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How these are communicated to parents has a marked emotional impact, but minimal research has investigated this. The purpose of this study was to explore parent experiences and preferences when their baby was diagnosed with dysmelia. Mothers and fathers were interviewed. Data were analyzed using thematic analysis. The overriding emotion parents experienced was shock, but the extent of this was influenced by several factors including their previous experience of disability. Four key needs of parents were identified, including the need for signposting to peer support organizations, for information, for sensitive communication, and for a plan regarding their child\u2019s care. Parents wanted immediate information provision and signposting to peer support, and for discussions regarding possible causes of the dysmelia or termination (in the case of prenatal identification) to be delayed until they had processed the news.<\/jats:p>","DOI":"10.1177\/1074840718772808","type":"journal-article","created":{"date-parts":[[2018,5,16]],"date-time":"2018-05-16T03:02:00Z","timestamp":1526439720000},"page":"271-293","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":11,"title":["Parent Experiences and Preferences When Dysmelia Is Identified During the Prenatal and Perinatal Periods: A Qualitative Study Into Family Nursing Care for Rare Diseases"],"prefix":"10.1177","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0431-013X","authenticated-orcid":false,"given":"Judith","family":"Johnson","sequence":"first","affiliation":[{"name":"University of Leeds, UK"},{"name":"Bradford Institute for Health Research, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Olivia","family":"Johnson","sequence":"additional","affiliation":[{"name":"Cygnet Hospital, Greater Manchester, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane","family":"Heyhoe","sequence":"additional","affiliation":[{"name":"Bradford Institute for Health Research, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte","family":"Fielder","sequence":"additional","affiliation":[{"name":"European Dysmelia Reference and Information Centre, Bastad, Sweden"},{"name":"National Council for Voluntary Organizations, London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alice","family":"Dunning","sequence":"additional","affiliation":[{"name":"University of Leeds, UK"},{"name":"Bradford Institute for Health Research, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2018,5,16]]},"reference":[{"key":"bibr1-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1002\/uog.906"},{"key":"bibr2-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1037\/a0015651"},{"key":"bibr3-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1097\/01.ANC.0000342768.94734.23"},{"key":"bibr4-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1016\/j.srhc.2011.12.002"},{"key":"bibr5-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1634\/theoncologist.5-4-302"},{"key":"bibr6-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7294.1115"},{"key":"bibr7-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1177\/1074840716680837"},{"key":"bibr8-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"bibr9-1074840718772808","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0488-9"},{"key":"bibr10-1074840718772808","doi-asserted-by":"crossref","DOI":"10.1007\/978-1-60327-161-5","volume-title":"Atlas of genetic diagnosis and counseling","author":"Chen H.","year":"2006"},{"key":"bibr11-1074840718772808","unstructured":"Eurodis. 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