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Journal of Autism and Developmental Disorders

Gepubliceerd in:

01-10-2011 | Original Paper

Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs

Auteurs: Hilary K. Brown, Hélène Ouellette-Kuntz, Duncan Hunter, Elizabeth Kelley, Virginie Cobigo, Miu Lam

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 10/2011

Abstract

High demand has resulted in gaps in autism service provision. Our objective was to explore the association between children’s functioning and parents’ perceived unmet needs. We conducted a cross-sectional study of 97 families of school-aged children with an autism spectrum disorder. Log binomial regression was used to examine the relative risk for unmet need. Families of children with high functional independence had lower unmet need than families of children with moderate functional independence (RR = 0.81, 95% CI = 0.67-0.99). Those who experienced greater impact of the child’s disability had greater unmet need (RR = 1.22, 95% CI = 1.03–1.45). The child’s functioning and its impact on the family provide insight into unmet need which may inform service planning.

volgende artikel Comparison of Behavioral Intervention and Sensory-Integration Therapy in the Treatment of Challenging Behavior

Although not included in the Diagnostic and Statistical Manual of Mental Disorders IV-TR (American Psychiatric Association 2000) definition of autism, “autism spectrum disorder” is a general diagnosis often used by clinicians in Canada. It is synonymous with pervasive developmental disorder-not otherwise specified, and is given to children who do not meet the full criteria for autistic disorder.

One parent’s data was excluded from the analysis because the parent reported 100% unmet need (number of unmet needs was equal to number of important needs). This results in a proportion of 1.00, which is not supported by the regression analysis used. (Values must be between 0.01 and 0.99.)

Evaluation of the Pearson’s Chi square statistic divided by the degrees of freedom revealed that there was overdispersion in the model (i.e., the standard errors of the parameter estimates were underestimated, resulting in high Type I error). Therefore, a multiplicative overdispersion factor (scale = pearson) was added to the model, whereby the covariance matrix was multiplied by a dispersion parameter (in this case, the square root of [Pearson’s Chi square divided by the degrees of freedom]) (SAS Institute Inc. 2008). This factor inflates the standard errors, making tests of statistical significance more conservative.

Unlike other regions, NEDSAC staff do not have direct contact with Manitoba database members and rely on service delivery staff to recruit families. Due to the inability to gain the involvement of this service agency in the study, the entire group of families in the database could not be invited. Instead, an incomplete list was used of families from Manitoba who were also involved in the ASD-CARC Research Registry.

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Titel: Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs
Auteurs: Hilary K. Brown
Hélène Ouellette-Kuntz
Duncan Hunter
Elizabeth Kelley
Virginie Cobigo
Miu Lam
Publicatiedatum: 01-10-2011
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 10/2011
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-010-1148-y

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