Advertisement

Journal of Autism and Developmental Disorders

, Volume 48, Issue 6, pp 2122–2138 | Cite as

From ‘Parent’ to ‘Expert’: How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access

  • Amelia G. Edwards
  • Chris M. Brebner
  • Paul F. McCormack
  • Colin J. MacDougall
Original Paper

Abstract

Parents of children with Autism Spectrum Disorder are responsible for deciding which interventions to implement with their child. There is limited research examining parental decision-making with regards to intervention approaches. A constructivist grounded theory methodology was implemented in this study. Semi-structured interviews were undertaken with 14 participants from 12 family units. Data collection and analysis occurred concurrently, allowing a grounded theory to be constructed. Parental decision-making was influenced by many factors, arranged into seven core categories (values, experience, information, motivation, understanding, needs and logistics). Decision-making evolved over time, as parents transformed from ‘parent’ to ‘expert’. The results of this study provide an insight into parental decision-making, which has implications for the support provided to parents by health professionals.

Keywords

Autism spectrum disorder Decision-making Intervention Parents Qualitative research 

Notes

Acknowledgments

The authors would like to acknowledge the participants who were involved in this study and the SLP who assisted with recruitment. This paper was prepared from the doctoral dissertation of the first author.

Author Contributions

AGE conceived the study and participated in all stages of the study (study design and data collection, analysis and interpretation) and drafted the manuscript. CMB, PFM and CJM all participated in the design of the study, data analysis and interpretation, and helped to draft the manuscript. All authors read and approved the final manuscript.

Compliance with Ethical Standards

Conflict of interest

Amelia Edwards, Chris Brebner, Paul McCormack and Colin MacDougall declare that they have no conflict of interest.

Ethics Approval

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.

References

  1. Al Anbar, N. N., Dardennes, R. M., Prado-Netto, A., Kaye, K., & Contejean, Y. (2010). Treatment choices in autism spectrum disorder: The role of parental illness perceptions. Research in Developmental Disabilities, 31, 817–828.  https://doi.org/10.1016/j.ridd.2010.02.007.CrossRefPubMedGoogle Scholar
  2. Bowker, A., D’Angelo, N. M., Hicks, R., & Wells, K. (2011). Treatments for autism: Parental choices and perceptions of change. Journal of Autism and Developmental Disorders, 41, 1373–1382.  https://doi.org/10.1007/s10803-010-1164-y.CrossRefPubMedGoogle Scholar
  3. Carlon, S., Carter, M., & Stephenson, J. (2013). A review of declared factors identified by parents of children with autism spectrum disorders (AD) in making intervention decisions. Research in Autism Spectrum Disorders, 7, 369–381.  https://doi.org/10.1016/j.rasd.2012.10.009.CrossRefGoogle Scholar
  4. Carlon, S., Stephenson, J., & Carter, M. (2014). Parent reports of treatments and interventions used with children with autism spectrum disorders (ASD): A review of the literature. Australasian Journal of Special Education, 38, 63–90.  https://doi.org/10.1017/jse.2014.4.CrossRefGoogle Scholar
  5. Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., Clark, T., Warren, A. (2011). Interventions used with an Australian sample of preschool children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1033–1041.  https://doi.org/10.1016/j.rasd.2010.11.009.CrossRefGoogle Scholar
  6. Charmaz, K. (2006). Constructing grounded theory: In A practical guide through qualitative analysis. London: Sage.Google Scholar
  7. Dardennes, R. M., Anbar, A., Prado-Netto, N. N., Kaye, A., Contejean, K., Y., & Al Anbar, N. N. (2011). Treating the cause of illness rather than the symptoms: Parental causal beliefs and treatment choices in autism spectrum disorder. Research in Developmental Disabilities, 32, 1137–1146.  https://doi.org/10.1016/j.ridd.2011.01.010.CrossRefPubMedGoogle Scholar
  8. De Geeter, K. I., Poppes, P., & Vlaskamp, C. (2002). Parents as experts: The position of parents of children with profound multiple disabilities. Child: Care, Health & Development, 28(6), 443–453.  https://doi.org/10.1046/j.1365-2214.2002.00294.x.Google Scholar
  9. Dollaghan, C. A. (2007). The handbook for evidence-based practice in communication disorders. Baltimore, MD: Paul H. Brookes.Google Scholar
  10. Francis, J., Johnston, M., Robertson, C., Glidewell, L., Entwistle, V., Eccles, M., & Grimshaw, J. (2010). What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychology & Health, 25, 1229–1245.  https://doi.org/10.1080/08870440903194015.CrossRefGoogle Scholar
  11. Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age. Stanford, CA: Stanford University Press.Google Scholar
  12. Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2009). Parental reports on the efficacy of treatments and therapies for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3, 528–537.  https://doi.org/10.1016/j.rasd.2008.11.001.CrossRefGoogle Scholar
  13. Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H. (2007). Parental reports on the use of treatments and therapies for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1, 195–209.  https://doi.org/10.1016/j.rasd.2006.08.006.CrossRefGoogle Scholar
  14. Gray, D. E. (2014). Doing research in the real world (3rd edn.). London: Sage.Google Scholar
  15. Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27, 70–84.  https://doi.org/10.1016/j.ridd.2004.12.002.CrossRefPubMedGoogle Scholar
  16. Hebert, E. B. (2014). Factors affecting parental decision-making regarding interventions for their child with autism. Focus on Autism and Other Developmental Disabilities, 29(2), 111–124.  https://doi.org/10.1177/1088357614522291.CrossRefGoogle Scholar
  17. Lutz, H. R., Patterson, B. J., & Klein, J. (2012). Coping with autism: A journey towards adaptation. Journal of Pediatric Nursing, 27, 206–213.  https://doi.org/10.1016/j.pedn.2011.03.013.CrossRefPubMedGoogle Scholar
  18. Marshall, M. N. (1996). Sampling for qualitative research. Family Practice, 13(6), 522–526.  https://doi.org/10.1093/fampra/13.6.522.CrossRefPubMedGoogle Scholar
  19. Miller, V. A., Schreck, K. A., Mulick, J. A., & Butter, E. (2012). Factors related to parents’ choices of treatments for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 87–95.  https://doi.org/10.1177/1088357614522291.CrossRefGoogle Scholar
  20. Roberts, J. M. A., & Prior, M. (2006). A review of the research to identify the most effective models of practice in early intervention of children with autism spectrum disorders. Canberra: Australian Government Department of Health and Ageing.CrossRefGoogle Scholar
  21. Schopler, E., Reichler, R., DeVellis, R., & Daly, K. (1980). Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). Journal of Autism and Developmental Disorders, 10(1), 91–103.  https://doi.org/10.1007/BF02408436.CrossRefPubMedGoogle Scholar
  22. Shaked, M. (2005). The social trajectory of illness: Autism in the ultraorthodox community in Israel. Social Science & Medicine, 61(10), 2190–2200.  https://doi.org/10.1016/j.soscimd.2005.04.022.CrossRefGoogle Scholar
  23. Shyu, Y. L., Tsai, J., & Tsai, W. (2010). Explaining and selecting treatments for autism: Parental explanatory models in Taiwan. Journal of Autism and Developmental Disorders, 40, 1323–1331.  https://doi.org/10.1007/s10803-010-0991-1.CrossRefPubMedGoogle Scholar
  24. Simmons-Mackie, N., & Damico, J. S. (1999). Qualitative methods in aphasia research: ethnography. Aphasiology, 13(9–11), 681–687.  https://doi.org/10.1080/026870399401786.CrossRefGoogle Scholar
  25. Valentine, K. (2010). A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science & Medicine, 71(5), 950–957.  https://doi.org/10.1016/j.socscimed.2010.06.010.CrossRefGoogle Scholar
  26. Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. F., Glasser, A., & Veenstra-VanderWeele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303-e1311.  https://doi.org/10.1542/peds.2011-0426.CrossRefGoogle Scholar
  27. Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083.  https://doi.org/10.1177/1049732308320112.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Amelia G. Edwards
    • 1
  • Chris M. Brebner
    • 1
  • Paul F. McCormack
    • 1
  • Colin J. MacDougall
    • 2
  1. 1.Speech Pathology, College of Nursing and Health SciencesFlinders UniversityAdelaideAustralia
  2. 2.Public Health, College of Medicine and Public Health, Flinders UniversityAdelaideAustralia

Personalised recommendations