{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T11:38:01Z","timestamp":1792582681265,"version":"4.5.0"},"reference-count":26,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T00:00:00Z","timestamp":1790380800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["220875"],"award-info":[{"award-number":["220875"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["217078"],"award-info":[{"award-number":["217078"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["wellcomeopenresearch.org"],"crossmark-restriction":false},"short-container-title":["Wellcome Open Res"],"abstract":"<ns3:p>\n                    Background Qualitative research has captured human experiences of suffering associated with atopic eczema. We aimed to convey this information beyond academic manuscripts to a broader audience, using ambitious, multidisciplinary patient and public engagement, led by creative researchers. Methods We worked with patient communities to find ways to amplify eczema voices, using previously reported and newly collected quotes describing their experiences. The resulting \u201cSurface Echoes\u201d project combined audio and visual methods, developed by a collaborative team of creatives, working with stakeholder participants. Results A script for reading aloud in small groups, and a digital audio recording were created through a process of collaging the collected quotes, curated by the patient communities, creatives and researchers. Themes presented in this work include visual appearance and mental burden of embarrassment or shame (\u201c\n                    <ns3:italic>it\u2019s a kind of social handicap\u2026<\/ns3:italic>\n                    \u201d); pain and itch; lack of clarity around treatment (\u201c\n                    <ns3:italic>I think this \u2018trial and error\u2019 is a very primitive form of medicine<\/ns3:italic>\n                    \u201d); challenges of communicating with healthcare professionals; and the morbidity associated with sleep deprivation (\u201c\n                    <ns3:italic>It\u2019s impossible to be on sick leave just because you are tired. So I carried on throughout the Spring and then I completely collapsed<\/ns3:italic>\n                    \u201d). The curated quotes also report positive healthcare experiences, indicative of good practice: \u201c\n                    <ns3:italic>I felt listened to \u2026 it was a conversation<\/ns3:italic>\n                    \u201d. Project participants used creative research methods to develop imaginaries of better futures, for example, \u201c\n                    <ns3:italic>\u2026 sunshine soup\u201d<\/ns3:italic>\n                    and\n                    <ns3:italic>\u201c\u2026 consistent advice<\/ns3:italic>\n                    \u201d. The materials have been used with stakeholders including medical and nursing professionals, industrial and academic researchers, and the public. Conclusions This work has been designed to raise awareness, promote discussion, reduce stigma and increase understanding of eczema. The presentation to stakeholder groups prioritised by the participants whose voices are amplified was designed to improve empathic discussion with professionals; it may also inform future research.\n                  <\/ns3:p>","DOI":"10.12688\/wellcomeopenres.26101.1","type":"journal-article","created":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T09:39:07Z","timestamp":1790415547000},"page":"753","update-policy":"https:\/\/doi.org\/10.12688\/wellcomeopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Creative patient and public engagement to amplify the voices of people living with eczema"],"prefix":"10.12688","volume":"11","author":[{"given":"Alison","family":"Mayne","sequence":"first","affiliation":[{"name":"Edinburgh College of Art Edinburgh Scotland EH3 9DF The University of Edinburgh College of Arts Humanities and Social Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6126-6334","authenticated-orcid":false,"given":"Keira","family":"Tucker","sequence":"additional","affiliation":[{"name":"Summerhall Edinburgh EH9 1PL ASCUS Art & Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Street","sequence":"additional","affiliation":[{"name":"Edinburgh College of Art Edinburgh Scotland EH3 9DF The University of Edinburgh College of Arts Humanities and Social Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah Rose","family":"Graber","sequence":"additional","affiliation":[{"name":"Edinburgh College of Art Edinburgh Scotland EH3 9DF The University of Edinburgh College of Arts Humanities and Social Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James","family":"Brook","sequence":"additional","affiliation":[{"name":"Edinburgh James Brook Design"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liam","family":"Russell","sequence":"additional","affiliation":[{"name":"Dumfries Scotland Stomping Ground Creative"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dee","family":"Davison","sequence":"additional","affiliation":[{"name":"Institute of Genetics and Cancer Edinburgh Scotland EH4 2XU The University of Edinburgh College of Medicine and Veterinary Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Doyle","sequence":"additional","affiliation":[{"name":"Edinburgh College of Art Edinburgh Scotland EH3 9DF The University of Edinburgh College of Arts Humanities and Social Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eczema Outreach Support","family":"Youth Panel","sequence":"additional","affiliation":[{"name":"Linlithgow Scotland EH49 7EZ Eczema Outreach Support"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beverley","family":"Hood","sequence":"additional","affiliation":[{"name":"Edinburgh College of Art Edinburgh Scotland EH3 9DF The University of Edinburgh College of Arts Humanities and Social Science"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3232-5251","authenticated-orcid":false,"given":"Sara","family":"Brown","sequence":"additional","affiliation":[{"name":"Institute of Genetics and Cancer Edinburgh Scotland EH4 2XU The University of Edinburgh College of Medicine and Veterinary Medicine"},{"name":"Department of Dermatology Edinburgh Scotland EH3 9HX NHS Lothian"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2560","published-online":{"date-parts":[[2026,9,26]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"345-360","DOI":"10.1016\/S0140-6736(20)31286-1","article-title":"Atopic dermatitis.","volume":"396","author":"S Langan","year":"2020","journal-title":"Lancet."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"425-446","DOI":"10.1016\/S2213-2600(25)00003-7","article-title":"Global, regional, and national burden of asthma and atopic dermatitis, 1990-2021, and projections to 2050: a systematic analysis of the Global Burden of Disease Study 2021.","volume":"13","author":"G Asthma","year":"2025","journal-title":"Lancet Respir. Med."},{"key":"ref3","article-title":"Global Atopic Dermatitis Atlas 2022 Report 2022."},{"key":"ref4","doi-asserted-by":"publisher","first-page":"304-309","DOI":"10.1111\/bjd.19580","article-title":"The global burden of atopic dermatitis: lessons from the Global Burden of Disease Study 1990-2017.","volume":"184","author":"M Laughter","year":"2021","journal-title":"Br. J. Dermatol."},{"key":"ref5","first-page":"1789-858","article-title":"Global, regional, and national disability-adjusted life-years (DALYs) for 359 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017.","volume":"392","year":"2018","journal-title":"Lancet."},{"key":"ref7","doi-asserted-by":"publisher","first-page":"627-637","DOI":"10.1111\/bjd.19299","article-title":"Views and experiences of managing eczema: systematic review and thematic synthesis of qualitative studies.","volume":"184","author":"E Teasdale","year":"2021","journal-title":"Br. J. Dermatol."},{"key":"ref8","doi-asserted-by":"publisher","first-page":"e59-e65","DOI":"10.1016\/j.pedn.2018.07.005","article-title":"\"To Cope with Everyday Life, I Need to Sleep\" - A Phenomenographic Study Exploring Sleep Loss in Parents of Children with Atopic Dermatitis.","volume":"43","author":"C Angelhoff","year":"2018","journal-title":"J. Pediatr. Nurs."},{"key":"ref9","doi-asserted-by":"publisher","first-page":"2247-2255","DOI":"10.1111\/j.1365-2648.2011.05915.x","article-title":"Children and adolescents living with atopic eczema: an interpretive phenomenological study with Chinese mothers.","volume":"68","author":"W Cheung","year":"2012","journal-title":"J. Adv. Nurs."},{"key":"ref10","doi-asserted-by":"publisher","first-page":"e021498","DOI":"10.1136\/bmjopen-2018-021498","article-title":"Knowledge mobilisation: an ethnographic study of the influence of lay mindlines on eczema self-management in primary care in the UK.","volume":"8","author":"F Cowdell","year":"2018","journal-title":"BMJ Open."},{"key":"ref11","doi-asserted-by":"publisher","first-page":"241-247","DOI":"10.1111\/j.1365-2702.1997.tb00310.x","article-title":"The experiences of mothers caring for a child with severe atopic eczema.","volume":"6","author":"B Elliott","year":"1997","journal-title":"J. Clin. Nurs."},{"key":"ref12","doi-asserted-by":"publisher","first-page":"938-943","DOI":"10.1111\/j.1398-9995.2005.00776.x","article-title":"The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study.","volume":"60","author":"C Gore","year":"2005","journal-title":"Allergy."},{"key":"ref13","doi-asserted-by":"publisher","first-page":"e022861","DOI":"10.1136\/bmjopen-2018-022861","article-title":"Hope you find your 'eureka' moment soon: 'a qualitative study of parents\/carers' online discussions around allergy, allergy tests and eczema.","volume":"8","author":"A Halls","year":"2018","journal-title":"BMJ Open."},{"key":"ref14","doi-asserted-by":"publisher","first-page":"e017731","DOI":"10.1136\/bmjopen-2017-017731","article-title":"'When it goes back to my normal I suppose': a qualitative study using online focus groups to explore perceptions of 'control' among people with eczema and parents of children with eczema in the UK.","volume":"7","author":"L Howells","year":"2017","journal-title":"BMJ Open."},{"key":"ref15","doi-asserted-by":"publisher","first-page":"824-827","DOI":"10.1001\/jamadermatol.2018.1096","article-title":"Adolescents' Perspectives on Atopic Dermatitis Treatment-Experiences, Preferences, and Beliefs.","volume":"154","author":"R Kosse","year":"2018","journal-title":"JAMA Dermatol."},{"key":"ref16","doi-asserted-by":"publisher","first-page":"1056-1065","DOI":"10.1111\/bjd.12524","article-title":"Knowledge, attitudes and behaviour in everyday life with chronic hand eczema: a qualitative study.","volume":"169","author":"A Mollerup","year":"2013","journal-title":"Br. J. Dermatol."},{"key":"ref17","doi-asserted-by":"publisher","first-page":"91-106","DOI":"10.1177\/1363459309347648","article-title":"From consumerism to active dependence: Patterns of medicines use and treatment decisions among patients with atopic dermatitis.","volume":"14","author":"M Norreslet","year":"2010","journal-title":"Health (London)."},{"key":"ref18","doi-asserted-by":"publisher","first-page":"183-190","DOI":"10.1111\/bjd.15909","article-title":"The views of children and young people on the use of silk garments for the treatment of eczema: a nested qualitative study within the CLOTHing for the relief of Eczema Symptoms (CLOTHES) randomized controlled trial.","volume":"178","author":"E Wake","year":"2018","journal-title":"Br. J. Dermatol."},{"key":"ref19","doi-asserted-by":"publisher","first-page":"112-118","DOI":"10.1111\/bjd.18046","article-title":"It's like the bad guy in a movie who just doesn't die': a qualitative exploration of young people's adaptation to eczema and implications for self-care.","volume":"182","author":"D Ghio","year":"2020","journal-title":"Br. J. Dermatol."},{"key":"ref20","doi-asserted-by":"publisher","DOI":"10.3390\/children8020158","article-title":"Children's Views and Experiences of Treatment Adherence and Parent\/Child Co-Management in Eczema: A Qualitative Study.","volume":"8","author":"E Teasdale","year":"2021","journal-title":"Children (Basel)."},{"key":"ref21","doi-asserted-by":"publisher","first-page":"e81-e89","DOI":"10.3399\/bjgp17X693617","article-title":"Developing a written action plan for children with eczema: a qualitative study.","volume":"68","author":"K Powell","year":"2018","journal-title":"Br. J. Gen. Pract."},{"key":"ref22","doi-asserted-by":"publisher","first-page":"e011887","DOI":"10.1136\/bmjopen-2016-011887","article-title":"Parents' and carers' views about emollients for childhood eczema: qualitative interview study.","volume":"6","author":"M Santer","year":"2016","journal-title":"BMJ Open."},{"key":"ref23","article-title":"Here\u2019s how to make a chatterbox 2025."},{"key":"ref24","article-title":"\u201csurface echoes\u201d resources 2025."},{"key":"ref25","article-title":"The development of \u201csurface echoes\u201d 2025."},{"key":"ref26","doi-asserted-by":"publisher","DOI":"10.7551\/mitpress\/9780262113106.001.0001","author":"S Kozel","year":"2008","journal-title":"Closer: Performance, Technologies."},{"key":"ref27","doi-asserted-by":"publisher","DOI":"10.7488\/ds\/8102","author":"S Brown","year":"2026","journal-title":"Surface Echoes: amplifying the voices of people living with eczema, [text]."}],"container-title":["Wellcome Open Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1\/pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1\/iparadigms","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T10:39:09Z","timestamp":1792579149000},"score":1,"resource":{"primary":{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,26]]},"references-count":26,"URL":"https:\/\/doi.org\/10.12688\/wellcomeopenres.26101.1","relation":{"has-review":[{"id-type":"doi","id":"10.21956\/wellcomeopenres.28743.r170972","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.28743.r170970","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.28743.r170970","asserted-by":"object"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.28743.r170972","asserted-by":"object"}]},"ISSN":["2398-502X"],"issn-type":[{"value":"2398-502X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,26]]},"assertion":[{"value":"Indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1#article-reports","order":0,"name":"referee-status","label":"Referee status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.21956\/wellcomeopenres.28743.r170972, Allison R Loiselle, National Eczema Association, Novato, California, 09 Oct 2026, version 1, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1#referee-response-170972","order":0,"name":"referee-response-170972","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.21956\/wellcomeopenres.28743.r170970, Fiona Johnstone, Durham University, Durham, 21 Oct 2026, version 1, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/11-753\/v1#referee-response-170970","order":1,"name":"referee-response-170970","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"This work was supported by the Wellcome Trust-University of Edinburgh Institutional Strategic Support Fund awarded from the University of Edinburgh to Sara Brown and Beverley Hood; a ScotPEN Wellcome Engagement Award (ref 217078\/Z\/19\/Z) to Sara Brown and a Senior Research Fellowship in Clinical Science to Sara Brown (ref 220875\/Z\/20\/Z). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":2,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}