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Clinicians who work with people with spinal cord injury (SCI) know that many of them also experience mental health challenges. Some people with SCI are diagnosed with depression, anxiety disorders, or PTSD, and these conditions may persist long after the physical effects of their injuries are stabilized and patients are discharged from the hospital. One factor that increases a person’s chance of becoming depressed is feeling lonely and socially isolated.
Alex Wong, PhD, DPhil, is hoping to do something about that. Wong, assistant director of the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab, has been awarded a $350,000 grant to develop a digital strategy to predict and help counter feelings of loneliness in people with spinal cord injuries. The funding, from the Craig H. Neilsen Foundation, will pay for developing a smartphone app, recruiting participants to test it and then evaluating the app’s usability and initial efficacy in staving off or lessening feelings of loneliness in people with SCI-related disabilities.
“If we can identify that you are at risk, you will get a caring message from someone,” Wong says. “We’re trying to prevent those feelings of social isolation before they happen.”
Wong specializes in using smartphone technology to read people’s moods in real time and he has previously conducted research looking at treatment strategies to optimize psychosocial adjustment after a neurological disability. Earlier research at Edward Hines Jr. Veterans Administration Hospital, conducted by CROR collaborator and project co-investigator, Sherri LaVela, PhD, MPH, found that U.S. veterans with SCI experience higher levels of loneliness and social isolation than the general population. Those feelings are exacerbated if people are depressed or anxious or have several persistent secondary conditions like chronic pain or pressure sores.
As part of the new grant, Wong and his research team are working on an algorithm that they hope will be able to predict which people with SCI will develop feelings of loneliness and social isolation. The smartphone app will be installed on participants’ phones. For two weeks, it will send study participants a series of brief surveys asking about their current mood, health conditions, environment and sense of social connection. Are they home by themselves? Are they experiencing pain or other complications? Are they drinking alcohol?
Wong’s goal is not simply to identify when someone is feeling isolated but to understand what will predict those feelings in the future. “I want to answer the question: among all these variables, which small set can predict future perceived social isolation?”
Each participant will have their own social health profile and be rated on a loneliness scale. If a participant’s responses reach certain thresholds, the app will then send a series of carefully crafted supportive messages that are grounded in psychology and have been developed with input from knowledgeable sources like former SCI patients, clinicians and researchers.
Wong knows there’s a delicate balance between sending a well-calibrated message at the right moment and bombarding someone with a series of intrusive texts. “We need to use the right touch with people. We don’t want to bother them,” Wong says. He also knows that getting the same message over and over is likely to be off-putting. That’s why the research team plans to build a large library of messages that will include communications based on three schools of psychology: behavioral activation, cognitive behavioral therapy (CBT), and positive psychology.
In behavioral activation, people are encouraged to engage in meaningful activities when they are feeling lonely or depressed. Positive psychology helps people focus on what they can do, not what is perceived as “wrong” with them. CBT is a practical skills-based intervention that helps people recognize negative thought patterns and behaviors and learn ways to change them.
Once participants receive a caring message, the app will follow up with a survey asking if the communication reduced their feelings of isolation. “At the end of this, the model should be able to tell us which theory works the best with which group,” Wong says. Based on that feedback, messages will be edited or reformulated as needed.
The project will formally get underway in May, but the research team is already working on coding for the algorithm and coming up with preliminary survey questions for participants. “I want to get this project going as quickly as possible so it’s of use to patients,” Wong says.