Are you struggling to recruit children or adolescents for your research? Are you concerned that you may face high attrition rates in your upcoming study with youth? If so, you are not alone. Many researchers find recruiting and retaining young participants in their studies challenging.
The DigiKnowIt News website is designed to help researchers recruit and retain more children and adolescents in research studies by empowering and involving young people in the decision-making process about whether to participate or not.
Why should involving children and adolescents in the decision-making process be a priority for you?
Many young people are interested in learning about clinical trials and opportunities to participate in a clinical trial.1 In addition, young people and their parents report that they value the inclusion of the young person in the decision-making process about whether or not to participate in a clinical trial.2 Family dynamics can affect how engaged a child is in the decision-making process; some parents might make the final decision and some parents might involve their children in the decision.
When a child or adolescent understands that they have a voice in the decision-making process, they may feel more confident assenting to participate and more motivated to take part in a study. Feeling empowered during the decision-making process may also lead a young person to feel comfortable speaking up and asking questions when they are actively participating in a clinical trial, which may make them less likely to end their participation early if they become uncomfortable or confused at any point during the trial.
By prioritizing the empowerment and inclusion of youth in the process of making a decision to participate in your clinical trial, you may increase the likelihood of collaborative decision-making among parents and their children, help young people feel motivated to participate, and prevent attrition in your study.
How can DigiKnowIt News help you empower children and adolescents during the decision-making process?
DigiKnowIt News was strategically designed to empower young people during the decision-making process by providing them with important information about clinical trials, illustrating what participation in a trial may be like, and offering them opportunities to practice making decisions related to clinical trials. Children and adolescents can better contribute to making a decision about their participation when they fully understand what a clinical trial is and what they are being asked to do. Knowledge about clinical trials and the decision-making process may also help children and adolescents feel more comfortable and confident when making a decision about their participation.
To empower young people, DigiKnowIt News includes videotaped, hypothetical situations related to pediatric clinical trials in which they can use their decision-making skills and reinforce the knowledge learned in the website. DigiKnowIt News also describes what participant rights are and how young people can learn about their rights in the clinical trial they are considering participating in. DigiKnowIt News encourages children and adolescents to use their voice before and during their participation in a clinical trial by describing the importance of them asking questions and having discussions with their parents, research team members, and medical professionals.
DigiKnowIt News also contains an eLearning module dedicated to teaching adolescents and their parents what the shared decision-making process may involve. The module is designed to promote healthy communication and collaboration between adolescents and their parents during the decision-making process, while empowering teens to contribute to decision-making instead of simply accepting their parents’ decisions.
Incorporating the voices and feedback of children and adolescents was a priority for our research team as we developed DigiKnowIt News. Our team gathered insights and feedback from youth and parent advisory panels as well as from parent-youth pairs to ensure that its content was relevant, engaging, and developmentally appropriate for children and adolescents. Our team also conducted two randomized controlled trials which found that children and adolescents in the intervention groups (who viewed DigiKnowIt News) reported being significantly more confident in their abilities to participate in a clinical trial and more positive about participating in a clinical trial than youth in the active control group (who viewed an alternative website).3,4
The perspectives of children and adolescents have helped our team develop DigiKnowIt News in ways that are empowering to young people, so that researchers like yourself now have a readily available tool to use to involve children and adolescents in the clinical trials decision-making process to increase participation and lower attrition rates in their studies.
- Luchtenberg, M., Maeckelberghe, E., Locock, L., Powell, L., & Verhagen, A. A. (2015). Young People’s Experiences of Participation in Clinical Trials: Reasons for Taking Part. American Journal of Bioethics, 15(11), 3-13. https://doi.org/10.1080/15265161.2015.1088974
- Ingersgaard, M. V., Tulstrup, M., Schmiegelow, K., & Larsen, H. B. (2018). A qualitative study of decision-making on Phase III randomized clinical trial participation in paediatric oncology: Adolescents’ and parents’ perspectives and preferences. Journal of Advanced Nursing, 74(1), 110-118. https://doi.org/10.1111/jan.13407
- Parker, A. E., Scull, T. M., & Morrison, A. M. (2022). DigiKnowIt News: Educating youth about pediatric clinical trials using an interactive, multimedia educational website. Journal of Child Health Care, 26(1), 139-153.
- Parker, A. E., Scull, T. M., Green, J., & Stump, K. (in press). Evaluation of an interactive, educational website developed for adolescents to learn about pediatric clinical trials: DigiKnowIt News.