57 The family experience of the Autism Spectrum Disorder diagnostic conference: A qualitative meta-synthesis
Notice bibliographique
Résumé
Abstract Background The Canadian prevalence of Autism Spectrum Disorder (ASD) is one in 66 children affecting many families nationwide. Increasingly, clinicians are tasked with discussing new ASD diagnoses with families; however, many physicians are not comfortable with the conversation, despite self-reported familiarity with ASD. Concurrently, research indicates that families are often dissatisfied with their diagnostic journey, including the diagnostic conversation, which has been described as “profound to almost all parents” (Abbott et al., 2012). Given the importance of this moment, we applied a qualitative meta-synthesis design to gain a deeper understanding of the family experience. Meta-synthesis is an emerging field in health sciences, wherein a systematic search strategy is coupled with qualitative analysis. It is valuable for evidence-driven practices and policies as large volumes of qualitative literature are synthesized into actionable concepts. Objectives We aim to describe and appreciate the family experience of an ASD diagnostic conference. We define the diagnostic conference as is the meeting where children, parents, and/or families are told that the child has an ASD diagnosis. Design/Methods We conducted a systematic search to capture relevant qualitative studies, including all qualitative approaches and qualitative components of mixed-methods studies. A search strategy was developed by a medical librarian with systematic review expertise. An initial search of three databases was undertaken to identify keywords. These terms were then used in searching a wider array of pertinent databases. The search was not limited by dates. Applying Saini and Shlonsky’s (2012) meta-synthesis method, included studies’ demographic and contextual data will be extracted. “Findings/Results” sections of included articles will also be extracted and coded by two independent reviewers. Codes will be translated into themes by an interdisciplinary team of two to five reviewers applying an inductive and iterative process, with a critical disability theoretical lens. Themes will be integrated to form an overall synthesis of the family experience of the ASD diagnostic conference. Results In total, 1329 titles/abstracts were reviewed: 23 were selected for inclusion and 24 are pending team discussion. Preliminary analysis reflects shared concepts among included articles such as: provider-family rapport; conflict over who is the expert; comprehensiveness; language; body language; individuals present; physical space; elements of ASD emphasized (positive vs. negative); hope. Most studies were based in North America or Europe with Caucasian participants represented. Mothers were relatively over-represented as participants. In applying a critical disability theoretical lens, initial observations of the language of included studies present a negative framework for meaning making of an ASD diagnosis. Conclusion This meta-synthesis will provide an in-depth appreciation of the family experience of the ASD diagnostic conference and explore the context of published research. In doing so, it may inform individual clinician practices, medical education around communication, and family-centered-care policies.
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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 | 0,076 | 0,196 |
| Méta-épidémiologie (sens strict) | 0,002 | 0,001 |
| Méta-épidémiologie (sens large) | 0,006 | 0,014 |
| Bibliométrie | 0,018 | 0,014 |
| Études des sciences et des technologies | 0,002 | 0,002 |
| Communication savante | 0,005 | 0,005 |
| Science ouverte | 0,003 | 0,004 |
| Intégrité de la recherche | 0,002 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,008 | 0,001 |
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 ».