11 Provider perspectives on FASD diagnostic practices
Notice bibliographique
Résumé
Abstract Background Fetal Alcohol Spectrum Disorder (FASD) is a diagnosis associated with complex, varied, and significant neurodevelopmental impairments. The clinical picture is frequently complicated by biopsychosocial and societal factors, as well as significant stigma. Furthermore, the referral and assessment process has historically been fraught with inequities, biases, and barriers to diagnosis, services, and supports. In Canada, FASD assessment often occurs through a time and resource intensive multidisciplinary assessment process. Objectives The purpose of our study is to better understand and document the experiences and unique challenges facing providers involved in FASD assessments, as well as collect proposed solutions to improve the process. Design/Methods Participants included clinicians involved in publicly funded FASD assessments in a Canadian provincial system, including developmental paediatricians, speech and language pathologists, psychologists, social workers, occupational therapists, nurse clinicians, case managers and general paediatricians. A total of 6 focus groups and 10 interviews (N=24) were conducted in April 2024 through July 2024. Seven participants also completed an anonymous follow-up survey which was included in the data analysis. The focus groups, interviews, and surveys explored clinicians’ experiences with the FASD diagnostic process, challenges they may face, approaches to cultural safety, and suggestions for improvement. Transcripts from the focus groups, interviews and surveys were analyzed using reflexive thematic analysis. This approach allows for engagement with the data while critically and transparently examining the perspectives and experiences that influence the knowledge generation process. Results Participants described the following: (1) finding the diagnostic label of FASD to be problematic, as many struggled with solely attributing a child’s developmental and behavioural challenges to prenatal alcohol exposure and worried about harm to birth mothers/families; (2) ethical dilemmas, such as confirming prenatal alcohol exposure and historical biases; (3) challenges and inconsistencies applying the Canadian diagnostic guidelines. Many clinicians expressed a desire to move towards a functional based approach to better describe and support complex children and youth with perinatal alcohol exposure. Conclusion Clinicians involved in FASD diagnostic assessments described feelings of frustration around the current diagnostic process and some hesitancy diagnosing children with FASD - pointing towards experiences of moral distress. There was considerable interest from participants to move toward a more function-based approach to diagnoses and recommendations for supports for children with prenatal alcohol exposure. Further studies are needed to examine the perspectives and lived experiences of youth and adults who have been diagnosed with FASD.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
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 | 0,011 | 0,046 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,006 | 0,003 |
| Communication savante | 0,004 | 0,002 |
| Science ouverte | 0,001 | 0,004 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,007 | 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 ».