{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,10]],"date-time":"2026-11-10T10:55:45Z","timestamp":1794308145250,"version":"4.9.0"},"reference-count":14,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2024,3,18]],"date-time":"2024-03-18T00:00:00Z","timestamp":1710720000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100018379","name":"VTCT Foundation","doi-asserted-by":"publisher","award":["No grant award number assigned"],"award-info":[{"award-number":["No grant award number assigned"]}],"id":[{"id":"10.13039\/100018379","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":[[2025,6]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Despite growing recognition that congenital craniofacial conditions have lifelong implications, psychological support for adults is currently lacking. The aim of this project was to produce a series of short films about living with craniosynostosis in adulthood, alongside a psychoeducational booklet.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>The resources were developed using multiple focus groups and meetings attended by researchers, patient representatives, a leading charitable organisation, an award-winning film production company, clinicians, and other experts in the field.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      An online mixed-methods survey was developed based on prior work to request feedback on the acceptability and utility of the resources from the craniosynostosis community. While data collection to evaluate the resources is ongoing, preliminary results (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200936) highlight an acceptability rating of 100%.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The resources developed represent a step forward in addressing the unmet information and support needs of adults with craniosynostosis and highlight the benefits of co-production in research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656241236580","type":"journal-article","created":{"date-parts":[[2024,3,19]],"date-time":"2024-03-19T02:18:03Z","timestamp":1710814683000},"page":"1074-1078","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["\u201cWhen I was Younger, My Story Belonged to Everyone Else\u201d: Co-production of Resources for Adults Living with Craniosynostosis"],"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"}]},{"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":"William","family":"Bannister","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Ashby","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nammie","family":"Matthews","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Hebden","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Melles","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zoe","family":"Hilton-Webb","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sally","family":"Smith","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristian","family":"Kane","sequence":"additional","affiliation":[{"name":"Fine Rolling Media, Bridgend, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lewis","family":"Carter","sequence":"additional","affiliation":[{"name":"Fine Rolling Media, Bridgend, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Kearney","sequence":"additional","affiliation":[{"name":"Alder Hey Craniofacial Unit, Alder Hey Children's NHS Foundation Trust, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Piggott","sequence":"additional","affiliation":[{"name":"Alder Hey Craniofacial Unit, Alder Hey Children's NHS Foundation Trust, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Russell","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Wilkinson-Bell","sequence":"additional","affiliation":[{"name":"Headlines Craniofacial Support, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,3,18]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1597\/11-138"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1597\/10-143"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1177\/1055665618768540"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1177\/1055665619896681"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1177\/1055665620987109"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0b013e318262f355"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.3109\/2000656X.2013.868811"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1597\/13-314"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1597\/14-178"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1177\/1055665620968342"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1177\/1055665620944758"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1177\/10556656211059966"},{"key":"e_1_3_3_14_2","volume-title":"Private Correspondence","author":"Wilkie A","year":"2022","unstructured":"Wilkie A. Private Correspondence. Headlines Craniofacial Support; 2022."},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000008454"}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656241236580","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/10556656241236580","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656241236580","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:21:45Z","timestamp":1777393305000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/10556656241236580"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,3,18]]},"references-count":14,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1177\/10556656241236580"],"URL":"https:\/\/doi.org\/10.1177\/10556656241236580","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,3,18]]}}}