11 Exploring the Impact of COVID-19 on Families of Children with Developmental Disabilities: A Community-Based Formative Study
Notice bibliographique
Résumé
Abstract Primary Subject area Developmental Paediatrics Background The COVID-19 pandemic has impacted every facet of society but has been particularly disastrous for families of children with developmental disabilities (DD) living on the margins. The unprecedented repercussions of COVID-19, including quarantine, social distancing, and service restrictions, continue to disproportionately impact these families. This is a pattern observed in previous humanitarian crises, where there has been a lack of response for children with DD. There is an urgent need to understand the experiences of families of children with DD in order to develop a community-driven model of service provision. Objectives This study aims to identify the experienced impact of COVID-19 on families of children with DD who have significant needs and social barriers. Design/Methods This was a community-based participatory study using a formative research framework in accordance with COREQ guidelines. In-depth interviews (IDIs) were conducted with caregivers and care providers of children with DD. Data were recorded, transcribed, and coded using deductive and inductive coding methods by three independent coders. A peer debriefing strategy was used to verify the coding approach and interpretation of findings in accordance with the RATS (relevancy, appropriateness, transparency, and soundness) guidelines for qualitative research. Perceived parental stress and social support were explored using the Perceived Stress Scale (PSS-10) and Multidimensional Scale of Perceived Social Support (MSPSS). Results A total of 25 IDIs were conducted. Of the 15 caregivers interviewed, five were new to Canada. Results suggested both newcomer and non-newcomer families of children with DD are in crisis, reporting high stress and low social support, with increased difficulties navigating and accessing therapies and programs, including those offered virtually. Participants reported behavioural regressions and increased anxiety among their children with DD, as well as caregiver mental health challenges. Providers reported having to change their service delivery model in accordance with public health recommendations, but caregivers said that they were not included in these decisions. Conclusion Families of children with DD face extraordinary barriers to care, which may be further compounded by the COVID-19 pandemic. Our study demonstrates the value of community-informed design, particularly in the setting of the COVID-19 pandemic. To deliver truly patient-centred services during the pandemic, there is an urgent need for responsive programming that is built with patients, for patients.
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 | 0,017 | 0,026 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,004 | 0,003 |
| Études des sciences et des technologies | 0,012 | 0,005 |
| Communication savante | 0,004 | 0,003 |
| Science ouverte | 0,003 | 0,007 |
| Intégrité de la recherche | 0,002 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 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 ».