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Why is it important to involve unpaid carers in research?

Published: 05 June 2023

Sophie Jarvis, NIHR Public Partnerships Manager, Una Rennard, a public contributor, and Bryher Bowness, a PhD Student at King’s College London highlight the role of people who care for friends and family in health and social care research, and why they should be involved.

We have seen improvements in public and patient involvement in research, but there is still work to do to increase the diversity of those involved – this includes unpaid carers. These people provide unpaid support to a family member, partner and/or friend, often just because the need arises. Carers are the backbone of care delivery in the UK, therefore their voice is unique, highly important and cannot be forgotten.

Research does not have to be about carers to involve carers, however, they often get overlooked. There are several reasons why involving carers is important and beneficial to your research, to name a few:

  • the impact of services/treatments on carers are different from those on the service user, but are equally important as carers can be a key part to the jigsaw of making services work
  • they can support the person they care for to be involved to ensure their voice is heard or
  • they can act as an advocate for those they care for if they are not able to do so themselves

Ultimately, involving carers as a voice in your research will improve the quality of your research, make it more applicable to different communities and aid the successful implementation of your findings into practice. Carers can also benefit from being involved. They say they value the experience and can feel empowered by the chance to make a difference.

The current landscape of carers in the UK

We are seeing an increase in the amount of people who identify as carers. The latest data from the Carers Week 2022 Report estimates that the total number of carers in the UK today is around 10.6 million, which means that one in five adults are providing care. In addition, the Children’s Society estimates there are 800,000 young carers aged five to 17 care for an adult or family member in England. Some estimates suggest the care provided by family and friends is worth £119 billion every year.

Recent research completed by Bryher (not yet published) found that there has been a lack of evidence-based guidance about how to involve carers specifically in the research process. However this same research has indicated that researchers are increasingly recognising and valuing the carer voice in their studies - which is a positive move.

What has the NIHR done to support the involvement of carers?

As part of our wider work on research inclusion, we have highlighted that unpaid carers are an important group to include in research and more needs to be done to support their involvement. We are funding research about carers and where carers have been involved. Some of the findings of our funded research to support carers has been pulled together in a NIHR evidence collection on carers: Supporting family and friends: how can research help carers?

In an effort to improve meaningful involvement of carers in research, we have co-produced - with carers and researchers - two sets of “top tips”. All the tips were identified by interviewing groups of carers and researchers who had been involved in NIHR projects:

This work was guided by insight from a webinar held during the 2022 Carers Week which brought together carers involved in research funded by the NIHR. They shared their experiences and gave suggestions on how to improve the involvement and engagement of carers in research - the event report can be found here.

We also have included guidance on carers costs in our latest NIHR payments policy for public contributors who work with us.

What can researchers do to involve carers?

All researchers should be thinking about how to involve the people and communities their research will impact. We want to ask you to also consider carers when designing your research. Think about how your research could impact them, plan your involvement with them and empower them by giving them a voice. It will lead to better research with outcomes which are more applicable to everyone who uses health and care services.

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