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

Lane, Jo; Rohan, Emilie; SABETI, Faran; Essex, Rohan; Maddess, Ted; Dawel, Amy; Robbins, Rachel; Barnes, Nick; He, Xuming; McKone, Elinor

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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,...[Show more]

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.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.0209218
dc.identifier.issn1932-6203
dc.identifier.urihttp://hdl.handle.net/1885/155649
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.
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.
dc.format.mimetypeapplication/pdf
dc.language.isoen_AU
dc.publisherPLOS ONE
dc.rights© 2018 Lane et al.
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.sourcePLOS ONE
dc.subjectFace Recognition
dc.subjectMacular Degeneration
dc.subjectQuality of Life
dc.titleImpacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resources
dc.typeJournal article
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).
local.identifier.citationvolume13
dc.date.issued2018-12-31
local.type.statusPublished Version
local.contributor.affiliationThe Australian Nationa University
dc.relationhttp://purl.org/au-research/grants/arc/CE1101021
dc.relationhttp://purl.org/au-research/grants/arc/DP150100684
dc.relationhttp://purl.org/au-research/grants/nhmrc/1063458
local.bibliographicCitation.issue12
local.bibliographicCitation.startpagee0209218
local.identifier.doi10.1371/journal.pone.0209218
dcterms.accessRightsOpen Access
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.
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.
CollectionsANU Research Publications

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journal.pone.0209218 main article.pdf676.49 kBAdobe PDFThumbnail
AMD_brochure_A4_Lane_etal_2018.pdfSup file - Brochure to print double sided3.46 MBAdobe PDFThumbnail
AMD_InfoSheet_Lane_etal(2018)_PLOSONE.pdfSup file - Information Sheet72.05 kBAdobe PDFThumbnail
AMD_ConvStarter_Lane_etal(2018)_PLOSONE.pdfSup file - Conversation Starter108.23 kBAdobe PDFThumbnail


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