Community feedback: Helping parents learn new skills
The PriCARE project needed to understand why people were dropping out of their parenting skills classes.
Being a parent requires learning a whole new set of skills. Sometimes, you can learn those skills by looking up the instructions, like learning how to build a crib or how to secure a car seat—while some skills can only be learned through experience, like figuring out how to talk on the phone while pushing a stroller and opening a juice box all at the same time. But maybe the hardest skills to learn are the personal skills, as a new parent faces the joys and frustrations of helping their child grow and develop.
The PriCARE study (short for "Child Adult Relationship Enhancement in Pediatric Primary Care"), led by Samantha Schilling, a pediatrician at the UNC School of Medicine, is trying to help parents navigate some of these challenges. The research team has developed a series of six evidence-based workshops where parents learn things like why children behave the way they do, how to encourage cooperation, and the impact of stress on children and caregivers—as well as practical skills that can foster a positive parent-child relationship.
Previous research has shown evidence that PriCARE can both improve child behavior and reduce parental stress. But the study's organizers have also been facing a challenge: many of the parents that signed up for the classes were dropping out partway through the program.
To figure out why, the PriCARE team decided to conduct a community feedback session, facilitated by the Patient and Community Engagement in Research (PaCER) program at the North Carolina Translational and Clinical Sciences (NC TraCS) Institute. These sessions offer researchers an opportunity to hear from patients, community members, clinicians, and others connected to their work to ask questions and gather feedback on anything they might be curious about. For the PriCARE team, the goal was to find some of the parents who dropped out of the program—and solve the mystery of why they disappeared.
"We felt that this community feedback session that NC TraCS offered was something that would really benefit us," says Mark Patricio-Castillo, a research specialist on the PriCARE study. "Because we could recruit previous participants and speak to them, see what their perspectives are, understand where they come from—and then, see if there's anything we might be able to do to improve our study."
"When a researcher requests NC TraCS' help to facilitate a community feedback session, we'll offer guidance on preparing for the session and create a plan for how to gather feedback," says Simone Frank, senior project manager at PaCER. "Our team will help develop discussion prompts, facilitate the actual session, and take notes on what participants say. And we'll provide a comprehensive follow-up report after the session. These sessions can focus on a variety of communities: patient groups, caregivers, clinicians—and they can go a long way toward helping a research team ensure their work lines up with community needs."
"Community feedback sessions can be a great way to ask people about their motivations and concerns around participating in a study. You can also get really nitty-gritty in these sessions and ask for feedback on specific recruitment materials or retention strategies," Frank adds. "And it's never too early to have these conversations—in fact, feedback sessions can help teams proactively identify and address potential challenges to recruitment and retention before a study even starts."
To recruit for this feedback session, the PriCARE team reached out to parents who had dropped out of the program after attending the first two PriCARE sessions and asked them if they'd be willing to provide some feedback. A handful of them were, and they offered a variety of insights into the study's participant experience.
...[feedback sessions] can go a long way toward helping a research team ensure their work lines up with community needs.
Some specific aspects of the program came up in these sessions, such as the video recording homework. After attending the second session, parents in the PriCARE program were asked to upload a video of them playing with their child. Most of the participants in the feedback session reported disliking this aspect of the program, saying it was complicated, or that they didn't understand the point, or even that they felt judged. As a result, the team has now moved the video recording homework from the second session to the third session, giving participants more time to get to know their class facilitator before the assignment.
That's not to say that all the ideas that come up in these feedback sessions have easy solutions. For example, while one participant said it would be good to have in-person (rather than virtual) classes, another participant said they'd like the option to keep their camera off during class. In this case, switching to in-person meetings could help one person feel better, but potentially make another person less likely to participate. Making this kind of switch could also change some aspects of the study itself—Patricio-Castillo says that the study serves families all across North Carolina and, thus, will need to stay virtual to continue to reach this wide geographic area.
In addition, some participants said that the classes felt redundant because everyone in the class would go around and practice the skills they were learning—or that they had a hard time relating with other parents in the group. But the PriCARE team has also heard from past participants who have said that the repeated, hands-on skill practice was instrumental in learning the new parenting skills, or who listed the camaraderie and shared experiences with other parents in the group as a major benefit of participating. So, while the team welcomed this feedback, they're still figuring out how best to incorporate it into the program, knowing that it conflicts with other parent experiences.
But this kind of feedback can always help researchers better understand how participants engage with their studies—allowing them to improve future studies, brainstorm new ideas, and double-down on the aspects of their study that already work well. The PriCARE team is making a conscious effort to set expectations at the beginning of the program, for instance, laying out the fact that the workshop has six 80-minute sessions that build on each other week by week, so participants can learn many helpful skills if they stick with it.
Because [feedback sessions] are administered by a third-party, NC TraCS, I feel like that allows the participants to speak more openly about the process of the study.
Patricio-Castillo says he's also thinking about how to communicate more effectively with participants and letting them know that they can reach out with any questions they might have. And he says he'd love to get testimonials from parents who've completed the program, either recorded or in person, to help show participants how other parents have benefited from putting in the effort.
Having NC TraCS coordinate these community feedback sessions created an environment where honesty was encouraged, Patricio Castillo notes. "Because they are administered by a third-party, NC TraCS, I feel like that allows the participants to speak more openly about the process of the study," he says.
"Out of all the community feedback sessions I've been a part of, this one felt pretty unique—it's not often that you hear about research teams following up with participants who didn't complete a study," Frank says. "The session provided a lot of food for thought and generated different ideas that the research team could work with."
And improving the study isn't just about boosting the team's recruiting numbers or making the process more comfortable for study participants—it's about making sure the science is doing what it sets out to do.
"Ultimately, the goal of a research study is to help people advance public health, advance science," Patricio-Castillo says. "We're trying to make sure these sessions are helpful by making sure study participants are being heard, and that they're being served in all the ways the study says that they are."
