Background/Purpose:

Recent decades have seen marked changes in the management of juvenile idiopathic arthritis (JIA), with improved clinical outcomes for many patients. However, unemployment rates for adults with JIA remain high compared to peers, highlighting the need to address vocational issues as an integral part of transitional care.

The aims of this study were to explore i) experiences and expectations of employment amongst young people with JIA ii) the actual and potential role of the multidisciplinary team in promoting positive employment outcomes.

Methods:

We interviewed 13 young people with JIA (median age 22y, range 16-31y) and nine health professionals from three tertiary rheumatology services. A focus group for young people with JIA was held in each of the three centres. Qualitative techniques were used to analyse the transcripts.

Results:

Three related themes associated with vocational experience emerged from our data analysis, i) JIA has made education and employment more challenging for all the young people in our sample, ii) young people often disclose only minimal information about their condition to educators or employers, iii) all the young people have experienced emotional challenges associated with having JIA and learning to manage these emotions would appear to contribute to vocational success. Young people from one recruiting centre have met peers with JIA at social events and many associate this with gains in both practical coping skills and emotional wellbeing.

Data relating to vocational expectations suggests two important issues. Firstly, many young people have low expectations of employers’ willingness to support employees with health conditions and secondly, few are well informed about their legal rights.

Each tertiary rheumatology service includes nurses, doctors and occupational therapists, while access to other professionals varies. We identified three themes concerning perceived barriers to maintaining and improving vocational support, namely i) staff need appropriate knowledge and skills to address vocational issues (currently training or team discussions about vocation appear to be rare), ii) all staff find it challenging to provide holistic care within short appointments, with some describing a lack of attention to vocational issues, iii) dialogue with educators or employers can improve support for struggling individuals but happens less for young people compared to under 16s.

Conclusion:

Young people with JIA have a significant need for vocational support from health professionals. Specifically, our work suggests that these young people would benefit from accessible information on: talking about arthritis; anti-discrimination legislation; and local support services. Many would value emotional support, which may include opportunities to meet peers.

The generic nature of vocational challenge lends itself to cross-specialty approaches to addressing training needs and facilitating dialogue with educators and employers. Further work is indicated to improve information resources, explore the needs of educators and employers and develop appropriate and cost-effective interventions.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-vocational-experiences-of-young-people-with-juvenile-idiopathic-arthritis-and-the-role-of-the-multidisciplinary-team-supporting-positive-employment-outcomes/