A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child
Bibliographic record
Abstract
Receiving a diagnosis, such as cerebral palsy (CP), can have lasting impacts on caregivers and families. Previous literature has described that caregivers wish to receive a diagnosis together, without delay, in a private, direct, honest, and sympathetic way. This study aimed to understand the experience of caregivers of children with cerebral palsy (CP) or similar conditions when receiving a diagnosis for their child.: Caregivers of children and youth aged 0-18 years with CP or a similar physical condition completed a survey investigating who first provided a diagnosis, and the way it was provided. Questions were based on the pediatric SPIKES framework. Caregivers were asked how receiving a diagnosis could have been improved. Thematic analysis of qualitative data were performed.: A total of 180 surveys were completed. Mean age at diagnosis was 19.0 (SD 25.7) months. Most caregivers reported the healthcare provider was sympathetic and understanding (75%) and clear and direct (69%). Only 25% of caregivers recalled being directed to where to find information; only 37% reported being told what their child does well or is expected to do well. Thematic analysis revealed three themes: (1) less waiting, (2) more compassionate communication, and, (3) information and support to move forward: Caregivers wanted the diagnosis to be timely and provided with compassion. Requests for greater information on the diagnosis, available support, and their child's future, suggest that greater care to support families in the aftermath of receiving a diagnosis is also needed.
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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 | 0.005 | 0.016 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| 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".