29 A call for action - The lived experiences of caregivers of children diagnosed with Fetal Alcohol Spectrum Disorder during assessment and following diagnosis
Bibliographic record
Abstract
Abstract Background Individuals diagnosed with Fetal Alcohol Spectrum Disorder (FASD) have a heterogeneous range of neurodevelopmental impairments with lifelong impacts on functioning. In Canada, a FASD diagnosis is made through a multidisciplinary team assessment, using the 2015 Canadian FASD Diagnostic Guidelines. Studies show that early diagnosis and intervention reduces secondary FASD related disabilities and improves outcomes in adulthood. However, little has been published about accessibility of services and intervention for children diagnosed with FASD in Canada. Objectives The current study explores the lived experiences of caregivers in (1) undergoing a diagnostic assessment for FASD and (2) obtaining services and interventions for their child in the first two years following diagnosis. Using a qualitative approach, the study aimed to identify strengths and gaps in the system with respect to supporting Canadian children with FASD and their families. Design/Methods Seventy one (71) children were diagnosed with FASD/At Risk for FASD over a one year period at a tertiary Developmental Assessment Center in Canada. Through non-random convenience sampling, 18 caregivers (the child’s legal guardians: 1 biological parent, 9 adoptive parents, 6 family guardians and 2 social workers) consented to participate in semi-structured interviews. Interviews explored caregiver experiences with the FASD diagnostic process as well as access to supports and intervention services after diagnosis. Interviews were transcribed and analyzed using reflexive thematic analysis. Results The following overarching themes were identified: (1) The journey of raising a child with FASD is overwhelming for caregivers; (2) The assessment process was both affirming and disheartening for caregivers; (3) There are significant, multi-level, systemic barriers to accessing supports for children with FASD, and their caregivers; (4) Equity deserving caregivers and their children are particularly vulnerable to falling through the cracks of the medical, educational, and social systems. Within each theme, subthemes further highlight protective factors and specific gaps in the system in supporting children and their families with respect to early intervention, educational/vocational, community and family support. Conclusion Children newly diagnosed with FASD are falling through the cracks of our healthcare system. There are clear disparities in the accessibility of intervention and support for children with developmental differences, even with a diagnosis. Wrap around support is needed for children with FASD and their families, as soon as functional impairments are recognized. A formal funding and support system, based on function, is essential for all children with developmental differences - including children with FASD.
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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 | 0.007 | 0.013 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.022 | 0.011 |
| Scholarly communication | 0.006 | 0.004 |
| Open science | 0.002 | 0.010 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.003 | 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".