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Yet, little is understood about families\u2019 treatment experiences or the impact of CFM on caregivers\u2019 well-being. To address this gap, the NIH-funded \u2018Craniofacial microsomia: Accelerating Research and Education (CARE)\u2019 program sought to develop a conceptual thematic framework of caregiver adjustment to CFM.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>\n                      Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (\n                      <jats:italic toggle=\"yes\">n\u2009<\/jats:italic>\n                      =\u200962) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of \u201chigh\u201d and \u201clow\u201d points throughout their journey and shared their priorities for future research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Narrative interviews provided rich insight into caregivers\u2019 experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656241245284","type":"journal-article","created":{"date-parts":[[2024,4,8]],"date-time":"2024-04-08T03:35:47Z","timestamp":1712547347000},"page":"1228-1240","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":9,"title":["A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia"],"prefix":"10.1177","volume":"62","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1285-691X","authenticated-orcid":false,"given":"Nicola M.","family":"Stock","sequence":"first","affiliation":[{"name":"Centre 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":"Centre for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jade","family":"Parnell","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2029-5873","authenticated-orcid":false,"given":"Alexis L.","family":"Johns","sequence":"additional","affiliation":[{"name":"Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles, Los Angeles, CA, USA"}],"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":"Nationwide Children's Hospital, Columbus, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0329-5671","authenticated-orcid":false,"given":"Kristin","family":"Billaud Feragen","sequence":"additional","affiliation":[{"name":"Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura P.","family":"Stueckle","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Mills","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leanne","family":"Magee","sequence":"additional","affiliation":[{"name":"Buerger Center for Advanced Pediatric Care, Children's Hospital of Philadelphia, Philadelphia, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4400-0320","authenticated-orcid":false,"given":"Matthew","family":"Hotton","sequence":"additional","affiliation":[{"name":"Oxford Institute of Clinical Psychology Training and Research, University of Oxford, Oxford, England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Tumblin","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Schefer","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amelia F.","family":"Drake","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology\/Head and Neck Surgery, University of North Carolina at Chapel School of Medicine, Chapel Hill, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2178-7730","authenticated-orcid":false,"given":"Carrie L.","family":"Heike","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,4,8]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.cps.2018.12.001"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000006691"},{"key":"e_1_3_3_4_2","unstructured":"American Cleft-Palate Craniofacial Association. 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