Essential Elements of Shared Decision-making with Youth and their Families with Multiple and Enduring Problems

Abstract

Abstract Shared decision-making (SDM) is crucial to achieve family-tailored care. However, when providing integrated youth care, SDM can be complicated by the context of families with complex problems, and the multiple 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 with multiple and enduring problems. Semi-structured interviews were conducted with 18 parents, 3 youth and 22 professionals from Specialist Integrated care Teams. A framework method - comprising essential elements of SDM - was applied to systematically code the transcripts both deductively and inductively. Our study shows that the nine essential elements of SDM require a specific interpretation in the context of integrated youth care. Consideration must be given to 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 must 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.