Abstract
Young adults with Systemic Lupus Erythematosus (SLE) have physical, cognitive and psychosocial health issues and other comorbidities that may impact educational attainment and ultimately lifetime socioeconomic achievement. We aimed to understand the lived educational experiences of young adults with SLE and assess their perceived barriers from SLE. Individual semi-structured interviews were conducted remotely with participants from two Lupus clinics in Canada. All interviews were transcribed verbatim, double-coded and analyzed using a reflexive thematic approach. Thirteen participants (85% female), with a median age of 20.5 years, seven with childhood- and five adult-onset SLE were interviewed. Four themes were identified: (1) Challenges due to lupus: difficulties adjusting to the diagnosis, physical and cognitive symptoms of SLE; (2) Changes in aspirations: education or career goals modified by reducing course load or shifting to more sedentary or less demanding careers; (3) Facilitators of student success: social support from family and friends, parental financial support, individualized accommodations from institutions, and asynchronous learning opportunities as a response to the COVID-19 pandemic; (4) Coping and moving forward: using more adaptive than maladaptive coping strategies were used to self-manage, including self-acceptance, pacing and planning. While most participants are successfully engaging in higher education, their performance was often negatively impacted by the physical and cognitive toll of SLE. Social support and academic accommodations helped to alleviate the challenges experienced by this group. Going forward, clinicians should initiate conversations about the educational experiences of young adults with SLE to proactively address challenges they may face.
Published Version
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