Engaging children in research key to improving health for all

One of the goals of the UB Clinical and Translational Science Institute (CTSI) is to engage underrepresented populations in research. Involving everyone in clinical studies is a key method for ensuring research discoveries improve health for all.

Children are a group that is often forgotten when it comes to involvement in research, says Teresa Quattrin, UB Distinguished Professor, associate dean for research integration in the Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, and CTSI recruitment and special populations core director.

“Children are a vulnerable population and an underrepresented population,” Quattrin believes. “It is essential that we involve them in studies.”

Involving children in research entails educational initiatives (like the CTSI’s “Sofia Learns About Research” project), targeted recruitment methods and consideration of how children think about research and health care.  

Renee Cadzow, research associate professor and volunteer in the Department of Pediatrics, and CTSI special populations task leader, explains that young people must be represented in research to ensure the efficacy of new interventions and treatments. In addition, involvement can also spur an interest in personal health care. Inspiring children to make connections between research and their own health and well-being builds trust and interest.

“When children and families can participate in research, they may be more likely in general to participate in the health care sector because they feel like it’s being responsive to their needs and the issues that affect them specifically,” says Cadzow, who is also associate professor and associate director/chair, Center for Doctoral Studies and Research, D'Youville University.

“It is important to really engage children and explain because the experiences are going to impact the way they will feel in the future,” Quattrin adds. “So, if they have a bad experience with research, if they were forced into research, if it was not explained well, then there could be trauma.”

Jamie M. Ostrov, professor and clinical area head, director of clinical training, and director of the Social Development Laboratory in the Department of Psychology, College of Arts and Sciences, and his team utilize a consistent approach for their work with 3-to-5-year-olds.

“We primarily recruit through participating early childhood centers and universal pre-kindergarten programs affiliated with local school districts,” Ostrov explains. “For one of our current projects, we are supplementing our school-based recruitment with recruiting directly from the community and have used social media and physical postings at locations that children frequent — museums, recreation centers, public libraries, pediatrician offices.”

Katelyn Carr, a postdoctoral fellow in the Department of Pediatrics, recently finished coordinating a National Institutes of Health grant that recruited and retained about 300 children over two years. She found Facebook to be an essential recruitment source, since many parents use Facebook to track their children's school information. Carr says the lab’s Facebook page has allowed them to connect with both demographic populations and geographic populations.

Education is another way to facilitate the recruitment process. To that end, the CTSI developed “Sofia Learns About Research,” a children’s activity and coloring book that presents research in a non-threatening way. A playable video game version of the book can be experienced at downtown Buffalo’s Explore & More ­— The Ralph C. Wilson, Jr. Children's Museum.

“We’re still collecting data, but our early evidence shows that the book is effective at improving kids’ knowledge of research and likelihood that they will participate in research in the future,” says Andy Strohmeier, CTSI integrating special populations coordinator. “There’s a hidden benefit we are seeing, too: Kids are interested in becoming scientists and researchers themselves after reading the book. This was particularly evident during a reading we did last summer, where teens were discussing the various problems of the world and how we can work together to solve them.”

From sharing the book in classrooms to working with developers and museum staff on the game version, the CTSI team has found that children made personal connections with the concept of research.

“During one ‘Sofia’ book reading, the children were saying, ‘Oh, my cousin has asthma, and they have to do this,’ or, ‘When my mom got sick with this, she had to take medicine,’” Cadzow says. “They start to connect the dots to the people in their lives. And if you can help them follow that path and see how research helped to inform the treatment that they or a family member received, it makes the idea of participation in research even more interesting for them.”