Expérience parentale d'un programme précoce de surveillance du développement pour l'autisme au sein de la médecine générale australienne : une étude qualitative

Titre original en anglais : Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Eapen, V., Winata, T., Gilbert, M., Nair, R., Khan, F., Lucien, A., Islam, R., Masi, A., Lam-Cassettari, C., Mendoza Diaz, A., Dissanayake, C., Karlov, L., Descallar, J., Eastwood, J., Hasan, I., Jalaludin, B., Kohlhoff, J., Liaw, S. T., Lingam, R.,..., & Barbaro, J. (2022). Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study. BMJ Open, 12(11), e064375. https://doi.org/10.1136/bmjopen-2022-064375

Date de publication: 01/11/2022 Ajout dans AutiHub: 07/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
23
Auteur·ices de la publication identifié·es comme autistes
1 / 23 (4,3 %)
  1. Valsamma Eapen
  2. Teresa Winata
  3. Melissa Gilbert
  4. Radhika Nair
  5. Feroza Khan
  6. Abbie Lucien
  7. Raisa Islam
  8. Anne Masi
  1. Christa Lam-Cassettari
  2. Antonio Mendoza Diaz
  3. Cheryl Dissanayake
  4. Lisa Karlov
  5. Joseph Descallar
  6. John Eastwood
  7. Iqbal Hasan
  8. Bin Jalaludin
  1. Jane Kohlhoff
  2. S. T. Liaw
  3. Raghu Lingam
  4. Natalie Ong
  5. Chun Wah Michael Tam
  6. Sue Woolfenden
  7. Josephine Barbaro *

Résumé

Objectifs Il a été démontré que la mise en œuvre précoce de soutien et de services au cours de la vie favorise des résultats développementaux positifs chez les enfants présentant une forte probabilité de troubles du développement, y compris l'autisme. Cette étude a examiné les expériences et les perceptions des parents/personnes s'occupant d'enfants concernant un parcours numérique de surveillance développementale pour l'autisme, le parcours de surveillance de l'autisme (ASP), et les soins habituels, le parcours de surveillance habituelle (SaU), dans le contexte des soins de santé primaires en médecine générale. Plan Cette étude qualitative a utilisé un processus de sélection de convenance à partir de l'échantillon complet de parents/personnes s'occupant d'enfants ayant participé au programme principal, « General Practice Surveillance for Autism », une étude d'essai contrôlé randomisé en grappes. Tous les entretiens ont été enregistrés en audio, transcrits et codés à l'aide du logiciel NVivo V.12. Une approche interprétative thématique inductive a été adoptée et les données ont été analysées thématiquement. Participants Douze parents/personnes s'occupant d'enfants avec ou sans trouble du développement/autisme, ayant participé au programme principal, dans le sud-ouest de Sydney et à Melbourne, ont été interrogés. Cadre Tous les entretiens ont été réalisés par téléphone. Résultats Sept thèmes principaux et 20 sous-thèmes ont été identifiés, comprenant des expériences positives, telles que les relations préexistantes entre patients et médecins ainsi que leurs perceptions de l'importance de connaître les soutiens/services précoces et d'y accéder. Les obstacles ou difficultés rencontrés lors de l'utilisation du parcours SaU comprenaient de longues périodes d'attente, une communication insuffisante et l'absence de plans d'action, la complexité liée à la navigation dans le système de santé et le manque de compréhension de la part des médecins généralistes (GPs). Les suggestions d'amélioration communes comprenaient une meilleure sensibilisation/éducation des parents/personnes s'occupant d'enfants et la disponibilité de ressources accessibles sur le développement de l'enfant pour les parents/personnes s'occupant d'enfants. Conclusion Les résultats soutiennent l'utilisation d'outils numériques de dépistage pour la surveillance du développement, y compris pour l'autisme, en utilisant des contacts opportunistes dans le contexte de la médecine générale. Numéro d'enregistrement de l'essai ANZCTR (ACTRN12619001200178).

Objectives Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents’/caregivers’ experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. Design This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, ‘General Practice Surveillance for Autism’, a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. Participants Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. Settings All interviews were completed over the phone. Results There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient–doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. Conclusion The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. Trial registration number ANZCTR (ACTRN12619001200178).

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 12/09/2026 18:18.

Références citées
57
Avec un DOI
39
Sans DOI, à partir du texte brut de la bibliographie
18
2 / 57 (3,5 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
18 / 57 (31,6 %)
Références avec noms d’auteurices détectés
39 / 57 (68,4 %)
Sans nom d’auteurice détecté
18
Sans titre structuré
17
Sans identifiant stable
17
Références avec noms bruts d’auteurices restant à vérifier
17
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
319
À partir du DOI ou de métadonnées externes
319
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
26
119 / 319 (37,3 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 200 / 319 (62,7 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
2 / 319 (0,6 %)
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 : 2 / 119 (1,7 %). Personnes distinctes identifiées comme autistes : 1 / 213 (0,5 %).
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