Impacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resources

dc.contributor.authorLane, Jo
dc.contributor.authorRohan, Emilie
dc.contributor.authorSABETI, Faran
dc.contributor.authorEssex, Rohan
dc.contributor.authorMaddess, Ted
dc.contributor.authorDawel, Amy
dc.contributor.authorRobbins, Rachel
dc.contributor.authorBarnes, Nick
dc.contributor.authorHe, Xuming
dc.contributor.authorMcKone, Elinor
dc.date.accessioned2019-02-12T03:11:10Z
dc.date.available2019-02-12T03:11:10Z
dc.date.issued2018-12-31
dc.description.abstractAims 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.en_AU
dc.description.sponsorshipThis 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.en_AU
dc.format.mimetypeapplication/pdfen_AU
dc.identifier.citationLane 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.0209218en_AU
dc.identifier.issn1932-6203en_AU
dc.identifier.urihttp://hdl.handle.net/1885/155649
dc.language.isoen_AUen_AU
dc.provenanceThis 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.en_AU
dc.publisherPLOS ONEen_AU
dc.relationhttp://purl.org/au-research/grants/arc/CE1101021en_AU
dc.relationhttp://purl.org/au-research/grants/arc/DP150100684en_AU
dc.relationhttp://purl.org/au-research/grants/nhmrc/1063458en_AU
dc.rights© 2018 Lane et al.en_AU
dc.rights.licenseThis 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.en_AU
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/en_AU
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.sourcePLOS ONEen_AU
dc.subjectFace Recognitionen_AU
dc.subjectMacular Degenerationen_AU
dc.subjectQuality of Lifeen_AU
dc.titleImpacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resourcesen_AU
dc.typeJournal articleen_AU
dcterms.accessRightsOpen Accessen_AU
local.bibliographicCitation.issue12en_AU
local.bibliographicCitation.startpagee0209218en_AU
local.contributor.affiliationThe Australian Nationa Universityen_AU
local.contributor.authoremailJo.Lane@anu.edu.auen_AU
local.contributor.authoruidu4538815en_AU
local.description.notesFaces and Social Life in AMD brochure (A4) - Supplementary-This brochure is a supplement to the main Lane et al paper, suitable to be given to AMD patients by a GP or vision specialist (DOI 10.1371/journal.pone.0209218.s002).en_AU
local.identifier.citationvolume13en_AU
local.identifier.doi10.1371/journal.pone.0209218en_AU
local.identifier.uidSubmittedByu4021919en_AU
local.type.statusPublished Versionen_AU

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