Co-creating a process of user involvement and shared decision-making in coordinated care planning with users and caregivers in social services

Purpose Although user participation and shared decision-making in formal statutory coordinated care planning are described as central, they remain to be implemented. The aim of this study is to explore how collaboration and shared decision-making in the social services can be realized in formal care planning activities with people with mental disabilities. Methods We conducted eight workshops with 12 users and 17 caregivers to investigate existing barriers to and possible solutions for participation in coordinated care planning. Results Workshop formats and techniques from participatory design generated rich research materials illustrating challenges currently experienced by users and caregivers in care planning work, as well as a large variety of solutions to these challenges. They also illustrated differences in how participation is understood and the conditions required to realize shared decision-making between users and caregivers. Conclusions An improved coordinated individual plan (CIP) process emerged, based on the active participation of users and caregivers. This process is a familiar and transparent process for users and caregivers, reflecting the needs and preferences of users at all stages. It requires careful preparation and collaboration with the users, as well as caregiver flexibility.