29 A call for action - The lived experiences of caregivers of children diagnosed with Fetal Alcohol Spectrum Disorder during assessment and following diagnosis
Notice bibliographique
Résumé
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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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,007 | 0,013 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,022 | 0,011 |
| Communication savante | 0,006 | 0,004 |
| Science ouverte | 0,002 | 0,010 |
| Intégrité de la recherche | 0,002 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».