Lived Education Experience of Young Adults With Childhood- and Adult-Onset Systemic Lupus Erythematosus: A Multicenter Canadian Qualitative Study
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.003 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.010 | 0.003 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".