In the 2000s, Miriam Rafferty was a Chicago physical therapist who frequently worked with patients who had been diagnosed with Parkinson’s disease, the progressive neurological condition most often associated with tremors and gait problems. While she had tools to deal with the physical manifestations of the disease, she was at a loss when her patients asked if they should tell their employers about their condition or whether they should leave their jobs.
Rafferty looked for research that addressed those issues, but she found almost nothing. “There were lots of studies that show there is a problem with employment for people with Parkinson’s. They leave the workforce five years earlier than people without Parkinson’s,” she said. “There was only one study that suggested that vocational rehabilitation counseling might help but nobody had studied that yet. We wanted to try it.”
There was only one study that suggested that vocational rehabilitation counseling might help but nobody had studied that yet. We wanted to try it.Miriam Rafferty, PT, DPT, Ph.D.
Rafferty, Ph.D., is now a research scientist at the Shirley Ryan AbilityLab leading a five-year study into whether vocational rehabilitation counseling and resources can help people with Parkinson’s remain employed. The study is part of a $4.3 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) that was awarded to the Center for Rehabilitation Outcomes Research (CROR) in 2018.
In the first phase of the study, Rafferty’s team reviewed the literature and organized two focus groups of Parkinson’s patients, one for people with office jobs and a second for people engaged in more physical types of work. People in both groups were asked if they had received vocational counseling or been provided with resources related to keeping their jobs. No one had. “The consensus from the groups was ‘This would have been great,’” Rafferty said. “Both groups of Parkinson’s patients didn’t know it was even an option and said ‘It would have been really helpful to know this two years ago.’”
In fact, by the time someone with Parkinson’s is referred to a social worker or a vocational counselor about an employment issue, they are usually experiencing significant symptoms and are in the process of filing for disability or being let go, Rafferty said.
Armed with the focus group results, Rafferty talked with experts in vocational rehabilitation at the Shirley Ryan AbilityLab about an intervention for people with Parkinson’s. They told her that wasn’t going to be easy given the variability of symptoms and different time lines of progression. Some people with Parkinson’s have no visible symptoms for years while others quickly develop problems with movement, hand coordination, mood or the ability to speak. “When I talked to our counselors, they had a hard time coming up with a protocol. We couldn’t say, ‘Everyone with Parkinson’s needs these three things from vocational rehabilitation.’”
Because a randomized clinical trial was not a good option due to the difficulty of establishing a single treatment protocol, Rafferty decided to conduct a prospective observational study that will follow 60 people with Parkinson’s who are employed and plan to continue working for at least three years. The research team will observe how employment stress is affecting their lives and what kind of accommodations the patients and their employers are making to deal with the manifestations of Parkinson’s. In some cases, Rafferty expects to find that people are making their own accommodations such as taking jobs with flexible hours or opting to work from home without disclosing their condition to employers.
Recruitment started this fall at the Shirley Ryan AbilityLab and Northwestern Memorial Hospital, both in downtown Chicago, and will run through 2020. Researchers will survey participants about employment stress and workplace accommodations to get a baseline reading and then contact them again at six-month intervals for the next three years. “We aren’t studying a single intervention per se, but we will make sure they know about all the resources available to them. We’re not going to push them to use any resources, but we will track what resources they use,” Rafferty says.
One resource that every participant will be provided is a handout that Rafferty’s team developed that lays out how various clinicians and counselors can help after a Parkinson’s diagnosis. For instance, occupational therapists can provide strategies for coping with fatigue while speech language pathologists may help with voice control for phone calls or public speaking engagements. Social workers can help someone work through the decision to disclose a Parkinson’s diagnosis to an employer while vocational rehabilitation experts can assist with return-to-work decisions and strategies for seeking workplace accommodations.
Once the data are collected and analyzed, Rafferty’s team will share the results with clinicians and people with Parkinson’s. “If it turns out that people benefit from vocational rehabilitation, then we need to figure out how to improve access to that service at specialized Parkinson’s centers,” Rafferty says. “If you have an effective clinical service, you need to spread it around.”