Journal of Autism and Developmental Disorders

, Volume 47, Issue 7, pp 2189–2204 | Cite as

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

  • Amelia N. Gibson
  • Samantha Kaplan
  • Emily Vardell
Original Paper

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.

Keywords

Autistic disorder Family Information seeking behavior parents Social support TEACCH 

Notes

Acknowledgments

The authors would like to thank the parents who took precious time to share their thoughts with us. We would also like to thank members of the North Carolina Autism Alliance, the North Carolina Autism Society, and the Carolina Institute for Developmental Disabilities for their guidance with study design, and assistance with recruiting participants for this study. Participants were recruited from the Carolina Institute for Developmental Disabilities Research Participant Registry which is funded by NICHD U54HD079124. Brief preliminary findings from this study were presented at the 2015 ASIS&T Annual Meeting: Information Science with Impact: Research in and for the Community in St. Louis, Missouri.

Author Contributions

AG conceived of, designed, and coordinated the study, performed the measurements and statistical analyses, interpreted the data, and drafted the manuscript. SK participated in the design and coordination of the study, acquisition and interpretation of the data, and helped revise the manuscript. EV participated in the acquisition and interpretation of the data, and helped revise the manuscript. All authors read and approved the final manuscript.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Standards

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Akin, L., & MacKinney, D. (2004). Autism, literacy, and libraries: The 3 Rs = Routine, repetition, and redundancy. Children & Libraries, 2(2), 35–43.Google Scholar
  2. Braveman, P., & Gruskin, S. (2003). Defining equity in health. Journal of Epidemiology and Community Health, 57(4), 254–258. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12646539.
  3. 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.
  4. Charmaz, K. (2014). Constructing grounded theory (2nd ed.). London: Sage.Google Scholar
  5. 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.CrossRefGoogle Scholar
  6. 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.CrossRefGoogle Scholar
  7. 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.
  8. 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.Google Scholar
  9. Halvorson, H. (2006). Asperger’s syndrome: How the public library can address these special needs. Children and Libraries, 4(3), 19–27.Google Scholar
  10. 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.Google Scholar
  11. Leeder, S. R., & Dominello, A. (2005). Health, equity and intellectual disability. Journal of Applied Research in Intellectual Disabilities, 18(2), 97–100. doi: 10.1111/j.1468-3148.2005.00238.x.CrossRefGoogle Scholar
  12. Mackintosh, V. H., Myers, B. J., & Goin-Kochel, R. P. (2005). Sources of information and support used by parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 12(1), 41–51. Retrieved from http://www.oadd.org/publications/journal/issues/vol12no1/download/mackintoshEtAl.pdf.
  13. 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.CrossRefGoogle Scholar
  14. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  15. McEwen, R. (2014). Mediating sociality: The use of iPod touch devices in the classrooms of students with autism in canada. Information, Communication & Society, 17(10), 1264–1279. doi: 10.1080/1369118X.2014.920041.CrossRefGoogle Scholar
  16. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  17. 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.
  18. Özyazıcıoğlu, N., & Buran, G. (2014). Social support and anxiety levels of parents with disabled children. Rehabilitation Nursing, 39(5), 225–231. doi: 10.1002/rnj.137.CrossRefPubMedGoogle Scholar
  19. 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.PubMedPubMedCentralGoogle Scholar
  20. Rhoades, R. A., Scarpa, A., & Salley, B. (2007). The importance of physician knowledge of autism spectrum disorder: Results of a parent survey. BMC Pediatrics, 7, 37. doi: 10.1186/1471-2431-7-37.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 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.CrossRefPubMedGoogle Scholar
  22. 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.CrossRefPubMedGoogle Scholar
  23. Seltzer, M. M., Krauss, M. W., Shattuck, P. T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders, 33(6), 565–581. doi: 10.1023/B:JADD.0000005995.02453.0b.CrossRefPubMedGoogle Scholar
  24. 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.Google Scholar
  25. 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.CrossRefGoogle Scholar
  26. Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19(5), 251–260. doi: 10.1111/j.1745-7599.2007.00222.x.CrossRefPubMedGoogle Scholar
  27. UNC School of Medicine. (2016). About University of North Carolina TEACCH Autism Program. Retrieved from https://www.teacch.com/about-us.
  28. 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.CrossRefGoogle Scholar
  29. Winson, G., & Adams, C. (2010). Collaboration at its best: Library and autism programs combine to serve special audience. Children & Libraries, 8(2), 15–17.Google Scholar
  30. 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.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  • Amelia N. Gibson
    • 1
  • Samantha Kaplan
    • 1
  • Emily Vardell
    • 1
  1. 1.The School of Information and Library ScienceUniversity of North Carolina at Chapel HillChapel HillUSA

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