Une enquête auprès des parents avec enfants sur le spectre de l'autisme: expérience avec les services et les traitements

Aperçu: G.M.

Les troubles du spectre de l'autisme (TSA) sont des troubles du développement neurologique tout au long de la vie, et on sait peu de choses sur la façon dont les parents abordent la santé et les conséquences psychosociales des TSA. 

Cet article présente des méthodes pour créer des ressources de recherche sur l'autisme et décrit les services et les traitements utilisés par les enfants avec un diagnostic de TSA et pour leurs familles.

Les enfants des 1155 répondants étaient racialement et ethniquement divers (55% blancs, 6% noirs, 5% asiatiques, 9% multiraciaux, 24% hispaniques) et représentative de la population totale invitée à participer à l'égard du sexe chez les enfants (83% hommes ), l'âge de l'enfant (57% <10 ans) et le diagnostic de TSA (64% du trouble autiste).  

Les services et les traitements les plus fréquemment utilisés étaient les programmes d'éducation individualisés (85%), les visites de médecins de famille (78%) et l'orthophonie et les thérapies occupationnelles (55% et 60% respectivement). 

Les programmes à domicile comprenaient souvent la mise en œuvre de la formation en compétences sociales (44%) et la gestion du comportement (42%).  

L'utilisation de médicaments par prescription était élevée (48%).  

Les aidants ont signalé une perturbation des routines personnelles et familiales en raison de comportements problématiques. 

Perm J. 2017;21. doi: 10.7812/TPP/16-009.

A Survey of Parents with Children on the Autism Spectrum: Experience with Services and Treatments

Becerra TA¹, Massolo ML², Yau VM³, Owen-Smith AA⁴, Lynch FL⁵, Crawford PM⁶, Pearson KA⁷, Pomichowski ME⁸, Quinn VP⁹, Yoshida CK¹⁰, Croen LA¹¹.

Author information

1

Postdoctoral Research Fellow at the Department of Research & Evaluation for Kaiser Permanente Southern California in Pasadena. tracy.a.becerra@kp.org

2

Senior Research Project Manager for the Division of Research in Oakland, CA. maria.l.massolo@kp.org.

3

Former Staff Scientist for the Autism Research Program at the Division of Research in Oakland, CA. vincentmyau@gmail.com.

4

Behavioral Scientist and Assistant Professor in Health Management and Policy at Georgia State University in Atlanta. aowensmith@gsu.edu.

5

Health Economist and Senior Investigator at the Center for Health Research in Portland, OR. frances.lynch@kpchr.org.

6

Research Associate at the Center for Health Research in Portland, OR. phillip.m.crawford@kpchr.org.

7

Former Research Project Manager at the Center for Health Research in Portland, OR. kathryn.a.pearson@gmail.com.

8

Former Research Associate at the Department of Research & Evaluation for Kaiser Permanente Southern California in Pasadena. magdalena.e.pomichowski@kp.org.

9

Former Research Scientist II in the Department of Research & Evaluation for Kaiser Permanente Southern California in Pasadena. virginia.p.quinn@kp.org.

10

Data Consultant at the Division of Research in Oakland, CA. cathleen.k.yoshida@kp.org.

11

Senior Research Scientist at the Division of Research in Oakland, CA. lisa.a.croen@kp.org.

Abstract

INTRODUCTION:

Autism spectrum disorders (ASD) are lifelong neurodevelopmental disorders, and little is known about how parents address the health and psychosocial consequences of ASD. Few studies have examined use of various treatments and services in a large, diverse sample of children with ASD and their families.

OBJECTIVE:

This paper presents methods to create an autism research resource across multiple large health delivery systems and describes services and treatments used by children with ASD and their families.

METHODS:

Four study sites conducted a Web survey of parents of children and adolescents with ASD who were members of Kaiser Permanente. We tabulated data distributions of survey responses and calculated χ² statistics for differences between responders and nonresponders.

RESULTS:

The children of the 1155 respondents were racially and ethnically diverse (55% white, 6% black, 5% Asian, 9% multiracial, 24% Hispanic) and representative of the total population invited to participate with respect to child sex (83% male), child age (57% < 10 years), and ASD diagnosis (64% autistic disorder). The most frequently used services and treatments were Individualized Education Programs (85%), family physician visits (78%), and occupational and speech therapy (55% and 60%, respectively). Home-based programs frequently included implementation of social skills training (44%) and behavior management (42%). Prescription medication use was high (48%). Caregivers reported disruption of personal and family routines because of problem behaviors.

CONCLUSION:

These survey data help to elucidate parents' experiences with health services for their children with ASD and serve as a potential resource for future research.

PMID: 28488981

DOI: 10.7812/TPP/16-009