Professionals’ and Families’ Perspectives on Essential Elements of Shared Decision-Making: A Qualitative Analysis on Families with Multiple and Enduring Problems in Integrated Youth Care

Shared decision-making (SDM), known to improve client engagement in care and its quality, is crucial to achieve family-tailored care. However, when providing integrated youth care, SDM can be challenged by the complexity of families' problems and the multiple family members and professionals involved. Commonly used SDM models may not adequately address these specific challenges. Therefore, this qualitative study explores families' and professionals' perspectives on essential elements of SDM with families experiencing multiple and enduring problems on different life domains (e.g., mental health, parenting, financial, and social problems). Semi-structured interviews were conducted with 18 parents, 3 youth, and 22 professionals from Specialist Integrated care Teams in four regions of the Netherlands. A framework method - comprising essential elements of SDM - was applied to systematically code the transcripts both deductively and inductively. Our study shows the nine essential elements of SDM require a specific interpretation in the context of integrated youth care, regarding the diversity of participants in decision-making, the complexity of the problems, and SDM as a continuous process of multiple decisions. In addition, families and professionals mentioned three complementary elements: (1) build collaborative relationships, (2) prioritize problems, goals and actions, and (3) interprofessional consultation. Thus, in integrated youth care professionals are recommended to consider SDM as a cyclical process of larger and smaller decisions and take time to build collaborative relationships with families and the care network. Throughout the care process families and professionals balance their mutual roles in decision-making in line with the changing needs and preferences of families.