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

Having juvenile idiopathic arthritis (JIA) has widespread implications in a person’s life. JIA encompasses all forms of arthritis that begin before the age of 16, persist for more than 6 weeks, and are of unknown etiology [1]. Recurring arthritis is the hallmark of this disease, characterized by pain and loss of function and is frequently accompanied by loss of energy [2]. Since JIA often persists into adulthood [3‐5], patients with JIA are likely to encounter difficulties in their working life. Earlier studies showed inconsistencies regarding employment rates and educational achievements of patients with JIA in comparison to the general population [6‐11]. This ranges from no differences in occupational outcomes between JIA and comparison groups [7] to an alarming 32% of patients with JIA who are either disabled, receive a disability pension, are on sick leave or undergoing rehabilitation treatment [10]. Consequences of chronic illness in work and employment pose a great burden on both the individual and society. Therefore, prevention of work disability has increasingly become a topic of scientific research [12‐15].

In vocational psychology the terms “aspirations” and “expectations” are used to denote the difference between what someone wants to achieve or become and what someone thinks is possible to achieve given their limitations and capabilities. Vocational development is presented as a life-long process, beginning in early childhood [16, 17] leading to ‘vocational adaptability’ [18], which is defined as: “the readiness to cope with the predictable tasks of preparing for and participating in the work role and with the unpredictable adjustments prompted by changes in work and working conditions”.

We question whether experiences of patients with JIA during school life influence aspirations and expectations of their career.

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. From whom and to what extent patients with JIA need support regarding their future career is as of yet unknown.

We expect that the experiences of patients affected by JIA during their school life, including leisure activities and part-time jobs, may be comparable to the barriers and opportunities which they encounter in adult working life. Therefore, the aim of this study was to elicit the experiences during school life and the perspectives and expectations regarding future work participation of adolescents with JIA.

Thirty-one eligible patients were contacted to participate in this study. One patient refused because of unpleasant experiences with participating in research in the past, six patients did not feel like participating and two patients could not fit it into their schedule. No repeat interviews were conducted. A total of 22 patients were included in this study, 6 males and 16 females with a median age of 16.7 years (range 15–17), a median CHAQ of 1.000 (range 0.000–2.250 on a scale from 0.000 to 3.000) and a median PedsQL Life inventory of 78.5 (range 35–94). The ranges of both CHAQ and PedsQL indicate a broad range of experienced limitations and complaints of JIA in daily life. Eight participants had inactive disease, two participants had JIA in remission and 12 participants had active disease. The individual patient characteristics are shown in Table 2. Participants were enrolled in different levels of secondary education, including prevocational and higher secondary education, pre-university education and secondary vocational education. All participants but one had or had had a part-time job during evening hours or in the weekend. The physical demands of these jobs ranged from shifts of 2 hrs as a cashier to 6 hrs doing the dishes at a restaurant.

Main themes and subthemes were arranged according to patients’ experiences (having JIA in school life and part-time jobs), perspectives (regarding future work participation) and expectations (regarding future work participation). The coding tree is depicted in Fig. 1.

In this study we researched experiences of adolescents with JIA during school life, including leisure activities and at a part-time job, and the perspectives and expectations regarding their future work participation. Individual interviews were held with 22 adolescents diagnosed with JIA with different social, economic and educational backgrounds. The experiences of having JIA at school, sports or at a job show varying degrees of understanding and support as well as differences in adjustments that were provided. The perspectives of adolescents with JIA on future work participation described how participants saw themselves as students and employees with JIA and how they wished to be seen. Expectations could not always be formulated due to the variable course of JIA. Regarding the more distant future, career expectations were optimistic.

Within participants’ perspectives the theme ‘normality’ and the reasons for not disclosing having JIA were highly intertwined and can be seen as pursuing an equal position as compared to ‘healthy’ others.

This is mentioned in earlier studies. For example, in a systematic review of Tong et al [26] it was referred to as an “aversion to being different” and “striving for normality””, the latter including “preserving social identity”. Another qualitative study by Hanson et al. [27] mentioned that one of the reasons not to disclose having JIA is “not wanting to be perceived as different”. This is comparable to our results since participants who did not previously disclose having JIA or did not want to do so in the future, were trying to prevent becoming known as ‘the JIA patient’. This is probably the reason why adjustments in workload at a part-time job were rarely formally implemented or requested. Colleagues, often friends or family members, helped out when necessary, sometimes without the employer knowing. This corresponds to the study of Hanson et al. [27] which noted a restricted disclosure, e.g. confiding a trusted co-worker. Another reason mentioned in our study for not disclosing having JIA is negative experiences with educators or employers. This was said to result in a lack of confidence and trust in future employers.

Nondisclosure is a cause of concern since earlier research in the adult population stated that not disclosing having a chronic disease may result in unrealistic expectations by employers and workers not being able to meet their job demands [28]. Although the participants preferably didn’t want others to know they have JIA, they presumed that disclosure is necessary to receive consideration or the needed support from their fellow students, teachers and (future) colleagues and employers. Adolescents seem to waver between disclosure and nondisclosure. Eagerness to be normal and the high level of perseverance were revealed as possible pitfalls of nondisclosure.

Assuming perspectives and expectations are based on experiences, it is surprising that having JIA did not lead to concern about its potentially significant role in the participants’ career choice. Participants made their career choice without appreciating the experienced impact of JIA on participation in school or part-time employment in the past. A similar pattern is seen regarding the attitude the participants held towards adjustments. Although participants where in need for a special chair or an adjusted schedule at school or at a part time job, most participants did not take adjustments into account in their future work. Even when participants experienced several setbacks due to JIA, which were reflected upon during the interviews, motivation for a certain career path seemed to overrule choosing an alternative. This suggested that career decisions were rather based on aspirations (hopes and dreams) than on expectations (possibilities and challenges).

This result confirmed earlier research which stated that plans after high school of patients with JIA did not deviate from healthy peers [7]. Hanson et al. [27] also mentioned that some young people were highly committed to their career choice and willing to overcome barriers caused by JIA. On the other hand, it contradicts a study by Walter et al. [29] which showed around half of their participants (n = 154, mean age 20) had taken JIA into account when choosing their career. Additionally, Tong et al. [26] identified the subtheme ‘resourcefulness’, roughly meaning accepting limitations and seeking alternative activities in leisure activities and vocational opportunities.

With this study, we purposively chose this age category to give insight in the perspectives before entering the labour market. Consequently we assume not all participants had reached vocational adaptability. Still, not considering JIA in future career planning seems a rather naïve attitude which appears to be in close association with the hope or belief that JIA will subside. Unfortunately many patients will not achieve remission, although the remission rate increases with disease duration, from 7% at 18 months, 40% after a minimum of 10 years [4] up to 59% after a follow-up of 30 years [30]. Another reason mentioned for patients not to consider JIA in their future plans, is the variability in disease course, which, at this point, cannot be predicted [3]. RA is comparable in its variability. A study on behavioural coping in RA showed that letting the disease influence the choice of a job was a high preventive factor in withdrawal from the labour force [31]. This underlines the need for discussing vocation with adolescents with JIA.

Transition includes disease education and support in self-management [32, 33]. The influence of the disease on everyday life and how this changes while becoming an adult, is thought to be equally important [34‐37]. The European League Against Rheumatism / Paediatric Rheumatology European Society (EULAR/PReS) considers the subject of vocation part of holistic care and therefore an important subject in the transition process towards adult care. Discussing vocational aspects with patients such as developing skills in disclosure and career prospects, are therefore recommended [38]. Based on our study we advise healthcare professionals to start this conversation in early adolescence. Thus creating awareness for the barriers and opportunities in future work participation before choices are made regarding career planning.

This study showed a range of experiences, perspectives and expectations of adolescents with JIA regarding future work participation. Differences were seen in the support that adolescents received in dealing with JIA at school, leisure activities and work. Varying approaches were mentioned on how to pursue a desired vocation. Surprisingly, participants often disregarded having JIA when making plans for their future career. Appreciating the difference in vocational aspirations and expectations will contribute to the vocational adaptability of adolescents with JIA. 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.