{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,7]],"date-time":"2026-11-07T06:07:02Z","timestamp":1794031622871,"version":"4.8.0"},"reference-count":29,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2021,11,29]],"date-time":"2021-11-29T00:00:00Z","timestamp":1638144000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010661","name":"Horizon 2020 Framework Programme","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010661","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Pediatr."],"abstract":"<jats:p>EUROlinkCAT aims to investigate the health and educational outcomes of children with congenital anomalies for the first 10 years of their lives. We also aim to facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals, and researchers by conducting focus groups. The aim of the focus groups and parent interviews was to investigate parental experiences of having a child with a heart defect requiring surgery, cleft lip, spina bifida or Down Syndrome and to identify their research priorities. In total, seven interviews with 12 parents and eight focus groups with 58 parents and two caregivers were conducted in four European countries. We found that parents request more positive information with a focus on quality of life and what the children can achieve rather than solely on the negative aspects and limitations of the congenital anomaly. Some parents also highlighted discrepancies between the family's need for support and the lack of support received from the local authority. Finally, it was challenging for the parents to address specific research priorities. Future research should therefore focus on the potential of a child with a congenital anomaly.<\/jats:p>","DOI":"10.3389\/fped.2021.654883","type":"journal-article","created":{"date-parts":[[2021,12,1]],"date-time":"2021-12-01T13:52:02Z","timestamp":1638366722000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":16,"title":["The Voice of Parents of Children With a Congenital Anomaly \u2013 A EUROlinkCAT Study"],"prefix":"10.3389","volume":"9","author":[{"given":"Kristina Garne","family":"Holm","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda Julie","family":"Neville","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Pierini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Latos Bielenska","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Jamry-Dziurla","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clara","family":"Cavero-Carbonell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ester","family":"Garne","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Clemensen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2021,11,29]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"22","DOI":"10.1136\/archdischild-2016-311845","article-title":"Estimating global burden of disease due to congenital anomaly: an analysis of European data","volume":"103","author":"Boyle","year":"2018","journal-title":"Arch Dis Child Fetal Neonatal."},{"key":"B2","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/1471-2431-9-32","article-title":"A retrospective population-based study of childhood hospital admissions with record linkage to a birth defects registry","volume":"9","author":"Colvin","year":"2009","journal-title":"BMC Pediatr."},{"key":"B3","doi-asserted-by":"publisher","first-page":"660","DOI":"10.1136\/jech.54.9.660","article-title":"Infant mortality and congenital anomalies from 1950 to 1994: an international perspective","volume":"54","author":"Rosano","year":"2000","journal-title":"J Epidemiol Community Health."},{"key":"B4","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1007\/978-90-481-9485-8_20","article-title":"The prevalence of congenital anomalies in Europe","volume":"686","author":"Dolk","year":"2010","journal-title":"Adv Exp Med Biol."},{"key":"B5","doi-asserted-by":"publisher","first-page":"649","DOI":"10.1016\/S0140-6736(09)61922-X","article-title":"20-year survival of children born with congenital anomalies: a population-based study","volume":"375","author":"Tennant","year":"2010","journal-title":"Lancet."},{"key":"B6","doi-asserted-by":"publisher","first-page":"64","DOI":"10.1007\/s10880-015-9418-7","article-title":"Parenting an infant with a congenital anomaly: how are perceived burden and perceived personal benefits related to parenting stress?","volume":"22","author":"Fonseca","year":"2015","journal-title":"J Clin Psychol Med Settings."},{"key":"B7","doi-asserted-by":"publisher","first-page":"839","DOI":"10.1111\/cch.12487","article-title":"The participation of parents of disabled children and young people in health and social care decisions","volume":"43","author":"McNeilly","year":"2017","journal-title":"Child Care Health Dev."},{"key":"B8","doi-asserted-by":"publisher","first-page":"214","DOI":"10.1097\/DBP.0b013e3182452dd8","article-title":"Health care needs of children with down syndrome and impact of health system performance on children and their families","volume":"33","author":"Phelps","year":"2012","journal-title":"J Dev Behav Pediatr."},{"key":"B9","unstructured":"2019"},{"key":"B10","unstructured":""},{"key":"B11","doi-asserted-by":"publisher","first-page":"1114","DOI":"10.1177\/1049732315616620","article-title":"Educating parents about pediatric research: children and clinical studies website qualitative evaluation","volume":"26","author":"Marceau","year":"2016","journal-title":"Qual Health Res."},{"key":"B12","volume-title":"Essentials of Nursing Research - 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