TY - JOUR
T1 - Impacts of impaired face perception on social interactions and quality of life in age-related macular degeneration
T2 - A qualitative study and new community resources
AU - Lane, Jo
AU - Rohan, Emilie M.F.
AU - Sabeti, Faran
AU - Essex, Rohan W.
AU - Maddess, Ted
AU - Dawel, Amy
AU - Robbins, Rachel A.
AU - Barnes, Nick
AU - He, Xuming
AU - McKone, Elinor
N1 - Funding Information:
This research was supported by Australian Research Council grants CE110001021 (www.ccd.edu.au; EM, JL, AD) and DP150100684 (EM), National Health and Medical Research Council Project Grant 1063458 (https://www.nhmrc.gov.au/ TM, ER and FS), Rebecca Cooper Medical Foundation Grant (FS). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. We thank the Macular Disease Foundation Australia, specifically Mr Rob Cummins and Anthony Lehner for assisting with recruitment and providing feedback on the community resources. Dr David Tridgell provided vision data for one patient.
Publisher Copyright:
© 2018 Lane et al. 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.
PY - 2018/12/31
Y1 - 2018/12/31
N2 - AimsPrevious 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).MethodSemi-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.ResultsPatients 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).ConclusionPoor 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
AB - AimsPrevious 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).MethodSemi-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.ResultsPatients 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).ConclusionPoor 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
KW - Aged
KW - Aged, 80 and over
KW - Facial Recognition
KW - Female
KW - Humans
KW - Interpersonal Relations
KW - Interviews as Topic
KW - Macular Degeneration/complications
KW - Male
KW - Perceptual Disorders/etiology
KW - Qualitative Research
KW - Quality of Life
KW - Vision Disorders/etiology
UR - http://www.scopus.com/inward/record.url?scp=85059273724&partnerID=8YFLogxK
UR - https://www.mendeley.com/catalogue/2b9a4e16-c651-38ca-b641-301aeee8e6f0/
U2 - 10.1371/journal.pone.0209218
DO - 10.1371/journal.pone.0209218
M3 - Article
C2 - 30596660
AN - SCOPUS:85059273724
SN - 1932-6203
VL - 13
SP - 1
EP - 31
JO - PLoS One
JF - PLoS One
IS - 12
M1 - e0209218
ER -