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 UBNow story, involving children in research entails educational initiatives, targeted recruitment methods and consideration of how children think about research and health care.
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 Teresa Quattrin, UB Distinguished Professor in the Department of Pediatrics, and Recruitment and Special Populations core director at UB’s Clinical and Translational Science Institute, 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 says, adding that researchers who act in this manner “are able to recruit effectively and retain people in research studies.”
- Start simply. Katelyn Carr, postdoctoral fellow, Department of Pediatrics, 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; 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 Laurene M. Tumiel-Berhalter, director of community translational research, Department of Family Medicine, and CTSI Community Engagement core director. “For younger children, recruiting through pediatrician offices has proven successful.”
- Community partnerships can help. Tumiel-Berhalter credits working with community partners to help 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 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 transparency is crucial. “Some studies carry no risk or very minimal risk, but others do carry risk,” Quattrin explains. “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. Renee Cadzow, research associate professor, volunteer, Department of Pediatrics, and CTSI Special Populations task leader, advises that families meet with the same staff at each visit, and suggests 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.”
- 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, professor and area head, director of clinical training, and director, Social Development Laboratory, Department of Psychology, 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 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 take part 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.”