“The Doctor Only Knows What He Knows, but I Know What I Know:”: Parent Perspectives on Shared Decision Making with Adolescents

Background. Shared decision making (SDM) involving adolescents with chronic conditions is a triadic process that requires engaging adolescent patients, their parent(s), and their health care provider. We sought to understand the perspectives of parents about these interactions and the parents’ role in SDM. Methods. We conducted semi-structured qualitative interviews with parents of adolescents (aged 12–17 y) with chronic conditions. The interviews focused on parents’ experiences of medical decision making related to their adolescent’s care, followed by experiences of SDM. We specifically addressed key aspects of SDM including information exchange, options, values, and preferences. We coded and analyzed the interviews using thematic content analysis. Results. Twenty-one parents completed an interview (median age 44 y, 91% female, 53% non-White). We identified 4 themes from the data: parents want an executive role , parents as experts , parents’ perceptions of others’ roles , and parents’ necessities for SDM . Parents described wanting to control the level to which their adolescent is involved in SDM based on their perceived knowledge of their adolescent’s capabilities. Parents reported feeling pressure to understand all aspects of potential decisions. Finally, parents underscored the need for trusting relationships between all members of the triad. Conclusions. Parents identify key roles for themselves and others in triadic SDM. By understanding these perspectives, health care providers may be better prepared to promote SDM in the care of adolescents with chronic conditions. Implications. This research has implications for how decisions are shared between providers and families. Valuing parents and including them in decision making has the potential to establish stronger relationships between the family and the care team and reduce parents’ anxiety about their child’s health. Highlights This study is the first to explore parents’ perspectives of triadic SDM involving an adolescent with a chronic condition. We identify situations (e.g., non–life-threatening treatment decisions, before an impending transition to adult medicine) in which parents may be more amenable to including their adolescent in the decision process. Understanding parents’ perspectives on decision making can help providers establish strong relationships with the families, which may improve care for adolescents with chronic conditions.