Tips for researchers involving unpaid carers in health and care research

Carers are the backbone of care delivery in the UK, therefore their 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 support you to meaningfully involve and engage them 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 carers to support them in getting involved in 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 when involving carers. Please see the below resources for other public involvement advice and guidance:

• NIHR Payment Guidance for researchers and professionals
• NIHR Briefing notes for researchers
• Being inclusive in public involvement in health and care research
• UK Standards for Public Involvement

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 researchers involving unpaid carers in health and care research

A note on language: It’s important to remember that unpaid carers may not identify with the term “carer” so be mindful of the language used when engaging and communicating with them.

Be flexible

Ask carers about their needs and try to accommodate them. Let them know if you can’t accommodate certain needs and explain why. Also, understand that their involvement may not be guaranteed and may change at the last minute.

Factor in the physical and mental health needs of carers, plus the emotional costs of being involved in research

Sharing experiences can have an emotional impact, so there may need to be an offer of personal support, for example through carers organisations, providing links to other carers for peer support, providing support via your team or encouraging them to speak to someone in their personal network.

Plan and budget your involvement with carers and carers organisations

In addition to the normal costs associated with involvement, factor in costs specifically for carers, such as reimbursement for hiring additional carers or support workers during meetings (carer costs). Offer these carers costs so they don’t need to ask. 

Recognise that carers are people first

Carers have other interests, aspects to their lives and other commitments. Allow them the space to talk about themselves as people and take the time to get to know them on a personal level (if they wish to share this).

Keep carers updated and communicate the impact of their involvement

Carers are giving up their time for you. Plan communication that works best for them, give project updates (including any delays), ensure a feedback loop, and let them know the impact of their involvement.

Reduce the burden on carers

Carers are busy and research may not be their priority. Make processes simple and straightforward to avoid extra fatigue or disengagement. This includes payment and application processes.

Involve carers from beginning to end and at all stages

This will benefit your research by helping define the questions asked, advising you on how the study is run and developing meaningful outcomes. Carers can also help you evaluate and share your research results once the study is complete.

Carers often wear multiple hats

Carers have their own identity but may also be speaking on behalf of someone else, especially if that person lacks capacity. Be aware that reflecting another person’s views can be tricky and may differ from the carer’s personal views. Carers may also not be able to share specific details.

Carers need to be heard as a unique and valued part of service delivery

Services impact carers differently than the service users they care for and their views are just as important. Regularly communicate with them to show that you value their input.