{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T10:40:02Z","timestamp":1790073602940,"version":"4.0.1"},"reference-count":39,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T00:00:00Z","timestamp":1705536000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T00:00:00Z","timestamp":1705536000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100001826","name":"ZonMw","doi-asserted-by":"publisher","award":["516006007"],"award-info":[{"award-number":["516006007"]}],"id":[{"id":"10.13039\/501100001826","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":[[2025,5]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>Adequate health information that matches the needs of care recipients is a prerequisite for patient-centered care. To facilitate the provision of tailored and timely information, it isimportant to understand the information needs of parents of children and adolescents with cleft lip and\/or palate (CL\/P) themselves, and in addition they were asked how they experienced the provided care-related information.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A cross-sectional study employing questionnaires and semi-structured interviews.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting:<\/jats:title>\n                    <jats:p>Participants were recruited from a cleft palate-craniofacial care unit in a major tertiary hospital in the Netherlands.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants:<\/jats:title>\n                    <jats:p>Participants were parents or guardians of children with CL\/P, and two adolescents with CLP. They were recruited through the outpatient clinic during multidisciplinary consultation or after clinical admission.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>In total, fifty-five questionnaires were completed by parents or guardians and eleven interviews were conducted with nine parents of children with CL\/P and two adolescents with CL\/P. In general, participants reported to be satisfied with provided information during hospital admission or multidisciplinary cleft team consultations (mean 8.0, scale 0\u201310). In addition, 25.5% (n\u2009=\u200914) indicated that information to prepare for hospital admission was lacking (eg, practical information). Thematic qualitative analysis yielded five main information needs: 1) Clear communication during the care process, 2) Overview of the care trajectory, 3) Specific care plan information, 4) Presentation of information and 5) Guidance and support.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Our findings emphasize the importance of gaining insights into wishes and information needs from care recipients who can provide insights in their information needs. With these findings, information provision should be redesigned to improve and to foster the further transition to family-centered care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656241227355","type":"journal-article","created":{"date-parts":[[2024,1,19]],"date-time":"2024-01-19T01:54:43Z","timestamp":1705629283000},"page":"853-862","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["What Parents of Children Born with a Cleft Lip and\/or Palate Want to Know About the Care for their Child"],"prefix":"10.1177","volume":"62","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5668-9287","authenticated-orcid":false,"given":"F.A.C.J.","family":"Heijsters","sequence":"first","affiliation":[{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, De Boelelaan 1117, Amsterdam, the Netherlands"},{"name":"Amsterdam Public Health Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6070-0533","authenticated-orcid":false,"given":"M.D.","family":"van Eick","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, De Boelelaan 1117, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"F.","family":"van Nassau","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Public and Occupational Health, De Boelelaan 1117, Amsterdam, the Netherlands"},{"name":"Amsterdam Public Health Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4245-783X","authenticated-orcid":false,"given":"M.","family":"Bouman","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, De Boelelaan 1117, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3587-7489","authenticated-orcid":false,"given":"Corstiaan C.","family":"Breugem","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location University of Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, Meibergdreef 9, Amsterdam, the Netherlands"},{"name":"Amsterdam Research Institute Reproduction and Development, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.C.","family":"de Bruijne","sequence":"additional","affiliation":[{"name":"Amsterdam Public Health Research Institute"},{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Public and Occupational Health, De Boelelaan 1117, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6407-5405","authenticated-orcid":false,"given":"M.G.","family":"Mullender","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location Vrije Universiteit Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, De Boelelaan 1117, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.P.W.","family":"Don Griot","sequence":"additional","affiliation":[{"name":"Amsterdam UMC location University of Amsterdam, Department of Plastic, Reconstructive and Hand Surgery, Meibergdreef 9, Amsterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,1,18]]},"reference":[{"key":"e_1_3_3_2_2","volume-title":"Principles and practice of pediatric plastic surgery","author":"Bentz ML","year":"2016","unstructured":"Bentz ML, Bauer BS, Zuker RM. 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