{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T00:46:25Z","timestamp":1787013985582,"version":"build-2736575974"},"reference-count":19,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2019,7,30]],"date-time":"2019-07-30T00:00:00Z","timestamp":1564444800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2019,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>With improving neonatal intensive care, more preterm babies or those with hypoxic\u2010ischaemic encephalopathy are surviving the newborn period. These babies are at high risk of neurodevelopmental delay. No studies to date have looked at the views of parents and professionals in relation to the processes of follow\u2010up for these infants.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a qualitative study in order to understand the views of parents of preterm babies or those with hypoxic\u2010ischaemic encephalopathy as well as the views of professionals who manage and support these families. Parents were recruited through general neonatal follow\u2010up clinics, neonatal nurse liaison services and community child health clinics and professionals through the neonatal unit and neurodevelopmental paediatrics services. We conducted in\u2010depth interviews using an open\u2010ended topic guide, which were audio recorded, transcribed and coded. We conducted a thematic content analysis where themes were inductively highlighted and grouped by consensus in order to conclude on major themes and subthemes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Three major themes were identified for parents and professionals. These were the following: (a) What is the future, (b) What is the journey and (c) Who can help me? Parents wanted better information earlier about the prognosis and diagnoses through face to face, honest consultations with follow\u2010up information available on the Internet. The most important requirements for follow\u2010up clinics were honesty, reassurance, consistent pathways of follow\u2010up and the need for a lead professional in the process. Alongside the follow\u2010up process, there was a need for support groups and psychological support<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This study highlights the desire by parents for early information on the likely long\u2010term outlook for their babies but the need to ensure that the information and support, which is given, is provided appropriately and with consideration in order to provide the best care of the whole family.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/cch.12713","type":"journal-article","created":{"date-parts":[[2019,7,22]],"date-time":"2019-07-22T08:18:25Z","timestamp":1563783505000},"page":"808-814","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["A journey through follow\u2010up for neurodevelopmentally at\u2010risk infants\u2014A qualitative study on views of parents and professionals in Liverpool"],"prefix":"10.1111","volume":"45","author":[{"given":"Ayuko","family":"Komoriyama","sequence":"first","affiliation":[{"name":"Department of Women and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Trust University of Liverpool  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fauzia","family":"Paize","sequence":"additional","affiliation":[{"name":"Liverpool Women's NHS Foundation Trust  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esme","family":"Littlefair","sequence":"additional","affiliation":[{"name":"Department of Women and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Trust University of Liverpool  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chris","family":"Dewhurst","sequence":"additional","affiliation":[{"name":"Liverpool Women's NHS Foundation Trust  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2579-9301","authenticated-orcid":false,"given":"Melissa","family":"Gladstone","sequence":"additional","affiliation":[{"name":"Department of Women and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Trust University of Liverpool  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,7,30]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e7976"},{"key":"e_1_2_8_4_1","unstructured":"Excellence N. I. f. H. C. a. C.(2017).Developmental follow\u2010up of children and young people born preterm NICE guideline 72. Retrieved from London:https:\/\/www.nice.org.uk\/guidance\/ng72"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2014.01.014"},{"key":"e_1_2_8_6_1","doi-asserted-by":"crossref","unstructured":"Hobbs J. E. Tschudy M. M. Hussey\u2010Gardner B. Jennings J. M. &Boss R. D.(2017).\u201cI don't know what I was expecting\u201d: Home visits by neonatology fellows for infants discharged from the NICU (Vol. 44 pp. 331\u2010336).","DOI":"10.1111\/birt.12301"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-3028"},{"key":"e_1_2_8_8_1","first-page":"CD003311","article-title":"Cooling for newborns with hypoxic ischaemic encephalopathy","volume":"1","author":"Jacobs S. E.","year":"2013","journal-title":"Cochrane Database of Systematic Reviews"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12098-008-0075-9"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13697"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2007-973465"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e7961"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073816656400"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.5539\/elt.v5n9p9"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/088307380101600904"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.3928\/19382359-20180325-03"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016-0251"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1038\/jp.2014.43"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0882-5963(97)80074-7"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12713","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/cch.12713","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12713","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T14:02:37Z","timestamp":1694181757000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12713"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,7,30]]},"references-count":19,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,11]]}},"alternative-id":["10.1111\/cch.12713"],"URL":"https:\/\/doi.org\/10.1111\/cch.12713","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,7,30]]},"assertion":[{"value":"2019-06-12","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-06-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-07-30","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}