{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T03:37:23Z","timestamp":1783654643737,"version":"3.55.0"},"reference-count":31,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2020,3,16]],"date-time":"2020-03-16T00:00:00Z","timestamp":1584316800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"The Primary Children's Foundation","award":["Primary Children's Early Career Development Grant"],"award-info":[{"award-number":["Primary Children's Early Career Development Grant"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2020,6]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>To identify concepts and constructs important to parents of children with Pierre Robin Sequence (PRS).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>Qualitative study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting:<\/jats:title>\n                    <jats:p>All children received some care at a tertiary hospital with additional care at outside facilities. Interviews were conducted in nonclinical locations, including remote locations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants:<\/jats:title>\n                    <jats:p>Parents of children &lt;5 years old with a diagnosis of PRS. Prior treatments included observation, positioning, nasal trumpet, mandibular distraction osteogenesis, tracheostomy, and gastrostomy.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Intervention:<\/jats:title>\n                    <jats:p>Semi-structured interviews with individuals (4) and with groups (focus groups, 4) were conducted using open-ended questions and non-leading prompts. Transcripts were analyzed with iterative open and axial coding. Concepts and constructs were identified and refined into codes and central themes. Interviews were conducted until thematic saturation was achieved.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Sixteen parents were interviewed. Their experiences were coded into 5 main themes, which can be summarized as: (1) child\u2019s symptoms\/well-being, (2) parents\u2019 grief\/isolation, (3) family stress, (4) relationships with providers, and (5) psychological and technical growth. Difficulty with feeding, weight gain, and breathing problems were core physical issues described by participants with associated intense fear. Participants described frustration from not only lack of care coordination, slow diagnoses, and poor communication but also gratitude for providers who served as advocates. Participants described gradual development of knowledge\/competencies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Families of children with PRS have experiences that profoundly affect their lives. Child\u2019s physical symptoms\/well-being and parents\u2019 psychosocial well-being provide content for a future PRS-specific quality-of-life instrument. Concepts that emerged also provide a framework to improve parents\u2019 experience and enhance their children\u2019s quality of care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1055665620910331","type":"journal-article","created":{"date-parts":[[2020,3,16]],"date-time":"2020-03-16T06:29:03Z","timestamp":1584340143000},"page":"736-745","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":13,"title":["Family Experience With Pierre Robin Sequence: A Qualitative Study"],"prefix":"10.1177","volume":"57","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6034-2764","authenticated-orcid":false,"given":"Jonathan R.","family":"Skirko","sequence":"first","affiliation":[{"name":"Division of Pediatric Otolaryngology\u2013\u2013Head &amp; Neck Surgery, University of Utah and Primary Children\u2019s Hospital, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3359-1591","authenticated-orcid":false,"given":"Sarah Hatch","family":"Pollard","sequence":"additional","affiliation":[{"name":"Division of Pediatric Otolaryngology\u2013\u2013Head &amp; Neck Surgery, University of Utah and Primary Children\u2019s Hospital, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stacey","family":"Slager","sequence":"additional","affiliation":[{"name":"Department of Pharmacotherapy, University of Utah, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Man","family":"Hung","sequence":"additional","affiliation":[{"name":"College of Dental Medicine, Roseman University of Health Sciences, South Jordan, UT, USA"},{"name":"Department of Orthopaedic Surgery Operations, University of Utah, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlene","family":"Weir","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2020,3,16]]},"reference":[{"key":"e_1_3_2_2_1","doi-asserted-by":"publisher","DOI":"10.1597\/15-282"},{"key":"e_1_3_2_3_1","unstructured":"Atlas.ti [computer program]. 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