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A Preliminary Study of Activation, Stress, and Self-Management of Parents of Children with Autism Spectrum Disorder

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Abstract

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.

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Acknowledgements

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.

Author Contributions

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.

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Authors and Affiliations

  1. University of Kentucky, Lexington, KY, USA

    Lisa Ruble & Venus W. Wong

  2. Autism Speaks, New York, USA

    Donna Murray

  3. Cincinnati Children’s Hospital Medical Center, Cincinnati, USA

    Donna Murray & Kristen Brevoort

  4. Indiana University - Purdue University at Indianapolis, Indianapolis, USA

    John H. McGrew

Authors
  1. Lisa Ruble
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  2. Donna Murray
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  3. John H. McGrew
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  4. Kristen Brevoort
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  5. Venus W. Wong
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Corresponding author

Correspondence to Lisa Ruble.

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The authors declare they have no competing interests.

Ethical Approval

The study was approved by the human subjects committees of the University of Kentucky, Cincinnati Children’s Hospital, and the University of Cincinnati.

Informed Consent

All participants provided informed consent prior to participation in the study.

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Ruble, L., Murray, D., McGrew, J.H. et al. A Preliminary Study of Activation, Stress, and Self-Management of Parents of Children with Autism Spectrum Disorder. J Child Fam Stud 27, 825–834 (2018). https://doi.org/10.1007/s10826-017-0814-5

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  • DOI: https://doi.org/10.1007/s10826-017-0814-5

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