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How Medical Scan Anxiety May Be Impacting Pediatric Trial Recruitment

2026-03-03T16:03:40+00:00March 3, 2026|

Medical imaging procedures — including MRI, CT, PET scans, and X-rays — are routine components of pediatric research protocols.

For children and adolescents, these procedures often involve:

  • Loud environments
  • Confinement
  • Prolonged stillness
  • Unfamiliar equipment
  • Separation from caregivers
  • Anticipation of discomfort

Anxiety and fear are common responses.1

Chart showing imaging environmental stressors for youth, including loud noises, confinement, long stillness, and unfamiliar staff.

For research teams, youth anxiety is not just emotional. When young people are not fully prepared or have high levels of anxiety about a part of the study protocol, it can impact the flow of activities which can, in turn, introduce procedural challenges for the research team and medical staff in the moment.

When youth experience imaging-related anxiety, they may resist procedures, move during scans, or require sedation. Families may hesitate about participation or follow-up imaging visits. Not only does youth fear impact participation rates, but movement during procedures can compromise scan quality, and sedation to reduce movement and anxiety introduces additional risk, cost, and complexity.

Flow diagram showing imaging fear leading to movement and incomplete imaging, leading to increased sedation, leading to increased risk and cost (Viggiano et al., 2015).

While participant anxiety around medical imaging procedures can potentially impact trial recruitment, retention, costs, and complexity, preparing participants can mitigate these risks. In fact, in pediatric MRI settings, youth psychological preparation significantly reduced their anxiety and fear and decreased the need for sedation by 18%.1

What does this mean for you? If imaging procedures are part of your protocol, youth emotional readiness may influence:

  • Enrollment decisions
  • Participant experience
  • Scan compliance
  • Procedural efficiency
  • Overall study costs

DigiKnowIt News prepares youth for research-related medical procedures through use of developmentally appropriate, interactive learning experiences that were designed to increase psychological readiness before participation decisions are made.

Screen capture from DigiKnowIt News showing how the website demystifies imaging procedures and the equipment involved for youth.

When customizing your DigiKnowIt News website, you can select web-based learning activities from a library of options to introduce children and adolescents to imaging procedures in an engaging, age-appropriate way.

Screen capture of DigiKnowIt News digital comic book that provides youth with illustrations of an MRI scan and provides them with strategies to remain calm during a scan.

Unlike traditional methods of educating youth about imaging procedures and participation, DigiKnowIt News uses interactive content and illustrations to build understanding and confidence, helping reduce emotional barriers before scan day.

Screen capture of DigiKnowIt News 'Spotlight' video of real youth who have participated in an imaging procedure as part of a clinical trial.

Increase your potential participants’ preparedness for your unique study. Explore and purchase DigiKnowIt News at digiknowit.com.

  1. Viggiano, M. P., Giganti, F., Rossi, A., Di Feo, D., Vagnoli, L., Calcagno, G., & Defilippi, C. (2015). Impact of psychological interventions on reducing anxiety, fear and the need for sedation in children undergoing magnetic resonance imaging. Pediatric Reports, 7, 5682. https://doi.org/10.4081/pr.2015.5682

Addressing Needle Anxiety to Improve Pediatric Study Enrollment

2026-02-24T19:34:28+00:00February 24, 2026|

Pediatric recruitment stalling? Needle fear may be the barrier you’re overlooking.1

Bar chart showing prevalence of needle fear by age, including >50% for children, 20-50% for adolescents, and 20-30% for adults.

Needle fear impacts youth avoidance of medical procedures.  More than half of children and even more than 20% of teens and adults are afraid of needles.1

What does this mean for you? If your research protocol includes blood draws, injections, or IV procedures, you may be fighting an uphill battle, because you are recruiting from a fear-sensitive population.

Flow diagram showing needle fear leading to avoidance of medical procedures, which may impact recruitment and retention in pediatric clinical trials.

Needle fear is a predictable, measurable barrier to enrollment in research, but it’s also addressable. DigiKnowIt News is a website built for and with youth that reduces emotional barriers to research participation before consent discussions begin.

Screenshot from DigiKnowIt News learning activities teaching youth about IVs, blood draws, and injections.

The DigiKnowIt News website educates youth about research and medical procedures that may be included in clinical trials, including needle procedures.

In peer-reviewed evaluations, DigiKnowIt News significantly outcomes related to clinical trial participation in youth including:

  • Knowledge
  • Positive attitudes toward participation
  • Confidence in participating2,3

Screenshot of DigiKnowIt News learning activity including video of child providing information about needle procedures.

When customizing your DigiKnowIt News website, you can choose to include from a library of highly interactive, engaging, developmentally-appropriate, web-based learning activities designed to help children and adolescents learn what to expect if the research protocol includes one or more needle procedures as a means of mitigating their fears about participating.

Screenshot of DigiKnowIt News digital comic book that teaches youth to talk to parents about needle fears.

Unlike many traditional methods of educating youth about needle procedures in clinical trials, DigiKnowIt News provides youth with comforting graphics showing the process of participating in a needle procedure, information about needle procedures that are developmentally understandable to them, and relatable testimonies from other youth who have participated in needle procedures.

Screenshot of DigiKnowIt News digital comic book demonstrating what it may be like to get a blood draw.

Mitigate needle-related enrollment barriers before your next recruitment cycle. Explore and purchase DigiKnowIt News at digiknowit.com.

 

 

  1. McLenon, J., & Rogers, M. A. M. (2019). The fear of needles: A systematic review and meta-analysis. Journal of Advanced Nursing, 75(1), 30-42.
  2. Parker, A. E., Scull, T. M., & Morrison, A. M (2021). DigiKnowIt News: Educating youth about pediatric clinical trials using an interactive, multimedia educational website. Journal of Child Health Care, online: DOI: https://doi.org/10.1177/13674935211003774
  3. Parker, A. E., Scull, T. M., Green, J., & Stump, K. N. (2025). Evaluation of an interactive, educational website developed for adolescents to learn about pediatric clinical trials: DigiKnowIt News. Journal of Pediatric Health Care, 39, 335-345.

An Educational Website About Your Study That Youth Actually Want to Use

2026-02-05T21:14:09+00:00February 5, 2026|

If you are trying to recruit youth to participate in your study, DigiKnowIt News, a customizable website that educates young people about research, is the ideal tool to use as part of your recruitment plan. The website was designed with input from youth, so that it would be developmentally appropriate, understandable, and optimally engaging for both children and adolescents. Sharing this website with potential participants, once you have customized it for your study, can help boost your recruitment and retention rates.

How does the child version engage children?

The child version of DigiKnowIt News was created with and for 8 – to 11-year-old children.

The multimedia designs in the child modules use bright colors, playful fonts, and simple, custom illustrations. Activities included in the child modules give children an audio option in which they can choose to have content read to them instead of choosing to read it on their own.

The pedagogical styles in the child modules are highly engaging and entertaining presented in interactive investigative learning activities and digital comic books.

The language used throughout the child modules was designed to be understandable for 8- to 11-year-olds. New vocabulary words and concepts are introduced and explained in simple, clear language and short sentences.

 

 

How does the teen version engage adolescents?

The teen version of DigiKnowIt News was created with and for adolescents.

The multimedia designs used in the teen modules reflect the request of adolescents who were involved in program development to include more complex content to read, fewer illustrations, fewer game-like learning activities, and more videos than the child modules.

 

 

The pedagogical styles used in the teen modules also include many informative, YouTube-style videos that contain concise and complex content, focusing on topics related to research participation, as well as interesting facts about research and medical procedures. In addition, the comic books included in the teen modules contain more information and fewer interactive elements than the comic books in the child version.

 

 

The teen version includes additional content beyond what is included in the child version. For example, it includes content specific to different types of medical procedures used in clinical trials (e.g., sedation and anesthesia; organ testing). It also includes a module designed to help young people understand the process that occurs between adolescents and their parents when they are deciding about whether to participate in a research project.

How do I customize DigiKnowIt News for recruiting the age group of my potential participants?

Once you have purchased DigiKnowIt News, you will have the opportunity to customize the website to reflect the measures and procedures your participants will experience in your study. If your study includes a measure or procedure that is not part of the existing website, then you can contract with us to create new modules to fit your study’s needs that can be incorporated into your website.

First, you can choose to show your participants the child version or the teen version of the website. Alternatively, you can let your potential participants choose which version they would like to view.

Second, within the version of the website you choose, you can select which modules, including investigations, comics, or spotlight videos, you want to include based upon your study’s protocol.

The software will guide you through making these decisions and building your custom website.

To review all content available for you to include in your custom DigiKnowIt News website for children and adolescents, click here.

Boost Your Research Proposal’s Competitiveness with DigiKnowIt News

2026-01-20T19:47:42+00:00January 20, 2026|

If you are planning to apply for grant or contract funding to support your pediatric research projects, it is important to develop a clear strategy to include in your proposals for how you will recruit participants. When reading your proposal, reviewers will look to see if it is realistic and feasible to recruit the number and types of people you want to participate in your study. In other words, your research proposal should not only include who you plan to recruit, but also how you plan to recruit and retain participants. Carefully strategizing and writing your recruitment and retention plan is particularly important for pediatric studies, because children and adolescents have unique needs when engaged in participant education in order to feel comfortable about choosing to participate, as we discussed in a previous blog.

One strategy to include in your proposal is to use an evidence-based, developmentally-appropriate recruitment website that is both interactive and customized to reflect your study protocol. DigiKnowIt News provides a low-cost, effective solution to fill this need.

Including use of DigiKnowIt News as part of your recruitment plan in your proposals will demonstrate to reviewers that you have a thoughtful plan for recruiting and retaining participants.

How DigiKnowIt News can strengthen your proposal.

The National Institutes of Health (NIH) have outlined various questions and points to consider when applying for a research grant (NIH, n.d.). Below, we describe how using DigiKnowIt News can help you address many of these points and increase your proposal’s competitiveness.

What mechanisms will you use to encourage recruitment?

The NIH recommend acknowledging multiple mechanisms for participant recruitment and retention in your grant application. While reaching potential participants and their families through flyers, advertisements, and digital marketing is an important first step in the recruitment process, reviewers also will look to see that you have a strategy that bridges the gap between attracting interest and obtaining assent. DigiKnowIt News offers that bridge by providing trustworthy, developmentally-appropriate education about study participation.

Have you designed your informational and study materials for your intended audience? Do you have realistic recruitment and retention strategies for all populations?

DigiKnowIt News was designed specifically to help researchers recruit and retain child and adolescent participants for research. It can be customized for children or adolescents based upon their developmental stage and learning preferences. The website features avatars and characters of diverse ages, genders, and races, helping all potential participants feel represented and included.

What are the barriers to participation? How will you prepare to address each of these barriers?

The NIH recommend thoroughly considering and addressing the specific barriers to participation for your unique target participant population when planning recruitment methods. Reviewers know that it is challenging to recruit children and adolescents for studies, particularly clinical trial studies that involve medical procedures, because young people may not fully understand what participation entails or may feel anxious about experiencing medical procedures. DigiKnowIt News helps overcome these barriers by providing education on various topic related to research participation and undergoing medical procedures to address the most significant barriers to youth participation in research including: lack of information, misinformation, mistrust, and fear about research.

Will study materials including consent forms and study instruments account for different literacy levels and cognitive abilities? Have you considered the language requirements and literacy of your proposed participants?

Including DigiKnowIt News in your proposal can help you stand out to reviewers, because, unlike materials commonly used to educate children and adolescents about research, the web application accounts for young people’s developmental abilities and preferred learning methods. With DigiKnowIt News, you can offer participants interactive activities and videos that use language that is easy for them to understand, so they can develop a better understanding of the purposes and methods included in your research project. In addition, DigiKnowIt News includes two separate versions of many interactive components that are designed specifically for children versus adolescents in order to increase engagement and accessibility across age groups.

What are the benefits to enrolling in your clinical research study from the perspective of your potential research participants?

Understanding the benefits of participating in research, in general, is a key motivating factor for children and adolescents making the decision about whether to participate. This is why DigiKnowIt News presents information using a variety of methods including interactive eLearning modules, video testimonials from former child and adolescent research participants, and digital comic books, in order to that allow young people to explore how participating in research might benefit them using the method that they find most appealing.

How will you retain participants?

DigiKnowIt News describes the potential risks of participating in research, how to communicate with research staff and ask questions, and what specific medical procedures may be like when participating. This information can help potential participants form realistic expectations for participating in research which may decrease the chances that they leave your study early when met with discomfort or challenges.

Are you aware that some communities are mistrustful of medical research? How do you plan to address these concerns?

A central goal of DigiKnowIt News is to reduce the fear and mistrust that potential participants have towards research, medical professionals, and/or researchers, which can be a barrier to participation. Its activities and video testimonials from real pediatric research participants are designed to empower children and adolescents to ask questions, teach them their rights as a participant, help them understand assent and consent, and remind them that they are able to remove themselves as a participant at any point in a study. In doing so, DigiKnowIt News can foster trust, autonomy, and confidence to help young people feel comfortable deciding whether to participate.

Next steps.

DigiKnowIt News was created by researchers and has been shown to increase youth knowledge, positive beliefs, and self-efficacy related to clinical trials participation. Our team can provide you with research findings and additional information about DigiKnowIt News that you can include in your proposal to demonstrate to reviewers that you have an evidence-based strategy for recruiting and retaining participants for your research.

If you would like use to provide you with some text or information about DigiKnowIt News to include in your proposal, email us at info@irtinc.us.

National Institute of Mental Health. (n.d.). Points to consider about recruitment and retention while preparing a clinical research study. U.S. Department of Health & Human Services. https://www.nimh.nih.gov/funding/grant-writing-and-application-process/points-to-consider-about-recruitment-and-retention-while-preparing-a-clinical-research-study

DigiKnowIt News Impacts Youth Outcomes Related to Increased Participation in Research

2025-12-01T19:54:51+00:00December 1, 2025|

Are you struggling with low participation rates or high attrition in your study, but you are not sure what to do about it? Maybe you spent time creating recruitment materials or a procedure to educate children or adolescents about your study, so they might assent, but it is just not cutting it.

Our team created DigiKnowIt News to give researchers like you a tool that was designed to reduce the barriers that may be impacting youth participation in research. DigiKnowIt News is evidence-based and can help you recruit and retain more young people for your clinical trial or research study.

Evidence that shows DigiKnowIt News’ usefulness for your research.

DigiKnowIt News was evaluated in two randomized controlled trials, including one conducted with children and one with adolescents and their parents. Findings from both studies point to the usefulness of DigiKnowIt News for educating young people about research which can, in turn, help researchers combat low participation rates.

Some of the most common barriers to youth participation in research are lack of information, misinformation, mistrust, and fear about research. DigiKnowIt News was found to help alleviate these barriers by increasing child and adolescent knowledge, positive beliefs, and self-efficacy related to clinical trials participation. Below, read some of the important findings from the DigiKnowIt News evaluation studies:

  1. DigiKnowIt Newsmade children more knowledgeable about clinical trials. Youth who used the website had more correct answers on the clinical trials knowledge quiz at posttest compared to youth in the control group.
  2. DigiKnowIt News made children and families feel more positively about clinical trials. Children, adolescents, and parents reported more positive beliefs about clinical trials after using DigiKnowIt News than those that did not.
  3. DigiKnowIt News increased youth self-efficacy for participating in clinical trials. Both children and adolescents felt more confident in their knowledge about clinical trials after using the website.
  4. DigiKnowIt News helped families feel more familiar with clinical trials. Adolescents and their parents who used the website reported more familiarity with clinical trials than those who did not.
  5. Children, adolescents, and parents had high levels of satisfaction with DigiKnowIt News. Most young people who used the website reported that they learned new information, could use information they learned to make a decision about clinical trials participation, enjoyed using the website, and would tell a friend who wanted more information about clinical trials about the website.

A usability study was also conducted on DigiKnowIt News with children to analyze the website’s ease of use by people. DigiKnowIt News received very positive ratings with respect to the website’s content, format, and usability.

By using DigiKnowIt News, you stop playing the guessing game when it comes to addressing low participation in your research and figuring out whether you are using effective tools for recruitment and participant education. By using the website, you can start feeling more confident that the method you are using to educate youth about your research will actually impact youth outcomes that have been found to be related to increased participation. In addition, you can ensure that you are educating young people about your research in ways that are understandable, usable, and relatable to them, so they may feel more comfortable when deciding whether or not to participate in your research.

If you would like more information on research findings from this study, visit https://digiknowit.com/research-findings/ or contact us. Email us at info@irtinc.us, if you would like to discuss how you can use DigiKnowIt News for your study or to try a free demo of the website.

Harnessing Young People’s Interest in Graphic Illustrations, Stories, and the Web to Teach Them About Research: How DigiKnowIt News’ Comic Books Engage Children and Teens

2025-05-28T14:20:39+00:00May 28, 2025|

If you are trying to recruit and retain an adequate number of participants for your pediatric research study, you probably already know how important it is for children and teens to understand what it means to participate in your research. When young people understand what they may be asked to do as a participant in your study and have realistic expectations for their participation, they will feel more comfortable deciding whether or not to assent, and may be less likely to leave your study early if they are met with any discomfort or challenges.

DigiKnowIt News is a particularly effective tool for educating young people about your research and helping them feel more comfortable when deciding to participate because, unlike common methods of educating potential child or teen participants, it harnesses their imagination, curiosity, interest in stories, eagerness to explore, and fascination with the web as a means of engaging them to learn about your study. Through its highly interactive activities that are strategically designed to capture young people’s attention, DigiKnowIt News gives children and teens a thorough understanding of what it means to be a participant in your research study, what their rights are as a participant, the medical procedures included in your study, and more.

In our most recent blog, we outlined how DigiKnowIt News’ interactive Investigations take advantage of children’s and teen’s curiosity for solving mysteries and exploring new topics to teach them about research and medical procedures commonly used in clinical trials. Digital Comic Books are another technique that DigiKnowIt News uses to pique the interest of children and teens to motivate them to learn about your study.

Most children enjoy an entertaining story, especially when they are transported to new situations and narratives where they will use their imagination to immerse themselves in the story they are being told. That is why thousands of life lessons have been taught to children in the form of books, plays, movies, and television shows. DigiKnowIt News’ Comic Books harness young people’s fascination with storytelling to teach them about research. The interactive Comic Books allow children and teens to choose a character to follow through adventures experienced while participating in a clinical trial. Like traditional comic books, DigiKnowIt News’ digital Comic Books contain storylines that are meant to entertain and teach young people. As each story unfolds, young people may feel the thrill, nerves, excitement, or uncertainty of participating in a clinical trial along with their character, which can prepare them for the different feelings they may experience if they choose to participate in your study. Plus, these activities are designed to hold their attention, so they are more likely to retain the information they are learning from the story which will help them make a decision about whether or not to assent to participate in your study.

Each frame within each Comic Book allows young people to listen to the story while reading along, as different characters chat and explore topics such as research participation, discuss participant rights, and weigh the benefits and costs related to participating. For example, The Chronicles of the Clinical Trial is a four-part Comic Book that allows children and teens to follow their character through the entire lifecycle of participating in a clinical trial. They watch as their character is introduced to a study by a doctor; discusses with their parents both the good and not-so good things about participating in the trial; asks a researcher questions about the study; signs the assent form; completes research tasks; and finishes the study.

DigiKnowIt News also contains Comic Books that allow young people to follow along as their character takes part in medical procedures as part of a clinical trial. As their character calms their feelings of nervousness when receiving a blood draw or an MRI scan, children and teens see what participating in a medical procedure may be like and more importantly, they learn strategies for handling discomfort or fear. This experience can help them feel more prepared to decide whether or not to participate in your study, especially if the study includes medical procedures. These Comic Books are optional for researchers to include in their custom DigiKnowIt News website, so you can choose to include the Comic Books that will be most helpful to your potential participants, based upon the medical procedures your clinical trial does or does not include.

To make these activities even more intriguing to young people than traditional Comic Books, DigiKnowIt News’ Comic Books are web-based and interactive. Young people today are constantly interacting with digital media and modern technology, so DigiKnowIt News was designed to immerse children and teens in an interactive, web-based environment that they are already comfortable and familiar with to learn about your study. Since most young people are used to and enjoy interacting with computers, tablets, and mobile phones on a daily basis, web-based tools like DigiKnowIt News may feel like a more familiar and entertaining way to learn about research than simply reading brochures or other paper documents, viewing presentations, or having conversations with researchers. DigiKnowIt News’ Comic Books not only interest young people in fun narratives, but also give young people opportunities to interact with different elements on the screen of a computer, tablet, or mobile device. Young people can click on different images in the digital Comic Books to dive deeper into the story and explore the topic, or just simply entertain themselves. The Comic Books also contain colorful and developmentally-appropriate illustrations and graphics that are meant to “catch the eye” of children and teens.

DigiKnowIt News’ Comic Books were strategically designed to be optimally effective at helping researchers enhance their recruitment and informed assenting process for their research. By educating children and teens about your study using DigiKnowIt News, you can feel confident that your potential participants are sufficiently engaged to learn and retain information about your study, so they may be more likely to decide to participate and be less likely to leave your study prematurely, once participating.

To explore one of DigiKnowIt News’ interactive, digital Comic Books for yourself for free, visit http://digiknowit.com/free-version/.

Applying Young People’s Imagination and Curiosity About Solving Mysteries to Teaching Them About Clinical Trials: How DigiKnowIt News’ Investigations Engage Children and Teens

2025-04-30T15:00:42+00:00April 30, 2025|

Typical methods of participant recruitment in clinical trials can be dull and off-putting to children and teens. For example, reading documents with information about your study and participating in long informed assent meetings can leave young people feeling even more confused and overwhelmed about deciding whether or not to participate in your study, as was described in an earlier blog. Contrary to typical methods of participant recruitment, DigiKnowIt News uses a unique approach to capturing the curiosity and interest of young people to motivate them to learn more about your study. Its customization capabilities allow for your DigiKnowIt News website to reflect the goals and methods of your specific study while also piquing the interest of potential participants. By engaging young people with information about clinical trials in an engaging and understandable way, DigiKnowIt News may help young people to feel more comfortable when making a decision about whether or not to participate in your study, which should ultimately improve your participation rates.

One type of online activity used in the DigiKnowIt News website to engage and excite youth is interactive Investigations, where children and adolescents can explore a variety of different topics that are relevant to participation in your clinical trial in developmentally relevant ways.

How do DigiKnowIt News’ Investigations engage children and teens with information about clinical trials?

Children have very different interests than adolescents when they interact with websites. For example, children like digital comic books, animations, and graphic illustrations, whereas teens like videos, more text-based interactive elements, and informational graphics such as charts and graphs. For these reasons, DigiKnowIt News’ Investigations for children are delivered in a highly interactive, game-like format, while the Investigations for teens are briefer and contain more complex topics, videos, definitions, and facts. The website was designed so that researchers can customize their version of the DigiKnowIt News website to reflect the recruitment needs of their clinical trial, and so that it will be interesting and developmentally appropriate for children (aged 8 to 12 years) or for adolescents (aged 13 to 18 years).

Because of these developmental differences in learning preferences, each Investigation for children includes an assignment to gather information about a clinical trials-related topic by having them become an “investigative journalist.” These Investigations involve completing several different activities such as role-playing interviewing a researcher, hearing testimonies from other children who have participated in a clinical trial, completing an interactive activity, or watching animated videos. Their goal in gathering information through these activities is to write a fake blog that they believe would help other children when they are deciding whether to participate in a clinical trial. Children earn points for completing activities to motivate them to complete the Investigations.

In contrast, each Investigation for teens includes six different types of activities, and teens can choose to interact with one or more of the activities. One example of an activity is the “DigiKnowThat” section, where teens click on attributes within infographics to reveal interesting facts about clinical trials as well as learn answers to frequently asked questions about clinical trials. A second type of activity included in the Investigations is called “DigiTube” where teens learn about clinical trials from entertaining videos. “DigiTube” was created because many teens enjoy watching videos on YouTube to entertain themselves or learn more about a specific topic. A third type of activity is the “DigiSearch” which is designed to look like a search engine that teens can interact with to learn definitions for commonly used terms in clinical trials, types of procedures used in clinical trials, and roles of people involved in clinical trials. During each activity in the Investigations, teens can choose to click an icon that will save information from the activity to their digital notepad, so they can refer later to information they learned from the activity.

In addition to the unique activities in the website that are designed for different age groups, there are also some features that are universal across age groups. For example, both the child and adolescent versions of DigiKnowIt News include videotaped scenarios, called “Human Interest Stories,” with examples of real-life situations that can happen in clinical trials. The scenarios that are included in the website had been suggested by youth during the development of DigiKnowIt News. Examples of some scenarios include having a conversation with a parent to weigh the benefits and risks of participating in a trial, asking questions to a nurse before getting an IV as part of a clinical trial, and asking a researcher questions as they review assent forms together. While watching each scenario, children and teens are presented with opportunities to choose what happens next in the scenario, which allows them to practice their decision-making skills about potential research participation in the future.

What do children and teens learn from DigiKnowIt News’ Investigations?

One barrier to recruiting children and teens for clinical trials is that they do not understand what it means to participate in a clinical trial. Therefore, there are four Investigations that focus on essential information related to participating in a clinical trial that are included as options in both the child and teen versions:

  1. The Mystery of the Clinical Trials/Clinical Trials 101: When presented with the opportunity to participate in a trial, many young people do not understand what a clinical trial is or why they are important. In this Investigation, youth learn facts, definitions, and concepts related to participating in a clinical trial, and why it is important to participate in them. The child version of this Investigation is called “The Mystery of the Clinical Trials,” and the teen version is called “Clinical Trials 101.”
  2. Know Your Rights: Some young people may be hesitant to participate in a clinical trial if they think that they might become unsafe or uncomfortable during a trial and have no way out. In this Investigation, youth learn about their rights and safety when participating in a clinical trial, and what is informed consent and assent. There are two separate versions of this Investigation for children and teens.
  3. Good and Not So Good/Benefits and Costs: Some young people may choose to not participate in a trial if they think they will not benefit from their participation or if they are not sure what sacrifices they will have to make to participate. In this Investigation, youth learn about the potential benefits and costs of participating in a clinical trial. The child version of this Investigation is called “Good and Not So Good,” and the teen version is called “Benefits and Costs.”
  4. Who to Talk to/Communication is Key: Young people may feel hesitant to participate in a trial if they think that they will be alone in their experience or will have no help to navigate their confusion or challenges during their participation. In this Investigation, youth learn the different roles of people involved in conducting clinical trials, and how to communicate about the trial with parents, researchers, and medical professionals. The child version of this Investigation is called “Who to Talk to,” and the teen version is called “Communication is Key.”

DigiKnowIt News also contains several other Investigations that researchers can include in their custom website to educate potential participants about specific medical procedures that are commonly used in clinical trials:

  1. Needles: When deciding whether to participate in a clinical trial that includes receiving IVs or injections as part of participation, children and teens may feel afraid that the procedures may be painful or not understand what the procedure entails. In this Investigation, youth learn about needle procedures such as blood draws. There are two separate versions of this Investigation for children and teens.
  2. Scans: Participating in a trial that includes getting an MRI or CT scan may be nerve wracking for young people who have fears of small spaces or loud noises or for young people who have not received a scan before. In this Investigation, youth learn about scans such as MRIs. There are two separate versions of this Investigation for children and teens.
  3. Sedation and Anesthesia: Young people may feel hesitant to participate in a trial that includes receiving sedation or anesthesia because some children and teens may feel uncomfortable with the idea of being unconscious or experiencing symptoms when recovering from sedation or anesthesia. In this Investigation, youth learn about different types of sedation and anesthesia such as local and general anesthesia and sedative and anti-anxiety medication. This Investigation is only available in a version for teens.
  4. Organ Testing: Some young people may feel nervous about participating in a trial that includes receiving organ testing procedures because these procedures may be unfamiliar or uncomfortable for them. In this Investigation, youth learn about different tests of organ functioning such as spirometry, pulse oximetry, electrocardiogram (ECG), urinalysis, and biopsies. This Investigation is only available in a version for teens.
  5. Behavioral Treatments: Behavioral treatments may also be unfamiliar to young people, which may make them feel hesitant to participate in a clinical trial that includes receiving behavioral treatments. In this Investigation, youth learn about clinical trials that use interventions that do not include drugs or medicines. These trials examine how behavioral treatments improve health behaviors (e.g., sleep, nutrition, exercise). This Investigation is only available in a version for teens.

These Investigations target youth fears about certain medical procedures that may be unfamiliar to them. By knowing what to expect from participating in specific medical procedures, children and adolescents may not feel as apprehensive about participating in a clinical trial that involves medical procedures.

DigiKnowIt News’ Investigations are highly appealing to active learners who learn best from visual, auditory, kinesthetic, and reading/writing activities. The Investigations contribute to DigiKnowIt News’ ability to appeal to and engage a variety of youth, so each research study can recruit their target participant population.

To view a free demo of DigiKnowIt News’ Investigations and explore how DigiKnowIt News may be useful for your study, complete the form at https://digiknowit.com/free-version/.

How Watching “Spotlight” Videos in DigiKnowIt News Can Help Children Feel More Comfortable About the Decision to Participate in Your Research Study

2025-03-31T18:03:03+00:00March 31, 2025|

Most materials used to educate children and adolescents about clinical trials do not account for their developmental abilities and interests. When children receive information about your clinical trial that is neither interesting nor understandable to them, they may feel confused or apprehensive about participating in your study, which could negatively impact your participation rates.

DigiKnowIt News includes various types of educational experiences that are designed to appeal to children with different learning styles, developmental abilities, and interests, so they can choose how they want to learn about research and your study. By communicating with children about research in unique, developmentally-appropriate ways, DigiKnowIt News helps children feel more confident and prepared to decide about whether to participate in your study.

For example, DigiKnowIt News is one of the first websites about clinical trials designed specifically for children and it is also one of the only websites we have located that contains a library of videotaped interviews with young people who have been a participant in a clinical trial. This educational strategy accounts for the fact that children and adults seek out the advice of peers when making a wide range of life decisions. In fact, children have reported that they would prefer to hear from peers, rather than adults, about their experiences participating in a clinical trial.1

The DigiKnowIt News team applied these basic research findings to designing the building blocks of the website by creating a series of videotaped interviews, called “Spotlights,” with children and adolescents about their experiences being a participant in a clinical trial.  In this way, children could hear from their peers, who may serve as role models regarding participation in a clinical trial. Some potential participants may view similar-aged peers as more trustworthy sources of information about clinical trials than other sources who might have not been in a clinical trial before. In addition, the Spotlights include a diverse group of youth including children and adolescents, boys and girls, and children who vary in terms of their race and ethnicity, so that youth can personally relate to the people in the videos.

Youth discuss a variety of topics in the videos including why they decided to participate in a clinical trial, how they knew the clinical trial would be safe, what kinds of questions they suggest asking before participating in a trial, how they stayed calm whenever they became nervous during their participation, and more. These perspectives from young people go beyond just educating youth on basic information about clinical trials to empowering youth and helping them feel confident when making a decision about whether or not to assent to participate. During the development of DigiKnowIt News, youth who had previously participated in a clinical trial reported on what information they would have liked to have known prior to participating, so that the DigiKnowIt News team could incorporate as much beneficial information for youth as possible into the questions and answers in the videotaped interviews.

A main goal in the development of DigiKnowIt News was to create an informational resource that would appeal to a wide array of youth with different learning styles and developmental abilities, so that DigiKnowIt News would be effective for use with a diverse group of children and adolescents.

If you would like to start using DigiKnowIt News to educate children about research, so they may feel more comfortable and confident when making the decision to participate in your study, click here to get started.

  1. 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

How DigiKnowIt News Can Help Increase Participation and Lower Attrition Rates in Your Study

2025-03-31T18:03:22+00:00February 5, 2025|

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.

  1. 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
  2. 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
  3. 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.
  4. 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.

Motivate and Involve Young People in Your Research with DigiKnowIt News: Help Them Know What Questions to Ask

2025-03-31T18:04:23+00:00November 21, 2024|

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:

  1. are afraid of the risks involved with participation and
  2. 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:

  1. what clinical trials are,
  2. what they may expect from participation in a clinical trial and/or in your study,
  3. benefits and risks associated with participation in a clinical trial and/or in your study,
  4. their rights as a participant,
  5. the importance of asking questions before and during research participation,
  6. what types of questions might be helpful to ask about your study, and
  7. 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.

  1. Lambert, V., & Glacken, M. (2011). Engaging with children in research: Theoretical and practical implications of negotiating informed consent/assent. Nursing ethics18(6), 781–801. https://doi.org/10.1177/0969733011401122
  2. 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 : JERHRE12(2), 87–96. https://doi.org/10.1177/1556264617696921
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