Parent and adolescent perspectives on decision-making involvement: A qualitative comparison in sickle cell and...

To compare adolescent and parent perceptions of decision-making involvement (DMI) in clinic visits for sickle cell disease (SCD) and type 1 diabetes (T1D), and to identify behaviors that facilitate or limit adolescent participation.

Semi-structured qualitative interviews were conducted with adolescents with sickle cell disease (SCD; N = 14; 100 % Black) and type 1 diabetes (T1D; N = 19; 71 % White) and their parents. Using an inductive grounded theory approach, responses to questions about adolescent, parent, and clinician behaviors related to adolescent DMI were reviewed, coded, and sorted into categories and themes.

Overall, many adolescent, parent, and clinician behaviors related to adolescent DMI were described as similar across the two groups. Differences were noted in that some adolescents with SCD occasionally made independent decisions during clinic visits, parents more often acted as facilitators and primary communicators of adolescents with T1D, clinicians more often directed discussions and recommendations primarily to parents of adolescents with SCD, and DMI was attributed to maturity and longstanding relationships with clinicians among adolescents with SCD, whereas among adolescents with T1D, it was attributed to clinician and parent behaviors.

Findings from the study highlight the importance of trusting relationships between patients and clinicians, and specific parent and clinician behaviors for facilitating adolescent DMI.

Tailored approaches may contribute to increased participation in medical decision making and improved health outcomes, particularly among racially diverse adolescents with chronic health conditions.