Educating children and adolescents about your research study’s protocols and procedures may help them feel more comfortable and prepared to participate in your research. However, information that is commonly shared during and after the assenting process is typically written by adults, lengthy, and difficult to read. That means that the information used to educate young people about research may not be easy for them understand, which could make them feel unsure or uncomfortable about making the decision to participate in a study.
DigiKnowIt News fills this gap in readily available tools for researchers to use with youth, because it is both developmentally appropriate and engaging. The DigiKnowIt News website was developed with the developmental abilities, interests, and needs of children and teenagers in mind, so that it would pique their interest by being interactive, visually compelling, and relevant. The goal of creating this customizable website was to engage youth enough so they would be motivated to learn about research. In order to accomplish these goals, both children and teenagers assisted with the development of DigiKnowIt News and shared their preferences about how the preferred to learn.
Are your potential participants actually informed and engaged?
You have probably already developed an informed parent permission form as well as a child assent form. Your research protocol may also include having a study team member meet with prospective young participants in order to discuss your study’s protocols and procedures. You probably also have contact information readily available, so that both prospective volunteers and enrolled participants can reach you (the PI and/or Project Director), a team member, and your IRB. However, it is also important to consider whether you are providing young children with information about your research in ways that are proven to be understandable and engaging to them. By doing so, you can be more confident that your participants fully understand what they are being asked to do before they agree to participate.
What do young people want to know about research?
Youth have reported that they want to understand the potential benefits and side effects associated with participating in a research study. They have also reported that they want to know their roles and rights in a clinical trial. Furthermore, they want to be made aware of any expectations that the researchers may have for participating in a study when they are making the decision about whether to participate or not.1 Young people may not sufficiently understand these types of important information about your study, especially if the information is presented only in a written format. A written communication format does not account for the motivational, cognitive, and emotional differences between young people and adults.
What methods of communication are best to use with youth?
The use of developmentally-appropriate informational materials such as digital comics, animations, and videos of peers may be a more engaging vehicle for sharing information with youth, and may help them to more fully understand information about what participation in your research means. In fact, one study found that children who received information about clinical research in multimedia, digital format demonstrated greater improvements in knowledge about clinical trials than children who received the same information in paper format.2
What are barriers to using developmentally-appropriate materials to recruit youth to participate in research studies?
For an individual researcher interested in applying these findings to offering developmentally-appropriate information about their research in formats that are conducive to engaging and retaining children and adolescents, there are three main barriers to accomplishing this goal.
- First, it is expensive to create multimedia and professionally graphically designed resources for an individual study.
- Second, to create and offer these types of resources to reflect the interests of young people, young people need to be involved in the development process which can take years of iterative drafts to achieve a final product.
- Third, young people today are digital natives, so informational resources need to be accessible and interactive on the web; however, custom web design and web applications development needed to host these types of materials is both expensive and time-consuming, and requires technical expertise to make them accessible to youth with disabilities, which may be beyond the capability of an individual research study or individual research lab.
The research, software, and design teams at iRT have spent years in development to be able to offer a turnkey solution to researchers by creating DigiKnowIt News.
What is the solution that DigiKnowIt News offers for educating potential participants?
DigiKnowIt News includes all of the fundamental information that children and adolescents reported wanting to understand before making the decision to participate in a study, such as:
- benefits of being in a clinical trial study,
- side effects of being in a study,
- roles of study participants and research teams,
- participants’ rights, and
- realistic expectations for participation.
Most importantly, information about these topics and more are communicated in an understandable, developmentally-appropriate way through interactive activities and animations, while using a vocabulary that is understandable to children and adolescents.
DigiKnowIt News can be adapted for use by young people of various age groups and with a range of abilities. For example, there are resources specifically designed for children, resources specifically designed for teens, and resources that can be used across ages.
In fact, children and adolescent who explored the developmentally-appropriate versions of the DigiKnowIt News website reported that they liked the content and format of DigiKnowIt News and that they learned new information that could be used to help them make decision in the future.
Another exciting and useful feature of DigiKnowIt News is that you can seamlessly integrate it into your existing informed assenting process through an easy-to-use online procedure, so that you can include and design your DigiKnowIt News website to include only content that is relevant for your specific study. In other words, you can select what modules or information you want, and not use or display any multimedia assets or topics that are is not relevant or needed. DigiKnowIt News can be used to replace or supplement your current informational materials for prospective child or adolescent participants.
The website is affordably priced, so that it is accessible for use by any level of researcher, and use of the website will save researchers thousands of dollars and years of development time that would be needed to create and implement a comparable solution.
If you are interested in using DigiKnowIt News to educate young people about your research study in developmentally-appropriate ways so they may be more likely to participate in your study, click here to get started.
- Martin-Kerry JM, Knapp P, Atkin K, et al. (2019) Supporting children and young people when making decisions about joining clinical trials: Qualitative study to inform multimedia website development. BMJ Open 9: e023984
- Tait, A. R., Voepel-Lewis, T., & Levine, R. (2015). Using digital multimedia to improve parents’ and children’s understanding of clinical trials. Archives of Disease in Childhood,100(6), 589–593.