10 expert tips for recruiting and retaining children and families in research

Investigators increasingly see the value in engaging children and their families in research to ensure that research discoveries improve health for all. As explained in a recent University at Buffalo Clinical and Translational Science Institute (CTSI) feature, involving children in research entails educational initiatives, targeted recruitment methods, and consideration of how children think about research and healthcare. 

However, investigators may have questions. What are the most effective recruitment methods? How should research be discussed with family members? And how can investigators best ensure retention? When it comes to these questions and others, UB faculty members have expert tips and guidance to offer.

Central to these tips, according to CTSI Recruitment and Special Populations Core Director Teresa Quattrin, MD, UB Distinguished Professor, Department of Pediatrics, Associate Dean for Research Integration, Jacobs School of Medicine and Biomedical Sciences, is having a “special respect” for parents, and for the importance of their roles as family decision-makers. “You must be in the frame of mind that you are serving these families and not the other way around. The respect must also go to the child.” Quattrin believes that “[researchers] who act in this manner are able to recruit effectively and retain people in research studies.”

EFFECTIVE RECRUITMENT

• Start simply. Katelyn Carr, PhD, Postdoctoral Fellow, Department of Pediatrics, Jacobs School, recommends starting with some simple recruitment options. “Start with the easiest outreach your lab can do, whether that is through social media or posting flyers in community places where kids are gathered,” Carr says. “Once you have recruited some families, asking parents how they usually hear about research studies may lead to whole new avenues for you.” Social media is often an effective way to reach local families, and helpful resources for social media use can be found in the CTSI’s Recruitment Resources Toolkit.
• Consider in-person recruitment locations. Researchers say in-person recruitment can be just as impactful as recruiting on social media. “For 18- to 20-year-olds, we have had success at UB’s student union,” says CTSI Community Engagement Core Director Laurene M. Tumiel-Berhalter, PhD, Director of Community Translational Research, Department of Family Medicine, Jacobs School. “For younger children, recruiting through pediatrician offices has proven successful.”
• Community partnerships can help. Tumiel-Berhalter credits working with community partners for helping studies centered on children and families reach recruitment goals. “Reaching out to those who work with the age groups you are seeking can be instrumental in conducting research with these communities,” she says.

INTERACTING WITH FAMILIES

• Be an active listener. Tumiel-Berhalter believes that listening matters: “Getting feedback from parents and youth about studies — as partners — can be instrumental in enhancing the success of the study.”
• Look closely at language. Researchers agree that transparency is crucial. “Some studies carry no risk or very minimal risk, but others do carry risk,” Quattrin says. “Attention must be paid to the way things are described. Do not sugarcoat it. Have a sense of awareness about what you are asking. Would you ask your own kids to do it? Would you do it yourself?”
• Show real interest in the participants. CTSI Special Populations Task Leader Renee Cadzow, PhD, Research Associate Professor, Volunteer, Department of Pediatrics, Jacobs School, and Associate Professor and Associate Director/Chair, Center for Doctoral Studies and Research, D'Youville University, advises that families meet with the same staff at each visit, and suggests that staff remember details about the children that they have heard during previous visits — favorite animal, color, sport, etc. She also recommends starting conversations with the children, not just the parents. “Direct questions directly to the children and encourage them to respond. It makes them feel more like they are part of the process.”

ENSURING RETENTION

• Be flexible with scheduling. Carr has found that working around parents’ schedules is essential. “If you can get a parent to tell you their schedule or their concerns about the time commitment, you can work with them.” She recommends text, email, and phone call reminders about appointments; aiming to start visits at the exact scheduled time; and informing participants about visit duration well ahead of time.
• Recognize how to increase engagement. Jamie M. Ostrov, PhD, Professor and Area Head, Director of Clinical Training, and Director, Social Development Laboratory, Department of Psychology, College of Arts and Sciences, says he and his team constantly evaluate and adjust procedures to improve the experience. “If the sessions are too long and complex you risk participant burden and not only the strong possibility that the participants will not want to return, but also risk the validity of your measures. We also work hard to keep our projects fun and engaging.”
• Provide incentives at all visits. Cadzow believes providing incentives — for example, gift cards — to both the children and to the parents/guardians who drive them is vital. And Carr has found that offering some type of tangible recognition of their work on the study is appreciated. “Across longer follow-up periods, we have had positive feedback on sending the children birthday or holiday cards with stickers or temporary tattoos. Parents have let us know how much their children enjoy things like that.”
• Help children understand the connection between research and making the world a better, healthier place. Cadzow has found that kids who participate in research are most engaged when they see their participation as helping others. “When you can connect the purpose of the research to the greater good, it is really valuable to them.”

For more on this topic, see a recent CTSI feature titled “Engaging children in research, from education to recruitment.”