Brimblecombe, Nicola, Stevens, Madeleine, Gowen, Sara, Moriarty, Jo, Skyer, Robin, Bauer, Annette and Bou, Camille (2023) Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study. Health and Social Care Delivery Research. (In Press)
Abstract
Background: 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’s education, employment, health, and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. Our 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.
Objective(s): to address the following questions:
1. 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?
2. What additional support is perceived as needed?
3. What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support?
4. 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?
Design and setting: In-depth qualitative methodology using focus groups, in-depth semi-structured interviews and workshops in four localities in England.
Participants:
• 133 carers aged 9-25 with a range of caring and life circumstances and socio-demographic characteristics.
• 17 adult care recipients (parents) with a range of physical and/or mental health care and support needs.
• 19 practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health, NHS, adult social care, early help, and commissioning.
Results: the types and aspects of support that young carers and their families need, and value when received, includes: 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 about 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.
Limitations: potential limitations are that we were not able to engage with, or recruit, young carers from some intended sub-groups 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 our project starting.
Conclusions: 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.
Future work: 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.
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