Impacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resources
Date
2018-12-31
Authors
Lane, Jo
Rohan, Emilie
SABETI, Faran
Essex, Rohan
Maddess, Ted
Dawel, Amy
Robbins, Rachel
Barnes, Nick
He, Xuming
McKone, Elinor
Journal Title
Journal ISSN
Volume Title
Publisher
PLOS ONE
Abstract
Aims
Previous studies and community information about everyday difficulties in age-related macular degeneration (AMD) have focussed on domains such as reading and driving. Here, we provide the first in-depth examination of how impaired face perception impacts social interactions and quality of life in AMD. We also develop a Faces and Social Life in AMD brochure and information sheet, plus accompanying conversation starter, aimed at AMD patients and those who interact with them (family, friends, nursing home staff).
Method
Semi-structured face-to-face interviews were conducted with 21 AMD patients covering the full range from mild vision loss to legally blind. Thematic analysis was used to explore the range of patient experiences.
Results
Patients reported faces appeared blurred and/or distorted. They described recurrent failures to recognise others' identity, facial expressions and emotional states, plus failures of alternative non-face strategies (e.g., hairstyle, voice). They reported failures to follow social nuances (e.g., to pick up that someone was joking), and feelings of missing out ('I can't join in'). Concern about offending others (e.g., by unintentionally ignoring them) was common, as were concerns of appearing fraudulent ('Other people don't understand'). Many reported social disengagement. Many reported specifically face-perception-related reductions in social life, confidence, and quality of life. All effects were observed even with only mild vision loss. Patients endorsed the value of our Faces and Social Life in AMD Information Sheet, developed from the interview results, and supported future technological assistance (digital image enhancement).
Conclusion
Poor face perception in AMD is an important domain contributing to impaired social interactions and quality of life. This domain should be directly assessed in quantitative quality of life measures, and in resources designed to improve community understanding. The identity-related social difficulties mirror those in prosopagnosia, of cortical rather than retinal origin, implying findings may generalise to all low-vision disorders.
Description
Keywords
Face Recognition, Macular Degeneration, Quality of Life
Citation
Lane J, Rohan EMF, Sabeti F, Essex RW, Maddess T, Dawel A, et al. (2018) Impacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resources. PLoS ONE 13(12): e0209218. https://doi.org/10.1371/journal.pone.0209218
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Source
PLOS ONE
Type
Journal article
Book Title
Entity type
Access Statement
Open Access
License Rights
This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
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File
Description
Sup file - Brochure to print double sided
Sup file - Information Sheet
Sup file - Conversation Starter