{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,26]],"date-time":"2026-10-26T19:56:52Z","timestamp":1793044612937,"version":"4.5.0"},"reference-count":126,"publisher":"National Institute for Health and Care Research","license":[{"start":{"date-parts":[[2024,9,1]],"date-time":"2024-09-01T00:00:00Z","timestamp":1725148800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002001","name":"Health and Social Care Delivery Research (HSDR) Programme","doi-asserted-by":"publisher","award":["NIHR129645"],"award-info":[{"award-number":["NIHR129645"]}],"id":[{"id":"10.13039\/501100002001","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journalslibrary.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":["Health Soc Care Deliv Res"],"abstract":"<jats:sec id=\"abs1-1\"><jats:title>Background<\/jats:title>\n<jats:p>Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people\u2019s education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-2\"><jats:title>Objectives<\/jats:title>\n<jats:p>To address the following questions:<\/jats:p>\n<jats:list list-type=\"order\">\n<jats:list-item><jats:p>What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful?<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>What additional support is perceived as needed?<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support?<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support?<\/jats:p><\/jats:list-item>\n<\/jats:list>\n<\/jats:sec>\n<jats:sec id=\"abs1-3\"><jats:title>Design and setting<\/jats:title>\n<jats:p>In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-4\"><jats:title>Participants<\/jats:title>\n<jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>One hundred and thirty-three carers aged 9\u201325 years with a range of caring and life circumstances and sociodemographic characteristics.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Seventeen adult care recipients (parents) with a range of physical and\/or mental healthcare and support needs.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children\u2019s social care commissioners.<\/jats:p><\/jats:list-item>\n<\/jats:list>\n<\/jats:sec>\n<jats:sec id=\"abs1-5\"><jats:title>Results<\/jats:title>\n<jats:p>The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-6\"><jats:title>Limitations<\/jats:title>\n<jats:p>Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-7\"><jats:title>Conclusions<\/jats:title>\n<jats:p>Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-8\"><jats:title>Future work<\/jats:title>\n<jats:p>Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-9\"><jats:title>Study registration<\/jats:title>\n<jats:p>This study is registered as Current Controlled Trials ISRCTN13478876. https:\/\/doi.org\/10.1186\/ISRCTN13478876<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-10\"><jats:title>Funding<\/jats:title>\n<jats:p>This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in <jats:italic>Health and Social Care Delivery Research<\/jats:italic>; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.<\/jats:p>\n<\/jats:sec>","DOI":"10.3310\/abat6761","type":"journal-article","created":{"date-parts":[[2024,9,26]],"date-time":"2024-09-26T12:39:27Z","timestamp":1727354367000},"page":"1-108","update-policy":"https:\/\/doi.org\/10.3310\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":20,"title":["Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study"],"prefix":"10.3310","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6147-5726","authenticated-orcid":true,"given":"Nicola","family":"Brimblecombe","sequence":"first","affiliation":[{"name":"Care Policy and Evaluation Centre, London School of Economics and Political Science, London, 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