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Journal of Autism and Developmental Disorders

Gepubliceerd in:

01-10-2006 | Original Paper

Assessing Need for Social Support in Parents of Children with Autism and Down Syndrome

Auteurs: Susan Siklos, Kimberly A. Kerns

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 7/2006

Abstract

Parents of children with autism frequently turn to the service delivery system to access supports designed to help adapt to the challenges of having a child with a life-long impairment. Although studies have suggested various supports and coping strategies that are effective for adapting, few studies have examined parents’ own perceptions of needs, and whether parents felt their needs were being met. In the present study the Family Needs Questionnaire (FNQ; Waaland et al., 1993) was modified to address needs for children with developmental disorders. A sample of fifty-six parents of children with autism and a comparison group of thirty-two parents of children with Down syndrome completed the FNQ. The groups did not differ significantly on the number of important needs reported nor the number of important needs being met. However, the two groups differed in the types of supports they most frequently endorsed as Important or Unmet.

vorige artikel Patterns of Reading Ability in Children with Autism Spectrum Disorder

volgende artikel Social Escape Behaviors in Children with Fragile X Syndrome

Agosta, J. (1989). Using cash assistance to support family efforts. In Singer G. H., Irvin L. K. (ed.), Support for caregiving families: enabling positive adaptation to disability. Baltimore: Paul H. Brookes.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed. – text revision). Wahington, DC: Author.

Arvidsson, T., Danielsson, B., Forsberg, P., Gillberg, C., Johansson, M., & Kjellgren, G. (1997). Autism in 3- to 6-year-old children in a suburb of Goeteborg, Sweden. Autism, 1, 694–702.CrossRef

Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694–702.PubMedCrossRef

Berumont, S. K., Rutter, M., Lord, C., Pickles, A., & Bailey, A. (1999). Autism screening questionnaire: diagnostic validity. British Journal of Psychiatry, 175, 444–451.

Bristol, M. (1984). Family resources and successful adaptation to autistic children. In E. Schopler, G. B. Mesibov (Eds.), The effects of autism on the family. (pp. 289–310). New York: Plenum Press.

Bristol, M. M. (1987). Mothers of children with autism of communication disorders: successful adaptation and the double ABCX model. Journal of Autism and Developmental Disorders, 17(4), 469–486.PubMedCrossRef

Bristol, M. M., Gallagher, J.J., & Schopler, E. (1988). Mothers and fathers of young developmentally disabled and nondisabled boys: adaptation and spousal support. Developmental Psychology, 24(3), 441–451.CrossRef

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285(24), 3093–3099.PubMedCrossRef

Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine, 38, 300–314.PubMed

Donenberg, G., & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21(2), 179–198.PubMedCrossRef

Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: maternal perceptions. American Journal on Mental Retardation, 92(6), 502–509.PubMed

Ehlers, S., Gillberg, C., & Wing, L. (1999). A screening questionnaire for Asperger syndrome and other high-functioning autism spectrum disorders in school age children. Journal of Autism and Developmental Disorders, 29(2), 129–141.PubMedCrossRef

Erwin, W. J., & Wheelright, L. A. (2002). Improving mail survey response rates through the use of a monetary incentive. Journal of Mental Health Counseling, 24(3), 247–255.

Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Jr., Dawson, G., Gordon, B., Gravel, J. S., Johnson, C. P., Kallen, R. J., Levy, S. E., Minshew, N. J., Prizant, B. M., Rapin, I., Rogers, S. J., Stone, W. L., Teplin, S., Tuchman, R. F., & Volkmar, F. R. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6), 439–484.PubMedCrossRef

Fisman, S., & Wolf, L. (1991). The handicapped child: psychological effects of parental, marital, and sibling relationships. Psychiatric Clinics of North America, 14(1), 199–217.PubMed

Fombonne, E. (2001). Is there an epidemic of autism? Pediatrics, 107, 411–413.PubMedCrossRef

Freedman, R. I., & Boyer, N. C. (2000). The power to choose: supports for families caring for individuals with developmental disabilities. Health and Social Work, 25(1), 59–68.

Henderson, D., & Vandenberg, B. (1992). Factors influencing adjustment in the families of autistic children. Psychological Reports, 71, 167–171.PubMedCrossRef

Hill, R. (1949). Families under stress. New York: Harper.

Honda, H., Shimizu, Y., Misumi, K., Niimi, M., & Ohashi, Y. (1996). Cumulative incidence and prevalence of childhood autism in children in Japan. British Journal of Psychiatry, 169(2), 228–235.PubMedCrossRef

Kadesjo, B., Gillberg, C., & Hagberg, B. (1999). Autism and Asperger syndrome in seven-year-old children: a total population study. Journal of Autism and Developmental Disorders, 29, 327–331.PubMedCrossRef

Konstantareas, M. K. (1991). Autistic, learning disabled and delayed children’s impact on their parents. Canadian Journal of Behavioural Science, 23(3), 358–375.CrossRef

Konstantareas, M. M., & Homatidis, S. (1989). Assessing child symptom severity and stress in parents of autistic children. Journal of Child Psychology and Psychiatry, 30(3), 459–470.PubMedCrossRef

Kreutzer, J. S., Complair, P., & Waaland, P. (1988). The family needs questionnaire. Richmond, VA: Rehabilitation Research and Training Center on Severe Traumatic Brain Injury, Medical College of Virginia.

Kreutzer, J. S., Serio, C. D., & Bergquist, S. (1994). Family needs after brain injury: a quantitative analysis. Journal of Head Trauma Rehabilitation, 9(3), 104–115.CrossRef

Krug, D. A., Arick, J. R., & Almond, P. J. (1980). Behavior checklist for identifying severely handicapped individuals with high levels of autistic behavior. Journal of Child Psychology and Psychiatry, 21, 221–229.PubMedCrossRef

Lezak, M. D. (1988). Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology, 10(1), 111–123.PubMedCrossRef

Liwag, M. E. C. D. (1989). Mothers and fathers of autistic children: an exploratory study of family stress and coping. Philippine Journal of Psychology, 22, 3–16.

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9.PubMedCrossRef

McCubbin, H. I., & Patterson, J. (1983). The family stress process: the double ABCX model of adjustment and adaptation. Marriage and Family Review, 6(1–2), 7–37.CrossRef

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97(4), 359–372.PubMed

Milgram, N. A., & Atzil, M. (1988). Parenting stress in raising autistic children. Journal of Autism and Developmental Disorders, 18(3), 415–424.PubMedCrossRef

Morgan, S. B. (1988). The autistic child and family functioning: a developmental-family systems perspective. Journal of Autism and Developmental Disorders, 18(2), 263–280.PubMedCrossRef

Phillips, K. M., & Brandon, T. H. (2004). Do psychologists adhere to the clinical practice guidelines for tobacco cessation? A survey of practitioners. Professional Psychology: Research and Practice, 35(3), 281–285.CrossRef

Rodrigue, J. R., Morgan, S. B., & Geffken, G. R. (1992). Psychosocial adaptation of fathers of children with autism, Down syndrome, and normal development. Journal of Autism and Developmental Disorders, 22(2), 249–263.PubMedCrossRef

Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: implications for intervention. Child and Family Behavior Therapy, 19(4), 15–32.CrossRef

Serio, C. D., Kreutzer, J. S., & Witol, A. D. (1997). Family needs after traumatic brain injury: a factor analytic study of the Family Needs Questionnaire. Brain Injury, 11(1), 1–9.PubMedCrossRef

Siegel, B. (1996). The world of the autistic child: understanding and treating autistic spectrum disorders. New York, NY: Oxford University Press.

Tunali, B., & Power T. G. (1993). Creating satisfaction: a psychological perspective on stress and coping in families of handicapped children. Journal of Child Psychology and Psychiatry, 34(6), 945–947.PubMedCrossRef

Waaland, P. K., Burns, C., & Cockrell, J. (1993). Evaluation of needs of high- and low-income families following paediatric traumatic brain injury. Brain Injury, 7(2), 135–146.PubMedCrossRef

White, C., Kouimtsidis, C., D’Souza, M., Freeman, H., Grau, M., Saunders, U., Toosey, T., Trompetas, A., Wake, M., Annan, J., & Ghodse, H. (2002). Substance misuse services in primary health care. Drugs: Education, Prevention, and Policy, 9(3), 305–310.CrossRef

Wing, L. (1988). The continuum of autistic characteristics. In E. Schopler, G. B. Mesibov (Eds.), Diagnosis and assessment in autism. New York: Plenum Press.

Witol, A. D., Sander, A. M., & Kreutzer, J. S. (1996). A longitudinal analysis of family needs following traumatic brain injury. Neurorehabilitation, 7, 175–187.CrossRef

Wolf, L. C., Noh, S., Fisman, S. N., & Speechley, M. (1989). Brief report: psychological effects of parenting stress on parents of autistic children. Journal of Autism and Developmental Disorders, 19(1), 157–166.PubMedCrossRef

Wortman, C. (1984). Social support and the cancer patient: conceptual and methodological issues. Cancer, 53(2), 339–360.

Titel: Assessing Need for Social Support in Parents of Children with Autism and Down Syndrome
Auteurs: Susan Siklos
Kimberly A. Kerns
Publicatiedatum: 01-10-2006
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 7/2006
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-006-0129-7

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