{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:47:24Z","timestamp":1790815644070,"version":"4.1.0"},"reference-count":41,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,6,5]],"date-time":"2022-06-05T00:00:00Z","timestamp":1654387200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2022,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>A qualitative study was performed using semi\u2010structured interviews with 20 parents of children with Down syndrome and six healthcare professionals.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We showed that parents and professionals have concerns during each of the three distinct phases of transition (preparation, transfer and integration). Data disclose specific concerns regarding communication, continuity of care and rebuilding trust. We propose a framework for the transition to adult care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The transition in medical care for children with Down syndrome should be flexible, patient\u2010centred and coordinated together with patients and parents. Only in ensuring continuity of care will individuals with Down syndrome not get lost in transition.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.13015","type":"journal-article","created":{"date-parts":[[2022,6,6]],"date-time":"2022-06-06T05:54:17Z","timestamp":1654494857000},"page":"1208-1216","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in <scp>Down<\/scp> syndrome"],"prefix":"10.1111","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9777-7777","authenticated-orcid":false,"given":"Vincent J. T.","family":"Peters","sequence":"first","affiliation":[{"name":"Department of Management, Tilburg School of Economics and Management Tilburg University  Tilburg The Netherlands"},{"name":"Department of Internal Medicine Catharina Ziekenhuis  Eindhoven The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Levinus A.","family":"Bok","sequence":"additional","affiliation":[{"name":"Department of Paediatrics M\u00e1xima Medisch Centrum  Veldhoven The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lieke","family":"de Beer","sequence":"additional","affiliation":[{"name":"Department of Management, Tilburg School of Economics and Management Tilburg University  Tilburg The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joyce J. M.","family":"van Rooij","sequence":"additional","affiliation":[{"name":"Department of Management, Tilburg School of Economics and Management Tilburg University  Tilburg The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bert R.","family":"Meijboom","sequence":"additional","affiliation":[{"name":"Department of Management, Tilburg School of Economics and Management Tilburg University  Tilburg The Netherlands"},{"name":"Department of Tranzo, Tilburg School of Social and Behavioral Sciences Tilburg University  Tilburg Noord\u2010Brabant The Netherlands"},{"name":"Department of Marketing, Innovation and Organization Ghent University  Ghent Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan Erik H.","family":"Bunt","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Elisabeth\u2010TweeSteden Ziekenhuis  Tilburg The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,6,5]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-1130.2011.00286.x"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-51.3.176"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732316654870"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/1054-139x(93)90143-d"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2018.03.012"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-1605"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-017-2917-9"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38512"},{"key":"e_1_2_8_11_1","first-page":"57","article-title":"Richtlijnen voor de medische begeleiding van volwassenen met het Downsyndroom. 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