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

  • Dorothea Iannuzzi
  • Patricia Rissmiller
  • Susan M. Duty
  • Susan Feeney
  • Maura Sullivan
  • Carol Curtin
Original Paper


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.


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



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.

Author 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.


This work was supported by WITH Foundation.


  1. Aylott, J. (2010). Improving access to health and social care for people with autism. Nursing Standard, 24(27), 47–56.CrossRefPubMedGoogle 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.CrossRefGoogle 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.PubMedGoogle Scholar
  4. Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavior change. Psychological Review, 84(2), 191–215.CrossRefPubMedGoogle 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
  6. Bauman, M. L. (2010). Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics, 7(3), 320–327.CrossRefPubMedPubMedCentralGoogle Scholar
  7. Betz, C. L. (2013). Health transition for adolescents with special health care needs: Where is nursing? Nursing Outlook, 61(5), 258–265. 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. 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.CrossRefPubMedGoogle 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.CrossRefPubMedGoogle 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.CrossRefPubMedGoogle 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.CrossRefGoogle 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. 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.PubMedGoogle 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
  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.CrossRefGoogle 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.CrossRefGoogle 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. 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.CrossRefGoogle 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.CrossRefGoogle 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.CrossRefPubMedGoogle 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.CrossRefGoogle 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.CrossRefPubMedGoogle 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.PubMedGoogle 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.CrossRefPubMedGoogle 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.CrossRefPubMedGoogle 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. 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.CrossRefGoogle Scholar
  32. Mazurek, M. O., Brown, R., Curran, A., & Sohl, K. (2016). ECHO autism: A new model. Pediatrics, 56(3), 247–256. Scholar
  33. Microsoft Corporation (2018). Description of the RAND function in Excel. n.d. Retrieved from 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.CrossRefGoogle Scholar
  35. Operation House Call: Families Teaching Health Professionals (2018). A program of the ARC of MA. Retrieved from
  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.CrossRefGoogle 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.CrossRefPubMedGoogle 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.CrossRefPubMedGoogle Scholar
  39. Robb, M. (2012). Self-efficacy with application to nursing education: A concept analysis. Nursing Forum, 47(3), 166–172. Scholar
  40. Sandelowski, M. (2000). Whatever happened to qualitative descriptions? Research in Nursing and Health, 23, 334–340.CrossRefPubMedGoogle Scholar
  41. Sanders, J. (2009). The use of reflection in medical education: AMEE Guide No. 44. Medical Teacher, 31, 685–695.CrossRefGoogle 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.CrossRefGoogle 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.CrossRefPubMedGoogle 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.CrossRefPubMedGoogle Scholar
  45. Souders, M. C. (2002). Caring for children and adolescents with autism who require challenging procedures. Pediatric Nursing, 28(6), 555–562.PubMedGoogle 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
  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.CrossRefPubMedGoogle 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.CrossRefGoogle Scholar
  51. Yuker, H. E., Block, J. R., & Young, J. H. (1966). The measurement of attitudes towards Disabled persons [Monograph]. Retrieved from

Copyright information

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

Authors and Affiliations

  • Dorothea Iannuzzi
    • 1
  • Patricia Rissmiller
    • 1
  • Susan M. Duty
    • 2
  • Susan Feeney
    • 3
  • Maura Sullivan
    • 4
  • Carol Curtin
    • 5
  1. 1.Simmons University School of NursingBostonUSA
  2. 2.Simmons University College of Natural and Behavioral Health SciencesBostonUSA
  3. 3.University of Massachusetts Medical School Graduate School of NursingNorth WorcesterUSA
  4. 4.The Arc of MassachusettsWalthamUSA
  5. 5.Departments of Family Medicine & Community Health and PsychiatryUniversity of Massachusetts Medical SchoolWorcesterUSA

Personalised recommendations