Exploring a child's developmental diagnosis: an interpretive description of parents' experiences in northern British Columbia
Bibliographic record
Abstract
Background: Full parental understanding of a child's diagnosis of a developmental disability is critical to be able to ensure the best health outcome for their child.Yet factors that parents perceive as influencing their comprehension during the final diagnostic meeting have not been well identified.Method: As part of a qualitative study using interpretive description, 17 parents were interviewed on the basis of their having been referred to, and for having received a child's developmental diagnosis from a Complex Developmental Behavioural multidisciplinary team located in northern British Columbia.Semi-structured interviews focused on the factors that played a role in facilitating or impeding the parents' understanding of their child's diagnosis, and on the identification of factors that influenced the way in which the child's clinical recommendations were pursued.The interviews were recorded and transcribed.Data analysis was informed by Braun and Clarke's six phases of thematic analysis.Results: Three overarching themes with twelve subthemes emerged from parents' reported experiences of receiving their child's developmental diagnosis.The three overarching themes and twelve subthemes included (a) clinical encounter (including the subthemes structural considerations, professional diversity and new insights, questions regarding the assessment process, validation, and expectations); (b) the manner of the delivery of the diagnosis (impact-emotional and impact on parenting practices, professionalism, professional language, and quantity of information); (c) Where do we go from here?(post disclosure, the final evaluation report, and recommendations).The parents' accounts established and clarified the positive and negative parental determinants that aided or challenged their ability to understand their child's developmental diagnosis and identified the influence this had when it came to implementing the clinical recommendations.iii Conclusions: Parents reported several factors played a role in facilitating or impeding their ability to comprehend their child's diagnosis.The risks and benefits associated with the child's recommendations extend beyond the medical exchange that occurred at the family disclosure meeting.The parents' narratives provided insight into a complex phenomenon.viii
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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 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.013 | 0.006 |
| Scholarly communication | 0.004 | 0.001 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| 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".