Shared decision making in integrated complex youth care
Authors: Barnhoorn-Bos Anne Marie , Nooteboom Laura , Heek Eline , Mulder Eva , Vermeiren Robert 
Published: January 2024

Introduction: Families with multiple and enduring problems receive care from various care providers. There is a focus on different areas of life, such as mental health, parenting, financial and social problems. However, due to insufficient coherence and coordination in the care process and fragmentation of services, the support provided often fails to match what a family really needs and wants (Nooteboom et al., 2021). An integrated approach in which the various family members and professionals collaboratively decide on the most adequate care on various life domains is essential to provide families with matching and coherent care. Shared decision making (SDM) can ensure a family-centered approach and family’s active involvement in decision making (Pii et al., 2020). However, the complexity of problems and multiple stakeholder involvement of youth, parents and professionals impact the SDM process, leading to specific needs and preferences in SDM. In this qualitative study we explored the perspectives of families and professionals on essential elements of SDM in integrated complex youth care.

Method: In this participatory action research project, we worked with families and professionals from Specialist Integrated Teams (SIT). In these teams professionals from different youth and adult care services and with various areas of expertise collaboratively deliver care to families with multiple and enduring problems. Data were collected through (1) semi-structured interviews with youth, parents and professionals and (2) observations of SIT case meetings. Professionals and a parent with experiential knowledge worked as co-researchers. Through learning sessions with parents, youth, professionals and policymakers, the data collected were validated and further deepened. Makoul and Clayman's SDM model of essential elements forms the frame for data analysis  (Makoul & Clayman, 2006). Using the qualitative method of abduction, we studied both the practical implementation of this model with families with multiple and enduring problems, and elements not included in the existing model that families and professionals consider essential.

Preliminary results: Final results will be presented at the conference after further  analyses. First rounds of coding shows that the essential elements of SDM are implemented adapted to families with multiple and enduring problems. Shared decisions are achieved through (1) a broad view on multiple family members  and professionals, different life domains and both the short and long term of decisions, (2) matching the family’s pace and rhythm, (3) constantly balancing the professional and family roles in decision making, and (4) parallel processes of decision-making between professionals and with the family. Building trust through open and equal relationships appears to be a key element to fluent decision-making.

Conclusion: In integrated complex youth care the known essential elements of SDM are realized at a different pace and in continuous coherence. Professionals must consider a broad view on multiple family members, life domains and care providers, a continuous and cyclical process of larger and smaller decisions, and take time to build collaborative  relationships and trust with families and the care network.   

In further analyses, we focus on facilitators and barriers in SDM with families with multiple and enduring problems.