Exploring the Impact of Childhood Epilepsy Diagnosis on Family Daily Life: An Ethnographic Study of Occupational Participation and Support Needs Over 12 Months
Bibliographic record
Abstract
This research project explores how a childhood epilepsy diagnosis affects the daily lives and occupational participation of both the child and their family during the first year post-diagnosis. The study adopts a qualitative, longitudinal design grounded in interpretive description to capture the evolving lived experiences of families navigating this significant life change. The study will involve four semi-structured interviews with primary caregivers (parents or legal guardians) of children under 12 years old who have received an epilepsy diagnosis within the past three months. Interviews will be conducted via Zoom at four time points, baseline (within 3 months), 4 months, 8 months, and 12 months post-diagnosis to allow for exploration of changes over time. Each interview will last approximately 60 minutes and will be audio-recorded for verbatim transcription. To complement the qualitative data, the Canadian Occupational Performance Measure (COPM) will be administered at each timepoint to identify caregiver-prioritised occupational goals and track changes in perceived performance and satisfaction over time. The study’s objectives are: (1) to explore how epilepsy impacts children’s participation in everyday activities such as self-care, school, and play; (2) to understand how family routines, caregiving responsibilities, and occupational balance are affected over the course of a year; and (3) to identify perceived support needs and opportunities for occupational therapy intervention. Expected outcomes include a deeper understanding of the occupational impact of childhood epilepsy, insight into how families adapt over time, and evidence-informed recommendations for occupational therapy practice.
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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 | 0.003 | 0.002 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.005 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.003 | 0.001 |
| 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".