BACKGROUND Having Juvenile idiopathic Arthritis (JIA) has widespread implications for a person's life. Patients have to deal with recurring arthritis, characterized by pain often accompanied by a loss of energy. Since JIA often persists into adulthood, patients with JIA are likely to encounter difficulties in their working life. We expect that the experiences in school life may be comparable to the barriers and opportunities which patients affected by JIA 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. METHODS This study used individual, semi-structured interviews and followed a predefined interview guide. Participants between 14 and 18 years of age (n = 22) were purposively selected to achieve a broad range of participant characteristics. Open coding was performed, followed by axial coding and selective coding. RESULTS Great differences were seen in the support and understanding that adolescents received in dealing with JIA at school, leisure activities and work. Varying approaches were mentioned on how to pursue a desired vocation. Perspectives regarding disclosure varied. Participants wished to be approached like any other healthy adolescent. Expectations regarding work participation were positively expressed. CONCLUSION This study showed that participants often disregarded having JIA when making plans for their future career. Facilitating an open discussion about the possible limitations accompanying JIA with 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.

中文翻译：

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患有幼年特发性关节炎的青少年对未来工作参与的经验、观点和期望；定性研究。

背景患有幼年特发性关节炎(JIA)对人的生活具有广泛的影响。患者必须应对复发性关节炎，其特征是疼痛常常伴随着能量损失。由于 JIA 通常会持续到成年，因此 JIA 患者很可能在工作生活中遇到困难。我们希望学校生活中的经历可以与受 JIA 影响的患者在成人工作生活中遇到的障碍和机会相媲美。因此，本研究的目的是了解 JIA 青少年在学校生活中的经历以及对未来工作参与的看法和期望。方法 本研究使用个人、半结构化访谈，并遵循预定义的访谈指南。有意选择 14 至 18 岁 (n = 22) 的参与者，以实现广泛的参与者特征。进行开放编码，然后进行轴向编码和选择性编码。结果 青少年在学校、休闲活动和工作中处理 JIA 时获得的支持和理解存在很大差异。关于如何追求理想的职业，提到了不同的方法。关于披露的观点各不相同。参与者希望像任何其他健康青少年一样被接近。积极表达了对工作参与的期望。结论 这项研究表明，参与者在为他们未来的职业生涯制定计划时常常忽视 JIA 的存在。