When Karen Fondacaro’s psychotherapy clients experience a debilitating flashback of torture, rape or other trauma they endured, they have specific techniques to cope with those emotional flare ups. If the flashback causes panic, they can do a breathing exercise. If they shift to a disassociated state, losing touch with their bodies or surroundings, they can try a grounding technique that brings them back to their physical world.
Many of Fondacaro’s clients, though, have trouble taking those helpful steps once at home and outside the therapy room. Fondacaro and her clinical team specialize in working with Vermont’s resettled refugees, primarily in the Somali Bantu and Bhutanese communities, whose language barriers and gaps in understanding -- not to mention the normal distractions of daily life -- make it difficult to call upon the lessons they learn in treatment.
“The between-session disparity in mental health services really became clear to us,” says Fondacaro, University of Vermont clinical psychologist and director of its Behavior Therapy and Psychotherapy Center. “We could get around the disparity if we could do something that blasted this language barrier.”
Mobile therapy
She and her fellow clinicians in the Connecting Cultures program, which provides mental health services for trauma survivors, came up with the idea of an image-driven smartphone application. Their interactive mobile tool would guide clients through tasks that help them ride their waves of crisis -- “and almost have a therapist in their pocket during the week,” Fondacaro says.
Connecting Cultures recently received a Small Business Innovation Research grant through the National Institute on Minority Health and Health Disparities to develop the app in partnership with Gametheory, a Burlington-based technology company that focuses on gaming tools, often with a public-service purpose.
Marguerite Dibble, the company’s founder and president, says she embraced the opportunity to not only improve the lives of people struggling in her community but also to harness Fondacaro’s enthusiasm and open-mindedness. The game structure itself provides an ideal distraction mechanism -- as well as a well-studied way to make learning stick, the developer points out.
“There’s a very clear need, which is also motivating,” Dibble says. “There’s a really clear problem to be solved.”
Many in Connecting Cultures are single mothers who suffer from anxiety and depression, relive horrific experiences over and over and confront new atrocities inflicting the loved ones they left behind.
Anne Brassell, a UVM graduate student in the psychological science clinical training program, says she spends hours preparing written handouts with pictures and instructions to send home with clients. In the next session, they’ll tell her they had nightmares but misplaced or couldn’t discern the directions.
“Most of our clients do have smartphones and are pretty proficient at pulling up things when they want to show us pictures or music,” she says.
She has high hopes for the mobile app, she says. “It’ll be a wonderful way to extend our therapy to the home and really will help our clients when they’re stressed throughout the week.”
Beyond PTSD
Fondacaro launched Connecting Cultures in 2009 as the psychological care component of New England Survivors of Torture and Trauma, a partnership that provides legal and health services for individuals and families. She and her staff of about 15 clinicians conduct individual and group therapy in their UVM offices and at community sites.
“They describe them as talking doctors,” says Masiti Mohamed, an interpreter and cultural consultant for Connecting Cultures. Some of the clients have stopped the medication prescribed to treat their anxiety or depression, she says. “They didn’t need that after the talking.”
Fondacaro concluded that the unique experiences of these women went beyond the typical diagnosis of post-traumatic stress disorder, or PTSD, and traditional methods to treat it. Their clients have survived ethnic persecution, sexual assault, the murders of children or spouses, loss of homes, starvation, poverty and the isolation of living in an unfamiliar place. One woman Fondacaro counseled had seen her aunt beheaded in front of her.
The label “disorder” was too narrow and stigmatized for the responses and resilience shown by these clients, Fondacaro says. And in many ways, those events continue to occur for them.
“We’re not just dealing with post-traumatic events,” she says. “We’re still dealing with it.”
Fondacaro came up with a new designation: Chronic Traumatic Stress, or CTS. Then she developed a package of 10 “modules” for treatment.
That’s the structure the app will follow. “Our job was to translate those modules into things that could work and could be communicated in a digital space,” Dibble says.
At home, users will start as they do in therapy -- with the question “How are you feeling?” -- and pick a face with a happy, anxious or sad expression. Then, the user ranks the severity of their feelings.
For a mindfulness practice, the client might play a favorite Somali song and think about the words. A safety technique might call up a picture of a place of comfort -- maybe a photo of her child or drawing of a river where she lived -- with a simple tap on the screen.
Users will also design their own avatars, taking control of their self-image, Fondacaro says. They’ll choose skin color and outfits. If they usually wear jewelry tucked under their hijabs and out of sight, they could add some bling to their smartphone self -- which only they will see, Mohamed explains.
“They feel maybe more confident in what they make for themselves,” she says. “They can feel comfortable putting on the jewelry, beautifying themselves. Also, it takes stress away.”
Gametheory and Connecting Cultures will collect extensive data on the use of the technology and effectiveness of the techniques. That research will fuel their pursuit of a second grant to test, tweak and prepare the app for commercial sale.
And in the process, Fondacaro hopes, her clients will have moved farther down the road to recovery.