Co-producing research with family carers of people with a learning disability
About the project and team
A group of researchers and family carers are working together to produce information on co-producing research with family carers of people with a learning disability.
The project will produce:
What is co-production?
We define co-production in research as relevant stakeholders (e.g. family carers / commissioners) working as equal partners with researchers, at the earliest stages of a project, to share their lived experience. This ensures research is shaped around real-world experience and can make a positive difference to the lives of people with a learning disability and their families, for example through changes to services and support.
Co-production can bring a range of benefits to a research project and those involved but can also present challenges. The aim of this project has been to co-produce guidance and resources on co-production for family carers and researchers. We hope that these will facilitate meaningful and impactful co-produced research in the future.
7 Golden Rules of Co-production with family carers
We have identified seven Golden Rules for successful co-production:
- Work together as peers. Working together in an equal partnership involves recognising and valuing the many different skills and perspectives that family carers and others bring.
- Make it meaningful. Meaningful co-production values family carer input from the start to the end (and beyond). It is not just a tick-box exercise.
- Listen and keep an open mind. An open and transparent approach can build positive relationships across the team and ensure meaningful contributions.
- Communicate clearly. Use plain and accessible language. A clear remit and expectations of family carers can ensure you get people with relevant experience/characteristics for the project. Be clear about the aim of the research and how this will contribute to improving families’ lives.
- Pay appropriately. Ensure that family carers are fairly compensated for their time and expertise.
- Be sensitive. Consider the wellbeing of family carers who contribute their lived experience throughout the research process. Sharing on sensitive topics can bring a variety of emotions and it is important everybody feels supported.
- Be flexible to support family carers’ needs. Think creatively and be prepared to work in different ways to avoid some of the barriers family carers may face.