Share
On a warm morning in early August, the sun was sparkling on the surface of Fish Lake, about an hour north of Chicago. Beside the lake, the shady lawn of Camp Independence was dotted with campers and camp counselors, hanging out, chatting, and laughing. Two people were playing chess. One was weaving a friendship bracelet. Soon, a young woman named Esther Yun stood up and addressed the group, saying their morning event was about to begin. Counselors brought out some tables from the club house nearby, then helped campers maneuver their wheelchairs over to the tables.
Camp Independence is aptly named. Founded in 1989, the camp offers weeklong sessions designed to foster independence in children and adults with spina bifida, a condition where the spinal cord doesn’t develop properly during pregnancy. The camp, which is hosted by the YMCA and features typical summer-camp activities, also includes a short, daily program developed by the Chicago Healthy Adolescent Transition Study Lab, or CHATS Lab, at Loyola University Chicago.
Professor Grayson Holmbeck, a professor of clinical psychology at Loyola, is the director of the lab. Breana Bryant (MA ’24, PhD ’28) is the project manager for the work being done at camp. And then “interventionists”—mostly Loyola doctoral students, undergrads and post baccalaureates—run research sessions (called interventions) each day at camp.
These interventions are meant to provide the campers who elect to participate with useful information and skills that they can use in their life outside of camp. The sessions also provide Holmbeck and his lab with data that they use in their work throughout the year. The end goal of their research is to provide people with spina bifida the tools they need to live a full, dignified, and independent life.
That morning at camp, Yun, a research assistant at the lab, hit “record” on her laptop and the session began. It was the last day of their intervention. “The end of camp is coming so today’s topic is appropriate: preparing for the future,” she says. She passed out packets and prompted campers to write answers to questions like, “What steps can you take to address things that are difficult?” and “Do you have someone at home you can talk to?” When she asked campers to share, one responded that she could talk with her best friend.
“Thank God for best friends,” Yun says.
“I talk to her about the same things every day,” the camper responds.
“That’s what best friends are for,” says Yun.
Yun, who received her bachelor’s degree from Washington State University, says her previous lab experience was in chronic pain and pediatric populations. After graduating, she was referred to Holmbeck’s CHATS lab because of her research interests. The idea of working at Camp Independence appealed to her. “I was just blown away because I was like, ‘This is such an amazing resource for people,’” she says.
At the beginning of the week, Yun guided campers as they set independence-related goals and then checked in with them as they worked toward these goals throughout camp. In the intervention that day, one young man said that his goal was to be more friendly, active, and outgoing, “rather than being in the house all day.” Yun asked what he liked doing outside.
“I like going to the park,” he says.
“Going to the park is a good start,” she says.
They discussed some other goals, like preparing for job interviews, and the progress they’d made.
A third camper said his goal had been to walk around camp more.
Yun mentions that she had seen him walking frequently. “You’re crushing it!” she says and gives him a high five.
Back in the early ’80s when he began his PhD in clinical psychology at Virginia Commonwealth University, Holmbeck hadn’t heard of spina bifida. It wasn’t until his internship at Lurie Children’s Hospital of Chicago that he encountered the condition. Holmbeck saw that spina bifida represented a connection between clinical and developmental psychology.
“I was really interested in adolescence, and one of the things I noticed when I was doing my rotation in the spina bifida clinic was that these kids do really well during their childhood, and then everything becomes more challenging during adolescence,” he says. He explained that this is partly due to a natural teenage desire for independence clashing with the serious medical regimen that people with the condition often need to follow.
He was “very interested in that sort of interface between normal development during adolescence and the demands of having a chronic health condition,” he adds.
During his rotation at the spina bifida clinic, Holmbeck connected with Dr. David McLone, a neurosurgeon, who started the camp (previously called Camp Ability) in 1989. Holmbeck came on several years later and has now been involved with the camp for almost 25 years.
In the camp’s early years, he said they were “informally hanging out with the kids” but then he and his graduate students developed an intervention based on his research, designed to address some core psychological issues that come along with the diagnosis, such as executive functioning, social functioning, and independence in the social and medical domains. However, they made sure the summer camp environment was still present in the intervention. The goal “is increasing the independence of these kids but within a fun context,” he says.
And the results seem positive. In a 2013 article in Journal of Pediatric Psychology, Dr. Holmbeck explained that “most campers benefitted from the intervention” that the CHATS lab provided at camp. And the CHATS lab website says that “One month after the end of camp, parents and campers reported that the camper improved on their self-care goals, social goals, management of medical tasks, and general independence.”
Holmbeck sees further real-world possibilities, too. “When I started this, there was almost no research on this population,” he says. People with spina bifida have “a certain profile that sets them up for problems in school. Once we identify that in research, we can then inform teachers and parents about this, so that they can actually provide a good school experience for them.” The same goes for mental health concerns and other struggles. In other words, the more caregivers, teachers, and others are aware of the care required, the more likely it is that it will be provided.
Back at camp, Yun was wrapping up the final intervention. She asked for any last goals that campers would work on once they left the shady lawns and open fields of camp.
“I wrote ‘Make more friends,’ but I want to hang out with you guys more often,” says a camper.
Then Yun requested feedback on the week. Some mentioned that they wanted more questions, more interaction between the researcher and the group. Another said that they appreciated going over “job stuff” like resumes. “We know it, but it’s good to see it again,” he says.
Finally, Yun asked if this week of interventions had been helpful.
“Keep doing what you’re doing,” says one camper.
“You took the words right out of my mouth,” says another.
With the intervention complete, it was time for lunch and then swimming, where campers would bask in the summer sunlight on the lake for the last time before heading back to their lives at home.
