St. Kate’s heads research for Special Olympics Minnesota
Imagine feeling depressed, anxious or even suicidal and not having the ability to clearly articulate those feelings to others. That’s the struggle many people with intellectual disabilities face, says Stacy Coleman Symons, St. Catherine University assistant professor of psychology.
“The literature suggests that there is a high degree of comorbidity with this population,” Symons says. “On top of their cognitive disabilities, there is a lot of undiagnosed and untreated depression and anxiety, and often they have limited ability to communicate how that is making them feel.”
There is currently no screening tool to help gauge the emotional state of this group of people. But there will be soon — thanks to the efforts of Symons and her colleagues, including Lisa Spofford ’11 and Woodbury-based counseling psychologist Robin McLeod.
Spofford is the project’s lynchpin. She first got involved when she interviewed McLeod as part of an assignment she was completing for one of Symons’ undergraduate courses. During their conversation, McLeod told Spofford about a project she’d been asked to take on — one that she didn’t have time to complete on her own.
Special Olympics Minnesota had contacted McLeod to develop a tool that could monitor their athletes’ psychological wellbeing. “The Healthy Athletes Initiative already offered free vision and dental screenings at Special Olympic events,” Spofford explains. “But they wanted to make sure that athletes took care of their emotional health as well.”
Special Olympics, the national organization, launched Healthy Athletes in 1997. The initiative has since provided more than a million free health screenings and health information to athletes at local, regional and world games.
When Spofford told Symons about the project, her professor was more than happy to sign on.
“I was looking for a research project, and I am committed to the principle of social justice. ” Symons says. “So my reaction was, ‘I think this is tremendous. Let’s go.'”
Screening psychological health
But developing such a screening tool turned out to not be more complicated than the duo anticipated.
“People with intellectual disabilities often have a hard time explaining their feelings — or even understanding that feeling depressed or anxious doesn’t have to be a constant factor in their life,” Symons says. “Family members also have a hard time accepting that their loved ones may be struggling emotionally.
“A lot of the time, signs of depression and anxiety are brushed off in people with intellectual disabilities,” says Spofford, who majored in psychology and sociology at St. Kate’s and is now completing a master’s in special education at the University of Minnesota. “It’s either seen as part of their disability or parents and other caretakers just don’t see or acknowledge it. And this population doesn’t always have the verbal skills needed to express what they are feeling.”
Neither can they successfully complete a traditional survey to measure their psychological health, she adds.
To address this concern, Spofford, the study’s primary investigator, set up a series of focus groups of Special Olympians — some are their own guardians; others live with caretakers.
The researchers quickly discovered that the best way for these Special Olympians to understand concepts that involved feelings and emotions was to create visual representations of those emotions. So they worked with a local artist to create drawings of faces that expressed different feelings, like “sad,” “anxious” or “happy.”
“At first, we started with photos of people using their faces to show emotions,” says Spofford. “But many participants thought those faces were too scary. One of our athletes even had to leave the room because the photographed faces made her so upset.”
In late October, the research team met with focus group participants again, using the “emotion drawings.”
The researchers, however, found the responses of their re-designed tool troubling. “Two out of our 10 athletes expressed suicidal ideations,” Spofford says. “Another athlete exhibited behaviors that indicated depression.”
Extending a helping hand
Although alarming, the findings were not entirely unexpected, Spofford offers. “Past research has shown that about 30 percent of people with cognitive disabilities suffer from depression or anxiety. Our participants are in line with the national average.”
After the survey was completed, the three athletes who indicated signs of serious depression met with Symons and McLeod — both clinical and counseling psychologists.
“They provided counseling on the spot,” Spofford explains. “We also gave the participants’ caretakers a list of psychologists in the metro are who are willing to see clients from the Special Olympics.”
However, some study participants have a difficult time grasping the concept of seeking therapy for emotional problems.
“It’s very hard for us to simply say, ‘We’re here to help you with your feelings,’” Spofford says. “For a lot of them, it’s just how they feel every day, and they think they can’t really do anything about it. At the meeting, we tried to explain that talking to Robin or Stacy was like going to a ‘feelings doctor.’”
Now that the survey tool is nearing completion, Symons, McLeod and Spofford are excited about their project’s future. After another revision, the next big step will be surveying athletes at Special Olympics events in summer 2012. St. Kate’s psychology major Stephanie Burrows ’12 has also joined the research team.
“We will end up with a screening instrument that will be useful for Special Olympics all over the United States [and] we will provide relevant feedback to the academic literature,” Symons says. "Right now, you don’t see anything else in the literature that looks like this. Our approach has been welcoming and inclusive to participants of all intellectual abilities. We are fortunate to be working on a project where the subjects themselves have been true collaborators.”
The researchers have shared their ongoing study at the American Association of Intellectual and Developmental Disabilities 2011 conference, and they are planning to present at two more events next spring — the Minnesota Psychological Association and International Association for the Scientific Study of Developmental Disabilities Conferences.