Carers involvement in research

A new report published by the School with support from the NIHR Centre for Engagement and Dissemination focuses on carers involvement in research. The report has been co-authored by Peter Atkins, Dave Martin, Margaret Ogden and Yasma Osman drawing from their talks at a webinar on 6 June 2022 where they shared their experiences of involvement in research.

Social care research funded by the National Institute for Health and Care Research (NIHR) has a long history of user, carer and public involvement, but the voice of unpaid family carers can sometimes be under-represented. The June webinar was organised to continue discussions on how to improve the involvement of carers in research.

The reports shares suggestions from the authors including:

• Ensure payment for involvement is straightforward and timely.
• Involve carers from the get-go and reflect their views: Carers should be co-designing the research questions and researchers should be getting to the nuggets of what carers are interested in.
• Engage widely: Researchers need to consider how to seek to identify and engage with individuals who may not see themselves as a carer, as well as carers from diverse communities and settings.
• Understand and meet carer needs: Researchers should ask carers about what they might need to take part in the research as early as possible and make sure the requested support is available. They should also provide accessible information and maintain communication.
• Explain the purpose of the research and establish expectations: This will help carers set boundaries about their participation and manage expectations.
• Clarify whether involvement is as a carer and/or on behalf of cared for person, as well as offering guidance on ethics and confidentiality so that the carer is comfortable with what they share about themselves and the person they care for.
• Explore innovative approaches: Researchers would benefit from examining their methodology and exploring innovative ways to enable carers to take part in research.
• Take a whole system approach: A step forward could be conducting research that aims to improve a cared for person’s care as part of a complete system, and in doing so involve all relevant voices without separating carers from professionals and so on.

The full report is available at:

https://www.sscr.nihr.ac.uk/reports/involving-and-engaging-carers-in-research.