Addressing a Gap in Healthcare Access for Transition-Age Youth with Autism: A Pilot Educational Intervention for Family Nurse Practitioner Students

Abstract

A mixed-methods randomized controlled trial pilot study evaluated an educational curriculum focused on the medical needs of transition-age youth (TAY) with autism (ASD) for family nurse practitioner students. Fourteen out of a cohort of 16 (87.5%) nursing students consented to participate in the study and were randomly assigned to either a waitlist control group (WLC) (n = 8) or an intervention group (INT) (n = 6). Three measures were used to determine pre- and post-intervention levels of self-efficacy, knowledge, and attitudes. Quantitative and qualitative data provide preliminary support that participation in intervention may improve and enhance knowledge and level of self-efficacy in working with TAY with ASD.

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References

  1. Aylott, J. (2010). Improving access to health and social care for people with autism. Nursing Standard, 24(27), 47–56.

    Article  PubMed  Google Scholar 

  2. Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (2018). Prevalence of autism spectrum disorder among children ages years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MWWR Surveillance Summary, 67, 1–23.

    Article  Google Scholar 

  3. Bambini, D., Washburn, J., & Perkins, R. (2009). Outcomes of clinical simulation for novice nursing students: Communication, confidence, clinical judgment. Nursing Education Perspectives, 30(2), 79–82.

    PubMed  Google Scholar 

  4. Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavior change. Psychological Review, 84(2), 191–215.

    Article  PubMed  Google Scholar 

  5. Bandura, A. (1994). Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behavior (Vol. 4, pp. 71–81). New York: Academic Press. Retrieved from http://www.des.emory.edu/mfp/BanEncycy.html.

  6. Bauman, M. L. (2010). Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics, 7(3), 320–327.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Betz, C. L. (2013). Health transition for adolescents with special health care needs: Where is nursing? Nursing Outlook, 61(5), 258–265. https://doi.org/10.1016/j.outlook.2012.08009.

    Article  PubMed  Google Scholar 

  8. Birden, H., Glass, N., Wilson, I., Harrison, M., Usherwood, T., & Naas, D. (2013). Teaching professionalism in medical education: A Best Evidence Medical Education (BEME) systematic review. BEME Guide No. 25. Medical Teacher, 35(7), e1252–e1266. https://doi.org/10.3109/0142159X.2013.789132.

    Article  PubMed  Google Scholar 

  9. Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498–2504.

    Article  PubMed  Google Scholar 

  10. Buie, T., Campbell, D., Fuchs, G., Furuta, G., Levy, J., Van de Water, J., et al. (2010). Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125(Suppl 1), S1–S18.

    Article  PubMed  Google Scholar 

  11. Cooley, W. C. (2013). Adolescent health care transition in transition. Journal of the American Medical Association (JAMA) Pediatrics, 167(10), 897–899.

    Google Scholar 

  12. Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D., & Rüsch, N. (2012). Challenging the public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63(10), 963–973.

    Article  PubMed  Google Scholar 

  13. Croen, L. A. (2006). A comparison of healthcare utilization costs of children with and without autism spectrum disorders in a large group model health plan. Pediatrics, 118(4), 1203–1211.

    Article  Google Scholar 

  14. Flood, L. N., Bulgrin, A., & Morgan, B. L. (2013). Piecing together the puzzle: Development of the societal attitudes towards autism (SATA) scale. Journal of Research in Special Education, 13(2), 121–128. https://doi.org/10.1111/j.1471-3802.2011.01224.x.

    Article  Google Scholar 

  15. Goldenberg D., Andrusyszyn, M. A., & Iwasiw, C. (2005). The effect of classroom simulation on nursing students’ self-efficacy related to health teaching. Journal of Nursing Education, 44(7), 310–314.

    PubMed  Google Scholar 

  16. Hansen, L. K. (2015). Development and validation of a survey of knowledge of autism spectrum disorder (master’s thesis). Paper 141. Retrieved from https://aquila.usm.edu/masters_theses/141/.

  17. Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research Electronic Data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Information, 42(2), 377–381.

    Article  Google Scholar 

  18. Havercamp, S. M., Ratliff-Schaub, K., Navas-Macho, P., Johnson, C. N., Bush, K. L., & Souders, H. T. (2016). Preparing tomorrow’s doctors to care for patients with autism spectrum disorder. Intellectual and Developmental Disabilities, 54(3), 202–216.

    Article  PubMed  Google Scholar 

  19. Iannuzzi, D. A., Cheng, E. R., Broder-Fingert, S., & Bauman, M. L. (2014). Brief report: Emergency department utilization by individuals with autism. Journal of Autism and Developmental Disorders, 45(4), 1096–1102. https://doi.org/10.1007/s10803-014-2251-2.

    Article  Google Scholar 

  20. Isacksen, J., Bryn, V., Diseth, T. H., Heiberg, A., Schjølberg, S., & Skjeldal, O. H. (2012). Children with autism spectrum disorders—The importance of medical investigations. European Journal of Paediatric Neurology, 17(1), 68–76.

    Article  Google Scholar 

  21. Kenney, J. W. (2006). Theory-based advanced nursing practice. In W. K. Cody (Ed.), Philosophical and theoretical perspectives for advanced nursing practice (pp. 295–309). Sudbury: Jones and Bartlett.

    Google Scholar 

  22. Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), 1149–1158.

    Article  Google Scholar 

  23. Kolb, D. A. (1984). Experiential learning. Experience as the source of learning and development. Englewood Cliffs: Prentice Hall.

    Google Scholar 

  24. Kuiper, R. A., Murdock, N., & Grant, N. (2010). Thinking strategies of baccalaureate nursing students prompted by self-regulated learning strategies. Journal of Nursing Education, 49(8), 429–436.

    Article  PubMed  Google Scholar 

  25. Leslie, D. L., & Martin, A. (2007). Health care expenditures associated with autism spectrum disorders. Archives of Pediatric and Adolescent Medicine, 161(4), 350–355.

    Article  Google Scholar 

  26. Liptak, G. S. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20(4), 245–252.

    Article  PubMed  Google Scholar 

  27. Lisko, S. A., & O’Dell, V. (2010). Integration of theory and practice: Experiential theory and nursing education. Nursing Education Perspectives, 31(3), 106–108.

    PubMed  Google Scholar 

  28. Long-Bellil, L. M., Robey, K. L., Graham, C. L., Minihan, P. M., Smeltzer, S. C., & Kahn, P., & Alliance for Disability in Health Care Education (2011). Teaching medical students about disability: The use of standardized patients. Academic Medicine, 86(9), 1163–1170.

    Article  PubMed  Google Scholar 

  29. Lotstein, D. S., Inkelas, M., Hays, R. D., Halfron, N., & Brook, R. (2008). Access to care for youth with special health care needs in the transition to adulthood. Journal of Adolescent Health, 43(1), 23–29.

    Article  PubMed  Google Scholar 

  30. Malow, B., Adkins, K. W., McGrew, S. G., Wang, L., Goldman, S. E., Fawkes, D., & Burnette, C. (2012). Melatonin for sleep in children with autism: A controlled clinical trial examining dose, tolerability and outcomes. Journal of Autism and Developmental Disorders, 42(8), 1729–1737. https://doi.org/10.1007/s00431-011-1669-1.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Mann, K., Gordon, J., & MacLeod, A. (2009). Reflection and reflective practice in health professions education: A systematic review. Advanced Health Science Education, 14(4), 595–621.

    Article  Google Scholar 

  32. Mazurek, M. O., Brown, R., Curran, A., & Sohl, K. (2016). ECHO autism: A new model. Pediatrics, 56(3), 247–256. https://doi.org/10.1177/0009922816648288.

    Article  Google Scholar 

  33. Microsoft Corporation (2018). Description of the RAND function in Excel. n.d. Retrieved from https://support.microsoft.com/en- us/help/description-of-the-rand-function-in-excel.

  34. Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatric and Adolescent Medicine, 159(1), 10–17.

    Article  Google Scholar 

  35. Operation House Call: Families Teaching Health Professionals (2018). A program of the ARC of MA. Retrieved from http://www.operationhousecall.com.

  36. Oswald, D. P., Gilles, D. L., Cannady, M. S., Wenzel, D. B., Willis, J. H., & Bordurtha, J. N. (2013). Youth with special healthcare needs: Transition to adult health care services. Maternal and Child Health, 17(10), 1744–1752.

    Article  Google Scholar 

  37. Patel, M. S., & O’Hare, K. (2010). Residency training in transition of youth with childhood-onset chronic disease. Pediatrics, 126(Suppl 3), S190–S193.

    Article  PubMed  Google Scholar 

  38. Piven, J., & Lewis, J. (2011). Autism spectrum disorders in older adults: Toward defining a research agenda. Journal of the American Geriatrics Society, 59(11), 2151–2155.

    Article  PubMed  Google Scholar 

  39. Robb, M. (2012). Self-efficacy with application to nursing education: A concept analysis. Nursing Forum, 47(3), 166–172. https://doi.org/10.1111/j.1744-6198.2012.00267.x.

    Article  PubMed  Google Scholar 

  40. Sandelowski, M. (2000). Whatever happened to qualitative descriptions? Research in Nursing and Health, 23, 334–340.

    Article  PubMed  Google Scholar 

  41. Sanders, J. (2009). The use of reflection in medical education: AMEE Guide No. 44. Medical Teacher, 31, 685–695.

    Article  Google Scholar 

  42. Sargeant, J. M., Mann, K. V., van der Vleuten, C. P., & Metsemakers, J. F. (2009). Reflection: A link between receiving and using assessment feedback. Advances in Health Science Education, 14(3), 399–410.

    Article  Google Scholar 

  43. Scarpinato, N., Bradley, J., Kurbjun, K., Bateman, X., Holtzer, B., & Ely, B. (2010). Caring for the child with an ASD in the acute care setting. Journal for Specialists in Pediatric Nursing, 15(3), 244–254.

    Article  PubMed  Google Scholar 

  44. Smeltzer, S. C., Blunt, E., Marozsan, H., & Wetzel-Effinger, L. (2014). Inclusion of disability related content in nurse practitioner curricula. Journal of the American Association of Nurse Practitioners, 27(4), 213–221.

    Article  PubMed  Google Scholar 

  45. Souders, M. C. (2002). Caring for children and adolescents with autism who require challenging procedures. Pediatric Nursing, 28(6), 555–562.

    PubMed  Google Scholar 

  46. Stata Corporation. (2017). Stata Statistical Software: Release 15. College Station: StataCorp LLC.

    Google Scholar 

  47. The WITH Foundation (2017) Formerly known as The Special Hope Foundation: Vision and Mission. Retrieved from http://www.withfoundation.org.

  48. Voelker, R. (2002). Putting mental retardation and mental illness on health care professionals’ radar screen. Journal of the American Medical Association, 208(4), 433–435.

    Google Scholar 

  49. Warfield, M. E., & Gulley, S. (2006). Unmet need and problems accessing specialty medical and related services among children with special health care needs. Maternal and Child Health Journal, 10(2), 201–216.

    Article  PubMed  Google Scholar 

  50. Will, D., Barnfather, J., & Lesley, M. (2013). Self-perceived autism competency of primary care nurse practitioners. The Journal of Nurse Practitioners, 9(6), 350–355.

    Article  Google Scholar 

  51. Yuker, H. E., Block, J. R., & Young, J. H. (1966). The measurement of attitudes towards Disabled persons [Monograph]. Retrieved from https://files.eric.ed.gov/fulltext/ED044853.pdf.

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Acknowledgments

Special thanks to Elaine Gabovitch MPA, Katherine Murray BSN, and Thomas Maloney MSN whose contributions made this study possible. This study would not have been possible without the support from the Arc of MA Operation House Call program.

Funding

This work was supported by WITH Foundation.

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Authors

Contributions

DI conceived of the study, participated in study design development, implemented the intervention, and oversaw data collection. She also participated in data analysis and interpretation activities and took the lead in drafting and revising the manuscript. PR and SD assisted with the study design, data analysis and interpretation, and manuscript preparation and revision. SF assisted with participant recruitment, implementing the educational intervention, and manuscript preparation. MS assisted with implementing the educational intervention and manuscript preparation. CC developed the study design, participated in data analysis and interpretation activities, and assisted with drafting and revising the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Dorothea Iannuzzi.

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Iannuzzi, D., Rissmiller, P., Duty, S.M. et al. Addressing a Gap in Healthcare Access for Transition-Age Youth with Autism: A Pilot Educational Intervention for Family Nurse Practitioner Students. J Autism Dev Disord 49, 1493–1504 (2019). https://doi.org/10.1007/s10803-018-3846-9

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Keywords

  • Autism (ASD)
  • Transition-age youth (TAY)
  • Self-efficacy
  • Knowledge
  • Attitudes
  • FNP students