Dates: 1 February 2024 - 31 July 2026
Funder: NIHR Research for Social Care
Introduction
Providing care can have positive elements but can also negatively affect children and young people’s health, wellbeing, and education. Support is needed for young and young adult carers to help prevent these negative impacts. In our previous study (REBIAS-YC) young carers and their families told us that they need and value support that reduces young carers’ provision of care enabling them to pursue other priorities in their lives, takes the whole family into account, and is holistic to help with some of the impacts of caring and the wider stresses that make caring harder. Support needs to be flexible and responsive to changing lives, preferences, and needs. However, many young carers and their families do not get the support they need and there is variation across the country in support received.
Aims
The study aims are to find out how young carers and their families can get the support they need by answer the following questions:
- What current practice tools and approaches are used to identify, implement, and review support packages for people being helped by a young carer in England, young carers, and the whole family?
- How are useful and effective are existing tools and approaches in different caring, geographical, and socio-economic contexts?
- To what extent do current approaches enable young carers and their families to receive and sustain whole family, context-specific, flexible support that remains relevant and appropriate over time?
Methods
The project includes:
- a review of NHS, local government, and voluntary and community sector websites to identify existing approaches and tools for assessing needs and implementing support
- a survey, focus groups, and interviews with professionals working with young carers, adult care recipients and the whole family to ask about the ways they currently assess what is needed and put support in place; what works well and not so well; and what might work better for some families than others
- interviews at three points in time with 40-48 young carers and adults with care and support needs receiving some help from a young carer to ask about their views, experiences and outcomes of assessments and other approaches to getting the support they need.
REBIAS-YC findings
REBIAS-YC, the project that fed into this study, talked to 150 young carers and the people they care for and found that the types of support that young carers need, value when receive, but are often missing include:
- Support that would reduce or remove young people’s need to provide care, especially high levels/‘inappropriate or excessive’ care. This requires a whole family approach including alternative care for care recipient.
- Support that mitigates against the negative impacts of providing care on young carers’ mental health, wellbeing, education, social participation, and leisure activities.
- Support that that assists young people in their caring role whilst they are still providing care. This includes peer support from other young carers and information and advice about how to support the person they care for and about what support is available for them and their families and how to access it.
- Someone who listens and understands, is non-judgmental, and can be trusted not to break confidentiality.
- Being involved in decision-making and planning (sometimes including regarding the care recipient)
- Opportunities to change their minds about when and whether to access support
- Help finding, linking to, and trying out other services, with the option for someone to accompany them.
Papers from the project
Understanding the unmet support needs of young and young adult carers and their families | PLOS ONE
Young carers’ experiences of services and support: What is helpful and how can support be improved? | PLOS ONE
Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study | NIHR Journals Library
Further information
Principal Investigator at LSE: Dr Nicola Brimblecombe
Research Team at LSE: Dr Madeleine Stevens, Jayeeta Rajagopalan
Collaborators: Sara Gowen, Sheffield Young Carers; Dr Kate Blake-Holmes, University of East Anglia
Countries: England
Contact
Nicola Brimblecombe
n.s.brimblecombe@lse.ac.uk