A Preliminary Study of Activation, Stress, and Self-Management of Parents of Children with Autism Spectrum Disorder
- 594 Downloads
Children with autism spectrum disorder (ASD) and developmental disabilities are high users of services, yet very little is known about how parents of these children interact with the health care system. Further, compared to parents of children with other developmental disabilities, parents of children with ASD experience more stress and dissatisfaction with services. Current efforts for improving services point to a need for understanding caregivers’ perceptions of their own health-care related beliefs and actions. Activation is a construct that measures the belief, knowledge, action, and persistence of managing one’s health care needs. The objective of this preliminary study was to evaluate the activation of parents of children with ASD using an adapted parent activation measure (PAM) for children with developmental disabilities called the PAM-DD. Data were collected from parents who received treatment as usual from a community-based outpatient treatment planning service for children with ASD. PAM-DD scores were compared with parent ratings of stress, self-management, and service satisfaction. Results indicated that increased activation correlated positively with parent report of satisfaction and ability to self-manage child issues such as eating, sleeping, and behavior and correlated negatively with parenting stress. The study of activation shows promise as a feature of quality of care for parents of children with developmental disabilities.
Key wordsParent activation Developmental disabilities Autism spectrum disorder Self-management Parent stress
This project was supported by University of Kentucky Intramural Grant. We wish to thank Craig Swanson of Insignia for assistance, the TPS team of the Kelly O’Leary Autism Program and parents for their support and participation, and Zachary Goble for assistance with data collection.
L.R.: designed and executed the study, assisted with the data analyses, and wrote the paper. D.M. collaborated with the design, execution of the study, and writing of the study. J.M. collaborated with the design, data analyses, and writing of the study. K.B. collaborated with the execution of the study and data collection. V. W. W. collaborated with data analyses.
Compliance with Ethical Standards
Conflicts of interest
The authors declare they have no competing interests.
The study was approved by the human subjects committees of the University of Kentucky, Cincinnati Children’s Hospital, and the University of Cincinnati.
All participants provided informed consent prior to participation in the study.
- Abidin, R. (1995). Parenting stress IndexTM, Fourth Edition Short Form (PSITM –4-SF). Charlottesville, VA: Pediatric Psychology Press.Google Scholar
- American Psychiatric Association. (2004). Diagnostic and statistical manual of mental disorders-Fourth Edition, Text Revised. 4th edn. Washington, DC: American Psychiatric Association.Google Scholar
- Beatson, J. E. (2008). Walk a mile in their shoes: Implementing family-centered care in serving children and families affected by autism spectrum disorder. Topics in Language Disorders, 28, 309–322. https://doi.org/10.1097/01.TLD.0000341126.16405.e9.CrossRefGoogle Scholar
- Bitterman, A., Daley, T. C., Misra, S., Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38, 1509–1517. https://doi.org/10.1007/s10803-007-0531-9.CrossRefPubMedGoogle Scholar
- Cantor, N. L. (2005). Making medical decisions for the profoundly mentally disabled. Cambridge, MA: MIT Press.Google Scholar
- Carbone, P. S., Murphy, N. A., Norlin, C., Azor, V., Sheng, X., & Young, P. C. (2013). Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(4), 964–972. https://doi.org/10.1007/s10803-012-1640-7.CrossRefPubMedGoogle Scholar
- DiClemente, C. C., Prochaska, J. O., Fairhurst, S. K., Velicer, W. F., Velasquez, M. M., & Rossi, J. S. (1991). The process of smoking cessation: An analysis of precontemplation, contemplation, and preparation stages of change. Journal of Consulting and Clinical Psychology, 59, 295–304. https://doi.org/10.1037/0022-006X.59.2.295.CrossRefPubMedGoogle Scholar
- Druss, B. G., von Esenwein, S. A., Compton, M. T., Rask, K. J., Zhao, L., & Parker, R. M. (2009). A randomized trial of medical care management for community mental health settings: The Primary Care Access, Referral, and Evaluation (PCARE) study. American Journal of Psychiatry, 167(2), 151–159. https://doi.org/10.1176/appi.ajp.2009.09050691.CrossRefPubMedPubMedCentralGoogle Scholar
- Harvey, L., Fowles, J. B., Xi, M., & Terry, P. (2012). When activation changes, what else changes? The relationship between change in patient activation measure (PAM) and employees’ health status and health behaviors. Patient Education and Counseling, 88(2), 338–343. https://doi.org/10.1016/j.pec.2012.02.005.CrossRefPubMedGoogle Scholar
- Hayes, S., & Watson, S. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y.CrossRefPubMedGoogle Scholar
- Hibbard, J., & Gilburt, H. (2014). Supporting people to manage their health. An introduction to patient activation. https://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/supporting-people-manage-health-patient-activation-may14.pdf.Google Scholar
- Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Services Research, 39(4), 1005–1026. https://doi.org/10.1111/j.1475-6773.2004.00269.x.CrossRefPubMedPubMedCentralGoogle Scholar
- Hibbard, J. H., Mahoney, E. R., Stock, R., & Tusler, M. (2007). Self management and health care utilization: Do increases in patient activation result in improved self‐management behaviors? Health Services Research, 42(4), 1443–1463. https://doi.org/10.1111/j.1475-6773.2006.00669.x.CrossRefPubMedPubMedCentralGoogle Scholar
- Hodgetts, S., Nicholas, D., Zwaigenbaum, L., & McConnell, D. (2013). Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors. Social Science & Medicine, 96, 138–146. https://doi.org/10.1016/j.socscimed.2013.07.012.CrossRefGoogle Scholar
- Insignia. (2013) Patient Activation Measure (PAM) 13TM. http://www.ehcca.com/presentations/hixsummit1/swanson_ms5.pdf.Google Scholar
- Krakovich, T. M., McGrew, J. H., Yu, Y., & Ruble, L. A. (2016). Stress in parents of children with autism spectrum disorder: An exploration of demands and resources. Journal of Autism and Developmental Disorders, 46(6), 2042–2053. https://doi.org/10.1007/s10803-016-2728-2.CrossRefPubMedGoogle Scholar
- Lord, C., Risi, S., Lambrecht, L., Cook, E., Leventhal, B., DiLavore, P., & Rutter, M. (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223. https://doi.org/10.1023/A:1005592401947.CrossRefPubMedGoogle Scholar
- Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown Jr, B. W., Bandura, A., ... & Holman, H. R. (2001). Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical care, 39(11), 1217–1223.Google Scholar
- Lorig, K., Stewart, A., Ritter, P., Gonzalez, V., Laurent, D., & Lynch, J. (1996). Outcome measures for health education and other health care interventions. Thousand Oaks, CA: Sage Publications.Google Scholar
- Magaña, S., Parish, S. L., Rose, R. A., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50(4), 287–299. https://doi.org/10.1352/1934-9556-50.4.287.CrossRefPubMedGoogle Scholar
- Rask, K. J., Ziemer, D. C., Kohler, S. A., Hawley, J. N., Arinde, F. J., & Barnes, C. S. (2009). Patient activation is associated with healthy behaviors and ease in managing diabetes in an indigent population. The Diabetes Educator, 35(4), 622–630. https://doi.org/10.1177/0145721709335004.CrossRefPubMedGoogle Scholar
- Schreck, K. A., Williams, K., & Smith, A. F. (2004). A comparison of eating behaviors between children with and without autism. Journal of Autism and Developmental Disorders, 34, 433–438. https://doi.org/10.1023/B:JADD.0000037419.78531.86.CrossRefPubMedGoogle Scholar
- Zaidman‐Zait, A., Mirenda, P., Zumbo, B. D., Wellington, S., Dua, V., & Kalynchuk, K. (2010). An item response theory analysis of the Parenting Stress Index‐Short Form with parents of children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 51(11), 1269–1277. https://doi.org/10.1111/jcpp.12191.CrossRefPubMedGoogle Scholar