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Journal of Genetic Counseling

, Volume 27, Issue 1, pp 252–262 | Cite as

Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention

  • Christy Haakonsen Smith
  • Erin Turbitt
  • John Muschelli
  • Lori Leonard
  • Katie L. Lewis
  • Brian Freedman
  • Michelle Muratori
  • Barbara B. Biesecker
Original Research

Abstract

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.

Keywords

Autism spectrum disorder Adaptation Coping skills Parent Caregiver 

Notes

Acknowledgements

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

Financial Disclosures

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.

Animal Subjects

No animal studies were carried out by the authors for this article.

Supplementary material

10897_2017_144_MOESM1_ESM.pdf (64 kb)
ESM 1 (PDF 63 kb)

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Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  1. 1.Social and Behavioral Research Branch, National Human Genome Research InstituteNational Institutes HealthBethesdaUSA
  2. 2.Institute of Genetic MedicineJohns Hopkins UniversityBaltimoreUSA
  3. 3.Departent of BiostatisticsJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  4. 4.Department of Development SociologyCornell UniversityIthacaUSA
  5. 5.Medical Genomics and Metabolic Genetics Branch, National Human Genome Research InstituteNational Institutes HealthBethesdaUSA
  6. 6.Center for Disabilities StudiesUniversity of DelawareNewarkUSA
  7. 7.Johns Hopkins Center for Talented YouthBaltimoreUSA

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