UCalgary research reveals impact juvenile arthritis has on entire families

September is Arthritis Awareness Month, and only one in five Canadians know that children also suffer from the disease. There are more than 100 different forms of arthritis that impact six million Canadians of all ages, including children. 

Arthritis is an invisible disease, where symptoms aren’t always obvious to those around them. It is much more serious than most people think and is plagued by misconceptions, like the belief that arthritis only involves minor aches and pains and only impacts older people. People can suffer from extreme joint stiffness, joint deformities and loss of function.

Getting your first job is a milestone accomplishment as a teen or young adult. For youth living with juvenile idiopathic arthritis (JIA), managing a job can mean navigating pain, fatigue and other symptoms alongside the usual challenges of entering the workforce. 

The impact on work can begin long before a young person gets their first pay cheque.

Two studies led by University of Calgary researcher Dr. Deborah Marshall, PhD, a professor in the Cumming School of Medicine (CSM), are providing a more complete picture of how JIA affects employment and everyday life across a family, from young people beginning to enter the workforce to parents balancing their careers with caring for a child with a chronic disease.

Clinicians, paediatric rheumatologists and researchers from the international Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) and UCAN CURE studies examined those impacts from perspectives of the child and parent. 

“We’ve looked beyond the clinic to understand what families experience in their everyday lives, from caregiver well-being and impacts on employment to the financial costs families carry themselves,” says Marshall, “Understanding these experiences from the family’s perspective is essential to identifying the supports they need, both within the health-care system and in the communities and workplaces where they live their lives.”

Youth feel the impact, even when they make it to work

One of the two studies looked specifically at young people with JIA as they reached working age, an area researchers say has received little attention. It included 154 young people, with a median age of 17, from Canada and the Netherlands, with approximately 60 per cent employed.

Perhaps most striking was the impact JIA had on young people even when they were able to make it to work. Youth reported 27 per cent impairment in productivity while working, known as presenteeism.

Symptoms of JIA can follow teens into the workplace, potentially affecting their productivity at an important stage when they are developing skills, confidence and independence. Learning how to advocate for what they need as a person with a chronic condition in the workforce is also not a simple task. 

Cassie and Friends, a Canadian organization supporting children and families living with juvenile arthritis, has first-hand experience with these impacts. “Our goal is a future where arthritis doesn’t narrow the options available to young people or their families,” says Executive Director Jennifer Wilson. “That means creating more understanding and flexibility in workplaces, while continuing to pursue earlier, better treatment and disease control so fewer of those choices have to be shaped by arthritis in the first place.”

It reaches parents' workplaces, too

The second paper included 754 parents from Canada and the Netherlands. It found JIA had a measurable impact on caregivers' work and everyday life, as well.

Seventy-nine parents reported changing their work commitments, most commonly by reducing their working hours. Over the study period, Marshall and her team estimated parents missed six per cent of work time because of their child's JIA.

Those missed working hours also carried a financial cost. Absenteeism resulted in an estimated average annual wage loss of $5,600 per family. Families of children with more active disease experienced greater losses, with estimated annual wage loss reaching $6,800 among parents caring for children with high disease activity, compared with $4,500 when the child's disease was inactive.

“We see every day how the impact of JIA can build across a family over time,” says Wilson. “Parents may reduce their hours, turn down opportunities or make career choices around flexibility and benefits, and then, as their child grows up, arthritis can begin shaping that young person’s own choices about work and their future.”  

Looking at JIA as a whole-family issue

Across both studies, one pattern was clear: The greater the disease activity, the greater the impact on work and everyday life, underscoring the need for better workplace support, including education about accommodations and anti-discrimination protections.

These findings also echo what UCalgary researchers are hearing from families through the Producing and Arthritis Value-Framework with Economic Evidence (PAVE) study. Co-creating with patient and parent research partners, the team has heard the team has heard how JIA can shape career choices and trajectories, decisions about disclosing the disease at work, and requests for accommodations. Families have also highlighted a lack of understanding of this invisible illness and the importance of benefits and insurance coverage when employment decisions are influenced by the costs of treatment and care.invisible illness and the importance of benefits and insurance coverage when employment decisions are influenced by the costs of treatment and care.

Together, the research and lived experiences show that the impact of JIA extends well beyond missed work, shaping how young people and families navigate their careers and everyday lives.

If your child lives with JIA and you’d like to participate in research at UCalgary, visit here.