This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Young carers are children or young adults who care for a family member with long-term physical or mental health issues, substance misuse, or disability. Researchers explored the needs of young carers and the people they care for. They found that young carers wanted support to be:
- well signposted and accessible
- empathetic, trustworthy and confidential
- inclusive
- proactive but not intrusive.
More information on support for young carers can be found on the NHS website.
The issue: what support do young carers find helpful?
In 2021, the Census reported 127,000 young carers (aged 5 to 18) in England and Wales. These young people often have poorer health, wellbeing, education, and job prospects than their peers who are not carers.
The UK Government has developed policies to assist young carers via social workers and mental health support, for instance. However, support varies across regions and some report issues with services (such as a lack of availability).
This study investigated what support young carers (aged 9 – 25) and their families find helpful and how services could better meet their needs.
What’s new?
Researchers interviewed 133 unpaid young carers and 17 cared-for parents; most took part in focus groups, but 10 were interviewed individually. Participants were from a diverse range of communities, family structures and cultures.
The researchers found that 4 key types of support were important for young carers:
- support for their parent (or other person being cared for), for example from social care workers or occupational therapists
- young carer support services
- mental health support
- school support (such as supportive and understanding staff, and time out cards to leave early when needed).
The researchers identified features of care that young carers valued.
- Access. Support could be hard to navigate and understand: “the carers allowance… just isn’t really talked about and then it’s hard to find [by] yourself.” Young carers appreciated referrals to appropriate services, as long as they didn’t feel passed around (retelling their story repeatedly, for instance). They appreciated support in trying out a new service, such as a young carers group.
- Listening and understanding . Many valued having someone to talk to who would validate their feelings: “I can’t talk to my mum about that kind of stuff.” Young carers appreciated support that was adapted to their family’s needs, including taking place at convenient times and choosing what to talk about.
- Trust and confidentiality. It could take time to build trust in support workers; carers wanted to speak with people who had an understanding of the sorts of issues faced by young carers. They wanted to be asked for their permission to share sensitive information. Several had experienced broken confidentiality: “You put trust in them and then they tell other teachers and don’t help.” Some had a deep mistrust of social services, and some parent care recipients feared intervention from child protection services.
- Inclusion. Young carers wanted to be involved in decisions, and to be considered in the care plan of the person they cared for: “We’re the best judges of our needs, ask us, instead of trying to guess.” However, involving young carers sometimes conflicted with their parent or care recipients’ wishes (such as disclosing health information).
- Proactivity but not intrusion. Some types of support were felt to add pressure on the family, and young carers sometimes felt pressured by services to accept support: “[It’s] good that they help, but it’s sometimes too much. You don’t need help, but it doesn’t stop.” Carers wanted to be able to change their mind about the support they received. They wanted some support (such as young carer groups) to be provided more frequently or last longer: “There’s not always enough support in young carers [groups] because there is so many young carers.” It was distressing when services ended without warning.
Why is this important?
The researchers hope their findings will inform improvements in support for young carers so that they and their families have more capacity to fulfil their goals.
Young carers valued services but said they could be improved. They wanted more of some types of support, but less of some more negative aspects of support. The researchers say that services could be improved, and costs potentially reduced, by providing support that better meets people’s needs and by minimising support they don’t value.
Existing legislation protects young carers from providing care that poses a risk to their wellbeing, education or life chances. Implementation of this legislation varies, and the researchers say more needs to be done to make flexible and adaptable support for young carers available more widely.
Young carers have a wide range of experiences and a range of views on what kind of support is helpful. This underlines the importance of a flexible, listening approach that adapts to the needs of the carer and their family and involves them in decisions. The researchers found evidence of many aspects of support which were valuable to young carers and their families, and were appreciated, but some interactions with services were not beneficial. They conclude that listening to young carers and their families can enable support that adapts to their changing circumstances and preferences.
What’s next?
The researchers suggest that young carers would benefit from:
- improved support for the people they care for (such as more support from a care worker)
- support from services that takes account of the whole family, and their strengths and needs
- clear and accessible information about support services, and help in accessing and trying out services.
The researchers held 3 events in England in 2023, which were planned and delivered by young carers. At each, they shared their findings and discussed how to integrate them into practice with local practitioners and decisionmakers.
The researchers are conducting a further study investigating how the right sort of support for young carers can be made available in a way that meets the needs of the whole family.
What have I learned?
How can I act on the new knowledge?
You may be interested to read
This is a summary of: Stevens M, and others. Young carers’ experiences of services and support: What is helpful and how can support be improved? PLOS One 2024; 19: e0300551.
Another journal article from the same project: Brimblecombe N, and others. Understanding the unmet support needs of young and young adult carers and their families. PLOS One 2024; 19: e0310766.
A full report of the study: Brimblecombe N, and others. 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 2024; 12. DOI: 10.3310/ABAT6761.
Information and support for young carers from the Carers Trust.
An article about the study by the researchers.
Information on taking part in NIHR research on young carers.
Funding: NIHR Health Services and Delivery Research programme Commissioned Call.
Conflicts of Interest: None declared.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
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