{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T01:27:48Z","timestamp":1784078868736,"version":"3.55.0"},"reference-count":38,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,11,6]],"date-time":"2023-11-06T00:00:00Z","timestamp":1699228800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Children with neuromuscular weakness or central hypoventilation often require nocturnal ventilation. Children with these conditions are living longer and the numbers of children affected are increasing. The challenges associated with managing ventilation at home have been documented; however, there has been limited investigation into accessing wider experiences such as travel. Air travel, in particular, may be considered challenging for children with these conditions because oxygen levels are lower in airplane cabins than at sea levels.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>We sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Two semi\u2010structured interviews were conducted amongst participants enrolled in a trial of a new pre\u2010flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19\u2009months to 18\u2009years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3\u2009months later. Data were analysed utilising the framework approach to thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Seventeen families participated in the first interview with 14 of these families completing the follow\u2010up interview. Three further families participated in the follow\u2010up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub\u2010themes were (1) insight into children's lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.13188","type":"journal-article","created":{"date-parts":[[2023,11,6]],"date-time":"2023-11-06T12:44:15Z","timestamp":1699274655000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["\u2018It gives me more freedom\u2019: Family perspectives on travelling with children on nocturnal ventilation"],"prefix":"10.1111","volume":"50","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6191-598X","authenticated-orcid":false,"given":"Mollie","family":"Riley","sequence":"first","affiliation":[{"name":"Lung Function Laboratory Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Brotherston","sequence":"additional","affiliation":[{"name":"Lung Function Laboratory Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Samuels","sequence":"additional","affiliation":[{"name":"Lung Function Laboratory Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"},{"name":"Respiratory Medicine Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharine C.","family":"Pike","sequence":"additional","affiliation":[{"name":"Bristol Royal Hospital for Children  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0581-5474","authenticated-orcid":false,"given":"Paula","family":"Kelly","sequence":"additional","affiliation":[{"name":"Centre for Outcomes and Experience Research in Children's Health Illness and Disability Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,11,6]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2021-323562"},{"key":"e_1_2_12_3_1","unstructured":"Bayes H. K. Barnham S. W. &Davidson S.(2012).Commercial air travel: A handbook for people with neuromuscular weakness. West of Scotland Long Term Ventilation Unit Department of Respiratory Medicine Southern General University Hospitals Glasgow."},{"key":"e_1_2_12_4_1","volume-title":"Successful qualitative research: A practical guide for beginners","author":"Braun V.","year":"2013"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.paed.2019.01.013"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0789"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.smrv.2017.02.005"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2021-218110"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.25221"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.25107"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2020.583877"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/1468794109348686"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2012.11.004"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0020-7489(01)00069-4"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/thx.2008.099143"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2019-317965"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.aucc.2010.11.001"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2702.1999.00258.x"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.13014"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13034-023-00569-z"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2020.584334"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12887-019-1634-0"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.26163"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0210574"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01338.x"},{"issue":"2","key":"e_1_2_12_26_1","first-page":"A236","article-title":"550 Modified hypoxic challenge testing in children on nocturnal ventilation","volume":"107","author":"Samuels M.","year":"2022","journal-title":"Archives of Disease in Childhood"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2015-309796"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.3357\/AMHP.4345.2016"},{"key":"e_1_2_12_29_1","unstructured":"The National Confidential Enquiry into Patient Outcome and Death. (2020).Balancing the pressures. A review of the quality of care provided to children and young people aged 0\u201324\u2009years who were receiving long\u2010term ventilation. London.https:\/\/www.ncepod.org.uk\/2020ltv.html"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apnr.2019.151195"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1177\/0193945910389623"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-020-01460-2"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/00258172221143588"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2010.192864"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406920982145"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.12127"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13096"},{"key":"e_1_2_12_39_1","volume-title":"International Classification of Functioning, Disability and Health (ICF)","author":"World Health Organization","year":"2001"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.13188","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,12]],"date-time":"2025-04-12T09:37:08Z","timestamp":1744450628000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.13188"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,6]]},"references-count":38,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,1]]}},"alternative-id":["10.1111\/cch.13188"],"URL":"https:\/\/doi.org\/10.1111\/cch.13188","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11,6]]},"assertion":[{"value":"2023-02-09","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-01","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-11-06","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e13188"}}