{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T05:27:54Z","timestamp":1788413274711,"version":"build-2803163510"},"reference-count":32,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2019,8,19]],"date-time":"2019-08-19T00:00:00Z","timestamp":1566172800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/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":[[2020,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The birth of a child with a congenital craniofacial anomaly (CFA) can have a profound psychological impact on the family. Despite the complexity and variability in treatment for these rare conditions, few studies have been conducted into parents\u2019 emotional responses to health-care experiences. The aim of the present study was to investigate parents\u2019 subjective experiences of their child\u2019s condition and treatment using an in-depth qualitative approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Individual semistructured interviews were conducted in person or over the telephone with 48 parents of children with a range of rare CFAs. Interviews were transcribed verbatim, translated into English, and analyzed using inductive thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Participants reported physical and psychological symptoms that could be indicative of medical traumatic stress in relation to their child\u2019s diagnosis and treatment. Participants described feelings of powerlessness and the weight of being responsible for their child\u2019s care. Yet, participants also reported that as a result of their experiences, their perspective on life had changed and they had grown in self-confidence.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>The findings provide insight into the complex physical and psychological effects experienced by parents in response to their child\u2019s diagnosis and medical treatment, as well as an understanding of how these experiences may also result in personal growth over time. Implementation of trauma-informed evidence-based resources should be considered in craniofacial care and future research, particularly in regard to prevention and treatment of psychological distress.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1055665619869146","type":"journal-article","created":{"date-parts":[[2019,8,20]],"date-time":"2019-08-20T00:51:06Z","timestamp":1566262266000},"page":"228-237","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":32,"title":["Medical Stress Reactions and Personal Growth in Parents of Children With a Rare Craniofacial Condition"],"prefix":"10.1177","volume":"57","author":[{"given":"Kristin Billaud","family":"Feragen","sequence":"first","affiliation":[{"name":"Centre for Rare Disorders, Oslo University Hospital (Rikshospitalet), Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"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, England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anita","family":"Myhre","sequence":"additional","affiliation":[{"name":"Centre for Rare Disorders, Oslo University Hospital (Rikshospitalet), Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2075-6852","authenticated-orcid":false,"given":"Bernt J.","family":"Due-t\u00f8nnessen","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Oslo University Hospital (Rikshospitalet), Oslo, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2019,8,19]]},"reference":[{"key":"e_1_3_5_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.PCC.0000137354.19807.44"},{"key":"e_1_3_5_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2017.11.004"},{"key":"e_1_3_5_4_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_3_5_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000000308"},{"key":"e_1_3_5_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2016.1247838"},{"key":"e_1_3_5_7_1","volume-title":"Man\u2019s Search For Meaning: An Introduction To Logotherapy","author":"Frankl Viktor E","year":"1984","unstructured":"Frankl Viktor E. 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