Skip to main content
Mijn bibliotheek
Ga naar:
Nieuws Boeken Tijdschriften Toetsvragen Web-tv Video Audio
Tips voor Mijn BSL
BSL Shop
Inloggen

Welkom bij Erasmus MC & Bohn Stafleu van Loghum

Erasmus MC heeft ervoor gezorgd dat je Mijn BSL eenvoudig en snel kunt raadplegen. Je kunt je links eenvoudig registreren. Met deze gegevens kun je thuis, of waar ook ter wereld toegang krijgen tot Mijn BSL.

» Andere revante producten voor Erasmus MC studenten en medewerkers.

Registreer

Om ook buiten de locaties van Erasmus MC, thuis bijvoorbeeld, van Mijn BSL gebruik te kunnen maken, moet je jezelf eenmalig registreren. Dit kan alleen vanaf een computer op een van de locaties van Erasmus MC.

Eenmaal geregistreerd kun je thuis of waar ook ter wereld onbeperkt toegang krijgen tot Mijn BSL.

Login

Als u al geregistreerd bent, hoeft u alleen maar in te loggen om onbeperkt toegang te krijgen tot Mijn BSL.

Inloggen
Top
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

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

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
Voetnoten
1
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.
 
2
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.)
 
3
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.
 
4
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.
 
Literatuur
Akshoomoff, N. A., & Stahmer, A. (2006). Early intervention programs and policies for children with autistic spectrum disorders. In H. E. Fitzgerald, B. M. Lester, & B. Zuckerman (Eds.), The crisis in youth mental health: Critical issues and effective programs, Vol. 1. childhood disorders (pp. 109–131). Westport, CT: Praeger.
All-Party Parliamentary Group on Autism. (2007). Policy into practice: Implementation of the national service framework for children, young people, and maternity services by local authorities. London, UK: The National Autistic Society.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, 4th edition, text revision. Washington, DC: American Psychiatric Publishing, Inc.CrossRef
Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51(6), 1173–1182.PubMedCrossRef
Barros, A. J. D., & Hirakata, V. N. (2003). Alternatives for logistic regression in cross-sectional studies: An empirical comparison of models that directly estimate the prevalence ratio. BMC Medical Research Methodology, 3(21), 1–13.
Blaxill, M. F. (2004). What’s going on? The question of time trends in autism. Public Health Reports, 119(6), 536–551.PubMedCrossRef
Boulet, S. L., Boyle, C., & Schieve, L. A. (2009). Health care use and health and functional impact of developmental disabilities among US children, 1997–2005. Archives of Pediatrics and Adolescent Medicine, 163(1), 19–26.PubMedCrossRef
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders. Autism, 8(4), 409–423.PubMedCrossRef
Brown, H. K., Ouellette-Kuntz, H., Hunter, D., & Kelley, E. (2010). Assessing need in school-aged children with an autism spectrum disorder. Research in Autism Spectrum Disorders, 4(4), 539–547.CrossRef
Bruininks, R. H., Woodcock, R. W., Weatherman, R. F., & Hill, B. K. (1996). Scales of independent behaviour-revised. Chicago, IL: Riverside.
Cassidy, A., McConkey, R., Truesdale-Kennedy, M., & Slevin, E. (2008). Preschoolers with autism spectrum disorders: The impact on families and the supports available to them. Early Childhood Development and Care, 178(2), 115–128.CrossRef
Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and empowering families: Principles and guidelines for practice. Cambridge, MA: Brookline Books, Inc.
Ellis, J. T., Luiselli, J. K., Amirault, D., Byrne, S., O’Malley-Cannon, B., Taras, M., et al. (2002). Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. Journal of Developmental and Physical Disabilities, 14(2), 191–202.CrossRef
Farmer, J. E., Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J. (2004). Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29(5), 355–367.PubMedCrossRef
Fombonne, E. (2005). The changing epidemiology of autism. Journal of Applied Research in Intellectual Disabilities, 18(4), 281–294.CrossRef
Granlund, M., & Roll-Pettersson, L. (2001). The perceived needs of support of parents and classroom teachers—a comparison of needs in two microsystems. European Journal of Special Needs Education, 16(3), 225–244.CrossRef
Hastings, R. P., & Brown, T. (2002). Behaviour problems of children with autism, parental self-efficacy, and mental health. American Journal on Mental Retardation, 107(3), 222–232.PubMedCrossRef
Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37(4), 748–759.PubMedCrossRef
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Paediatrics, 122(6), 1149–1158.CrossRef
Kohler, F. W. (1999). Examining the services received by young children with autism and their families: A survey of parent responses. Focus on Autism and Other Developmental Disabilities, 14(3), 150–158.CrossRef
Kreutzer, J. S., Serio, C. D., & Berquist, S. (1994). Family needs after brain injury: A quantitative analysis. Journal of Head Trauma Rehabilitation, 9(3), 104–115.CrossRef
Matson, J. L., & Nebel-Schwalm, M. (2007). Assessing challenging behaviours in children with autism spectrum disorders: A review. Research in Developmental Disabilities, 28(6), 567–579.PubMedCrossRef
McConachie, H. (1994). Implications of a model of stress and coping for services to families of young disabled children. Child: Care, Health and Development, 20(1), 37–46.CrossRef
National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., Levy, S. E., et al. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28, 235–258.PubMedCrossRef
Ouellette-Kuntz, H., Coo, H., Lam, M., Yu, C. T., Breitenbach, M. M., Hennessey, P. E., et al. (2009). Age at diagnosis of autism spectrum disorders in four regions of Canada. Canadian Journal of Public Health, 100(4), 268–273.
Ruble, L. A., Hefflinger, C. A., Renfrew, W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum disorders in medicaid managed care. Journal of Autism and Developmental Disorders, 35(1), 3–13.PubMedCrossRef
SAS Institute Inc. (2008). SAS/STAT 9.2 User’s Guide. Cary, NC: SAS Institute Inc.
Saulnier, C. A., & Klin, A. (2007). Brief report: Social and communication abilities and disabilities in higher functioning individuals with autism and Asperger syndrome. Journal of Autism and Developmental Disorders, 37(4), 788–793.PubMedCrossRef
Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–933.PubMedCrossRef
Sobel, M. E. (1982). Asymptotic confidence intervals for indirect effects of structural equation models. Sociological Methodology, 13, 290–312.CrossRef
Stein, R. E. K., & Jessop, D. J. (2003). The impact on family scale revisited: Further psychometric data. Developmental and Behavioural Paediatrics, 24(1), 9–16.CrossRef
Stein, R. E. K., & Riessman, C. K. (1980). The development of an impact-on-family scale: Preliminatry findings. Medical Care, 18(4), 465–472.PubMedCrossRef
Thomas, K. C., Morrissey, J. P., & McLaurin, C. (2007). Use of autism-related services by families and children. Journal of Autism and Developmental Disorders, 37(5), 818–829.PubMedCrossRef
Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability, 29(1), 16–26.CrossRef
Van Ness, P. H., & Allore, H. G. (2006). Using SAS to investigate effect modification. SAS Users Group International Proceedings, 31, 1–10.
Waaland, P. K., Burns, C., & Cockrell, J. (1993). Evaluation of needs of high- and low-income families following pediatric traumatic brain injury. Brain Injury, 7(2), 135–146.PubMedCrossRef
Warfield, M. E., & Gulley, S. (2006). Unmet need and problems accessing specialty medical and related services among children with special health care needs. Maternal and Child Health Journal, 10(2), 201–216.PubMedCrossRef
Metagegevens
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

Andere artikelen Uitgave 10/2011

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

  • Letter to the Editor

Brief Report: Teaching Situation-Based Emotions to Children with Autistic Spectrum Disorder

  • Brief Report

Functional Assessment and Behavioural Intervention for Eating Difficulties in Children with Autism: A study Conducted in the Natural Environment Using Parents and ABA Tutors as Therapists

  • Original Paper

Effects of a Family-Implemented Treatment on the Repetitive Behaviors of Children with Autism

  • Original Paper

No Proprioceptive Deficits in Autism Despite Movement-Related Sensory and Execution Impairments

  • Original Paper

Modified Checklist for Autism in Toddlers: Cross-Cultural Adaptation and Validation in Spain

  • Original paper