Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention
Caregivers of children with autism spectrum disorder (ASD) may find it difficult to feel a sense of control and to cope with the overall physical and emotional demands of caring for their child. While caregivers are able to successfully cope with a high level of stress, there are limits to their resources and abilities to cope over time. Genetic counselors working with affected families may be able to help parents more effectively manage stress related to the disorder. Few short-term interventions have been reported in genetic counseling yet implementation of evidence-based examples may be achievable. This study aimed to assess the feasibility of a coping effectiveness training (CET) intervention designed to enhance coping self-efficacy (CSE) among caregivers of children with ASD, with the eventual goal of translating this intervention into genetic counseling practice. A randomized treatment-control design was used to investigate the feasibility of an intervention using CET among caregivers of children with ASD. The primary outcome was the feasibility of the intervention; the secondary outcome was improvements in CSE in the intervention group as compared to the control group. Caregivers were recruited and randomized into the treatment (n=15) or control (n=13) groups. Of these, 22 completed the study (retention: 78.6%). The intervention was highly feasible; most caregivers found the CET helpful, practical, useful, and relatively easy to attend. The treatment group demonstrated significantly increased CSE from pre-intervention to post-intervention (p=0.02). Between group differences were not significant when comparing the pre-post changes. We provide preliminary evidence that CET may be beneficial to caregivers of children with ASD. The results of this feasibility study support development of a phase II study of this intervention in a larger cohort, aimed to be implemented into a genetic counseling setting.
KeywordsAutism spectrum disorder Adaptation Coping skills Parent Caregiver
We thank the participants in this feasibility study who gave of their time and provided detailed feedback on the intervention. We also thank Trish Magyari for helping to train Christy Haakonsen Smith in the intervention.
Compliance with Ethical Standards
This research was supported by the Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health.
Conflict of Interest
Author Haakonsen Smith C, Author Turbitt E, Author Muschelli J, Author Leonard L, Author Lewis KL, Author Freedman B, Author Muratori M, and Author Biesecker declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
- Athens, B. A., Caldwell, S. L., Umstead, K. L., Connors, P. D., Brenna, E., & Biesecker, B. B. (2017). A systematic review of randomized controlled trials to assess outcomes of genetic counseling. Journal of Genetic Counseling, 1–32. https://doi.org/10.1007/s10897-017-0082-y
- Baty, B. J., Trepanier, A., Bennett, R. L., Davis, C., Erby, L., Hippman, C., et al. (2016). Developing a model of advanced training to promote career advancement for certified genetic counselors: An investigation of expanded skills, advanced training paths, and professional opportunities. Journal of Genetic Counseling, 25(4), 625–634.CrossRefPubMedGoogle Scholar
- Center of Disease Control and Prevention. (2016). Autism spectrum disorder data and statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html.
- Chesney, M., & Folkman, S. (1994). Psychological impact of HIV disease and implications for intervention. The Psychiatric Clinics of North America, 17(1), 163–182.Google Scholar
- Eijzenga, W., Aaronson, N. K., Hahn, D. E., Sidharta, G. N., van der Kolk, L. E., Velthuizen, M. E., et al. (2014). Effect of routine assessment of specific psychosocial problems on personalized communication, counselors' awareness, and distress levels in cancer genetic counseling practice: A randomized controlled trial. Journal of Clinical Oncology, 32(27), 2998–3004.CrossRefPubMedGoogle Scholar
- Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N., et al. (2014). Improving maternal mental health after a child's diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40–46. https://doi.org/10.1001/jamapediatrics.2013.3445.
- Goodwin, P. J., Leszcz, M., Quirt, G., Koopmans, J., Arnold, A., Dohan, E., et al. (2000). Lessons learned from enrollment in the BEST study—A multicenter, randomized trial of group psychosocial support in metastatic breast cancer. Journal of Chinese Entrepreneurship, 53(1), 47–55.Google Scholar
- Hayes, S. A., & Watson, S. L. (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(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.
- Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and well-being in parents of children with autism Spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9.
- Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Publishing Company, Inc.Google Scholar
- Lewis, K. (2008). Caregiver adaptation to pervasive developmental disorders. JHU/NHGRI Genetic Counseling Program Master's Thesis.Google Scholar
- McInerney-Leo, A., Biesecker, B. B., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Johnson, E., et al. (2004). BRCA1/2 testing in hereditary breast and ovarian cancer families: Effectiveness of problem-solving training as a counseling intervention. American Journal of Medical Genetics Part A, 130(3), 221–227.CrossRefGoogle Scholar
- Nguyen, C. T., Fairclough, D. L., & Noll, R. B. (2016). Problem-solving skills training for mothers of children recently diagnosed with autism spectrum disorder: A pilot feasibility study. Autism, 20(1), 55–64. https://doi.org/10.1177/1362361314567134.
- Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38(5), 876.CrossRefPubMedPubMedCentralGoogle Scholar
- Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7.