{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,3]],"date-time":"2026-11-03T21:41:14Z","timestamp":1793742074169,"version":"4.6.1"},"reference-count":111,"publisher":"SAGE Publications","issue":"9","license":[{"start":{"date-parts":[[2022,4,5]],"date-time":"2022-04-05T00:00:00Z","timestamp":1649116800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000072","name":"National Institute of Dental and Craniofacial Research","doi-asserted-by":"publisher","award":["R01DE029510"],"award-info":[{"award-number":["R01DE029510"]}],"id":[{"id":"10.13039\/100000072","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:sec>\n                    <jats:title\/>\n                    <jats:p>This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>Studies (N\u2009=\u200964) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss\/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction\/Canaloplasty; and (5) Quality of Life and Patient Satisfaction.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction\/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656221091699","type":"journal-article","created":{"date-parts":[[2022,4,6]],"date-time":"2022-04-06T01:58:05Z","timestamp":1649210285000},"page":"1090-1112","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":28,"title":["Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades"],"prefix":"10.1177","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2029-5873","authenticated-orcid":false,"given":"Alexis L","family":"Johns","sequence":"first","affiliation":[{"name":"Division of Plastic and Maxillofacial Surgery, Children\u2019s Hospital Los Angeles and Keck School of Medicine, University of Southern California, Los Angeles, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1285-691X","authenticated-orcid":false,"given":"Nicola M","family":"Stock","sequence":"additional","affiliation":[{"name":"Center for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8275-695X","authenticated-orcid":false,"given":"Bruna","family":"Costa","sequence":"additional","affiliation":[{"name":"Center for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin","family":"Billaud Feragen","sequence":"additional","affiliation":[{"name":"Center for Rare Disorders, Oslo University Hospital, Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0040-6396","authenticated-orcid":false,"given":"Canice E","family":"Crerand","sequence":"additional","affiliation":[{"name":"Departments of Pediatrics and Plastic Surgery, The Ohio State University College of Medicine, Columbus, OH, USA"},{"name":"Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children\u2019s Hospital, Columbus, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,4,5]]},"reference":[{"key":"bibr1-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31373"},{"key":"bibr2-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000006616"},{"key":"bibr3-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1016\/j.cps.2018.12.001"},{"key":"bibr4-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1001\/archotol.133.10.997"},{"key":"bibr5-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000006691"},{"key":"bibr6-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2020.03.025"},{"key":"bibr7-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1007\/s00405-021-06903-5"},{"key":"bibr8-10556656221091699","doi-asserted-by":"publisher","DOI":"10.1177\/1359104509355021"},{"key":"bibr9-10556656221091699","unstructured":"UK Care standards for the management of patients with microtia and atresia. http:\/\/www.microtiauk.org Web site. http:\/\/www.microtiauk.org\/wp-content\/uploads\/MICROTIA-and-ATRESIA-CARE-STANDARDS-final-May-2019-004.pdf. 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