{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T23:54:57Z","timestamp":1780098897426,"version":"3.54.0"},"reference-count":31,"publisher":"Cambridge University Press (CUP)","issue":"7","license":[{"start":{"date-parts":[[2024,3,7]],"date-time":"2024-03-07T00:00:00Z","timestamp":1709769600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2024,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Dysphagia is common in children with CHDs, resulting in multiple stressors for their caregivers including having a child with a serious medical condition and coping with their child\u2019s feeding needs. However, relatively little is known about caregivers\u2019 perceptions and experiences of the burden of care and support needs for their child with a CHD and dysphagia in low-middle income contexts. This qualitative study investigated the burden of care and support needs identified by parents of children with CHDs and dysphagia in a single centre in South Africa. Semi-structured interviews took place in a tertiary hospital with seven mothers of children with CHDs and dysphagia, followed by content analysis. Participants described four main impacts of their child\u2019s condition, which included worry, the burden of caregiving, emotional responses, and acceptance and coping. The participants were well-supported by speech-language therapists and dieticians, but suggestions for additional support included support groups and using mobile messaging apps for communication with peers and professionals. The study has important implications for understanding challenges faced by caregivers of children with complex needs in low-middle income settings and will be useful to inform and improve holistic healthcare practice for families of children with CHDs and dysphagia.<\/jats:p>","DOI":"10.1017\/s1047951124000271","type":"journal-article","created":{"date-parts":[[2024,3,7]],"date-time":"2024-03-07T10:19:52Z","timestamp":1709806792000},"page":"1476-1481","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":8,"title":["Care burden and support needs of caregivers of infants and children with CHDs and dysphagia"],"prefix":"10.1017","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-6480-513X","authenticated-orcid":false,"given":"Vivienne","family":"Norman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3961-2760","authenticated-orcid":false,"given":"Liesl","family":"Z\u00fchlke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brenda","family":"Morrow","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2024,3,7]]},"reference":[{"key":"S1047951124000271_ref5","doi-asserted-by":"crossref","first-page":"e005934","DOI":"10.1136\/bmjopen-2014-005934","article-title":"What do parents of children with dysphagia think about their MDT? 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children","volume":"12","author":"Lawoko","year":"2003","journal-title":"Qual Life Res"},{"key":"S1047951124000271_ref10","doi-asserted-by":"crossref","first-page":"1736","DOI":"10.1007\/s10826-019-01406-8","article-title":"Coping in parents of children with congenital heart disease: a systematic review and meta-synthesis","volume":"28","author":"Lumsden","year":"2019","journal-title":"J Child Fam Stud"},{"key":"S1047951124000271_ref15","doi-asserted-by":"crossref","first-page":"e12302","DOI":"10.1111\/mcn.12302","article-title":"\u201cI was so worried about every drop of milk\u201d\u2013feeding problems at home are a significant concern for parents after major heart surgery in infancy","volume":"13","author":"Tregay","year":"2017","journal-title":"Matern Child Nutr"},{"key":"S1047951124000271_ref8","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1080\/24694193.2017.1372532","article-title":"Parenting stress in parents of infants with congenital heart disease and parents of 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