Tips for carers to get and stay involved in health and care research

Carers are the backbone of care delivery in the UK, therefore your voice is unique, highly important and cannot be forgotten in research. To improve the involvement of carers in research, we have co-produced with carers and researchers this set of “top tips” which we hope will provide some support for you to get and stay involved in your research.

The tips were co-produced through a series of focus groups. In these groups, we asked NIHR-funded researchers and the carers involved in their projects to share their experiences of involving carers or being involved in research, respectively. The tips were also driven by a project steering group composed of carer contributors, a researcher and NIHR staff.

We have also produced tips for researchers who are involving carers in their research, and a printable PDF version of these graphics.

The tips are not an extensive guide for public involvement and are specifically focused on the considerations for carers. Please see the below resources for other public involvement advice and guidance which will help you on your research journey:

• NIHR Starting out guide
• NIHR Public Information Pack
• NIHR Payment guidance for members of the public

Acknowledgements

Steering Group Members:

• Sophie Jarvis – Public Partnerships Manager, NIHR Coordinating Centre (Project Manager)
• Bryher Bowness – PhD student & Mental Health Nurse
• Deb Smith – carer for friend and public contributor on project steering group
• Martha Powell – Communications and Marketing Manager, NIHR Coordinating Centre
• Meerat Kaur – Senior Public Involvement Manager, NIHR Coordinating Centre
• Tina Coldham – NIHR PIE advisor
• Una Rennard – Parent carer for son and public contributor on project steering group

We want to thank everyone who was involved in the creation of these tips, of those who wished to be named:

• Diane Fox, NIHR School for Social Care Research Fellow, University of Kent
• Dolapo Della Ogunleye, carer for uncle and public contributor
• Domenico Giacco, Professor of Psychiatry, Warwick Medical School
• Hameed Khan, Carer for mother and Public Contributor
• Margaret Odgen, Carer for Uncle, Public Contributor
• Nicola Brimblecombe – Care Policy and Evaluation Centre, London School of Economics and Political Science (LSE).
• Peter Atkins – Mental Health Carer and Public Contributor
• Rebecca, public contributor, Sheffield Young Carers
• Sara Gowen, CEO, Sheffield Young Carers
• Yusraa, public contributor, Gloucestershire Young Carers

If you have any queries on these tips, please contact publicpartnerships@nihr.ac.uk

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Tips for carers to get and stay involved in health and care research

You have a voice

Know that sharing your views and experiences as a carer is important, valued, worthwhile and can make a difference.

Don’t be afraid to ask

For help and support (including payments) and for what you need to be involved i.e. flexibility and what time commitment will be required.

It’s ok to say no and it’s ok to stop

Be mindful of your own capacity and limits. Don’t feel pressured to over-extend yourself and to let people know if you need to step back.

Being involved in research is an opportunity to learn and develop

Take advantage of the chance to learn from others, inquire about available training, and reflect on the skills you have gained through your involvement. Consider ways you can continue to grow and develop in your role as a contributor.

Your own needs as a carer are important

Keep in mind your own needs as a carer, in addition to those of the person you care for, and make sure to ask for them to be taken into account.