Our journey, our stories: The lived experiences of parents/caregivers of children with severe neurodevelopmental disorders and behavioural complexity requiring examinations under anaesthesia
Bibliographic record
Abstract
Objectives: A significant proportion of children with severe neurodevelopmental disorders (NDD) are unable to access recommended medical evaluations due to behavioural complexity (aggression/self-injurious behaviours). Medical evaluations under anaesthesia (EUA) are often required for planned procedures; however, a lack of coordination results in missed opportunities and repeated, often traumatic sedations. We aim to describe the lived experiences of parents/caregivers of children with behavioural complexity undergoing EUA at a quaternary hospital in Canada. Methods: Semi-structured interviews were conducted to explore families' experiences with EUAs. Data collection included demographics/diagnoses, experiences of previous EUA, and positive/negative contributors. An inductive thematic analysis was undertaken as part of an iterative process. Patient-oriented research principles embedded within a quality improvement framework were utilized throughout multiple phases of the study. Results: Eleven families participated in the study. Five key themes were identified: (1) The cumulative physical and psychological trauma experienced by patients and families when accessing EUA, (2) Need for awareness/understanding of behavioural complexity in children with NDD, (3) Requirement of equitable and not equal care, tailored towards specific needs, (4) Communication being key, and (5) Providers being willing to undertake the role of care coordination. An infographic was developed to highlight these themes by our parent partner. Conclusions: Our results highlight potential opportunities to increase care coordination of EUA for this population. Due to resource constraints and the lack of formalized pathways, there is ample room to create processes that are patient-centred and trauma-informed. Parental/caregiver voices are essential in guiding future service development.
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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 | 0.006 | 0.017 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.014 | 0.012 |
| Scholarly communication | 0.005 | 0.007 |
| Open science | 0.002 | 0.007 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.002 | 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".