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

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.

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Notes

  1. 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).

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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.

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Authors

Corresponding author

Correspondence to Amelia N. Gibson.

Ethics declarations

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.

Appendix

Appendix

Interview Instrument

Interview Schedule

  1. 1.

    How old is your child with Autism (follow parent’s lead on terminology)?

  2. 2.

    What grade is s/he in/Tell me a little bit about him/her?

We are going to talk about some of the information/services you have search for on behalf of your child in the past year (especially related to Autism).

  1. 3.

    In the last year, what medical services or information have you searched for on behalf of your child (especially related to Autism)?

    Follow up questions (as appropriate)

    1. a.

      Why? [context question]

    2. b.

      How did you find out about [that information/service]?

    3. c.

      What did you do next? [info seeking process question]

    4. d.

      Were you satisfied with the outcomes? How did you use the information?

    5. e.

      Would you do it this way again (if you needed similar information at a later point in time)? If not, what would you do differently?

  2. 4.

    In the last year, what education-related services or information have you searched for on behalf of your child (especially related to Autism)?

    • Follow up questions (same as Q3)

  3. 5.

    In the last year, what education-related services or information have you searched for on behalf of your child (especially related to Autism)?

    • Follow up questions (same as Q3)

  4. 6.

    Is there any other information or service you’ve looked for in the past year, that you’d like to tell me about?

  5. 7.

    Could you tell me about an experience you’ve had where you felt like you did not have sufficient information to make an informed decision on behalf of your child, or where you felt like you needed information and could not find it?

  6. 8.

    Please tell me about an experience you’ve had where you felt like you were given too much information to be able to make a decision on behalf of your child (prompt: when you have experienced information overload).

  7. 9.

    Please tell me about an experience you’ve had where you were pleased with the information you’ve received, and where you felt that information helped you make a more informed decision on behalf of your child. (prompt: Where you had just the right amount of information)

  8. 10.

    Would you say that your area of residence has a strong community of support for children with developmental disabilities and their families? Why or why not?

  9. 11.

    What advice would you have for the parents of a child who has just been diagnosed with having autism?

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Gibson, A.N., Kaplan, S. & Vardell, E. A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder. J Autism Dev Disord 47, 2189–2204 (2017). https://doi.org/10.1007/s10803-017-3127-z

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Keywords

  • Autistic disorder
  • Family
  • Information seeking behavior parents
  • Social support
  • TEACCH