Title: What are the barriers to young carers accessing carer support services and/or services for the recipient of care, and what interventions and support services are acceptable to these groups and the persons they look after?
Funder: Department of Health and Social Care

Abstract: Reducing Barriers and Improving Access to Support for Young Carers (REBIAS-YC)_x000D_ _x000D_ We want to improve support and quality of life for the many children and young people in England who provide support to family members or friends who are disabled, have mental or physical ill health, or misuse drugs or alcohol. These are sometimes called young or young adult carers. In our study, we will focus on the experiences of children and young people aged 9-25. Young carers are more likely to experience mental health problems than their peers. It can be difficult for young carers to reach their full potential at school, with consequences for their future plans for higher education or paid employment. Young carers often also report feeling lonely. But research shows that some young carers and the people they care for do not receive all the services and support that they need._x000D_ _x000D_ We therefore want this study to help answer two important questions. Firstly, what are the difficulties faced by young carers and the people they support in seeking, accessing, and receiving the right type of support at the right times? Secondly, what services and support do they find helpful, what support would they like, and what needs would it meet?_x000D_ _x000D_ Some young carers may face additional difficulties. Research is needed to understand why this is the case and ensure support is given to those most in need of it. We are working closely with different organisations in four different parts of England. They will help us recruit people to take part in the research and run focus groups and interviews. It is important for us that we recruit participants who are under-represented in existing research and who have tended to under-use services, such as people from the traveller or refugee communities, or young people supporting someone with drug or alcohol problems. We will hold workshops with practitioners to explore how the findings can be used in practice and any barriers to this._x000D_ _x000D_ We want the information we collect to help health and social care services, schools, universities and colleges improve support for young carers, and so ultimately improve their lives. To get better answers to our research questions and make sure our research is relevant, we will work closely with young carers, care recipients, carer organisations, people who work in social care and people who make decisions about how social care services are provided. It is also important to share findings from the research with policymakers, practitioners, organisations supporting young carers and those they care for, and other researchers, in ways that are useful to them. Our plans include a free interactive practical ‘toolkit’ aimed at helping health and care organisations’ decision-making to support carers. We will produce a policy/briefing papers including a young-person friendly version, with clear sets of recommendations. We will take part in young carer-led research and action events in each of the four study areas plus a national event in London with MPs, national organisations, and government departments. We aim to share findings with schools and colleges through local networks, the Young Carers in Schools programme, briefings and training for school and further and higher education staff including widening participation teams. Outputs will be co-designed and co-produced with young carers, care-recipients, and health and social care professionals. Working with young carers is at the heart of our plans and appropriate training, support and payment will be provided to support this.

Lay abstract: Reducing Barriers and Improving Access to Support for Young Carers (REBIAS-YC)_x000D_ _x000D_ Research question_x000D_ What are the barriers to young carers accessing carer support services and/or services for the recipient of care, and what interventions and support services are acceptable to these groups and the persons they look after?_x000D_ _x000D_ Background_x000D_ Providing care can impact on children and young people’s employment, education, health and wellbeing with substantial associated costs to individuals, government and the NHS, and potential for long-term consequences. Supporting young carers and preventing these impacts is a high priority for health and social care policy and practice in England. There are knowledge gaps on how best to reduce barriers and improve support, especially for young carers who may face additional barriers and currently under-use services. Young carers have expressed the need for better, more easily-accessed services for themselves and the person they support._x000D_ _x000D_ Aims and objectives_x000D_ To explore the following research questions (RQ):_x000D_ 1. What components, features and/or types of interventions, services and other support are, or would be, acceptable to young carers and the people they support?_x000D_ 2. What additional support is perceived as needed?_x000D_ 3. What are the barriers experienced by young carers in seeking and accessing services for themselves or the person they support?_x000D_ 4. What are the barriers and facilitators for practitioners in providing support and services perceived as acceptable by young carers and the people they support?_x000D_ 5. What are the estimated costs of providing support and services perceived as acceptable? How do these compare to the estimated economic implications of not meeting those needs?_x000D_ _x000D_ Methods_x000D_ The proposed 24-month study has three components:_x000D_ 1. Focus groups (6-8 groups, approximately 8 participants per group) and in-depth semi-structured interviews (n=18) in four different localities in England to explore experiences of services, acceptable features of services, support needed, and barriers to seeking support (RQs 1, 2 and 3) with (a) young carers aged 9 to 15; (b) young adult carers aged 16 to 25; (c) young people and the people they care for (care-recipients) from groups historically less likely to access support. This varies by locality but includes refugees and asylum seekers; traveller communities; families with adults with substance misuse and/or mental health difficulties._x000D_ _x000D_ 2. Workshops with practitioners in each of the four areas to explore applicability of the findings to practice, including barriers and facilitators to implementation (RQ 4)._x000D_ _x000D_ 3. Findings from 1 and 2 on types, components and principles of acceptable services will, in discussion with carers, care-recipients and practitioners, form the basis of guidelines for analysis comparing the estimated costs of implementing those guidelines with the estimated costs of not meeting needs (RQ 5)._x000D_ _x000D_ Anticipated impact and dissemination_x000D_ We aim to have an impact on carer policy and practice in England and on the lives of young carers and the people they support. Evidence from this study has potential to contribute to increased understanding and awareness, and provide practical information from multiple perspectives on how best to support the diversity of young carers and how to reduce barriers, and improve support, uptake of support, and quality of life. We aim to achieve this through ongoing PPI and a wide range of dissemination and impact activities, many co-produced with carers/service users.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE