{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,6,6]],"date-time":"2025-06-06T04:48:56Z","timestamp":1749185336869,"version":"3.37.3"},"reference-count":24,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2014,3,27]],"date-time":"2014-03-27T00:00:00Z","timestamp":1395878400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Martha McMenamin Scholarship"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Specialist Pediatric Nursing"],"published-print":{"date-parts":[[2014,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>The purpose of this project was to gather parents' expertise to inform an educational leaflet for parents to share with professionals caring for children with 22q11.2 deletion syndrome (22q11.2 <jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content>).<\/jats:p><\/jats:sec><jats:sec><jats:title>Design and Methods<\/jats:title><jats:p>A mixed\u2010method design was adopted. Data were collected by one focus group interview (<jats:italic>n = 8<\/jats:italic>) and questionnaires with 92 other parents of children with 22q11.2 <jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Quantitative and qualitative responses informed the development of an information leaflet.<\/jats:p><\/jats:sec><jats:sec><jats:title>Practice Implications<\/jats:title><jats:p>Parents are well positioned to assist in development of information leaflets that can minimize \u201crepeated storytelling\u201d during professional encounters.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jspn.12078","type":"journal-article","created":{"date-parts":[[2014,3,27]],"date-time":"2014-03-27T10:55:16Z","timestamp":1395917716000},"page":"238-246","source":"Crossref","is-referenced-by-count":3,"title":["Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters"],"prefix":"10.1111","volume":"19","author":[{"given":"Honor","family":"Nicholl","sequence":"first","affiliation":[{"name":"School of Nursing and Midwifery Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carmel","family":"Doyle","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thelma","family":"Begley","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maryanne","family":"Murphy","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne","family":"Lawlor","sequence":"additional","affiliation":[{"name":"22q 11 Ireland Support Group"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helen","family":"Malone","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,3,27]]},"reference":[{"volume-title":"Missing genetic pieces: Strategies for living with VCFS (the chromosome 22q11.2 deletion)","year":"2004","author":"Baker\u2010Gomez S.","key":"e_1_2_13_2_1"},{"doi-asserted-by":"publisher","key":"e_1_2_13_3_1","DOI":"10.1016\/0260-6917(91)90009-Y"},{"doi-asserted-by":"publisher","key":"e_1_2_13_4_1","DOI":"10.1111\/j.1365\u20102702.2006.01554.x"},{"volume-title":"Living with a sick child in hospital","year":"1994","author":"Darbyshire P.","key":"e_1_2_13_5_1"},{"doi-asserted-by":"publisher","key":"e_1_2_13_6_1","DOI":"10.1111\/j.1365\u20102788.2007.00955.x"},{"doi-asserted-by":"publisher","key":"e_1_2_13_7_1","DOI":"10.1007\/s00787\u2010012\u20100273\u2010x"},{"volume-title":"Qualitative research in nursing and healthcare","year":"2009","author":"Holloway I.","key":"e_1_2_13_8_1"},{"key":"e_1_2_13_9_1"},{"doi-asserted-by":"publisher","key":"e_1_2_13_10_1","DOI":"10.5694\/j.1326-5377.2006.tb00477.x"},{"doi-asserted-by":"publisher","key":"e_1_2_13_11_1","DOI":"10.1097\/MD.0b013e3182060469"},{"unstructured":"McGarvey B. &Hart C.(2008).An investigation into the social support needs of families who experience rare disorders on the island of Ireland. 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