Motivate and Involve Young People in Your Research with DigiKnowIt News: Help Them Know What Questions to Ask
To feel informed and comfortable to decide to participate in your research study and to complete the study protocol, children and adolescents must be provided with opportunities to ask questions about your study and what their participation may involve. Like most researchers, you probably provide these types of opportunities to all prospective volunteers as well as all of the enrolled participants all throughout your study protocol. However, research has revealed that despite these efforts, some young people still may not actually know what types of questions they should ask that will provide answers to address their fears, motivate them to participate, and explain the study activities to them in ways that enhance their comprehension.1
DigiKnowIt News addresses these needs to help you recruit and retain more young people for your research.
Why is it important for your prospective participants to ask questions?
As discussed in a previous blog, the most common reasons young people are reluctant to participate in research studies are that they:
- are afraid of the risks involved with participation and
- have been misinformed or are uninformed about research.
Helping children and adolescents understand the benefits and risks, and develop realistic expectations related to research participation may help them feel more motivated and confident about participating in your study.
A vital part of helping young people understand these concepts is providing them with opportunities to ask questions about your research.
When young people ask questions, researchers, parents, and healthcare providers also have opportunities to address potential participants’ fears about research, so they may be less reluctant to participate.
In addition, being given opportunities to ask questions during the assenting process may empower children and help them feel more confident in their abilities to make a decision about participating in a study.2
How can you help children understand what questions to ask, so they may better understand your specific research project and feel more comfortable about participating?
You can design DigiKnowIt News to reflect your study’s methods and procedures, and offer access to the website to prospective participants.
DigiKnowIt News provides children and adolescents with information about:
- what clinical trials are,
- what they may expect from participation in a clinical trial and/or in your study,
- benefits and risks associated with participation in a clinical trial and/or in your study,
- their rights as a participant,
- the importance of asking questions before and during research participation,
- what types of questions might be helpful to ask about your study, and
- who they can question about different topics related to your study.
By developing a basic understanding of these concepts, young people are better able to formulate their own questions about research participation, so they can expand their knowledge and build their motivations to participate.
DigiKnowIt News contains various activities designed to teach young people how to ask questions before or during a study, as well as examples of questions they can ask. For example:
- Youth can participate in a simulated “interview” with a researcher as part of an interactive learning module. Youth can select what questions they would like to ask the researcher from a list of common questions that participants have about research and then, receive answers from the researcher in brief video responses.
- As part of another interactive learning module, youth can practice asking questions and speaking in a simulated “conversation” with their character’s parents as their character makes a decision about whether or not to participate in a clinical trial.
- Youth can read and interact with digital comic books that show demonstrations of a character asking questions and having discussions with their doctor, parents, and research staff.
- Children and adolescents can view video interviews, called Spotlights, of youth sharing their real-life experiences participating in a clinical trial, including the kinds of questions they asked when they decided to participate.
It is important that your research team not only encourages children and adolescents to ask questions about your research study during the assenting process, but also help young people to understand who and how to ask questions. DigiKnowIt News teaches young people basic knowledge about clinical trials and the skills they need to formulate and ask questions based on their fears and curiosities about participation. In turn, your research team will be able to provide answers to potential participants that ease their fears about research, help them understand what they will do as part of your study, and form realistic expectations for participation, which will ultimately help them to feel more motivated to participate.
- Lambert, V., & Glacken, M. (2011). Engaging with children in research: Theoretical and practical implications of negotiating informed consent/assent. Nursing ethics, 18(6), 781–801. https://doi.org/10.1177/0969733011401122
- Miller, V. A., Feudtner, C., & Jawad, A. F. (2017). Children’s Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy. Journal of empirical research on human research ethics : JERHRE, 12(2), 87–96. https://doi.org/10.1177/1556264617696921