Advertisement

Journal of Autism and Developmental Disorders

, Volume 39, Issue 8, pp 1173–1184 | Cite as

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

  • Timothy R. Moore
  • Frank J. Symons
Original Paper

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.

Keywords

Adherence Parents Autism spectrum disorders 

Notes

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.

References

  1. 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.PubMedCrossRefGoogle Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington D.C.: American Psychiatric Association. (Text revision).Google Scholar
  4. 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.PubMedCrossRefGoogle Scholar
  5. 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.PubMedCrossRefGoogle Scholar
  6. Blackwell, B. (1976). Treatment adherence. The British Journal of Psychiatry, 129, 513–531. doi: 10.1192/bjp.129.6.513.PubMedCrossRefGoogle Scholar
  7. 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
  8. 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.PubMedCrossRefGoogle Scholar
  9. 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.CrossRefGoogle Scholar
  10. 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.PubMedCrossRefGoogle Scholar
  11. 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.PubMedCrossRefGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. Dirks, J. F., & Kinsman, R. A. (1982). Nondichotomous patterns of medication usage: The yes-no-fallacy. Clinical Pharmacology and Therapeutics, 31, 413–417.PubMedGoogle Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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.CrossRefGoogle Scholar
  17. 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.PubMedCrossRefGoogle Scholar
  18. 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.PubMedCrossRefGoogle Scholar
  19. 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.PubMedCrossRefGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. 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.PubMedCrossRefGoogle Scholar
  22. 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.PubMedCrossRefGoogle Scholar
  23. 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.PubMedCrossRefGoogle Scholar
  24. 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.PubMedCrossRefGoogle Scholar
  25. Howell, D. C. (2002). Statistical methods for psychology (5th ed.). Pacific Grove, CA: Duxbury.Google Scholar
  26. 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.PubMedCrossRefGoogle Scholar
  27. 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.CrossRefGoogle Scholar
  28. Jarbrink, K., & Knapp, M. (2001). The economic impact of autism in Britain. Autism, 5(1), 7–22. doi: 10.1177/1362361301005001002.PubMedCrossRefGoogle Scholar
  29. 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.PubMedCrossRefGoogle Scholar
  30. 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).PubMedCrossRefGoogle Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.PubMedCrossRefGoogle Scholar
  33. 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.PubMedCrossRefGoogle Scholar
  34. 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.PubMedCrossRefGoogle Scholar
  35. 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.PubMedCrossRefGoogle Scholar
  36. 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
  37. 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.CrossRefGoogle Scholar
  38. 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.PubMedCrossRefGoogle Scholar
  39. 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.PubMedCrossRefGoogle Scholar
  40. Meichenbaum, D., & Turk, D. C. (Eds.). (1987). Facilitating treatment adherence: A practitioner’s guidebook. New York: Plenum.Google Scholar
  41. Nelson, R. O., & Hayes, S. (1981). Theoretical explanations for reactivity in self-monitoring. Behavior Modification, 5, 3–14. doi: 10.1177/014544558151001.CrossRefGoogle Scholar
  42. 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.CrossRefGoogle Scholar
  43. Osterberg, L., & Blaschke, T. (2005). Adherence to medication. The New England Journal of Medicine, 353(5), 487–497. doi: 10.1056/NEJMra050100.PubMedCrossRefGoogle Scholar
  44. Patterson, G. R., & Chamberlain, P. (1994). A functional analysis of resistance during parent training therapy. Clinical Psychology: Science and Practice, 1(1), 53–70.CrossRefGoogle Scholar
  45. 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.CrossRefGoogle Scholar
  46. Rosenstock, I. M., Derryberry, M., & Carriger, B. K. (1959). Why people fail to seek poliomyelitis vaccination. Public Health Reports, 74, 98–104.PubMedGoogle Scholar
  47. 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.PubMedCrossRefGoogle Scholar
  48. Springer, C., & Reddy, L. (2004). Measuring adherence in behavior therapy: Opportunities for practice and research. Behavior Therapist, 27(5), 99–101.Google Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. 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
  51. 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.CrossRefGoogle Scholar
  52. 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.PubMedCrossRefGoogle Scholar
  53. 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.CrossRefGoogle Scholar
  54. 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.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Department of Educational PsychologyUniversity of MinnesotaMinneapolisUSA

Personalised recommendations