Estimates of the number of young carers in the UK vary widely, with the 2021 census recording 127,000 young carers aged 5-17 in England and Wales (1.4% of 5-17-year olds) and 230,000 young adult carers aged 18-24 (4.6%), while the Carers Trust estimates that there are around one million young carers aged 17 and under in the UK and over 600,000 young adult carers aged 18 to 25. Young carers care for family members and friends who are disabled or have long-term mental or physical illnesses or addiction. Awareness of difficulties faced by young carers is relatively high in the UK compared to other countries, and there is a policy framework in which young carers and the people they support have been given explicit rights. However, the effects of this legislation have been limited and clearer guidance and more knowledge about how young carers’ can best be supported is required. A recent study seeks to fill this gap, led by Nicola Brimblecombe and with researchers from the Care Policy and Evaluation Centre (CPEC), based at the London School of Economics (LSE), Sheffield Young Carers and Kings College London, and funded by the National Institute for Health and Care Research (NIHR) (NIHR129645). Key findings, reported in a paper led by Madeleine Stevens, recently published in PLOS ONE, show the aspects of services and support that are seen as helpful, valued, and acceptable to young people, and what could be improved based on focus groups and interviews with 133 young carers and 17 parent care recipients.
What are the forms of support for young carers?
The study found four key types of support which are important for young and young adult carers: support for the care recipient, young carers groups, mental health support, and support in schools. While certain aspects and characteristics made these more or less helpful, overall, they were nonetheless identified as key.
Support for the care recipient
Highly valued support for care recipients by young carers included practical assistance and professional visits, benefiting both parties. Inconsistent or inadequate support led to stress. Cited issues included unpredictable visit times and insensitive or over-rushed workers. Frustration arose from limited choice in care workers and frequent personnel changes. Conversely, consistent, quality support from professionals, family, friends, or neighbours eased the burden on young carers and improved overall well-being. Tailored assistance and understanding family needs, was crucial, transcending mere resource allocation.
Young Carers Groups
Young carers groups offer a supportive space for peer support, shared experiences, and enjoyable activities, providing respite from caregiving duties. Participants appreciate the understanding atmosphere and trips organised by these groups. However, concerns about leaving the cared-for person and challenges like adjusting to new peers exist. Varied services include meetings, emotional support, and engaging activities, but is sometimes a wait before people can join, and some young people felt uneasy in group situations, or needed more support to feel included.
Mental health support
While many young carers express a need for mental health support, they encounter various challenges, including long waiting lists and sometimes unhelpful services... Some participants feel misunderstood by Child and Adolescent Mental Health Services (CAMHS), receiving dismissive advice. However, some young people had positive therapeutic experiences with individual practitioners, including tailored support from school counsellors, CAMHS and NHS adult mental health services, and GPs. Young carers would like services to better understand and address the unique challenges young carers face.
Support in schools
Support for young carers in schools varies, with some providing better support than others. Valued support includes supportive individual staff members, which included teachers, counsellors and designated support people. Support methods include groups, drop-ins, time-out procedures and one-to-one sessions, with some schools using innovative approaches like therapy dogs. Challenges include inconsistent use of support systems and, sometimes, perceived prioritisation of academic goals over well-being, while others reported the reverse, that priority given to wellbeing meant they might not have achieved as well academically as they could have. Some feel support is only available to those who make a fuss or have supportive parents, highlighting disparities. Positive initiatives like breakfast clubs are appreciated. Overall, there are mixed experiences, indicating a need for consistent and comprehensive support systems for young carers in schools.
The role of trust and advice
Across all services, there were elements to support services which young carers highlighted as most useful. Trust was identified as a key ingredient in supporting young carers, particularly in having someone they can confide in and rely on for understanding. Many participants emphasised the significance of having an adult figure to turn to, highlighting the pivotal role of these trusted individuals in providing emotional support. While some young carers are comfortable discussing their caregiving responsibilities with peers, others prefer the guidance and understanding of adults. These trusted figures can be school staff, young carers' workers, family members, or social workers. However, a sense of distrust towards services is evident, with concerns about potential misuse of information, or intervention which is perceived as a risk to keeping the family together. Positive experiences with individuals contrast with systemic deficiencies, underscoring the importance of fostering trusting relationships for effective support. This trust, intertwined with confidentiality and risk perception, significantly influences young carers and their parents’ engagement with support services and ultimately is likely to affect their overall well-being.
Another key component of supportive relationships was the ability of support services to provide advice, information, and successfully link carers to other forms of support. Many participants highlighted the difficulty in knowing about available support, and how to access it, without someone to guide them. Social workers played a significant role in providing sought-after information, with some being praised for their responsiveness, while others were criticised for lacking knowledge or providing conflicting information. Helpful social workers assisted families in accessing various supports, including housing adaptations and special needs services, and acted as advocates when needed. Participants emphasised the importance of sensitively linking individuals to support services, as impersonal referrals often led to frustration and dissatisfaction. Positive experiences involved practitioners who supported individuals through the process of accessing support services. This highlights the importance of personalised and supportive interactions when linking young carers and their families to support services.
Overcoming obstacles and strengthening support
The journey of young carers and their families is marked by a persistent challenge: the lack of sufficient support. While some support was deemed unnecessary or overwhelming, the resounding consensus is that more support is needed. Young carers often want increased frequency and accessibility of support groups and activities, highlighting the current inadequacy of available resources. Service constraints and stretched resources often hinder the provision of timely and comprehensive support, leaving many families grappling with unmet needs. Moreover, support often ends prematurely or arrives too late, exacerbating the frustration and distress experienced by young carers and their families. These systemic challenges underscore the crucial role of practitioners who can effectively navigate services and advocate for the needs of young carers and their families.
Recognising and supporting young carers means addressing these obstacles and ensuring the well-being and resilience of young carers and their families. The recent Young Carers Covenant, drawn up by Carers Trust and members of the Young Carers Alliance, highlights the challenges young carers are facing and calls for more support for young carers and their families. Giving visibility to the experiences of young carers and being guided by them in designing approaches to support, is key to ensuring that the UK’s relatively progressive policy framework is actualised.
You can read the paper online.
Paper authors: Stevens, Madeleine Stevens, Nicola Brimblecombe, Sara Gowen, Robin Skyer & Jo Moriarty
Paper title: Young carers’ experiences of services and support: what makes support helpful and how can it be improved?
We also worked with young carers to create an animation highlighting their experiences and needs, which you can watch on YouTube.
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