{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T04:34:34Z","timestamp":1777523674216,"version":"3.51.4"},"reference-count":43,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2021,12,30]],"date-time":"2021-12-30T00:00:00Z","timestamp":1640822400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:sec>\n                    <jats:title\/>\n                    <jats:p>To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of informing care, and support for this population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>Four young people (2 male) aged 11 to 15 years and their mothers were interviewed in their homes using a semistructured interview guide and photo-elicitation methods. Transcripts were analyzed using Interpretive Phenomenological Analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>Three superordinate themes were identified from the data: (1) Acceptance and Adjustment: A Cyclical Journey; (2) A Barrier to Adjustment: Navigating Treatment; and (3) Facilitating Adjustment: Social Support. Families described adjustment as a cyclical process, which was sensitive to change, particularly in the context of ongoing medical treatment. Families also utilized many resources, particularly in the form of social support, to adjust to the challenges of AS and build resilience.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>The findings of this study have important implications for the implementation of patient-centered care within designated craniofacial treatment centers, which should at a minimum include the provision of reliable information throughout the treatment pathway, additional support from health professionals at key times of transition, and the coordination of support across medical teams, and other key organizations in the child's life.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656211069817","type":"journal-article","created":{"date-parts":[[2021,12,30]],"date-time":"2021-12-30T11:10:13Z","timestamp":1640862613000},"page":"461-473","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":12,"title":["Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives"],"prefix":"10.1177","volume":"60","author":[{"given":"Jennifer","family":"Netherton","sequence":"first","affiliation":[{"name":"Health in Mind Team, Birmingham Women\u2019s and Children\u2019s Hospital UK, Birmingham, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1462-2962","authenticated-orcid":false,"given":"Jo","family":"Horton","sequence":"additional","affiliation":[{"name":"Health in Mind Team, Birmingham Women\u2019s and Children\u2019s Hospital UK, Birmingham, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1285-691X","authenticated-orcid":false,"given":"Nicola M","family":"Stock","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research, University of the West of England UK, Bristol, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Shaw","sequence":"additional","affiliation":[{"name":"School of Psychology, Aston University UK, Birmingham, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter","family":"Noons","sequence":"additional","affiliation":[{"name":"Craniofacial Team, Birmingham Women\u2019s and Children\u2019s Hospital UK, Birmingham, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin J.","family":"Evans","sequence":"additional","affiliation":[{"name":"Craniofacial Team, Birmingham Women\u2019s and Children\u2019s Hospital UK, Birmingham, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2021,12,30]]},"reference":[{"key":"bibr1-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2010.01.036"},{"key":"bibr2-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1080\/14768320500230185"},{"key":"bibr3-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.13710"},{"key":"bibr4-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1002\/9781118523384"},{"key":"bibr5-10556656211069817","doi-asserted-by":"publisher","DOI":"10.12968\/bjom.2019.27.3.151"},{"key":"bibr6-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jst049"},{"key":"bibr7-10556656211069817","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000002709"},{"key":"bibr8-10556656211069817","unstructured":"Department of Health.\n                      The UK Strategy for Rare Diseases\n                      . 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