In Sweden, increasingly the care of older people is carried out by informal/family carers. That is, family members- adult children and spouses, but also relatives and friends. In the move towards people-centred, integrated care systems, there is a growing argument for carers to be seen as partners in care alongside the person they are caring for and health and care staff. Whilst there is an increasing awareness of carers’ role within service systems and their own needs for support, their involvement in research has not been systematically explored.   One of the university nodes within the UserAge research programme, focuses on this theme.

 This presentation will examine recent research to create a national carer strategy in Sweden. In particular, to examine carers’ involvement during the research and development (R&D) process. An overview of the initial stages of the design process will be given drawing on the theoretical foundations for the work with reference to the temporal model of family caring and the carer as expert model.  The presentation will focus on findings from a  qualitative study (n=12) that explored how carers perceived R&D work and their own experiences of being involved in the development of a national carer strategy. Interview participants were purposively selected from those carers that participated in focus group interviews conducted in the earlier design phase. Main findings include the challenges and benefits of carer involvement in research and their aspirations and concerns regarding their involvement in research generally, and with regards to the national carer strategy.

 The discussion will examine the level of carers’ involvement and the significance of their involvement in the co-creation process of the national carer strategy. Concluding comments will highlight that genuine carer involvement in research also demands a high level of engagement from involved researchers and policymakers during the entire process.