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Research on work experiences of young people living with arthritis

Research on work experiences of young people living with arthritis

Millennials, work and arthritis: A new study

What do young people living with arthritis need to do well at work? What are the challenges they’re dealing with? What’s their experience with the job market and living with a chronic condition? These are essential questions for a generation that that faces a significantly different work landscape than their parents did.

To find out more, flourish spoke with 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, whose current research looks at on 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.

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.

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.

Previous research shows that job accommodations (like modified hours), work modifications (like rearranging tasks) and extended health benefits (like access to drug benefits) are examples of effective strategies for helping people with arthritis sustain employment and remain productive. Is this the case for young people as well?

Preliminary analysis indicates that young people who have their needs met within their place of work are less likely to report lost productivity. 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 in their ability to access them. That seems to be quite different. 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.

With work modifications, there’s also this lack of understanding [that comes from] not being part of the labour market before, not knowing what works well and what doesn’t. Within our more recent research there’s clearly a need for adaptive work schedules, 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. Often times the job search they’re going through is informed by access to medications, access to extended health benefits, which is not surprising, because many of them are aware at a certain point they’re not going to be able to access mom and dad’s health benefits any more, usually around age 25.

What are some key takeaway messages?

We often just focus on the challenges that are faced by young people with health conditions in the workplace, but I think there are some good news stories too.

For young people with rheumatic disease: Accessing available supports within the workplace can be beneficial to sustaining employment and advancing within your career, while also managing your health. Young people should gain a better understanding of how their rheumatic disease may impact their performance of job tasks. 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, pacing yourself or prioritizing higher-demand jobs when you have more energy or periods of the day when your arthritis symptoms are less severe.

For rheumatologists: Finding and sustaining secure employment is a concern for young adults with rheumatic conditions. It’s not just an employer issue, it’s not just a young person issue but it’s also a health care team issue. Rheumatologists should be prepared to direct their young patients to available resources that can enable them to find and sustain employment. Rheumatologists and health care professionals can also play a role in helping young people with strategies to self-manage their condition at work.
For employers: Young people with rheumatic disease can significantly contribute to a workplace. We consistently hear about a desire to really sustain employment. There’s less likelihood a person with a rheumatic condition might hop from job to job like their peers. Once they find this job that’s stable and has benefits, they might be more motivated to grow within that organization, give it all they can—that way they’re successful workers. If you’re wanting to recruit young workers and really have them grow within your organization, this is a population that is hoping for some stability. 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.