Many young people (known as young carers) support family members with on-going health conditions, but with negative impacts on their own health, education and wellbeing. People who support young carers (e.g., support workers and school nurses) can help by asking them what might help them carry out, or reduce, their caring role. However, these conversations can be difficult for young carers.
Background
Many young people support family members with on-going health conditions. These young people (known as young carers) help family members in many ways. This can include providing physical care, running the household, and looking after other children. Young carers can miss out on their childhood. Many also experience their own health problems and fall behind at school. People who support young carers (e.g., support workers and school nurses) can help by asking them what might help them carry out, or reduce, their caring role. However, these conversations can be difficult for young carers. We need ways (interventions) to help open-up these conversations with young carers.
There is an existing intervention that has been shown to help adult carers to identify, and discuss, the help they need. It is called the Carer Support Needs Assessment Tool Intervention (https://csnat.org/). It consists of:
• the ‘About You’ Booklet (which contains a short set of questions to help carers consider their support needs)
• a conversation between the carer and professional, based on the carer's responses to the questions.
This intervention is used internationally with adult carers. To find out if it could help young carers we have looked at research that has explored young carers’ needs and found some differences between young and adult carers’ needs. This suggests that the ‘About You’ Booklet’s questions need adapting for young carers.
We also talked to young carers and people who work with them. Both groups felt the questions in the booklet could be useful for young carers, but that some of the wording and content needed changing. They also thought it important to think about who should use the intervention with young carers, and where.
Project Aims
The project aims to adapt CSNAT-I for young carers by adapting the ‘About You’ Booklet and exploring how the whole intervention could work with, and for, young carers.
Project Activity
To achieve the study aims we will:
- Update the existing systematic search and narrative literature review mapping young carers support needs (from the published literature) to the ‘About You’ Booklet questions to establish its comprehensiveness for young carers.
- Work with young carers to adapt the ‘About You’ Booklet questions.
- Ask young carers where/how the intervention could support them.
Anticipated or actual outputs
ANTICIPATED OUTPUTS:
- CSNAT-YC will be ready for use and available under licence via the existing CSNAT-I website (https://csnat.org/), free of charge to not-for-profit organisations.
- Training supplement on use of CSNAT-I-YC will be available via the CSNAT-I website.
- CSNAT-I-YC will be promoted via social media
- ARC EoE will enhance dissemination and enable working with Health Innovation East to facilitate CSNAT-I-YC implementation
- A study-end ARC EoE webinar will target professionals working with young carers
- Submission of the systematic search and narrative review for publication
- Conference abstracts and an academic manuscript will be submitted
Brief reports of key findings will be prepared for participants and sites
POTENTIAL IMPACT:
- Supporting young carer agency by enabling their views about their caring role, and related support needs, to be heard
- Enabling cross-sector delivery of a comprehensive, person-centred approach to identifying the support needs of young carers
- Improved experiences and outcomes for young carers and their families
- Contribution to the mitigation of inequalities present among young carers in comparison to their peers
- Enhanced safeguarding of young carers by helping to identify and address inappropriate caring roles
- Contribution to addressing the aims of the All-Party Parliamentary Group for Young Carers and Young Adult Carers and NHS guidance for young carers
- Reducing health and social care interventions by optimising decisions about young carers service use, thereby reducing unnecessary burden on some services and mitigating the need for future interventions
Papers/resources associated with this project
Who is involved?
Joint PIs:
Dr Carole Gardener
Prof Morag Farquhar (corresponding researcher), University of East Anglia
Contact: M.Farquhar@uea.ac.uk
