Meaningful occupations of young adults with muscular dystrophy and other neuromuscular disorders
Bibliographic record
Abstract
BACKGROUND.: Youth with Duchenne muscular dystrophy (DMD) and other neuromuscular disorders are living well into adulthood and often need help engaging in meaningful occupations. PURPOSE.: Our purpose was to explore enablers and barriers to engaging in meaningful occupations, from the perspectives of youth, parents, and practitioners. METHOD.: This qualitative study involved 26 participants (11 parents, eight youth ages 19 to 28 [mean = 22.3 years], seven practitioners). Data were obtained from semistructured interviews and analyzed using an interpretive descriptive approach. FINDINGS.: Youth with DMD and neuromuscular disorders engage in meaningful occupations in a variety of ways. Occupational enablers were supports and accommodations and self-care skills and coping strategies, while occupational barriers involved societal expectations of a normative adulthood, discrimination and inaccessible environments, lack of supports and resources, medical challenges, fatigue, lack of motivation, and social isolation and depression. IMPLICATIONS.: Practitioners should work to uncover what youth consider important and connect them to appropriate resources so they can engage in meaningful occupations.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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 teacher head, 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".