Research on work experiences for young adults with arthritis
What do young people living with arthritis need to do well at work? What’s their experience with the job market and living with a chronic condition? These are essential questions for a generation that faces a significantly different work landscape than their parents did.
Dr. Arif Jetha, a scientist at the Institute for Work & Health and an assistant professor at the University of Toronto’s Dalla Lana School of Public Health, is currently working on research about work disability prevention for millennial young adults with rheumatic disease. Through online questionnaires, Dr. Jetha and his team have gathered (and continue to gather) data from 387 Canadians aged 18-35 who are living with rheumatic diseases, including juvenile arthritis, lupus and rheumatoid arthritis, to get a sense of their challenges and opportunities in the work world.
Q Why are you interested in young people and work?
A lot of research was missing on this younger cohort. When you look at the statistics, a significant proportion of people with arthritis are in their prime working years and many are under the age of 40. What makes this research pretty compelling is that layered on top of the difficulties of having a rheumatic condition are a number of transitional changes that young people face as they start work. They’re not only learning to manage their health condition independent from their parents, but they’re also learning to manage their condition at work, figuring out how they can navigate some of the difficulties they might face within their jobs. It creates this unique storyline for young people.
Q What kind of challenges are you hearing about?
We’ve heard quite often about challenges with disclosing their health condition. They have an invisible condition and they’re young, so people expect them to be physically able to perform all the tasks; they expect them to have the energy necessary to work long hours or work random shifts. So that creates a couple dilemmas if they’re trying to gain access to supports at work. The first is that they’re met with disbelief. The common response is “you’re young, there’s no way you can have arthritis.” And then layered on top of that is the fact that many young people are starting jobs in part-time or temporary contracts. Many of those jobs don’t have formal accommodation structures available. Then, as you can imagine, a young person might be apprehensive about talking about their health condition or asking for support, because that might limit their ability to move up within their job, or get that reference, or get the good shifts or the good training opportunities. Young people tend to mask their health condition or feel less comfortable talking about it at work.
Q What are effective strategies for helping young people with arthritis sustain employment and remain productive?
Drawing from qualitative research we’ve conducted (that informed our most recent study), we found that the types of accommodations and benefits required by young people with arthritis are pretty much the same as the middle- and older-aged groups. The difference that we’re seeing is in terms of their ability to access them. That goes back to the types of work they’re entering and the difficulties with talking about their health condition and requesting [accommodations]. [I think] this reflects not just a shift for young people with arthritis but reflects a shift in the labour market more generally. Within our more recent research there’s clearly a need for adaptive work schedules and having access to assistive technologies, but I think there’s a different level of understanding in how to ask for it and how to actually implement within one’s place of work. The need for benefits is probably one of the greatest requirements for young people entering the labour market.
Q What are some key takeaway messages?
For young people with rheumatic disease: In situations where formal accommodations aren’t available, and/or you don’t feel comfortable requesting supports, consider opportunities to implement informal accommodations, such as adapting the way you perform your work tasks, or prioritizing higher-demand jobs when your arthritis symptoms are less severe.
For rheumatologists: Rheumatologists should be prepared to direct their young patients to available resources for finding and sustaining employment. They can also play a role in helping young people with strategies to self-manage their condition at work.
For employers: Once young people with rheumatic disease find a job that’s stable and has benefits, they are more motivated to grow within that organization. A majority of the most-needed accommodations can be cost-effective and benefit all workers with and without health impairments.
Dr Jetha’s work is supported by an Arthritis Society Young Investigator Operating Grant active from 2018-20. Reprinted with permission from the Arthritis Society.