{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T12:56:39Z","timestamp":1782824199780,"version":"3.54.5"},"reference-count":26,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2017,3,30]],"date-time":"2017-03-30T00:00:00Z","timestamp":1490832000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2017,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>22q11.2 deletion syndrome (22q11DS) is a multisystem genetic condition with a broad phenotype. It is associated with a high prevalence of depression and anxiety during childhood and increased risk of schizophrenia in adulthood. Despite this, studies report that families may receive inadequate information of mental health (MH) risks at diagnosis. Therefore, this study investigated parents' experiences of caring for a child with 22q11DS, investigated their knowledge regarding the risk of MH problems and assessed the need for a psycho\u2010educational programme.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A qualitative design and purposeful sampling was utilized. Parents registered with the \u201822q11 Ireland\u2019 support group, and parents listed on the cleft palate database in a children's hospital in Ireland were invited to participate. Focus groups were held with 22 parents. Data were thematically analysed using Burnard's method of analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Most parents had some knowledge of the relationship between 22q11DS and an increased risk of MH issues. Parents reported that MH information relating to 22q11DS was mainly obtained from 22q11DS conferences, the \u201822q11 Ireland\u2019 support group and the Internet. Parents expressed a need for information to prevent or cope with their child's MH issues. Parents suggested that the following topics would be quite useful in a psycho\u2010educational programme. These included information on the early warning signs of MH issues and guidance on when and how to tell the child about the condition and how to manage the child or young person's anxiety, obsessive behaviour or hearing voices.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The findings indicated parental support for a psycho\u2010educational programme that would provide relevant, accurate and timely information on how to effectively care for a child with 22q11DS MH needs.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12457","type":"journal-article","created":{"date-parts":[[2017,3,31]],"date-time":"2017-03-31T00:54:04Z","timestamp":1490921644000},"page":"527-535","source":"Crossref","is-referenced-by-count":16,"title":["Development of a 22q11DS psycho\u2010educational programme: exploration of the views, concerns and educational needs of parents caring for children or adolescents with 22q11DS in relation to mental health issues"],"prefix":"10.1111","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6799-3663","authenticated-orcid":false,"given":"T.","family":"Alugo","sequence":"first","affiliation":[{"name":"Addictions &amp; Mental Health Services, Department of Psychiatry Saint John Regional Hospital Saint John NB Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Malone","sequence":"additional","affiliation":[{"name":"School of Nursing &amp; Midwifery Trinity College Dublin 2 Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Sheehan","sequence":"additional","affiliation":[{"name":"School of Nursing &amp; Midwifery Trinity College Dublin 2 Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"I.","family":"Coyne","sequence":"additional","affiliation":[{"name":"School of Nursing &amp; Midwifery Trinity College Dublin 2 Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Lawlor","sequence":"additional","affiliation":[{"name":"22Q11 Ireland Dublin 7 Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"F.","family":"McNicholas","sequence":"additional","affiliation":[{"name":"Child and Adolescent Psychiatry, School of Medicine University College Dublin Dublin Ireland"},{"name":"Child and Adolescent Psychiatry Lucena Clinic Dublin Ireland"},{"name":"Department of Child Psychiatry Our Lady's Children's Hospital, Crumlin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,3,30]]},"reference":[{"key":"e_1_2_13_2_1","unstructured":"\u201822q11 Ireland\u2019 support group. 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C.","year":"2005","journal-title":"Images in Paediatric Cardiology"},{"key":"e_1_2_13_9_1","first-page":"12","article-title":"Awakening and building upon prior knowledge","volume":"27","author":"Fontichario K.","year":"2010","journal-title":"School Library Monthly"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-010-9339-4"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32466"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2006.08.007"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/MD.0b013e3182060469"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(19971017)72:2<210::AID-AJMG16>3.0.CO;2-Q"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijdevneu.2010.08.005"},{"key":"e_1_2_13_16_1","doi-asserted-by":"crossref","unstructured":"Navidian A. Kermansaravi F.&RigiSN(2012)The effectiveness of a group psycho\u2010educational programme on daily caregiver burden of patients with mental disorders. BMC Research Notes: 5:399 Available athttp:\/\/www.biomedicalcentral.com\/1756\u20100500\/5\/399(last accessed 3 October 2016).","DOI":"10.1186\/1756-0500-5-399"},{"key":"e_1_2_13_17_1","unstructured":"NSSUI(2008\u20132013)The National Strategy for Service User Involvement in the Irish Health Services. 2008\u2010213 Available at:http:\/\/www.hse.ie\/eng\/services\/publications\/Your_Service _Your_Say_Consumer_Affairs\/Strategy\/Service_User_Involvement.pdf(last accessed 22 March 2017)."},{"key":"e_1_2_13_18_1","unstructured":"Prasad S.&MurphyK.(2009)Managing 22q11.2 deletion syndrome and its effects. Irish Medical Times. Available at:www.imt.ie\/clinical\/genito\u2010urinary\/2009\/02\/managing\u201022q11\u20102\u2010deletion\u2010syndrome\u2010and\u2010its\u2010effects.html(last accessed 3 October 2016)."},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.ajp.2013.13070864"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00787-013-0469-8"},{"key":"e_1_2_13_21_1","first-page":"89","article-title":"Mechanistic approach to understanding psychosis risk in velocardiofacial syndrome","volume":"5","author":"Shashi V.","year":"2009","journal-title":"Current Cardiac Reviews"},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0030-6665(05)70278-4"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbr.2014.05.056"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11689-010-9043-6"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.4103\/0253-7176.122224"},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11920-004-0062-4"},{"key":"e_1_2_13_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1471-4914(03)00141-2"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12457","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12457","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,23]],"date-time":"2024-06-23T10:36:41Z","timestamp":1719139001000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12457"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,3,30]]},"references-count":26,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2017,7]]}},"alternative-id":["10.1111\/cch.12457"],"URL":"https:\/\/doi.org\/10.1111\/cch.12457","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,3,30]]}}}