Parent reflections of experiences of participating in a randomized controlled trial of a behavioral intervention for infants at risk of autism spectrum disorders
Parent reflections of experiences of participating in a randomized controlled trial of a behavioral intervention for infants at risk of autism spectrum disorders
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DOI：
10.1177/1362361313483928
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发表时间：
2014-07-01
期刊：
影响因子：
5.2
通讯作者：
Turner-Brown, Lauren M.
中科院分区：
文献类型：
--
作者：
Freuler, Ashley C.;Baranek, Grace T.;Turner-Brown, Lauren M.
背景资料：尽管越来越多的证据表明早期干预对自闭症谱系障碍儿童的有效性，但很少有研究考虑父母对参与早期干预的压力和机会的各种看法和资源。研究是特别缺乏周围的经验，父母与婴儿谁是在自闭症谱系障碍的风险，但没有（尚未）有一个诊断conditions.Objectives：这项定性研究的目的是探讨照顾者的经验后，他们参加了一个随机对照试验的适应性反应教学，亲子关系为重点的干预，在社区样本中的自闭症谱系障碍的风险婴儿。父母被随机分为两组，一组是治疗组，他们参加了适应性反应教学干预，另一组是社区服务组，他们被提供了有关当地早期干预服务的信息，并被鼓励但不要求寻求社区服务，作为他们纳入随机对照试验的一部分。在完成随机对照试验后，对家庭进行了半结构化访谈。参与者包括13名母亲和4名父亲。五对夫妇一起采访了14个家庭。在采访时，孩子的年龄从39个月到46个月不等。对10个随机分配到治疗组和4个随机分配到社区服务组的家庭的14个访谈进行分析。通过主题分析方法进行分析，该方法涉及跨组和组内的编码和主题识别的系统过程。结果：跨组出现的主题包括：克服一切困难，个人关系的价值，让球滚动，让爸爸上船。一个广泛的主题代表的数据组内：双赢（适应响应式教学组）和导航中的歧义（社区服务组）。结论：这项研究阐明了个人的经验和背景影响，影响家庭谁是参与随机对照试验，通过早期识别的“风险”状态自闭症谱系障碍在他们的婴儿。从这些访谈中获得的见解可能有助于改进和加强干预模式，并加强对家庭的早期干预服务。
Background: Despite the mounting evidence of efficacy of early intervention for children with autism spectrum disorders, there is little research that considers the various perceptions and resources with which parents respond to the pressures and opportunities associated with participation in early intervention. Research is particularly lacking surrounding experiences of parents with infants who are at risk of autism spectrum disorders but do not (yet) have a diagnosed condition.Objectives: This qualitative study aimed to explore the experiences of caregivers following their participation in a randomized controlled trial of Adapted Responsive Teaching, a parent-infant relationship-focused intervention for infants at risk of autism spectrum disorders in a community sample. Parents were randomized into either the treatment group, in which they participated in the Adapted Responsive Teaching intervention, or the community services group, in which they were provided with information regarding local early intervention services and were encouraged, but not required to, seek community services as part of their inclusion in the randomized controlled trial.Methods: Semistructured interviews were conducted with families following the completion of the randomized controlled trial. Participants consisted of 13 mothers and 4 fathers. Five dyads were interviewed together for a total of 14 families. Child ages ranged from 39 to 46 months at the time of interview. Analysis was conducted on 14 interviews from 10 families who were randomized into the treatment group and 4 families randomized into the community services group. Analysis was informed by a thematic analysis approach, which involved a systematic process of coding and theme identification both across and within groups.Results: Themes that emerged across groups included Working against all odds, Value of the personal relationship, Getting the ball rolling, and Getting dad on board. One broad theme represented the data within the groups: Win-win (Adapted Responsive Teaching group) and Navigating amidst ambiguity (community services group).Conclusions: This study illuminates the personal experiences and contextual influences affecting families who are participating in the randomized controlled trial through early identification of "risk" status for autism spectrum disorders in their infants. Insights gained from these interviews may serve to refine and enhance intervention models and to enhance early intervention services for families.