{"id":"https://openalex.org/W7112165147","doi":null,"title":"[Abstract] The prevalence of stigma in a UK community survey of people with lived experience of long COVID","display_name":"[Abstract] The prevalence of stigma in a UK community survey of people with lived experience of long COVID","publication_year":2025,"publication_date":"2025-07-16","ids":{"openalex":"https://openalex.org/W7112165147"},"language":"en","primary_location":{"id":"pmh:oai:figshare.com:article/29574980","doi":null,"is_oa":false,"landing_page_url":"https://figshare.com/articles/conference_contribution/_Abstract_The_prevalence_of_stigma_in_a_UK_community_survey_of_people_with_lived_experience_of_long_COVID/29574980","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Conference contribution"},"volume":null,"type":"conference-paper","is_traditional":true,"indexed_in":[],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":null,"display_name":"Marija Pantelic (13757152)","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Marija Pantelic (13757152)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Nida Ziauddeen (7908293)","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Nida Ziauddeen (7908293)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5003282344","display_name":"Mark Edward Boyes","orcid":"https://orcid.org/0000-0001-5420-8606","observed_orcids":["https://orcid.org/0000-0001-5420-8606"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Mark Boyes (846262)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Margaret E O'Hara (16298891)","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Margaret E O'Hara (16298891)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Claire Hastie (12213478)","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Claire Hastie (12213478)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":null,"display_name":"Nisreen A Alwan (15226052)","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Nisreen A Alwan (15226052)","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.67386231,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11368","display_name":"Long-Term Effects of COVID-19","score":0.9951000213623047,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11368","display_name":"Long-Term Effects of COVID-19","score":0.9951000213623047,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10168","display_name":"COVID-19 and Mental Health","score":0.003100000089034438,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T10272","display_name":"Mental Health Treatment and Access","score":0.0005000000237487257,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/long-covid","display_name":"long COVID","score":0.9869999885559082},{"id":"https://openalex.org/keywords/stigma","display_name":"stigma","score":0.925000011920929},{"id":"https://openalex.org/keywords/enacted-stigma","display_name":"enacted stigma","score":0.7900000214576721},{"id":"https://openalex.org/keywords/self-stigma","display_name":"self-stigma","score":0.9980000257492065},{"id":"https://openalex.org/keywords/anticipated-stigma","display_name":"anticipated stigma","score":1.0},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.796999990940094},{"id":"https://openalex.org/keywords/discrimination","display_name":"discrimination","score":0.5879999995231628},{"id":"https://openalex.org/keywords/social-stigma","display_name":"social stigma","score":0.49799999594688416},{"id":"https://openalex.org/keywords/psychological-distress","display_name":"psychological distress","score":0.5239999890327454},{"id":"https://openalex.org/keywords/social-exclusion","display_name":"social exclusion","score":0.4230000078678131},{"id":"https://openalex.org/keywords/social-media-survey","display_name":"social media survey","score":0.4729999899864197},{"id":"https://openalex.org/keywords/barriers-to-care","display_name":"barriers to care","score":0.367000013589859},{"id":"https://openalex.org/keywords/functional-disability","display_name":"functional disability","score":0.4050000011920929},{"id":"https://openalex.org/keywords/stigma-reduction-interventions","display_name":"stigma reduction interventions","score":0.3529999852180481}],"concepts":[{"id":"https://openalex.org/C168285401","wikidata":"https://www.wikidata.org/wiki/Q1427245","display_name":"Stigma (botany)","level":2,"score":0.8294000029563904},{"id":"https://openalex.org/C3008058167","wikidata":"https://www.wikidata.org/wiki/Q84263196","display_name":"Coronavirus disease 2019 (COVID-19)","level":4,"score":0.6565999984741211},{"id":"https://openalex.org/C172656115","wikidata":"https://www.wikidata.org/wiki/Q2142613","display_name":"Social distance","level":5,"score":0.6556000113487244},{"id":"https://openalex.org/C3019221131","wikidata":"https://www.wikidata.org/wiki/Q55621107","display_name":"Lived experience","level":2,"score":0.4828999936580658},{"id":"https://openalex.org/C2781437451","wikidata":"https://www.wikidata.org/wiki/Q1137326","display_name":"Social stigma","level":3,"score":0.454800009727478},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4392000138759613},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.41749998927116394},{"id":"https://openalex.org/C3007834351","wikidata":"https://www.wikidata.org/wiki/Q82069695","display_name":"Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)","level":5,"score":0.412200003862381},{"id":"https://openalex.org/C3006700255","wikidata":"https://www.wikidata.org/wiki/Q81068910","display_name":"2019-20 coronavirus outbreak","level":3,"score":0.4099999964237213},{"id":"https://openalex.org/C146804397","wikidata":"https://www.wikidata.org/wiki/Q4118918","display_name":"General Social Survey","level":2,"score":0.3573000133037567},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.34940001368522644},{"id":"https://openalex.org/C198477413","wikidata":"https://www.wikidata.org/wiki/Q7647069","display_name":"Survey data collection","level":2,"score":0.3450999855995178},{"id":"https://openalex.org/C2776893239","wikidata":"https://www.wikidata.org/wiki/Q1778765","display_name":"Social isolation","level":2,"score":0.3422999978065491},{"id":"https://openalex.org/C89623803","wikidata":"https://www.wikidata.org/wiki/Q12184","display_name":"Pandemic","level":5,"score":0.3280999958515167},{"id":"https://openalex.org/C107062074","wikidata":"https://www.wikidata.org/wiki/Q109701697","display_name":"Prejudice (legal term)","level":2,"score":0.31290000677108765},{"id":"https://openalex.org/C142052008","wikidata":"https://www.wikidata.org/wiki/Q954027","display_name":"Cross-sectional study","level":2,"score":0.3086000084877014},{"id":"https://openalex.org/C65067816","wikidata":"https://www.wikidata.org/wiki/Q2295139","display_name":"Computer-assisted web interviewing","level":2,"score":0.3050000071525574},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.29829999804496765},{"id":"https://openalex.org/C2778755073","wikidata":"https://www.wikidata.org/wiki/Q10858537","display_name":"Scale (ratio)","level":2,"score":0.29260000586509705},{"id":"https://openalex.org/C37544881","wikidata":"https://www.wikidata.org/wiki/Q1511079","display_name":"Just-world hypothesis","level":2,"score":0.2809999883174896},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.2702000141143799},{"id":"https://openalex.org/C518677369","wikidata":"https://www.wikidata.org/wiki/Q202833","display_name":"Social media","level":2,"score":0.26989999413490295},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.2687999904155731},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.2678999900817871},{"id":"https://openalex.org/C2777895361","wikidata":"https://www.wikidata.org/wiki/Q1758614","display_name":"Longitudinal study","level":2,"score":0.2606000006198883},{"id":"https://openalex.org/C134362201","wikidata":"https://www.wikidata.org/wiki/Q317309","display_name":"Mental health","level":2,"score":0.2522999942302704},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.2517000138759613}],"mesh":[],"locations_count":1,"locations":[{"id":"pmh:oai:figshare.com:article/29574980","doi":null,"is_oa":false,"landing_page_url":"https://figshare.com/articles/conference_contribution/_Abstract_The_prevalence_of_stigma_in_a_UK_community_survey_of_people_with_lived_experience_of_long_COVID/29574980","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Conference contribution"}],"best_oa_location":null,"sustainable_development_goals":[{"score":0.9940000176429749,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"},{"score":0.4074000120162964,"id":"https://metadata.un.org/sdg/10","display_name":"Reduced inequalities"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4309918077","https://openalex.org/W4281846654","https://openalex.org/W7204258316","https://openalex.org/W4321599166","https://openalex.org/W7162750268","https://openalex.org/W4386524904","https://openalex.org/W4394920441","https://openalex.org/W4387980304","https://openalex.org/W3130279925","https://openalex.org/W4411100884"],"abstract_inverted_index":{"BACKGROUND:":[0],"Stigma":[1,114],"can":[2],"be":[3,30,339,352],"experienced":[4,66,282],"as":[5,138,197],"perceived":[6],"or":[7,20,25,145],"actual":[8],"disqualification":[9],"from":[10,81,169,313,348],"social":[11,156,362],"and":[12,135,140,176,194,211,246,279,320,359,365],"institutional":[13],"acceptance":[14],"on":[15,105,182,219,302],"the":[16,62,82,170,173,180,217,290,344],"basis":[17],"of":[18,46,64,71,76,84,122,143,166,187,212,223,235,253,263,335,341],"one":[19],"more":[21],"physical,":[22],"health-related,":[23],"behavioural,":[24],"other":[26],"attributes":[27],"deemed":[28],"to":[29,60,109,125,179,216,317],"undesirable.":[31],"Long":[32,112],"COVID":[33,87,113,134,209,265,288,337],"is":[34],"a":[35,44,68,85,111,155,205,260,294],"predominantly":[36],"multisystem":[37],"condition":[38],"that":[39,308],"occurs":[40],"in":[41,51,67,257,269,289,330],"people":[42,72,98,224,284,311],"with":[43,73,97,100,132,159,259,286,332],"history":[45],"SARS-CoV-2":[47],"infection,":[48],"often":[49],"resulting":[50],"functional":[52],"disability,":[53],"which":[54,292],"limits":[55],"day-to-day":[56],"activities.":[57],"We":[58],"aimed":[59],"quantify":[61],"burden":[63],"stigma":[65,106,227,237,242,248,254,309,329,342],"community-based":[69],"sample":[70],"lived":[74],"experience":[75],"long":[77,86,101,126,133,208,264,287,336],"COVID.":[78,102],"METHODS:":[79],"Data":[80,151],"follow-up":[83,174],"longitudinal":[88],"online":[89],"survey":[90,94,158,175],"was":[91,95,189,231,238,243,249,255],"used.":[92],"The":[93,184,221,299,325],"coproduced":[96],"living":[99,285],"13":[103],"questions":[104,181,218],"were":[107,152],"included":[108],"develop":[110],"Scale":[115],"capturing":[116],"three":[117],"domains:":[118],"enacted":[119,236],"(overt":[120],"experiences":[121],"discrimination":[123],"due":[124],"COVID),":[127],"internalised":[128,241],"(internalising":[129],"negative":[130],"associations":[131],"accepting":[136],"them":[137],"self-applicable),":[139],"anticipated":[141,247],"(expectation":[142],"bias":[144],"poor":[146],"treatment":[147],"by":[148,283],"others)":[149],"stigma.":[150,183,220],"collected":[153],"through":[154],"media":[157],"convenience":[160],"non-probability":[161],"sampling.":[162],"FINDINGS:":[163],"966":[164],"(47\u00b79%)":[165],"2016":[167],"participants":[168],"UK":[171],"completed":[172],"888":[177],"responded":[178,215],"mean":[185],"age":[186],"respondents":[188,258],"48\u00b73":[190],"years":[191],"(SD":[192],"10\u00b77),":[193],"84\u00b76%":[195],"identified":[196],"female.":[198],"Roughly":[199],"half":[200],"(n=460,":[201],"50\u00b74%)":[202],"reported":[203],"having":[204],"formal,":[206],"clinical,":[207],"diagnosis,":[210],"these,":[213],"440":[214],"prevalence":[222,234],"experiencing":[225,328],"overall":[226],"at":[228],"least":[229],"sometimes":[230],"95\u00b74%":[232],"(n=847),":[233],"62\u00b77%":[239],"(n=557),":[240],"86\u00b74%":[244],"(n=767),":[245],"90\u00b78%":[250],"(n=806).":[251],"Prevalence":[252],"higher":[256,326],"formal":[261],"diagnosis":[262,334],"(97\u00b75%;":[266],"n=429)":[267],"than":[268],"those":[270,331],"without":[271],"(93\u00b72%;":[272],"n=413).":[273],"INTERPRETATION:":[274],"This":[275],"study":[276,350],"highlights":[277],"widespread":[278],"multilayered":[280],"stigmas":[281],"UK,":[291],"presents":[293],"serious":[295],"public":[296],"health":[297,304,314,360],"concern.":[298],"broader":[300],"literature":[301],"stigmatised":[303],"conditions":[305],"consistently":[306],"suggests":[307],"drives":[310],"away":[312],"services,":[315],"contributes":[316],"psychological":[318],"distress,":[319],"compromises":[321],"long-term":[322],"physical":[323],"outcomes.":[324],"proportion":[327],"clinical":[333,357],"might":[338],"indicative":[340],"within":[343,356],"health-care":[345],"system.":[346],"Findings":[347],"this":[349],"should":[351],"taken":[353],"into":[354],"consideration":[355],"practice":[358],"care,":[361,363],"employment,":[364],"education":[366],"policies.None.":[367]},"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2025-12-10T00:00:00"}
