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Once a PWS diagnosis is established, sharing diagnosis information with an affected child can be challenging due to its early age of onset and diverse phenotype. This mixed\u2010methods study aimed to evaluate how parents and guardians have shared a PWS diagnosis with their child and examine the motivating and influencing factors behind their disclosure. Parents and guardians of children with PWS aged at least 5\u2009years completed a survey, and a select group completed an interview. A total of 51 surveys and 15 interviews were completed, with the majority of participants (<jats:italic>n<\/jats:italic>\u2009=\u200946; 90%) having shared at least some diagnosis information with their child. Parents and guardians were more likely to disclose if they self\u2010reported a higher level of knowledge about PWS (<jats:italic>p<\/jats:italic>\u2009=\u20090.004) and if their child is currently older (<jats:italic>p<\/jats:italic>\u2009=\u20090.02) and\/or has at least one sibling (<jats:italic>p<\/jats:italic>\u2009=\u20090.046). Interview analysis revealed 15 themes and 10 subthemes that illustrated parents' motivations, methods, and experiences with disclosure. This research provides information for others considering disclosure of PWS or another rare diagnosis with their child.<\/jats:p>","DOI":"10.1002\/ajmg.a.63794","type":"journal-article","created":{"date-parts":[[2024,6,22]],"date-time":"2024-06-22T02:35:28Z","timestamp":1719023728000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The motivations and methods behind sharing a pediatric <scp>Prader\u2013Willi<\/scp> syndrome diagnosis"],"prefix":"10.1002","volume":"194","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5530-7091","authenticated-orcid":false,"given":"Victoria F.","family":"Moy","sequence":"first","affiliation":[{"name":"Department of Clinical and Diagnostic Sciences University of Alabama at Birmingham  Birmingham Alabama USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica J.","family":"Denton","sequence":"additional","affiliation":[{"name":"Department of Clinical and Diagnostic Sciences University of Alabama at Birmingham  Birmingham Alabama USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica E.","family":"Bohonowych","sequence":"additional","affiliation":[{"name":"Foundation for Prader\u2010Willi Research  Covina California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6783-8703","authenticated-orcid":false,"given":"Theresa V.","family":"Strong","sequence":"additional","affiliation":[{"name":"Foundation for Prader\u2010Willi Research  Covina California USA"},{"name":"Department of Genetics University of Alabama at Birmingham  Birmingham Alabama USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,6,21]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2004.01.011"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.20945\/2359\u20103997000000248"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.66.6.912"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1037\/13620-004"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/14780887.2020.1769238"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.2174\/1573396315666190716120925"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.0b013e31822bead0"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-009-9274-4"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-014-9741-4"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1352\/0895-8017(2001)106<0039:EOCBAT>2.0.CO;2"},{"volume-title":"Prader\u2013Willi Syndrome","year":"2023","author":"Driscoll D. 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