{"id":"https://openalex.org/W2802694520","doi":"https://doi.org/10.1080/23311886.2018.1463816","title":"Desire for improved disclosure, community and bonding among young adults with perinatally acquired HIV","display_name":"Desire for improved disclosure, community and bonding among young adults with perinatally acquired HIV","publication_year":2018,"publication_date":"2018-01-01","ids":{"openalex":"https://openalex.org/W2802694520","doi":"https://doi.org/10.1080/23311886.2018.1463816","mag":"2802694520"},"language":"en","primary_location":{"id":"doi:10.1080/23311886.2018.1463816","doi":"https://doi.org/10.1080/23311886.2018.1463816","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23311886.2018.1463816","pdf_url":null,"source":{"id":"https://openalex.org/S2737998943","display_name":"Cogent Social Sciences","issn_l":"2331-1886","issn":["2331-1886"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","norway-1","poland-40","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310311767","host_organization_name":"Cogent OA","host_organization_lineage":["https://openalex.org/P4310311767"],"host_organization_lineage_names":["Cogent OA"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cogent Social Sciences","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","doaj"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://doi.org/10.1080/23311886.2018.1463816","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5079617744","display_name":"Ruth W. Wang\u2019ondu","orcid":"https://orcid.org/0000-0002-4586-8933","observed_orcids":["https://orcid.org/0000-0002-4586-8933"]},"institutions":[{"id":"https://openalex.org/I32971472","display_name":"Yale University","ror":"https://ror.org/03v76x132","country_code":"US","type":"education","lineage":["https://openalex.org/I32971472"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"R. Wang\u2019ondu","raw_affiliation_strings":["Combined Internal Medicine/Pediatrics Residency Program, Yale School of Medicine, New Haven, CT, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Combined Internal Medicine/Pediatrics Residency Program, Yale School of Medicine, New Haven, CT, USA","institution_ids":["https://openalex.org/I32971472"]}]},{"author_position":"middle","author":{"id":null,"display_name":"S. Samuels","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"S. Samuels","raw_affiliation_strings":["The Children\u2019s Hospital of Philadelphia, Section of Endocrinology and Diabetes, Philadelphia, PA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The Children\u2019s Hospital of Philadelphia, Section of Endocrinology and Diabetes, Philadelphia, PA, USA","institution_ids":["https://openalex.org/I1335321130"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5111407754","display_name":"Warren A. Andiman","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I32971472","display_name":"Yale University","ror":"https://ror.org/03v76x132","country_code":"US","type":"education","lineage":["https://openalex.org/I32971472"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"W. Andiman","raw_affiliation_strings":["Department of Pediatrics, Section of Infectious Disease, Yale University, New Haven, CT, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Section of Infectious Disease, Yale University, New Haven, CT, USA","institution_ids":["https://openalex.org/I32971472"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5000045653","display_name":"Elijah Paintsil","orcid":"https://orcid.org/0000-0002-8283-4564","observed_orcids":["https://orcid.org/0000-0002-8283-4564"]},"institutions":[{"id":"https://openalex.org/I32971472","display_name":"Yale University","ror":"https://ror.org/03v76x132","country_code":"US","type":"education","lineage":["https://openalex.org/I32971472"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"E. Paintsil","raw_affiliation_strings":["Department of Pediatrics, Section of Infectious Disease, Yale University, New Haven, CT, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Section of Infectious Disease, Yale University, New Haven, CT, USA","institution_ids":["https://openalex.org/I32971472"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5102850061","display_name":"Lydia Barakat","orcid":"https://orcid.org/0000-0003-4994-2907","observed_orcids":["https://orcid.org/0000-0003-4994-2907"]},"institutions":[{"id":"https://openalex.org/I32971472","display_name":"Yale University","ror":"https://ror.org/03v76x132","country_code":"US","type":"education","lineage":["https://openalex.org/I32971472"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"L. Barakat","raw_affiliation_strings":["Department of Medicine, Section of Infectious Disease, Yale University, New Haven, CT, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Medicine, Section of Infectious Disease, Yale University, New Haven, CT, USA","institution_ids":["https://openalex.org/I32971472"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5020008883","display_name":"Allison Langs-Barlow","orcid":"https://orcid.org/0000-0002-5695-2516","observed_orcids":["https://orcid.org/0000-0002-5695-2516"]},"institutions":[{"id":"https://openalex.org/I4210123542","display_name":"Mary Bridge Children's Health Center","ror":"https://ror.org/029t3me68","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1325808316","https://openalex.org/I4210123542"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"A. Langs-Barlow","raw_affiliation_strings":["Mary Bridge Children\u2019s Hospital, Tacoma, WA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Mary Bridge Children\u2019s Hospital, Tacoma, WA, USA","institution_ids":["https://openalex.org/I4210123542"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5000045653","https://openalex.org/A5020008883","https://openalex.org/A5079617744","https://openalex.org/A5102850061","https://openalex.org/A5111407754"],"corresponding_institution_ids":["https://openalex.org/I1335321130","https://openalex.org/I32971472","https://openalex.org/I4210123542"],"apc_list":{"value":950,"currency":"GBP","value_usd":1165},"apc_paid":{"value":950,"currency":"GBP","value_usd":1165},"fwci":0.1887,"has_fulltext":false,"cited_by_count":2,"citation_normalized_percentile":{"value":0.51113357,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":94},"biblio":{"volume":"4","issue":"1","first_page":"1463816","last_page":"1463816"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10082","display_name":"HIV/AIDS Research and Interventions","score":0.9496999979019165,"subfield":{"id":"https://openalex.org/subfields/2725","display_name":"Infectious Diseases"},"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/T10082","display_name":"HIV/AIDS Research and Interventions","score":0.9496999979019165,"subfield":{"id":"https://openalex.org/subfields/2725","display_name":"Infectious Diseases"},"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/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.04340000078082085,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10156","display_name":"LGBTQ Health, Identity, and Policy","score":0.002300000051036477,"subfield":{"id":"https://openalex.org/subfields/3207","display_name":"Social Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/perinatal-hiv-infection","display_name":"perinatal HIV infection","score":0.9850000143051147},{"id":"https://openalex.org/keywords/young-adults","display_name":"young adults","score":0.875},{"id":"https://openalex.org/keywords/hiv-status-disclosure","display_name":"HIV status disclosure","score":0.8550000190734863},{"id":"https://openalex.org/keywords/stigma","display_name":"stigma","score":0.609000027179718},{"id":"https://openalex.org/keywords/resilience","display_name":"resilience","score":0.7540000081062317},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.9959999918937683},{"id":"https://openalex.org/keywords/isolation","display_name":"isolation","score":0.652999997138977},{"id":"https://openalex.org/keywords/treatment-adherence","display_name":"medication adherence","score":0.8309999704360962},{"id":"https://openalex.org/keywords/coming-of-age","display_name":"coming of age","score":0.8659999966621399},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.5960000157356262},{"id":"https://openalex.org/keywords/peer-support","display_name":"peer support","score":0.6769999861717224}],"concepts":[{"id":"https://openalex.org/C2779302386","wikidata":"https://www.wikidata.org/wiki/Q79871","display_name":"Anger","level":2,"score":0.6790409088134766},{"id":"https://openalex.org/C122980154","wikidata":"https://www.wikidata.org/wiki/Q205555","display_name":"Feeling","level":2,"score":0.6775502562522888},{"id":"https://openalex.org/C3013748606","wikidata":"https://www.wikidata.org/wiki/Q15787","display_name":"Human immunodeficiency virus (HIV)","level":2,"score":0.5879371166229248},{"id":"https://openalex.org/C168285401","wikidata":"https://www.wikidata.org/wiki/Q1427245","display_name":"Stigma (botany)","level":2,"score":0.5790975689888},{"id":"https://openalex.org/C137176749","wikidata":"https://www.wikidata.org/wiki/Q4105337","display_name":"Psychological resilience","level":2,"score":0.5639143586158752},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5238166451454163},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.5137170553207397},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.504736065864563},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.4113108515739441},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.38651716709136963},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.37251681089401245},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.3252258002758026},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.27842098474502563},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.2476564347743988},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.20549684762954712},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.16736385226249695},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.09271007776260376}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1080/23311886.2018.1463816","doi":"https://doi.org/10.1080/23311886.2018.1463816","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23311886.2018.1463816","pdf_url":null,"source":{"id":"https://openalex.org/S2737998943","display_name":"Cogent Social Sciences","issn_l":"2331-1886","issn":["2331-1886"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","norway-1","poland-40","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310311767","host_organization_name":"Cogent OA","host_organization_lineage":["https://openalex.org/P4310311767"],"host_organization_lineage_names":["Cogent OA"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cogent Social Sciences","raw_type":"journal-article"},{"id":"pmh:oai:doaj.org/article:4f7fc02990ac44d8ac9c5812414e5248","doi":null,"is_oa":false,"landing_page_url":"https://doaj.org/article/4f7fc02990ac44d8ac9c5812414e5248","pdf_url":null,"source":{"id":"https://openalex.org/S4306401280","display_name":"DOAJ (DOAJ: Directory of Open Access Journals)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Cogent Social Sciences, Vol 4, Iss 1 (2018)","raw_type":"article"}],"best_oa_location":{"id":"doi:10.1080/23311886.2018.1463816","doi":"https://doi.org/10.1080/23311886.2018.1463816","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23311886.2018.1463816","pdf_url":null,"source":{"id":"https://openalex.org/S2737998943","display_name":"Cogent Social Sciences","issn_l":"2331-1886","issn":["2331-1886"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","norway-1","poland-40","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310311767","host_organization_name":"Cogent OA","host_organization_lineage":["https://openalex.org/P4310311767"],"host_organization_lineage_names":["Cogent OA"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cogent Social Sciences","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","score":1.0,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":49,"referenced_works":["https://openalex.org/W24684935","https://openalex.org/W154592437","https://openalex.org/W579510620","https://openalex.org/W1525375145","https://openalex.org/W1964713195","https://openalex.org/W1968386919","https://openalex.org/W1973759719","https://openalex.org/W1979767399","https://openalex.org/W1998042336","https://openalex.org/W2006973096","https://openalex.org/W2012276910","https://openalex.org/W2012683429","https://openalex.org/W2014711375","https://openalex.org/W2015705590","https://openalex.org/W2029439673","https://openalex.org/W2029487445","https://openalex.org/W2033239019","https://openalex.org/W2054889124","https://openalex.org/W2062355092","https://openalex.org/W2062653200","https://openalex.org/W2063213500","https://openalex.org/W2063818861","https://openalex.org/W2065480690","https://openalex.org/W2066858434","https://openalex.org/W2087029639","https://openalex.org/W2091059041","https://openalex.org/W2102083811","https://openalex.org/W2102797406","https://openalex.org/W2104847552","https://openalex.org/W2110099495","https://openalex.org/W2113481036","https://openalex.org/W2121261951","https://openalex.org/W2138744543","https://openalex.org/W2142541558","https://openalex.org/W2153306196","https://openalex.org/W2158211153","https://openalex.org/W2161115445","https://openalex.org/W2163757710","https://openalex.org/W2204288332","https://openalex.org/W2398347744","https://openalex.org/W2408459324","https://openalex.org/W2461798669","https://openalex.org/W2475714278","https://openalex.org/W2520146418","https://openalex.org/W2555122863","https://openalex.org/W2603582796","https://openalex.org/W2734556286","https://openalex.org/W2752756808","https://openalex.org/W2754319648"],"related_works":["https://openalex.org/W4377139889","https://openalex.org/W3045632433","https://openalex.org/W2034165138","https://openalex.org/W2507421775","https://openalex.org/W2095158864","https://openalex.org/W7160910737","https://openalex.org/W1716670520","https://openalex.org/W3122977563","https://openalex.org/W2036094904","https://openalex.org/W3108569686"],"abstract_inverted_index":{"The":[0,130],"increasing":[1],"number":[2],"of":[3,43,61,94,124,147,151,166,180],"patients":[4,53,193],"with":[5,24,45,51,54,79,101,194],"PHIV":[6,80],"transitioning":[7,112],"into":[8,113],"adulthood":[9],"in":[10,190],"high-income":[11],"countries":[12],"over":[13],"the":[14,40,64,120],"last":[15],"decade":[16],"or":[17],"so":[18],"has":[19],"provided":[20],"health":[21],"care":[22],"providers":[23],"opportunities":[25],"to":[26,76,83,129,163,170,177],"learn":[27],"about":[28],"unique":[29],"obstacles":[30],"and":[31,58,104,111,122,134,153,168,182],"challenges":[32,106],"faced":[33,108],"by":[34],"this":[35],"population.":[36],"To":[37],"better":[38],"understand":[39],"lived":[41],"experiences":[42,100,181],"youth":[44,78],"PHIV,":[46,55],"we":[47],"conducted":[48],"comprehensive":[49],"interviews":[50,74],"nine":[52],"between":[56],"19":[57],"30":[59],"years":[60],"age,":[62],"at":[63],"Yale":[65],"New":[66],"Haven":[67],"Human":[68],"Immunodeficiency":[69],"Virus":[70],"(HIV)":[71],"Program.":[72],"Our":[73,172],"aimed":[75],"provide":[77],"a":[81,91],"forum":[82],"share":[84],"their":[85,98],"views":[86],"about:":[87],"(1)":[88],"what":[89],"comprises":[90],"good":[92],"quality":[93],"life":[95],"(QoL),":[96],"(2)":[97],"personal":[99],"HIV":[102,148,185],"disclosure,":[103],"(3)":[105],"they":[107],"growing":[109],"up":[110],"adulthood.":[114],"We":[115],"derived":[116],"supporting":[117],"data":[118],"on":[119],"resilience":[121],"QoL":[123],"our":[125],"participants":[126],"from":[127],"responses":[128],"Brief":[131],"Resilience":[132],"Scale":[133],"WHOQOL-HIV":[135],"BREF":[136],"surveys.":[137],"Common":[138],"themes":[139],"that":[140,175],"emerged":[141],"included:":[142],"desire":[143],"for":[144,192],"improved":[145],"disclosure":[146],"status,":[149],"fear":[150],"stigma,":[152],"anger":[154],"against":[155,159],"biological":[156,160],"mothers.":[157],"Anger":[158],"mothers":[161],"appeared":[162],"worsen":[164],"feelings":[165],"isolation":[167],"adherence":[169],"medication.":[171],"findings":[173],"suggest":[174],"forums":[176],"enhance":[178],"sharing":[179],"improve":[183],"age-appropriate":[184],"knowledge":[186],"are":[187],"potentially":[188],"important":[189],"caring":[191],"PHIV.":[195]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2020,"cited_by_count":1}],"updated_date":"2026-10-30T12:39:25.321706","created_date":"2018-05-17T00:00:00"}