Lived Education Experience of Young Adults With Childhood- and Adult-Onset Systemic Lupus Erythematosus: A Multicenter Canadian Qualitative Study

Objective Young adults with systemic lupus erythematosus (SLE) have physical, cognitive, and psychosocial health issues and other comorbidities that may affect educational attainment and, ultimately, lifetime socioeconomic achievement. We aimed to understand the lived educational experiences of young adults with SLE and to assess their perceived barriers from SLE.

Methods Individual semistructured interviews were conducted remotely with participants from 2 SLE clinics in Canada. All interviews were transcribed verbatim, double-coded, and analyzed using a reflexive thematic approach.

Results Thirteen participants (85% female) with a median age of 20.5 years—8 with childhood-onset SLE and 5 with adult-onset SLE—were interviewed. Four themes were identified: (1) challenges due to SLE (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 a more sedentary or less demanding career); (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 coronavirus disease 2019 pandemic); and (4) coping and moving forward (using more adaptive than maladaptive coping strategies to self-manage, including self-acceptance, pacing, and planning).

Conclusion Whereas most participants were successfully engaging in higher education, their performance was often negatively affected 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 the challenges they may face.