The value of carers in mental health research

The purpose of this paper is to assess the impact of a mental health carers’ research reference group on mental health research in the Heart of England region.

The methodology was a co-produced participatory evaluation, and the research was co-produced by the group. The design involved a literature review of carers’ involvement in UK mental health research, and collection of secondary data (group records) and primary data from researchers, group members, and facilitators. Analysis was initially thematic, then synthesised.

The group’s work had a positive impact on researchers and group members, and to some extent on mental health research and networks more widely. No negative impact was identified.

The researchers were not able to contact or include everyone who had been involved with the group. Some of those who did not give input may have felt less positive about the group than those who did respond. Co-production does not signify equality. Evaluation inevitably involves bias.

The conclusion is that mental health carers have a unique and positive contribution to make to mental health research, and have the right to be involved in such research in a non-tokenistic way. This has practical implications for mental health and mental health research services.

This is the first mental health carer-controlled evaluation of a mental health carer research reference group. Mental health carers conducted the research and wrote this paper, giving a perspective rarely found in the literature. This has value for people working in, studying, and researching mental health, and for other mental health carers.