Exploring the “shared” in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals?

There is a growing body of literature that recognizes the importance of shared decision-making (SDM) in the care for children with chronic conditions and/or disabilities. Although participation in SDM can be more or less active, the tuning between parents and professionals about the way they want to participate in SDM is often an implicit process, limiting parents’ optimal involvement. Role definitions may support both partners in the process of SDM. We conducted a scoping review to investigate the available knowledge on the interpretation and variability of different roles of parents and professionals in SDM. In total, 43 articles were included and were subjected to data extraction and thematic coding. The findings show that roles are described in the literature by three themes: (1) active and passive involvement, (2) leadership in decision-making, and (3) six specific roles: informing, advocating, supporting, facilitating, coordinating, and interacting. Some, but not all, of these roles are described for parents as well as professionals.

Conclusion: The literature provides a first definition of the various roles parents and professionals may take during SDM. However, the results do not inform how the described roles can be performed in clinical practice. Follow-up research is needed to develop and evaluate practical initiatives to achieve suitable roles for both parents and professionals.