{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T04:26:16Z","timestamp":1777523176030,"version":"3.51.4"},"reference-count":19,"publisher":"SAGE Publications","issue":"9","license":[{"start":{"date-parts":[[2019,5,29]],"date-time":"2019-05-29T00:00:00Z","timestamp":1559088000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Norwegian ExtraFoundation for Health and Rehabilitation","award":["2018\/FO203158"],"award-info":[{"award-number":["2018\/FO203158"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2019,10]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>Childhood is a period of extensive socioemotional development, which can be impacted by the presence of a congenital craniofacial anomaly (CFA). Complex multidisciplinary treatment and long-term follow-up are normally required, yet understanding of children\u2019s treatment experiences is limited. The objective of this study was to investigate children\u2019s experiences of multidisciplinary team (MDT) consultations from the perspective of their parents.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>Thirty-eight parents of children with a rare CFA were interviewed in person or over the telephone. Interviews were transcribed verbatim, translated into English, and explored using thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Background factors influencing the child\u2019s experience of the consultation included age, developmental stage, personality, and prior treatment experiences. Participants tried to prepare their child for meeting the MDT, but did not fully understand what to expect themselves. During consultations, participants were acutely focused on their child\u2019s emotional state, making it difficult to balance their desire to protect the child from potentially negative experiences, and the need to engage in a constructive dialogue with health professionals. Participants believed that health professionals\u2019 conduct could considerably influence the child\u2019s well-being and subsequent treatment decisions. Finally, participants highlighted the need to debrief their child to help them adjust positively.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>The ultimate goal of craniofacial care is to help children develop into confident adults who are able to cope with the challenges associated with their condition. Multidisciplinary teams play a vital role in creating a safe and supportive environment in which children feel genuinely informed and involved in key aspects of their care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1055665619851650","type":"journal-article","created":{"date-parts":[[2019,5,29]],"date-time":"2019-05-29T23:17:52Z","timestamp":1559171872000},"page":"1230-1238","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":14,"title":["\u201cExposed and Vulnerable\u201d: Parent Reports of Their Child\u2019s Experience of Multidisciplinary Craniofacial Consultations"],"prefix":"10.1177","volume":"56","author":[{"given":"Kristin","family":"Billaud Feragen","sequence":"first","affiliation":[{"name":"Centre for Rare Disorders, Oslo University Hospital (Rikshospitalet), Oslo, Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anita","family":"Myhre","sequence":"additional","affiliation":[{"name":"Centre for Rare Disorders, Oslo University Hospital (Rikshospitalet), Oslo, Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1285-691X","authenticated-orcid":false,"given":"Nicola Marie","family":"Stock","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research, University of the West of England, Bristol, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2019,5,29]]},"reference":[{"key":"bibr1-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1597\/02-158.1"},{"key":"bibr2-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"bibr3-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000000308"},{"key":"bibr4-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2016.1247838"},{"key":"bibr5-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1186\/s12887-017-0869-x"},{"key":"bibr6-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1016\/j.apnr.2018.06.015"},{"key":"bibr7-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1016\/j.otc.2017.03.005"},{"key":"bibr8-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1055\/s-0035-1545273"},{"key":"bibr9-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000004867"},{"key":"bibr10-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2018.06.006"},{"key":"bibr11-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1007\/s12178-017-9409-4"},{"key":"bibr19-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1177\/1055665619842730"},{"key":"bibr12-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01244.x"},{"key":"bibr13-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1597\/11-293"},{"key":"bibr14-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000003955"},{"key":"bibr15-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1177\/1359104509355021"},{"key":"bibr16-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-7610.2012.02615.x"},{"key":"bibr17-1055665619851650","doi-asserted-by":"publisher","DOI":"10.1177\/1055665617744064"},{"key":"bibr18-1055665619851650","unstructured":"World Health Organization. Policy Brief: Where Are the Patients in Decision-Making About Their Own Care? 2008. Available at: https:\/\/www.who.int\/management\/general\/decisionmaking\/WhereArePatientsinDecisionMaking.pdf. Accessed October 30, 2018."}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1055665619851650","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1055665619851650","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1055665619851650","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:19:58Z","timestamp":1777393198000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1055665619851650"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,5,29]]},"references-count":19,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2019,10]]}},"alternative-id":["10.1177\/1055665619851650"],"URL":"https:\/\/doi.org\/10.1177\/1055665619851650","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,5,29]]}}}