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

ABSTRACT

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.

KEYWORDS:

• Shared decision-making
• social services
• future workshops
• mental disabilities
• coordinated care planning

Acknowledgments

We are deeply grateful to all the participating users and caregivers for their time and commitment during the workshops, and for sharing their indispensable knowledge and experiences.

Disclosure statement

This work was supported by the Swedish Council for Research on Health, Welfare and Working Life (FORTE), under grant 2018-01341.

Additional information

Funding

This work was supported by the Swedish Council for Research on Health, Welfare and Working Life (FORTE), under grant 2018-01341.

Notes on contributors

Ola Knutsson

Ola Knutsson has a Ph.D. in Human-Computer Interaction and is Associate Professor at Stockholm University. His research focuses on participatory design of learning and work environments, the use of design patterns, and research on digital literacy.

Ulla-Karin Schön

Ulla-Karin Schön is a social worker and Professor in social work. Her research interests lie in the field of disability, especially disabled people’s opportunities to participate in social life, in meetings with social services and health care, and in education.