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Seeking Independence: Improving Youth Involvement in Their Care

Published on
October 7, 2021
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Adolescent care

Researchers seek to improve adolescent involvement in care for their chronic illness.

shafere1 [at] chop.edu (By Emily Shafer)

Adolescence can be a tricky time for many youths as they start to become more independent. For those with chronic illnesses, this independence may have implications for the management of their condition. Researchers at Children’s Hospital of Philadelphia seek to understand how these youth can be more involved in decisions regarding their care.

With a new grant from the National Institute of Nursing Research, Victoria A. Miller, PhD, a pediatric psychologist and director of research in the Craig Dalsimer Division of Adolescent Medicine at CHOP, is leading the charge for youth to be more involved in their care. The hypothesis is that if youth are more involved in their visits, they’ll have better treatment adherence, better self-management skills, higher self-efficacy, and higher perceived global health.

“In the context of an outpatient medical visit, where there’s a provider, and a parent, and the youth, it is difficult to understand how youth either are or are not involved in decisions and planning related to their chronic illness management,” said Dr. Miller, who is also an associate professor of Pediatrics and Medical Ethics & Health Policy at the University of Pennsylvania Perelman School of Medicine. “In the adult world, there are measures of shared decision-making. But the premise for the grant is that the concept of shared decision-making doesn’t apply to youth because there’s not necessarily mutuality among all of those involved in the care, especially because youth are still in the midst of developing their communication and decision-making skills.”

There is a lack of empirical research to understand the interactions within the parent-youth-provider triad about decisions and outcomes over time. Part of the reason that research is lacking is the absence of reliable, valid measures to assess the parent-youth-provider interactions in decision-making behaviors. The primary goal of this study is to develop a measure of youth involvement in the decision-making during outpatient visits for pediatric chronic illness.

The study has three aims. The first is to use semi-structured qualitative interviews with youth, parents, and providers, and cognitive interviews with youth and parents, to understand the different behaviors that all three parties might exhibit during a clinic visit that involve youth in decision making. With the data from these interviews, the researchers will develop a new measure called the Decision Making Involvement Scale – Medical Encounters (DMIS-ME).

The second aim of the study is to enroll and assess youth and their parents after an outpatient specialty care visit. At this point, the youth and parents will complete the DMIS-ME and other measures about decision self-efficacy, perceived global health, self-management skills, and adherence.

“The expectation is that higher youth involvement will correlate with these other important aspects of their health,” Dr. Miller said. “The goal ultimately is to develop interventions to enhance youth involvement in their own care.”

The last aim of the study is to identify and describe ethnic/racial disparities in youths’ perceived involvement in decision-making, based on data from the previous study aims. The inclusion of patients with sickle cell disease, which primarily affects African American and Hispanic individuals, will allow the researchers to evaluate the racial and ethnic differences in how youth perceive their involvement in their medical care.

In addition to patients with sickle cell disease, the study also will include patients (ages 12 to 17 years) with type 1 diabetes, juvenile idiopathic arthritis, and inflammatory bowel disease. These four illnesses share important characteristics: All are life-threatening, and all involve a burdensome treatment regimen that can pose challenges in terms of treatment adherence. The measure will be applicable across multiple chronic illness groups.

“Most of my research is focused on how we help kids become more independent and responsible for taking care of themselves,” Dr. Miller said. “The interaction during clinic visits is an important piece of that because providers shape communication and expectations around decision-making. We need to proactively think about how we can support adolescents in managing their chronic illness, and how we can set the stage for their increasing involvement in decision-making as they mature.”

The co-investigators at CHOP include Alexander G. Fiks, MD, MSCE; Pamela Weiss, MD, MSCE; Helge Hartung, MD; and Rui Xiao, PhD.