The Prevocational and Early Employment Needs of Adolescents with Juvenile Idiopathic Arthritis: The Adolescent Perspective

Abstract

The purpose of this study was to explore the prevocational needs of adolescents with juvenile idiopathic arthritis (JIA) from their own perspectives. A focus group discussion was undertaken with eight adolescents with JIA (14.2–16.6 years) attending one United Kingdom hospital. The topics of interest were (i) attitudes towards education, prevocational readiness and employment in relation to JIA; (ii) perceived barriers; (iii) coping strategies; and (iv) preferred sources of support. The data were analysed according to standardised procedures that included data reduction, data display, conclusion drawing and conclusion verifying. The provision of vocational support for young people with JIA was reported to be uncoordinated, limited and unresponsive to individual needs. A recurrent theme was that professionals generally underestimated adolescents' educational and vocational potential. This was felt to be true of teachers, careers advisers, admissions personnel at colleges and universities and potential employers. Most adolescents worried about discrimination and those in whom the JIA was not visible felt a dilemma about disclosure to potential employers. The current framework of careers advice appeared to have failed the adolescents in this study who, in the absence of satisfactory support, found themselves consulting health professionals instead. Greater careers advice support for adolescents and professionals is warranted.

Unpacking Early Work Experiences of Young Adults With Rheumatic Disease: An Examination of Absenteeism, Job Disruptions, and Productivity Loss

“…Involvement in paid work can be complex for young adults, ages 18–30 years, who live with rheumatic diseases. During this period of life, they must learn to independently manage their health while also participating in a range of new responsibilities, such as finding employment, marriage, or parenting . Yet, research examining the work experiences of young adults with rheumatic diseases is limited.…”

Experiences, perspectives and expectations of adolescents with juvenile idiopathic arthritis regarding future work participation; a qualitative study

“…Most of the participants expressed the desire for being addressed as a normal adolescent and not as a patient. That was often the reason for not disclosing having JIA to new classmates or colleagues (quotations [17][18][19]. Despite the variable course of the disease, having JIA had become the normfor most of the participants, especially for those who had been diagnosed with JIA in early childhood or multiple years ago (quotation 20).…”

“…To reach vocational adaptability, vocational support is important but rated far from satisfactory by adolescents with JIA [19]. Low expectations from others and limited career advice are seen as important barriers during career development [19]. We hypothesized that these barriers in the early career of JIA patients could be avoided, if proper support would be available.…”

Transition of care from paediatric to adult rheumatology

“…Several authors have reported increased unemployment in young adults with JIA,11 12 22 which is not always related to disability or educational achievement. The importance and/or relevance of other markers of vocational readiness have been reported and include the lower expectations of professionals 27. How vocational aspects of transition are addressed within rheumatology remains unclear, particularly as significant unmet training needs in occupational therapists – the professionals most likely to implement vocational strategies – have been reported 28…”