >20/400) clinics of the Johns Hopkins Wilmer Eye Institute between 2015 and 2016. Demographic data were ascertained from Electronic Patient Records. A modified Stigma Scale for Chronic Illness (SSCI) questionnaire was used to assess felt and enacted stigma. A subset of patients (n=6) completed one-on-one in-person structured interviews to examine the lived experience of vision loss and perceptions of stigma surrounding age-related vision loss. Interviews were recorded, transcribed, and analyzed using conventional content analysis.
A high percentage of participants (74.9 [SD:13.3] years) indicated “never or rarely” experiencing stigma as assessed by the SSCI questionnaire (Figure) (74%-100% across questions). However, content analyses of interview transcripts revealed three emergent themes: (1) evolving self-perception, (2) navigating interpersonal relationships, and (3) behavioral adaptations. Additionally, moderate levels of internalized stigma emerged, indicated by the subthemes of diminishing independence (n=5, 83.3%), changing responsibilities (n=4, 66.6%), and worries about disease progression (n=5, 83.3%).
Data from SSCI questionnaire did not indicate that older adults with visual impairment experienced stigma. However, in-depth interviews revealed that internalized stigma was experienced within our cohort. This discordance may indicate that a broader framework of stigma, including an appreciation of internalized stigma, may be necessary to recognize stigma in older adults with age-related vision impairment.
This is a 2020 ARVO Annual Meeting abstract.
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