‘Lots of people who draw on care and support get asked to be ‘involved’ in social care research but want to know that their contribution will be meaningful and valued. What value does involving people with lived experience make to the research and to the individuals involved?’
Social care has long believed that people who draw on care support and carers have the right to be involved in research about the support they receive – based on the principle of ‘nothing about us without us’.
This can also improve the quality of the research – for example, in situations where co-researchers can build a better relationships with someone taking part, and where people who really understand the issue being researched are involved in analysis.
However, there is a risk that people get asked to ‘be involved’ with research without agreement about what this means, or in tokenistic ways.
The evidence
We worked with the University of Birmingham’s Knowledge and Evidence Service to explore the evidence, and have created a helpful summary of the emerging evidence. The guide sets out some initial key terms, and summarises the evidence around potential benefits of working together, to both people and the research
Feedback
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