A Review of Strategies to Increase Comfort and Compliance with Medical/Dental Routines in Persons with Intellectual and Developmental Disabilities

  • Sara Kupzyk
  • Keith D. AllenEmail author


Noncompliance with basic health care can have profound effects on long term health and well-being for everyone, but especially for individuals with intellectual and developmental disabilities (IDD). Perhaps the factor most responsible for noncompliance is the fear associated with medical and dental procedures. We reviewed the research literature to identify the empirical support for interventions designed to address noncompliance with medical routines in the IDD population. Across 32 studies that were reviewed, the most common components used in treatment of fear avoidance and noncompliance with medical/dental routines were graduated exposure and contingent reinforcement. Promising alternative and supplemental treatments are discussed. Step-by-step practice recommendations for preventing the need for treatment, preparing for treatment of noncompliance, and implementing treatment are included.


Medical nonadherence Graduated exposure Fear Avoidance Noncompliance 


Compliance with Ethical Standards

Conflict of Interest

Both authors declare that they have no conflict of interest.

Ethical 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. The current investigation was approved by an Institutional Review Board.


  1. Allen, K. D., & Wallace, D. W. (2013). Effectiveness of using noncontingent escape for general behavior management in a pediatric dental clinic. Journal of Applied Behavior Analysis, 46, 723–737. Scholar
  2. Altabet, S. C. (2002). Decreasing dental resistance among individuals with severe and profound mental retardation. Journal of Developmental and Physical Disabilities, 14, 297–305. Scholar
  3. Beck, M. H., Cataldo, M., Slifer, K. J., Pulbrook, V., & Guhman, J. K. (2005). Teaching children with attention deficit hyperactivity disorder (ADHD) and autistic disorder (AD) how to swallow pills. Clinical Pediatrics, 5, 515–552. Scholar
  4. Boj, J. R., & Davila, J. M. (1989). A study of behavior modification for developmentally disabled children. Journal of Dentistry for Children, 56, 452–457.Google Scholar
  5. Brodtkorb, E., Samsonsen, C., Kutschera Sund, J., Bråthen, G., Helde, G., & Reimer, A. (2016). Treatment non-adherence in pseudo-refractory epilepsy. Epilepsy Research, 122, 1–6. Scholar
  6. Camoin, A., Dany, L., Tardieu, C., Ruquet, M., & Le Coz, P. (2018). Ethical issues and dentists' practices with children with intellectual disability: a qualitative inquiry into a local French health network. Disability and Health Journal, 11, 412–419. 412e419. Scholar
  7. Cavalari, R., DuBard, M., Luiselli, J. K., & Birtwell, K. (2013). Teaching an adolescent with autism and intellectual disability to tolerate routine medical examination: Effects of a behavioral compliance training package. Clinical Practice in Pediatric Psychology, 1, 121–128. Scholar
  8. Conyers, C., Miltenberger, R. G., Peterson, B., Gubin, A., Jurgens, M., Selders, A., Dickinson, J., & Barenz, R. (2004). An evaluation of an in vivo desensitization and video modeling to increase compliance with dental procedures in persons with mental retardation. Journal of Applied Behavior Analysis, 37, 233–238. Scholar
  9. Cox, A., Virues-Ortega, J., Julio, F., & Martin, T. L. (2017). Establishing motion control in children with autism and intellectual disability: applications for anatomical and functional MRI. Journal of Applied Behavior Analysis, 50, 8–26. Scholar
  10. Cromartie, R. S., Flood, W. A., & Luiselli, J. K. (2014). Graduated exposure and compliance training intervention for blood draw avoidance and refusal in a woman with intellectual disability and schizoaffective disorder. Journal of Mental Health Research in Intellectual Disabilities, 7, 95–103. Scholar
  11. Curran, C., Debbarma, S., & Sedky, K. (2017). Fragile X and obstructive sleep apnea syndrome: Case presentation and management challenges. Journal of Clinical Sleep Medicine, 13, 137–138. Scholar
  12. Cuvo, A. J., Godard, A., Huckfeldt, R., & DeMattei, R. (2010a). Training children with autism spectrum disorders to be compliant with an oral assessment. Research in Autism Spectrum Disorders, 4, 681–696. Scholar
  13. Cuvo, A. J., Law Reagan, A., Ackerlund, J., Huckfeldt, R., & Kelly, C. (2010b). Training children with autism spectrum disorders to be compliant with a physical exam. Research in Autism Spectrum Disorders, 4, 168–185. Scholar
  14. Davis, T. E., & Ollendick, T. H. (2005). Empirically supported treatments for specific phobia in children: do efficacious treatments address the components of a phobic response? Clinical Psychology: Science and Practice, 12, 144–160. Scholar
  15. Davit, C. J., Hundley, R. J., Bacic, J. D., & Hanson, E. M. (2011). A pilot study to improve venipuncture compliance in children and adolescents with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 32, 521–525. Scholar
  16. DeMore, M., Cataldo, M., Tierney, E., & Slifer, K. (2009). Behavioral approaches to training developmentally disabled children for an overnight EEG procedure. Journal of Developmental and Physical Disabilities, 21, 245–251. Scholar
  17. Epitropakis, C., & DiPietro, E. A. (2015). Medication compliance protocol for pediatric patients with severe intellectual and behavioral disabilities. Journal of Pediatric Nursing, 30, 329–332. Scholar
  18. Fallea, A., Zuccarello, R., & Cali, F. (2016). Dental anxiety in patients with borderline intellectual functioning and patients with intellectual disabilities. BioMed Central Oral Health, 16.
  19. Ghuman, J.K., Cataldo, M.D., Beck, M.H. & Slifer, K.J. (2004). Behavioral training for pill-swallowing difficulties in young children with autistic disorder, Journal of Child and Adolescent Psychopharmacology, 14(4), 601–611Google Scholar
  20. Gillis, J. M., Hammond Natof, T., Lockshin, S. B., & Romanczyk, R. G. (2009). Fear of routine physical exams in children with autism spectrum disorders: prevalence and intervention effectiveness. Focus on Autism and Other Developmental Disabilities, 24, 156–168. Scholar
  21. Gorski, J., & Westbrook, A. C. (2002). Differential reinforcement to treat non-compliance in a pediatric patient with leukocyte adhesion deficiency. Pediatric Rehabilitation, 5, 29–35.CrossRefGoogle Scholar
  22. Gorski, J., Slifer, K. J., Kelly-Suttka, J., & Lowery, K. (2004). Behavioral interventions for pediatric patients’ acute pain and anxiety: improving health regimen compliance and outcome. Children's Health Care, 33, 1–20. Scholar
  23. Grider, B., Luiselli, J. K., & Turcotte-Shamski, W. (2012). Graduated exposure, positive reinforcement, and stimulus distraction in a compliance-with-blood-draw intervention for an adult with autism. Clinical Case Studies, 11, 253–260. Scholar
  24. Gullone, E. (2005). The development of normal fear: a century of research. Clinical Psychology Review, 20, 429–451. Scholar
  25. Gullone, E., Cummins, R. A., & King, N. J. (1996). Self-reported fears: a comparison study of youths with and without an intellectual disability. Journal of Intellectual Disability Research, 40, 227–240. Scholar
  26. Hagopian, L. P., Crockett, J. L., & Keeney, K. M. (2001). Multicomponent treatment for blood-injury injection phobia in a young man with mental retardation. Research in Developmental Disabilities, 21, 141–149. Scholar
  27. Hosking, F. J., Carey, I. M., Shah, S. M., Harris, T., DeWilde, S., Beighton, C., & Cook, D. G. (2016). Morality among adults with intellectual disability in England: comparisons with the general population. American Journal of Public Health, 106(8), 1483–1490. Scholar
  28. Isong, I. A., Rao, S. R., Holifiedl, C., Iannuzzi, D., Hanson, E., Ware, J., & Nelson, L. P. (2014). Addressing dental fear in children with autism spectrum disorders: a randomized controlled pilot using electronic screen media. Clinical Pediatrics, 53, 230–237. Scholar
  29. Jennett, H. K., & Hagopian, L. P. (2008). Identifying empirically supported treatments for phobic avoidance in individuals with intellectual disabilities. Behavior Therapy, 39, 151–161. Scholar
  30. King, N. J., Muris, P., & Ollendick, T. H. (2005). Childhood fears and phobias: assessment and treatment. Child and Adolescent Mental Health, 10, 50–56. Scholar
  31. Krahn, G., Hammond, L., & Turner, A. (2006). A cascade of disparities: health and health care for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12, 70–82. Scholar
  32. Lennox, N., & Kerr, M. (1997). Primary health care and people with an intellectual disability: the evidence base. Journal of Intellectual Disability Research, 41, 365–372. Scholar
  33. Lunsky, Y., Straiko, A., & Armstrong, S. (2003). Women be healthy: evaluation of a women’s health curriculum for women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 16, 247–253. Scholar
  34. Luscre, D. M., & Center, D. B. (1996). Procedures for reducing dental fear in children with autism. Journal of Autism and Developmental Disorders, 26, 547–556. Scholar
  35. Lydon, S., Healy, O., O’Callaghan, O., Mulhern, T., & Holloway, J. (2015). A systematic review of the treatment of fears and phobias among children with autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 2, 141–154. Scholar
  36. Maguire, K. B., Lange, B., Scherling, M., & Grow, R. (1996). The use of rehearsal and positive reinforcement in the dental treatment of uncooperative patients with mental retardation. Journal of Developmental and Physical Disabilities, 8, 167–177. Scholar
  37. McComas, J. J., Wacker, D. P., & Cooper, L. J. (1998). Increasing compliance with medical procedures: application of the high-probability request procedure to a toddler. Journal of Applied Behavior Analysis, 31, 287–290. Scholar
  38. McKinney, C. M., Nelson, T., Scott, J., Heaton, L., Vaughn, M., & Lewis, C. (2014). Predictors of unmet dental need in children with autism spectrum disorder: results from a national sample. Academic Pediatrics, 14, 624–631. Scholar
  39. Moore, T. R., & Symons, F. J. (2009). Adherence to behavioral and medical treatment recommendations by parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 1173–1184. Scholar
  40. Muehlhan, M., Lueken, U., Wittchen, H., & Kirschbaum, C. (2011). The scanner as a stressor: Evidence from subjective and neuroendocrine stress parameters in the time course of a functional magnetic resonance imaging session. International Journal of Psychophysiology, 79, 118–126. Scholar
  41. Orellana, L. M., Martinez-Sanchis, S., & Silvestre, F. J. (2014). Training adults and children with an autism spectrum disorder to be compliant with a clinical dental assessment using a TEACCH-based approach. Journal of Autism and Developmental Disorders, 44, 776–785. Scholar
  42. Pruijssers, A. C., van Meijel, B., Maaskant, M., Nijssen, W., & van Achterberg, T. (2014). The relationship between challenging behaviour and anxiety in adults with intellectual disabilities: a literature review. Journal of Intellectual Disability Research, 58, 162–171. Scholar
  43. Reimers, T. M., Piazza, C. C., Fisher, W. W., Parrish, J. M., & Page, T. J. (1988). Enhancing child compliance with nebulized respiratory treatment. Clinical Pediatrics, 27, 605–608. Scholar
  44. Rimmer, J. H. (1999). Health promotion for people with disabilities: Emerging paradigm shift from disability prevention to prevention of secondary conditions. Physical Therapy, 79, 495–502.Google Scholar
  45. Riviere, V., Becquet, M., Peltret, E., Facon, B., & Darcheville, J. (2011). Increasing compliance with medical examination requests directed to children with autism: effects of a high-probability request procedure. Journal of Applied Behavior Analysis, 44, 193–197. Scholar
  46. Shabani, D. B., & Fisher, W. W. (2006). Stimulus fading and differential reinforcement for the treatment of needle phobia in a youth with autism. Journal of Applied Behavior Analysis, 39, 449–452. Scholar
  47. Silverman, W. K. (2011). Fears and phobias. In G. Koocher & A. la Greca (Eds.), The parents guide to psychological first aid (pp. 231–238). Oxford: University Press.Google Scholar
  48. Slifer, K. J., Kruglak, D., Benore, E., Bellipanni, K., Falk, L., Halbower, A. C., Amari, A., & Beck, M. (2007). Behavioral training for increasing preschool children’s compliance with positive airway pressure: a preliminary study. Behavioral Sleep Medicine, 5, 147–175. Scholar
  49. Slifer, K. J., Avis, K. T., & Frutch, R. A. (2008). Behavioral intervention to increase compliance with electroencephalographic procedures in children with developmental disabilities. Epilepsy & Behavior, 13, 189–195. Scholar
  50. Slifer, K. J., Hankinson, J. C., Zettler, M. A., Frutchey, R. A., Hendricks, M. C., Ward, C. M., & Reesman, J. (2011). Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities. Clinical Pediatrics, 50, 688–697. Scholar
  51. Ward-Horner, J., & Sturmey, P. (2010). Component analyses using single-subject experimental designs: a review. Journal of Applied Behavior Analysis, 43, 685–704. Scholar
  52. Wolff, J. J., & Symons, F. J. (2012). An evaluation of multi-component exposure treatment of needle phobia in an adult with autism and intellectual disability. Journal of Applied Research in Intellectual Disabilities, 26, 344–348. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Munroe Meyer Institute for Genetics and RehabilitationOmahaUSA

Personalised recommendations