Skip to main content
Log in

Adherence to Behavioral and Medical Treatment Recommendations by Parents of Children with Autism Spectrum Disorders

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

The extent to which parents of children with intellectual or developmental disabilities are adherent to prescribed treatments has not been investigated. In this treatment adherence study, parents (n = 220) of children with autism spectrum disorders were surveyed regarding implementation of recommended treatments to manage problem behavior of their children living at home. Overall adherence to medical treatment recommendations was significantly greater than adherence to behavioral treatment recommendations (p < .002). Of the behavioral treatment recommendations, parents reported greater adherence to reinforcement (81.7%) than punishment (68.9%). Child diagnosis (p < .002) and the diagnosis × marital status interaction (p < .05) were significantly associated with reported adherence to behavioral and medical treatment, respectively. Results are discussed in light of the need to address adherence enhancement and measurement methods.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  • Allen, K. D., & Warzak, W. J. (2000). The problem of parental non-adherence in clinical behavior analysis: Effective treatment is not enough. Journal of Applied Behavior Analysis, 33, 373–391. doi:10.1901/jaba.2000.33-373.

    Article  PubMed  Google Scholar 

  • Aman, M. G., Lam, K. S. L., & Collier-Crespin, A. (2003). Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism and Developmental Disorders, 33(5), 527–534. doi:10.1023/A:1025883612879.

    Article  PubMed  Google Scholar 

  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington D.C.: American Psychiatric Association. (Text revision).

    Google Scholar 

  • Arkoosh, M. K., Derby, K. M., Wacker, D. P., Berg, W., McLaughlin, T. F., & Barretto, A. (2007). A descriptive evaluation of long-term treatment integrity. Behavior Modification, 31(6), 880–895. doi:10.1177/0145445507302254.

    Article  PubMed  Google Scholar 

  • Arnold, L. E., Vitiello, B., McDougle, C., Scahill, L., Shah, B., Gonzalez, N., et al. (2003). Parent-defined target symptoms respond to risperidone in RUPP autism study: Customer approach to clinical trials. Journal of the American Academy of Child and Adolescent Psychiatry, 42(12), 1443–1450. doi:10.1097/00004583-200312000-00011.

    Article  PubMed  Google Scholar 

  • Blackwell, B. (1976). Treatment adherence. The British Journal of Psychiatry, 129, 513–531. doi:10.1192/bjp.129.6.513.

    Article  PubMed  Google Scholar 

  • Breiner, J. (1989). Training parents as change agents for their developmentally disabled children. In C. E. Schaefer & J. M. Briesmeister (Eds.), Handbook of parent training: Parents as co-therapists for children’s behavior problems (pp. 269–304). New York: Wiley.

    Google Scholar 

  • Carr, E. G., Taylor, J. C., & Robinson, S. (1991). The effects of severe behavior problems in children on the teaching behavior of adults. Journal of Applied Behavior Analysis, 24, 523–535. doi:10.1901/jaba.1991.24-523.

    Article  PubMed  Google Scholar 

  • Chamberlain, P., Patterson, G., Reid, J., Kavanagh, K., & Forgatch, M. (1984). Observation of client resistance. Behavior Therapy, 15, 144–155. doi:10.1016/S0005-7894(84)80016-7.

    Article  Google Scholar 

  • Charman, T., & Howlin, P. (2003). Research into early intervention with autism and related disorders: Methodological and design issues. Autism, 7(2), 217–225. doi:10.1177/1362361303007002008.

    Article  PubMed  Google Scholar 

  • Cowart, J. D., Iwata, B. A., & Poynter, H. (1984). Generalization and maintenance in training parents of the mentally retarded. Applied Research in Mental Retardation, 5, 233–244. doi:10.1016/S0270-3092(84)80004-1.

    Article  PubMed  Google Scholar 

  • Da Costa, I. G., Rapoff, M. A., Lemanek, K., & Goldstein, G. L. (1997). Improving adherence to medication regimens for children with asthma and its effect on clinical outcome. Journal of Applied Behavior Analysis, 30, 687–691. doi:10.1901/jaba.1997.30-687.

    Article  PubMed  Google Scholar 

  • DiMatteo, M. R. (2004). Variations in patients’ adherence to medical recommendations: A quantitative review of 50 years of research. Medical Care, 42(3), 200–209. doi:10.1097/01.mlr.0000114908.90348.f9.

    Article  PubMed  Google Scholar 

  • Dirks, J. F., & Kinsman, R. A. (1982). Nondichotomous patterns of medication usage: The yes-no-fallacy. Clinical Pharmacology and Therapeutics, 31, 413–417.

    PubMed  Google Scholar 

  • Dush, D. M., & Stacy, E. W., Jr. (1987). Pretesting enhancement of parent compliance in a prevention program for high-risk children. Evaluation & the Health Professions, 10(2), 201–205. doi:10.1177/016327878701000204.

    Article  Google Scholar 

  • Emery, R. E., Binkoff, J. A., Houts, A. C., & Carr, E. G. (1983). Children as independent variables: Some clinical implications of child effects. Behavior Therapy, 14, 398–412. doi:10.1016/S0005-7894(83)80102-6.

    Article  Google Scholar 

  • Epstein, L. H., Beck, S., Figueroa, J., Farkas, G., Kazdin, A., Daneman, D., et al. (1981). The effects of targeting improvements in urine glucose on metabolic control in children with insulin dependent diabetes. Journal of Applied Behavior Analysis, 14, 365–375. doi:10.1901/jaba.1981.14-365.

    Article  PubMed  Google Scholar 

  • Feldman, M. A., Case, L., Garrick, M., MacIntyre-Grande, W., Carnwell, J., & Sparks, B. (1992). Teaching child-care skills to mothers with developmental disabilities. Journal of Applied Behavior Analysis, 25, 205–215. doi:10.1901/jaba.1992.25-205.

    Article  PubMed  Google Scholar 

  • Feldman, M. A., Case, L., Rincover, A., Towns, F., & Betel, J. (1989). Parent education project III: Increasing affection and responsivity in developmentally handicapped mothers: Component analysis, generalization, and effects on child language. Journal of Applied Behavior Analysis, 22, 211–222. doi:10.1901/jaba.1989.22-211.

    Article  PubMed  Google Scholar 

  • Fleischman, M. J. (1979). Using parenting salaries to control attrition and cooperation in therapy. Behavior Therapy, 10, 111–116. doi:10.1016/S0005-7894(79)80014-3.

    Article  Google Scholar 

  • Garber, M. C., Nau, D. P., Erickson, S. R., Aikens, J. E., & Lawrence, J. B. (2004). The concordance of self-report with other measures of medication adherence. Medical Care, 42(7), 649–652. doi:10.1097/01.mlr.0000129496.05898.02.

    Article  PubMed  Google Scholar 

  • Gould, M. S., Shaffer, D., & Kaplan, D. (1985). The characteristics of dropouts from a child psychiatry clinic. Journal of the American Academy of Child Psychiatry, 24(3), 316–328.

    Article  PubMed  Google Scholar 

  • Hall, R. V., Axelrod, S., Tyler, L., Grief, E., Jones, F. C., & Robertson, R. (1972). Modification of behavior problems in the home with a parent as observer and experimenter. Journal of Applied Behavior Analysis, 5, 53–64. doi:10.1901/jaba.1972.5-53.

    Article  PubMed  Google Scholar 

  • Hanley, G. P., Piazza, C. C., Fisher, W. W., & Maglieri, K. A. (2005). On the effectiveness of and preference for punishment and extinction components of function-based interventions. Journal of Applied Behavior Analysis, 38, 51–65. doi:10.1901/jaba.2005.6-04.

    Article  PubMed  Google Scholar 

  • Howell, D. C. (2002). Statistical methods for psychology (5th ed.). Pacific Grove, CA: Duxbury.

    Google Scholar 

  • Huynen, K. B., Lutzker, J. R., Bigelow, K. M., Touchette, P. E., & Campbell, R. V. (1996). Planned activities training for mothers of children with developmental disabilities. Behavior Modification, 20(4), 406–427. doi:10.1177/01454455960204003.

    Article  PubMed  Google Scholar 

  • Jacobson, J. W., Mulick, J. A., & Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism: General model and single state case. Behavioral Interventions, 13, 201–226. doi:10.1002/(SICI)1099-078X(199811)13:4<201::AID-BIN17>3.0.CO;2-R.

    Article  Google Scholar 

  • Jarbrink, K., & Knapp, M. (2001). The economic impact of autism in Britain. Autism, 5(1), 7–22. doi:10.1177/1362361301005001002.

    Article  PubMed  Google Scholar 

  • Johnson, S. M., & Bolstad, O. D. (1975). Reactivity to home observation: A comparison of audio recorded behavior with observers present or absent. Journal of Applied Behavior Analysis, 8, 181–185. doi:10.1901/jaba.1975.8-181.

    Article  PubMed  Google Scholar 

  • Kashinath, S., Woods, J., & Goldstein, H. (2006). Enhancing generalized teaching strategy use in daily routines by parents of children with autism. Journal of Speech, Language, and Hearing Research: JSLHR, 49, 466–485. doi:10.1044/1092-4388(2006/036).

    Article  PubMed  Google Scholar 

  • Kazdin, A. E. (1977). Artifact, bias, and complexity of assessment: The ABCs of reliability. Journal of Applied Behavior Analysis, 10, 141–150. doi:10.1901/jaba.1977.10-141.

    Article  PubMed  Google Scholar 

  • Kazdin, A. E., Holland, L., & Crowley, M. (1997). Family experience of barriers to treatment and premature termination from child therapy. Journal of Consulting and Clinical Psychology, 65(3), 453–463. doi:10.1037/0022-006X.65.3.453.

    Article  PubMed  Google Scholar 

  • Kinsman, R. A., Dirks, J. F., & Dahlem, N. W. (1980). Noncompliance to prescribed-as-needed (PRN) medication use in asthma: Usage patterns and patient characteristics. Journal of Psychosomatic Research, 24, 97–107. doi:10.1016/0022-3999(80)90059-8.

    Article  PubMed  Google Scholar 

  • Lemanek, K. L., Kamps, J., & Chung, N. B. (2001). Empirically supported treatments in pediatric psychology: Regimen adherence. Journal of Pediatric Psychology, 26(5), 253–275. doi:10.1093/jpepsy/26.5.253.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health care utilization and expenditures for children with autism: Data from U.S. national samples. Journal of Autism and Developmental Disorders, 36, 871–879. doi:10.1007/s10803-006-0119-9.

    Article  PubMed  Google Scholar 

  • Love, J. M., & Van Biervliet, A. (1984). Training parents to become home reading tutors: Generalization of children’s reading skills from home to school. Exceptional Children, 31(2), 114–127.

    Google Scholar 

  • Lowry, M. A., & Whitman, T. L. (1989). Generalization of parenting skills: An early intervention program. Child & Family Behavior Therapy, 11(1), 45–65. doi:10.1300/J019v11n01_04.

    Article  Google Scholar 

  • MacNaughton, K. L., & Rodrigue, J. R. (2001). Predicting adherence to recommendations by parents of clinic-referred children. Journal of Consulting and Clinical Psychology, 69(2), 262–270. doi:10.1037/0022-006X.69.2.262.

    Article  PubMed  Google Scholar 

  • McConnachie, G., & Carr, E. G. (1997). The effects of child behavior problems on the maintenance of intervention fidelity. Behavior Modification, 21(2), 123–158. doi:10.1177/01454455970212001.

    Article  PubMed  Google Scholar 

  • Meichenbaum, D., & Turk, D. C. (Eds.). (1987). Facilitating treatment adherence: A practitioner’s guidebook. New York: Plenum.

    Google Scholar 

  • Nelson, R. O., & Hayes, S. (1981). Theoretical explanations for reactivity in self-monitoring. Behavior Modification, 5, 3–14. doi:10.1177/014544558151001.

    Article  Google Scholar 

  • Northup, J., Fisher, W., Kahng, S., Harrel, B., & Kurtz, P. (1997). An assessment of the necessary strength of behavioral treatments for severe behavior problems. Journal of Developmental and Physical Disabilities, 9, 1–16. doi:10.1023/A:1024984526008.

    Article  Google Scholar 

  • Osterberg, L., & Blaschke, T. (2005). Adherence to medication. The New England Journal of Medicine, 353(5), 487–497. doi:10.1056/NEJMra050100.

    Article  PubMed  Google Scholar 

  • Patterson, G. R., & Chamberlain, P. (1994). A functional analysis of resistance during parent training therapy. Clinical Psychology: Science and Practice, 1(1), 53–70.

    Article  Google Scholar 

  • Rodriguez-Martinez, C. E., Sossa, M. P., & Rand, C. S. (2007). Validation of a questionnaire for assessing adherence to metered-dose inhaler use in asthmatic children. Pediatric Asthma Allergy & Immunology, 20(4), 243–254. doi:10.1089/pai.2007.001.

    Article  Google Scholar 

  • Rosenstock, I. M., Derryberry, M., & Carriger, B. K. (1959). Why people fail to seek poliomyelitis vaccination. Public Health Reports, 74, 98–104.

    PubMed  Google Scholar 

  • Rudd, P. (1979). In search of the gold standard for compliance measurement. Archives of Internal Medicine, 139(6), 627–628. doi:10.1001/archinte.139.6.627.

    Article  PubMed  Google Scholar 

  • Springer, C., & Reddy, L. (2004). Measuring adherence in behavior therapy: Opportunities for practice and research. Behavior Therapist, 27(5), 99–101.

    Google Scholar 

  • Steele, R. G., Anderson, B., Rindel, B., Dreyer, M. L., Perrin, K., Christensen, R., et al. (2001). Adherence to antiretroviral therapy among HIV-positive children: Examination of the role of caregiver health beliefs. AIDS Care, 13(5), 617–629. doi:10.1080/09540120120063241.

    Article  PubMed  Google Scholar 

  • Tymchuk, A. J., & Andron, L. (1988). Clinic and home parent training of a mother with mental handicap caring for three children with developmental delay. Mental Handicap Research, 1(1), 24–38.

    Google Scholar 

  • Vollmer, T. R., Roane, H. S., Ringdahl, J. E., & Marcus, B. A. (1999). Evaluating treatment challenges with differential reinforcement of alternative behavior. Journal of Applied Behavior Analysis, 32, 9–23. doi:10.1901/jaba.1999.32-9.

    Article  Google Scholar 

  • Weinraub, M., & Wolf, B. M. (1983). Effects of stress and social supports on mother-child interactions in single-and two-parent families. Child Development, 54, 1297–1311. doi:10.2307/1129683.

    Article  PubMed  Google Scholar 

  • White, G. D. (1977). The effects of observer presence on the activity level of families. Journal of Applied Behavior Analysis, 10, 734. doi:10.1901/jaba.1977.10-734.

    Article  Google Scholar 

  • Wilder, D. A., Atwell, J., & Wine, B. (2006). The effects of varying levels of treatment integrity on child compliance during treatment with a three-step prompting procedure. Journal of Applied Behavior Analysis, 39, 369–373. doi:10.1901/jaba.2006.144-05.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We thank the Autism Society of Minnesota for their collaboration on this project, and the parents who completed this survey for their time and effort.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Timothy R. Moore.

Appendices

Appendix 1

Survey as presented to parents.

Appendix 2

Table 5 Bivariate correlations

Rights and permissions

Reprints and permissions

About this article

Cite this article

Moore, T.R., Symons, F.J. Adherence to Behavioral and Medical Treatment Recommendations by Parents of Children with Autism Spectrum Disorders. J Autism Dev Disord 39, 1173–1184 (2009). https://doi.org/10.1007/s10803-009-0729-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-009-0729-0

Keywords

Navigation