Accès des familles à l’intervention précoce et aux soutiens destinés aux enfants présentant des handicaps développementaux

Titre original en anglais : Families’ Access to Early Intervention and Supports for Children With Developmental Disabilities

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Sapiets, S. J., Hastings, R. P., Stanford, C., & Totsika, V. (2022). Families’ Access to Early Intervention and Supports for Children With Developmental Disabilities. Journal of Early Intervention, 45(2), 103-121. https://doi.org/10.1177/10538151221083984

Date de publication: 08/04/2022 Ajout dans AutiHub: 18/10/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Suzi Jayne Sapiets *
  2. Richard P. Hastings
  3. Catherine Stanford
  4. Vasiliki Totsika

Résumé

La prestation d’intervention précoce (EI) est essentielle pour les familles ayant des enfants présentant des handicaps développementaux (DD), mais les données existantes suggèrent que l’accès à l’EI n’est pas toujours simple. L’objectif de cette étude était de fournir une description complète de l’accès à divers soutiens d’EI (p. ex., professionnels, services, interventions) pour les familles de jeunes enfants présentant des DD suspectés ou diagnostiqués dans l’ensemble du Royaume-Uni, et d’examiner la facilité perçue d’accès au soutien, les besoins non satisfaits en matière de soutien, ainsi que les obstacles et facilitateurs de l’accès au soutien. Au total, 673 parents aidants d’enfants âgés de 0 à 6 ans présentant des DD suspectés ou diagnostiqués (p. ex., retard de développement, déficience intellectuelle, autisme) ont répondu anonymement à notre enquête. Dans les domaines de l’éducation, de la santé et de l’aide sociale, les services les plus fréquemment utilisés étaient la pédiatrie (N = 569, 84,5 %), l’orthophonie (N = 567, 84,2 %) et la médecine générale (N = 530, 78,8 %). Cependant, seulement 18,9 % (N = 127) ont eu accès à des interventions sous forme de programmes. Plus des trois quarts (N = 508, 75,5 %) ont signalé un besoin non satisfait de soutien précoce, indiquant un décalage entre la disponibilité et la capacité des services et la demande de soutien. Les parents ont également signalé des obstacles fréquents (p. ex., services faisant obstacle et professionnels peu utiles) et des facilitateurs (p. ex., professionnels soutenants et compétents, facteurs parentaux facilitants) de l’accès. Les implications pour les politiques, la pratique et la recherche sont examinées.

Early intervention (EI) provision is critical for families who have children with developmental disabilities (DD), but existing evidence suggests accessing EI is not always straightforward. The purpose of this study was to provide a comprehensive description of access to various EI supports (e.g., professionals, services, interventions) for families of young children with suspected or diagnosed DD across the United Kingdom and to investigate perceived ease of access to support, unmet need for support, and barriers and facilitators of access to support. Overall, 673 parental caregivers of children aged 0 to 6 years with suspected or diagnosed DD (e.g., developmental delay, intellectual disability, autism) completed our survey anonymously. Across education, health, and social care, services accessed the most were pediatrics (N = 569, 84.5%), speech and language (N = 567, 84.2%), and general medical practice (N = 530, 78.8%). However, only 18.9% (N = 127) accessed packaged interventions. More than three-quarters (N = 508, 75.5%) reported an unmet need for early support, indicating a mismatch between the availability and capacity of services and demand for support. Parents also reported common barriers (e.g., obstructive services and unhelpful professionals) and facilitators (e.g., supportive and competent professionals, enabling parent factors) of access. Implications for policy, practice, and research are discussed.

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Références citées
69
Avec un DOI
59
Sans DOI, à partir du texte brut de la bibliographie
10
3 / 69 (4,3 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
10 / 69 (14,5 %)
Références avec noms d’auteurices détectés
59 / 69 (85,5 %)
Sans nom d’auteurice détecté
10
Sans titre structuré
10
Sans identifiant stable
10
Références avec noms bruts d’auteurices restant à vérifier
10
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
273
À partir du DOI ou de métadonnées externes
273
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
11
62 / 273 (22,7 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 211 / 273 (77,3 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
3 / 273 (1,1 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 3 / 62 (4,8 %). Personnes distinctes identifiées comme autistes : 3 / 250 (1,2 %).
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