Skip to main content
Top
Gepubliceerd in:

27-04-2017 | Original Paper

A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder

Auteurs: Amelia N. Gibson, Samantha Kaplan, Emily Vardell

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 7/2017

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

Abstract

For parents of children with an Autism spectrum disorder (ASD), high quality, easily accessible information and a strong peer network can be the key to raising a happy, healthy child, and maintaining family well-being and emotional resilience. This article reports the findings of an anonymous survey examining the information source preferences for 935 parents of individuals with ASDs in North Carolina. Data indicates that parents show similar information seeking patterns across the age spectrum, that availability of information (as indicated by overall information source selection) decrease as children age. It also shows that parents rely heavily on local sources of information, preferring them to nonlocal sources (such as the internet) for many types of information.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Voetnoten
1
The University of North Carolina TEACCH Autism Program provides clinical services, parent training, counseling, and support to people with Autism and their parents in North Carolina through a system of community regional centers. (UNC School of Medicine 2016).
 
Literatuur
go back to reference Akin, L., & MacKinney, D. (2004). Autism, literacy, and libraries: The 3 Rs = Routine, repetition, and redundancy. Children & Libraries, 2(2), 35–43. Akin, L., & MacKinney, D. (2004). Autism, literacy, and libraries: The 3 Rs = Routine, repetition, and redundancy. Children & Libraries, 2(2), 35–43.
go back to reference Centers for Disease Control and Prevention (CDC). (2014). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report. Surveillance Summaries, 63(2), 1–21. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/24670961. Centers for Disease Control and Prevention (CDC). (2014). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report. Surveillance Summaries, 63(2), 1–21. Retrieved from http://​www.​ncbi.​nlm.​nih.​gov/​pubmed/​24670961.
go back to reference Charmaz, K. (2014). Constructing grounded theory (2nd ed.). London: Sage. Charmaz, K. (2014). Constructing grounded theory (2nd ed.). London: Sage.
go back to reference Flaherty, M. G. (2013). Consumer health information provision in rural public libraries: A comparison of two library systems. The Library, 83(2), 155–165. doi:10.1086/669548.CrossRef Flaherty, M. G. (2013). Consumer health information provision in rural public libraries: A comparison of two library systems. The Library, 83(2), 155–165. doi:10.​1086/​669548.CrossRef
go back to reference Gibson, A. N. (2014). A better place? Factors in community assessment for parents of children with Down syndrome. Proceedings of the American Society for Information Science and Technology, 51(1), 1–10.CrossRef Gibson, A. N. (2014). A better place? Factors in community assessment for parents of children with Down syndrome. Proceedings of the American Society for Information Science and Technology, 51(1), 1–10.CrossRef
go back to reference Gibson, A. N. (2016). Building a progressive-situational model of post-diagnosis information seeking for parents of individuals with down syndrome. Global Qualitative Nursing Research, 3, 2333393616680967. doi:10.1177/2333393616680967. Gibson, A. N. (2016). Building a progressive-situational model of post-diagnosis information seeking for parents of individuals with down syndrome. Global Qualitative Nursing Research, 3, 2333393616680967. doi:10.​1177/​2333393616680967​.
go back to reference Grant, N., Rodger, S., & Hoffmann, T. (2016). Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child, 42(1), 125–134. Grant, N., Rodger, S., & Hoffmann, T. (2016). Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child, 42(1), 125–134.
go back to reference Halvorson, H. (2006). Asperger’s syndrome: How the public library can address these special needs. Children and Libraries, 4(3), 19–27. Halvorson, H. (2006). Asperger’s syndrome: How the public library can address these special needs. Children and Libraries, 4(3), 19–27.
go back to reference King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child, 32(3), 353–369. doi:10.1111/j.1365-2214.2006.00571.x. King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child, 32(3), 353–369. doi:10.​1111/​j.​1365-2214.​2006.​00571.​x.
go back to reference Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447–1453.CrossRef Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447–1453.CrossRef
go back to reference Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., ... & Shattuck, P. T. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. doi:10.2105/AJPH.2007.131243.CrossRefPubMedPubMedCentral Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., ... & Shattuck, P. T. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. doi:10.​2105/​AJPH.​2007.​131243.CrossRefPubMedPubMedCentral
go back to reference Nazneen, N., Rozga, A., Smith, C. J., Oberleitner, R., Abowd, G. D., & Arriaga, R. I. (2015). A novel system for supporting autism diagnosis using home videos: Iterative development and evaluation of system design. JMIR mHealth and uHealth, 3(2), e68. doi:10.2196/mhealth.4393.CrossRefPubMedPubMedCentral Nazneen, N., Rozga, A., Smith, C. J., Oberleitner, R., Abowd, G. D., & Arriaga, R. I. (2015). A novel system for supporting autism diagnosis using home videos: Iterative development and evaluation of system design. JMIR mHealth and uHealth, 3(2), e68. doi:10.​2196/​mhealth.​4393.CrossRefPubMedPubMedCentral
go back to reference Ouellette-Kuntz, H. M., Coo, H., Lam, M., Yu, C. T., Breitenbach, M. M., Hennessey, P. E., ... & Crews, L. R. (2009). Age at diagnosis of autism spectrum disorders in four regions of Canada. Canadian Journal of Public Health, 100(4), 268–273. http://www.jstor.org/stable/41995266. Ouellette-Kuntz, H. M., Coo, H., Lam, M., Yu, C. T., Breitenbach, M. M., Hennessey, P. E., ... & Crews, L. R. (2009). Age at diagnosis of autism spectrum disorders in four regions of Canada. Canadian Journal of Public Health, 100(4), 268–273. http://​www.​jstor.​org/​stable/​41995266.
go back to reference Pifalo, V., Hollander, S., Henderson, C. L., DeSalvo, P., & Gill, G. P. (1997). The impact of consumer health information provided by libraries: The Delaware experience. Bulletin of the Medical Library Association, 85(1), 16.PubMedPubMedCentral Pifalo, V., Hollander, S., Henderson, C. L., DeSalvo, P., & Gill, G. P. (1997). The impact of consumer health information provided by libraries: The Delaware experience. Bulletin of the Medical Library Association, 85(1), 16.PubMedPubMedCentral
go back to reference Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental disorders, 33(4), 383–394.CrossRefPubMed Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental disorders, 33(4), 383–394.CrossRefPubMed
go back to reference Rodrigue, J., Morgan, S., & Geffken, G. (1992). Psychosocial adaptation of fathers of children with autism, down syndrome, and normal development. Journal of Autism and Developmental Disorders, 22(2), 249–263. doi:10.1007/BF01058154.CrossRefPubMed Rodrigue, J., Morgan, S., & Geffken, G. (1992). Psychosocial adaptation of fathers of children with autism, down syndrome, and normal development. Journal of Autism and Developmental Disorders, 22(2), 249–263. doi:10.​1007/​BF01058154.CrossRefPubMed
go back to reference Sonnenwald, D. H., Wildemuth, B. M., & Harmon, G. L. (2001). A research method using the concept of information horizons. An example from a study of lower socio-economic students' information seeking behavior. The New Review of Information Behaviour, 2, 65–86. Sonnenwald, D. H., Wildemuth, B. M., & Harmon, G. L. (2001). A research method using the concept of information horizons. An example from a study of lower socio-economic students' information seeking behavior. The New Review of Information Behaviour, 2, 65–86.
go back to reference Twombly, E. C., Holtz, K. D., & Daub-Sychra, A. (2011). Exploring the use of the internet by caregivers of people with autism spectrum disorders to obtain caregiving information. Journal of Consumer Health on the Internet, 15(1), 32–42. doi:10.1080/15398285.2011.547072.CrossRef Twombly, E. C., Holtz, K. D., & Daub-Sychra, A. (2011). Exploring the use of the internet by caregivers of people with autism spectrum disorders to obtain caregiving information. Journal of Consumer Health on the Internet, 15(1), 32–42. doi:10.​1080/​15398285.​2011.​547072.CrossRef
go back to reference Walker, C. G. (2009). Seeking information: A study of the use and understanding of information by parents of young children. Journal of Information Literacy, 3(2), 53–63. doi:10.11645/3.2.214.CrossRef Walker, C. G. (2009). Seeking information: A study of the use and understanding of information by parents of young children. Journal of Information Literacy, 3(2), 53–63. doi:10.​11645/​3.​2.​214.CrossRef
go back to reference Winson, G., & Adams, C. (2010). Collaboration at its best: Library and autism programs combine to serve special audience. Children & Libraries, 8(2), 15–17. Winson, G., & Adams, C. (2010). Collaboration at its best: Library and autism programs combine to serve special audience. Children & Libraries, 8(2), 15–17.
go back to reference Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176–189. doi:10.1007/s10803-015-2561-z.CrossRefPubMedPubMedCentral Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176–189. doi:10.​1007/​s10803-015-2561-z.CrossRefPubMedPubMedCentral
Metagegevens
Titel
A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder
Auteurs
Amelia N. Gibson
Samantha Kaplan
Emily Vardell
Publicatiedatum
27-04-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 7/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-017-3127-z

Andere artikelen Uitgave 7/2017

Journal of Autism and Developmental Disorders 7/2017 Naar de uitgave