As fellow researchers, we understand that recruiting participants for pediatric research is difficult. Researchers across the nation are struggling to recruit an adequate number of children or adolescents to participate in their research studies and clinical trials.
DigiKnowIt News is a multimedia, educational website that addresses the most common barriers to pediatric research participation to help you recruit more children and adolescents for your study.
So, why are children hesitant to participate in research studies, and what can you do about it?
Not only is the pool of potential participants smaller for pediatric studies than studies for adults, but many children and adolescents are reluctant to participate in research at all. Research has shown that fear of risks, lack of information, and misinformation about pediatric clinical trials are the main reasons children and parents are unmotivated or unwilling to participate in research.1 When children and adolescents do not understand what research studies are, why they are important, or what they may be asked to do as a participant, they are likely to feel nervous to be involved.
If your study involves medical procedures, either invasive, such as venipuncture, or noninvasive, such as MRI or ultrasound scans, children may be afraid that the procedures will be painful or uncomfortable for them. Children or teenagers may also just have a fear of the unknown if your study involves them experiencing a medical or diagnostic procedure that is unfamiliar to them.
Several studies have found that young people’s fears of potential side effects of clinical trials treatment, prolonged hospitalization, and discomfort with experimentation are common reasons they view research participation negatively.2 In these situations, education that explains what it means to participate in an actual trial and the value of doing so may help mitigate these fears.
In addition, children are often concerned that the time it would take them to participate in a study would take their time away from being with their friends or from participating in their hobbies.3 Children and teenagers in today’s world are busy with afterschool activities and especially since the COVID-19 pandemic, want to maximize time with their friends. Research has shown that quarantining and social distancing practices during the pandemic caused children and adolescents to reflect more on the irreplaceable nature of friendship and unsuspected benefits of in-school instruction for socialization.4 For this reason, young people may place higher value on the time they are able to spend with their peers post-pandemic. In addition, children have been spending more of their leisure time outdoors, have joined sports clubs more often, and have spent less time on screens in the past few years compared to before the pandemic.5
Children may have preexisting attitudes or beliefs about research that deter them from participating, such as beliefs that researchers are untrustworthy or deceptive. Educating young people on the roles of researchers and medical professionals leading a research study as well as the laws that researchers must follow to protect participants may help young people form more positive attitudes towards research. In addition, providing examples to potential participants of what it is like to interact with research staff, such as demonstrating how researchers can answer participants’ questions and how participants can speak with medical staff during medical procedures, may ease their anxiety by helping them to know what to expect before, during, and after participation.
Young people may also be unaware of the many ways that participating in research can benefit them and feel that participating is not worth their time or efforts. They may be more open to research participation after receiving training or having educational experiences that help them to understand the many benefits of participating in research.
What can you do to increase participation rates?
Our team of researchers and web developers created the DigiKnowIt News customizable website specifically to help researchers address these common recruitment barriers and meet their recruitment goals. DigiKnowIt News can be used to educate children and adolescents about what clinical trials are, how they can benefit from participation, and what their rights are as participants, so they feel more comfortable participating in research. Each researcher can choose what topics and educational materials to include in their custom website, so they can educate their potential participants on the specific medical procedures involved in their unique clinical trial. For example, researchers can choose to include interactive, informative modules on procedures such as venipuncture, MRI, organ testing, sedation, and anesthesia.
DigiKnowIt News was strategically designed to help you recruit more young people for your research, establish trust with participants, and involve youth in the decision-making process before and during study participation. To learn more about DigiKnowIt News and how it can help you recruit young people for your research, visit https://digiknowit.com/overview/ for more information.
- Tromp, K., Zwaan, C. M., & van de Vathorst, S. (2016). Motivations of children and their parents to participate in drug research: a systematic review. European Journal of Pediatrics, 175(5), 599–612.
- Forcina, V., Vakeesan, B., Paulo, C., Mitchell, L., Bell, J. A., Tam, S., Wang, K., Gupta, A. A., &Lewin, J. (2018). Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review. Adolescent Health, Medicine and Therapeutics, 9, 87–94.
- Greenberg, R. G., Gamel, B., Bloom, D. Bradley, J., Jafri, H. S., Hinton, D., Nambiar, S., Wheeler, C., Tiernan, R., Smith, P. B., Roberts, J., & Benjamin, D. K. (2018). Parents’ perceived obstacles to pediatric clinical trial participation: findings from the clinical trials transformation initiative. Contemporary Clinical Trials Communications, 9, 33–39.
- Larivière-Bastien, D., Aubuchon, O., Blondin, A., Dupont, D., Libenstein, J., Séguin, F., Tremblay, A., Zarglayoun, H., Herba, C. M., & Beauchamp, M. H. (2022). Children’s perspectives on friendships and socialization during the COVID-19 pandemic: A qualitative approach. Child: care, health and development, 48(6), 1017–1030. https://doi.org/10.1111/cch.12998
- de Bruijn, A. G. M., Te Wierike, S. C. M., & Mombarg, R. (2023). Trends in and relations between children’s health-related behaviors pre-, mid- and post-Covid. European journal of public health, 33(2), 196–201. https://doi.org/10.1093/eurpub/ckad007