Teenagers with juvenile idiopathic arthritis (JIA) in the Netherlands show a desire for “normalcy” and willingness not to consider their disease in career plans, voicing in a survey hopes while acknowledging limitations at work and school.
The study, “Experiences, perspectives and expectations of adolescents with juvenile idiopathic arthritis regarding future work participation; a qualitative study,” was published in the journal Pediatric Rheumatology.
JIA symptoms such as pain and swelling can vary in severity, but often persist into adulthood. The disorder, frequently accompanied by loss of energy, can have a profound impact on quality of life, affecting day-to-day activities and productivity at work.
Researchers in the Netherlands evaluated these affects more closely by surveying 22 adolescents with JIA, ages 15 to 17.
The survey was conducted as an hourlong in-person interview, guided by specific topics such as experiences in school and work, perspectives on living with JIA, and expectations for the future. Participants were also asked about understanding and support from others.
Most discussed practical support, including ergonomic products at home, and both special elevator passes and extra time during examinations at school.
Others reported indifference or a lack of understanding from fellow students and teachers, which they attributed to the fact that the disease is not visible and its manifestations are variable. In contrast, people who also had a rheumatic disease or knew someone with one showed genuine empathy.
Medical support was also mentioned, with some participants wanting guidance from a pediatric rheumatologist, and adding that a medical certificate would facilitate support at school and in the workplace.
The study also examined emotional support in social life, finding that these teenagers saw a supportive environment from family and friends as essential while a protective environment was sometimes viewed as overbearing.
JIA limited participation in school and work opportunities for some participants. This included missing school due to symptoms or medical appointments, needing to repeat grades or switch to a lower educational level, not being hired for part-time jobs or accepted to educational programs, and not maintaining a high level in sports programs.
Some of these adolescents reported positive experiences, in which employers were reassuring and accepting of this disease. Appropriate accommodations at the workplace were possible when colleagues were friends or family.
In the perspectives portion of the survey, these young people reported a desire for normalcy. Such desire manifested as wanting to have normal capabilities at work and school, and to be treated like others their age. As a result, patients often did not disclose they had JIA to work colleagues or classmates, and were uncertain about whether they should notify potential employers about the condition.
Some felt disclosure would be necessary to make special accommodations with employers, while others feared being stigmatized in the workplace.
Participants also discussed themes of independence and perseverance, reporting the eagerness to make their own decisions and to overcome symptoms to accomplish goals, but noting that they had to consider symptoms when making plans and joining activities.
The survey then shifted to expectations, in which the teenagers were asked about their future careers. Many responded with hopes and dreams, instead of specific plans or predictions.
Most were optimistic when considering their long-term work and family goals, with many not mentioning JIA during those discussions.
Researchers concluded that even though participants experienced limitations at work and school, they often did not consider JIA when considering future goals.
“Surprisingly, participants often disregarded having JIA when making plans for their future career,” the researchers wrote. “Facilitating an open discussion about the possible limitations accompanying JIA with (future) educators and employers might prevent overburden and increase the chance of starting a career which would accommodate the patient with JIA in the near and distant future.”