Research In Practice Blog
Adolescents living with chronic disease are navigating the management of their illness, while also experiencing the emotional, behavioral, biological, and social changes faced during adolescent development. Studies have found that adolescents with chronic disease who struggle to manage their illness may face worse health outcomes, reduced self-efficacy, and adverse psychological outcomes.
Adolescent decision-making involvement (DMI) includes behaviors such as requesting information or advice, providing opinions, and expressing treatment preferences. Greater adolescent DMI has been associated with higher satisfaction, self-efficacy, knowledge, and adherence, as well as lower decisional conflict. Parents and clinicians are crucial in facilitating adolescent engagement. Clinicians in particular can help balance adolescents’ growing independence with parents’ protective role as interactions shift from dyadic (parent-clinician) in childhood to triadic (adolescent-parent-clinician) in adolescence.
The study, titled ‘Parent and adolescent perspectives on decision-making involvement: A qualitative comparison in sickle cell and diabetes clinics,’ outlines similarities and differences in adolescents’ and parents’ perceptions of adolescent DMI, and clinician and parental facilitation of adolescent DMI, between adolescents with type 1 diabetes and sickle cell disease.
“Implementing strategies to help adolescents take charge of their disease management can improve their health outcomes. Focusing on getting adolescents involved in the decision-making process is a great first step,” said Dr. Victoria Miller, a Core Faculty member in Clinical Futures, and a principal Investigator and senior author on the study.
The comparative study, which also includes Clinical Futures Director Dr. Alexander Fiks and Clinical Futures Associate Director of Clinical Trials, Dr. Pamela F. Weiss, looked at adolescents with sickle cell disease and type 1 diabetes as both diseases are pediatric onset chronic illnesses that require intensive self-management and frequent interaction with health care providers. With both sickle cell disease and type 1 diabetes, pediatric patients will eventually take primary responsibility for their illness, and adolescents will need to communicate their symptoms and preferences.
“We wanted to explore how adolescents and parents describe adolescent DMI, how parents and clinicians were facilitating DMI in the context of sickle cell disease and type 1 diabetes, and what similarities and differences emerge across these illness groups. These data can inform the development of strategies to increase adolescent decision-making involvement in racially and ethnically diverse youth with chronic illness,” said Dr. Miller.
Interviews with adolescents and their families
The team analyzed data from semi-structured qualitative interviews with 33 adolescents (age 12–17 years) with sickle cell disease (SCD; n= 19) or type 1 diabetes (T1D; n= 14) and 32 caregivers. The qualitative interview data were collected as part of a larger study, the aim of which was to utilize qualitative data to generate items for a new measure of adolescent DMI during clinic visits for chronic illness, including SCD, T1D, juvenile idiopathic arthritis, and inflammatory bowel disease.
The interviews explored both adolescent and caregiver perceptions on how decisions were made during the most recent clinic visit, the extent of the adolescent’s involvement, and the roles parents and clinicians played in facilitating or restricting the adolescent’s involvement. Experts found overall, adolescent, parent, and clinician behaviors were similar among adolescents with SCD and T1D:
- Adolescents in both groups demonstrated direct communication with clinicians, active listening, and participation in decision-making.
- Parents of adolescents in both groups facilitated adolescent involvement by following up with adolescents on clinician questions, ensuring attention, encouraging adherence to recommendations and eliciting feelings on clinicians' recommendations.
- Parents and adolescents in both groups described that clinicians facilitated adolescent
involvement by eliciting information directly from the adolescent, delivering information directly to the adolescent, rapport building, and seeking adolescents’ perspectives and input on recommendations.
Differences in DMI between the two disease groups included:
- Some adolescents with SCD occasionally made a specific decision during the clinic visit, but this pattern did not emerge among adolescents with T1D
- Parents of adolescents with T1D facilitated DMI even when the parent had limited involvement with the clinician during the visit, but this pattern did not emerge among parents of adolescents with SCD
- Some parents of adolescents with T1D were primary communicators with clinicians, but this pattern did not emerge among parents of adolescents with SCD
- Some clinicians directed discussions and communicated recommendations primarily with parents rather than adolescents with SCD, but this pattern did not emerge among parents of adolescents with T1D
- Adolescent involvement and non-involvement behaviors were attributed to parent and clinician behaviors among adolescents with T1D, and to maturity and relational dynamics with clinicians among adolescents with SCD
Encouraging adolescent decision-making involvement
Researchers concluded that creating tailored approaches may contribute to increased adolescent participation in medical decision making. Clinicians and parents can also facilitate involvement and balance engagement by asking questions, offering information, and soliciting input from adolescents. Furthermore, researchers found that adolescents and parents in both groups perceived that longstanding and trusting relationships with clinicians have a positive impact on adolescent DMI.
Specific strategies to improve adolescent DMI include:
- Directing questions to adolescents.
- Inviting them to share their concerns and preferences.
- Validating their input in decision-making.
- Using communication that is clear and developmentally appropriate.
“Although some adolescents may be reluctant to participate actively in decision making during clinic visits, clinician behaviors that demonstrate respect for the adolescent’s growing independence, such as asking for their opinions and showing interest in the adolescent’s life outside of their chronic illness, can set the stage for increased participation over time,” said Dr. Miller.
Clinical Futures author(s): Alexander G. Fiks, MD, MSCE, Pamela F. Weiss, MD, MSCE, and Victoria A. Miller, PhD