Haakonsen Smith Christy, Turbitt Erin, Muschelli John, Leonard Lori, Lewis Katie L, Freedman Brian, Muratori Michelle, Biesecker Barbara B
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes Health, 31 Center Dr, MSC 2073, Building 31, Room B1B36, Bethesda, MD, 20892-2073, USA.
Institute of Genetic Medicine, Johns Hopkins University, Baltimore, MD, USA.
J Genet Couns. 2018 Feb;27(1):252-262. doi: 10.1007/s10897-017-0144-1. Epub 2017 Sep 6.
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.
自闭症谱系障碍（ASD）患儿的照料者可能会发现，他们很难有掌控感，也难以应对照料孩子所带来的身体和情感方面的整体需求。虽然照料者能够成功应对高度的压力，但随着时间的推移，他们应对压力的资源和能力是有限的。与受影响家庭合作的遗传咨询师或许能够帮助家长更有效地管理与该疾病相关的压力。目前在遗传咨询中报道的短期干预措施很少，不过实施基于证据的实例或许是可行的。本研究旨在评估一种应对效能训练（CET）干预措施的可行性，该干预旨在提高ASD患儿照料者的应对自我效能（CSE），最终目标是将这种干预措施应用于遗传咨询实践。采用随机治疗对照设计来研究在ASD患儿照料者中使用CET进行干预的可行性。主要结果是干预措施的可行性；次要结果是与对照组相比，干预组CSE的改善情况。招募照料者并将其随机分为治疗组（n = 15）或对照组（n = 13）。其中，22人完成了研究（保留率：78.6%）。该干预措施具有高度可行性；大多数照料者认为CET有帮助、实用、有用且相对容易参与。治疗组从干预前到干预后CSE显著增加（p = 0.02）。比较干预前后的变化时，组间差异不显著。我们提供了初步证据表明CET可能对ASD患儿的照料者有益。这项可行性研究的结果支持在更大的队列中开展该干预措施的II期研究，并旨在将其应用于遗传咨询环境中。
