Abstract
Background: In integrated youth care shared decision-making (SDM) is deemed the approach to tailor care to families’ needs. However, families experiencing complex problems often feel insufficiently heard and involved in decision-making on their care. In practice, SDM is hampered by the multitude and changeability of families’ problems as well as differing opinions and roles of the multiple professionals and care services involved. Therefore, in this qualitative study we explored challenges of SDM in the setting of integrated youth care, and the facilitating strategies professionals and families adopt to overcome these challenges.
Approach: As part of our participative research project ‘The Specialist nearby?!’, in which we followed five Specialist Integrated care Teams (SITs), we gathered experiences and perspectives of 18 parents, 3 youth and 22 care professionals by semi structured interviews. Moreover, engaging three professionals from the SITs as research practitioners, observations of SITs’ multidisciplinary team case meetings were conducted. Combining thematic, context, and strategy coding, provided an in-depth understanding of SDM in the specific context of families with multiple and enduring problems.
Results: It is precisely the interplay between barriers in the context of families and in the context of professionals and care services leading to complex, adverse processes in SDM regarding families' autonomy, mutual trust and multiple partnerships in decision-making. The challenges as well as facilitating strategies are described in three themes: (1) Balancing roles of families and professionals, (2) Trust and collaboration in shared decision-making, and (3) Multiple stakeholders in decision-making.
Implications: When making shared decisions on care with families experiencing complex problems, it is essential to approach SDM as a continuous cycle throughout the care process. Moreover, professionals should foster continuity in relationships with families and the involved care network and engage in a human-to-human partnership with families. In this way, families and professionals can walk the path of care together until families continue their own path.