November 25, 2024, Durham, NC – iRT is pleased to announce that it has received a grant from the Office Of The Director, National Institutes Of Health (OD) and the Eunice Kennedy Shriver National Institute Of Child Health & Human Development (NICHD) to examine the communication behaviors and experiences of parents and adolescents as they make decisions together about participation in pediatric clinical trials.
Low participation rates and poor retention of participants in pediatric clinical trials impedes innovation in child and adolescent medicine. Understanding what factors impact young people’s decisions to participate in clinical trials informs the creation of strategies to improve participation rates. As a result, participation in pediatric clinical trials supports the discovery of effective treatments and interventions for young people.
The decision-making process for potential participants in pediatric clinical trials is unique and complex in that it requires both a parent and adolescent to make decisions about the adolescent’s participation. In addition, communication dynamics and decision-making behaviors vary among different families. iRT researchers will contribute to a better understanding of these ideas by conducting a research study examining the clinical trial participation decision-making process among parents and adolescents.
More specifically, the study will examine communication dynamics between adolescents and parents when discussing whether the adolescent will participate in a clinical trial. This study includes observing parent and adolescent pairs discussing the decision as to whether the adolescent will participate in two different types of hypothetical clinical trials. iRT’s research team will code videotapes of parents’ and adolescents’ communication behaviors while having conversations about participation. Parents and adolescents will also complete questionnaires about decision-making involvement and communication satisfaction. A subset of the participants will participate in semi-structured interviews to learn more about their experiences during the decision-making discussions.
The study aims to provide insight into how parents and adolescents are each uniquely involved in the decision-making process, how satisfied they are with their communication about participation, and how both positive and negative communication behaviors impact the likelihood for adolescents to participate in clinical trials.
Findings from this study may inform the development and improvement of resources and tools designed to support families in the decision-making process and potentially improve participation and retention rates in pediatric clinical trials.