Measuring the Parental, Service and Cost Impacts of Children with Autistic Spectrum Disorder: A Pilot Study
Référence bibliographique 
Jarbrink, Krister, Fombonne, Eric et Knapp, Martin. 2003. «Measuring the Parental, Service and Cost Impacts of Children with Autistic Spectrum Disorder: A Pilot Study ». Journal of Autism and Developmental Disorders, vol. 33, no 4, p. 395-402.
Intentions : « The aim of this study was to carry out a preliminary examination of a research instrument developed specifically to collect cost information for individuals with autistic spectrum disorder. » (p. 395)
Échantillon/Matériau : « In order to pilot the schedule, a small sample of respondents was recruited from Greater London, Surrey and Sussex with the help of PACE (Parents’ Autism Campaign for Education), a parental organisation. Twenty parents known to PACE were sent letters […] inviting them to join the study. » (p. 396) « Sixteen parents responded to our invitation to participate in this pilot exercise and returned the consent form. It was not possible to arrange a meeting with one of the parents, and so 15 were included in the study. Information was collected for 17 children as two families had more than one child with autistic spectrum disorder. » (p. 397)
Instruments : « A questionnaire was developed from the Client Service Receipt Inventory (CSRI) […]. The purpose of the CSRI is to collect detailed information on the client’s service use and family support in order to estimate component and total costs. » (p. 396)
Type de traitement des données : Analyse statistique
« The development of resource-intensive behavioural therapies for children with autistic spectrum disorder has focused attention on the need to understand the costs of supporting people with autism and also on the need for studies of the cost-effectiveness of different interventions. » (p. 395) « There is very little cost information on children or adults with autism or autism-related disorder, and no study appears to have carried out a specific cost collection in this area. Although some global cost estimates can be made, little is known about the cost implications of parental burden. By using different techniques to collect indirect costs, the study outlines a functional methodology. Results from this small pilot study point to considerable economic burden for parents and give some indication of the associated costs of autistic spectrum disorder. » (p. 395)