Who are young and young adult carers and why is support for them important?
An estimated 500,000 to 1 million children and young people in England provide unpaid care for a friend or family member who has a long-term illness, disability, mental health problem or drug and alcohol problem. Whilst caring can be a positive experience, when young carers provide high levels of support there are also well-documented negative impacts on their education, employment, mental health, and social participation with associated costs to individuals, government, and the health service. Legislation in England (the 2014 Care Act) outlines the need to address situations where a young person is providing ‘excessive’ or ‘inappropriate’ care and/or where there are impacts of caring on wellbeing, health, education or employment. One way to support young carers in the Care Act is to directly provide services to the person they care for.
Support for young carers, which includes support for the person they care for, is therefore critical for preventing the negative effects of intensive care provision, and ultimately, to improve young carers’ lives and life chances. However, before our study not much was known about what support young carers and their families wanted and found helpful, nor what prevents them getting this support. In a recent National Institute for Health and Care Research (NIHR)-funded study – Reducing Barriers and Improving Access to Support for Young Carers (REBIAS-YC) – researchers from the Care Policy and Evaluation Centre (CPEC) at the London School of Economics and Political Science (LSE), Sheffield Young Carers and NIHR Policy Research Unit in Health and Social Care Workforce at King’s College London (KCL) sought to address this knowledge gap through gathering the direct perspectives of young carers and their families. The study involved interviewing 133 young carers aged 9-25 and 17 adult care recipients (parents) from four local authorities, as well as workshops with 19 practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health, NHS, adult social care, early help, and commissioning.
Involving young carers and practitioners
Our study was supported by a young carer involvement and advisory group, led by an experienced and expert young carer practitioner. Young carer and practitioner involvement informed the study materials – both content and presentation, and the questions we asked in the focus groups, and in particular the way we asked them. The young carers were from a diverse range of communities, family structures and cultures and helped ensure that the focus groups and materials were accessible to as many young carers as possible. In this we also benefitted from the advice, support, and local knowledge of young carer project workers in the four localities.
Young carer advisors and practitioners also fed back on and ‘sense-checked’ the findings; helped decided who to invite to practitioner workshops; and co-produced some of the outputs, including a findings summary and an animation. The findings showcased from the study included unmet needs, support which is currently effective, and barriers to receiving support.
Unmet needs for support
The research identified specific needs that young carers and the people they care for have which are not currently being met. These can be grouped in three categories:
- Support that would reduce or remove young people’s need to provide care, especially high levels/‘excessive’ or ‘inappropriate’ care. This requires a ‘whole family’ approach that considers the support needs, strengths and preferences of the whole family and works to put that support in place. This would enable the young people to have more time for other things in their lives such as their education, social participation and relationships. Young carers felt it would also share the responsibility, reduce their stress and help improve the lives of the people they care for. The ways they thought this support could be provided varied but included paid caregivers, adult mental health services, other family members, community groups, social connections and activities, aids and adaptations.
- Support that mitigates against the negative impacts of providing care on young carers’ mental health, wellbeing, education, social participation and leisure activities. Providing care could precipitate these issues and/or exacerbate pre-existing and/or other-cause mental health or education issues. Mental health support could be someone trusted to talk to in NHS or voluntary or community sector mental health services, school counselling services or the pastoral team, and/or young carer organisations. Support for their education could come through help with their schoolwork and homework and/or flexibility over homework.
- Support that assists young people in their caring role, whilst they are still providing care. This includes peer support from other young carers, which can also help support their mental health and wellbeing, 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. It also includes greater awareness, recognition and understanding of young caring and about disability and mental and physical illness especially within schools and children’s mental health services
Which aspects of support are working?
We also heard from young carers about the types and aspects of support they found helpful and less helpful and how support could be improved. Helpful aspects of support include:
- Someone who listens and understands, is non-judgmental, and can be trusted not to break confidentiality. Building trusted relationships and overcoming fear of child protection interventions are crucial aspects of support for some young carers and their families
- Involving them in decision-making and planning (sometimes including regarding the care recipient)
- Opportunities to change their minds about when and whether to access support; there was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer. Choice, flexibility and timing are key.
- Help finding, linking to, and trying out other services, with the option for someone to accompany them. Being passed around services and constantly having to retell your story can be unhelpful and stressful.
Whilst there were many good examples of this happening in practice, providing young carers with clearer, early, accessible information about what to expect and not expect can improve services. This includes information number of sessions; when information might need to be shared with others and what for; and for clear and well-managed endings. Endings should be flagged in advance and information given on why the support is ending, what happens next, linking to other support or new workers, and where they can go when they need similar help in the future.
What gets in the way of young carers and their families getting the support they need and value?
- The support needed is not available or is not accessible or approachable
- There is not enough information about the service and how it works and/or information is not communicated in accessible, user-friendly formats
- Lack of links between services
- Lack of time to seek help and competing priorities especially school and caring
- Fear or mistrust about seeking help and possible negative consequences
- Nervousness, embarrassment or lack of confidence around help-seeking
- Poor public transport to the service location, no or insufficient internet connection, cost of the service where costs were involved
- Lack of understanding and awareness, especially for young people caring for or for someone with mental ill health or substance misuse
Towards better support for young carers
Identifying what young carers and their families value about services and support and what needs remain unmet is an important step to improving support for young and young adult carers and the people they care for. In some cases, new approaches or strategy are needed. In other cases, support is present in current legislation and good practice exists, but there are access barriers and inconsistent practice implementation across the country. Our study shows that young carers and their families are clear about what works and what does not, highlighting the importance of not only involving them in research, but also in designing services, policy, and strategy.
Nicola and her team are now undertaking a new study exploring what works in making sure all young carers and their families get the ‘whole family’ support they need and value regardless of where they live, who they are, or who they care for. For the latest updates, follow CPEC on LinkedIn.