父母采取行动适应黑人自闭症儿童的父母:试点结果

IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES
Sarah Dababnah, Irang Kim, Sandy Magaña, Yan Zhu
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引用次数: 5

摘要

尽管在自闭症诊断和服务获取方面存在显著的种族差异,但为抚养黑人自闭症儿童的父母提供的与文化相关的、以家庭为中心的项目却非常缺乏。采用混合方法的趋同研究设计,我们报告了一项同伴对同伴项目“父母采取行动”(PTA)的试点试验的定性和定量结果,该项目适用于患有自闭症或自闭症可能性增加的黑人自闭症儿童的主要家庭照顾者。我们的目的是了解在忠实于手册的情况下提供PTA的可行性;参与者对项目策略的接受程度;以及前后孩子、父母和家庭结果的变化。三名同伴导师(“家长领袖”)为七名参与者提供了14次干预。所有家长领袖和参与者都是黑人自闭症儿童的母亲。我们就项目内容和成果采访了参与者和家长领袖。我们还收集了关于自闭症知识、家庭结果(如倡导)、压力、抑郁和儿童行为的忠诚检查表和前后父母报告测量。家长仅在干预后报告了项目的可接受性。根据我们的观察和家长领导自我报告的检查表,我们发现家长领导们提供的课程总体上是高度忠诚的。参与者对干预策略的接受度较高,并就如何改进内容的应用提供了反馈。我们发现,在父母报告的关于他们的权利和儿童权益、自闭症知识和儿童社会能力的知识方面,在统计上有显著的量化改善。参与者和家长领导在访谈中扩展了这些变化,并确定了与参与项目有关的自闭症知识、父母压力和抑郁、家庭结果和儿童行为的改善。我们得出结论,PTA是一个有希望的,文化和背景相关的干预黑人自闭症儿童的父母。需要一项随机对照试验来严格评估儿童、父母和家庭结果的变化。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Parents taking action adapted to parents of Black autistic children: Pilot results

There is a dearth of culturally relevant, family-centered programs for parents raising Black autistic children, despite significant racial disparities in autism diagnoses and service access. Using a mixed-methods convergent study design, we report qualitative and quantitative findings from a pilot trial of a peer-to-peer program, Parents Taking Action (PTA), adapted to primary family caregivers of Black autistic children with or at increased likelihood for autism. We aimed to understand the feasibility of delivering PTA with fidelity to the manual; participants' acceptability of program strategies; and pre–post changes in child, parent, and family outcomes. Three peer mentors (“Parent Leaders”) delivered the 14-session intervention to seven participants. All Parent Leaders and participants were mothers of Black autistic children. We interviewed participants and Parent Leaders regarding program content and outcomes. We also collected fidelity checklists and pre–post, parent-report measures on autism knowledge, family outcomes (e.g., advocacy), stress, depression, and child behavior. Parents reported on program acceptability at post-intervention only. We found the Parent Leaders delivered the program with overall high levels of fidelity, based on our observations and Parent Leaders' self-reported checklists. Participants reported high acceptability of the intervention strategies and provided feedback on methods to improve application of the content. We found statistically significant pre–post quantitative improvements in parent-reported knowledge of their rights and child advocacy, autism knowledge, and child social competence. Participants and Parent Leaders expanded on these changes in interviews, and identified improvements in autism knowledge, parent stress and depression, family outcomes, and child behavior related to program participation. We conclude PTA is a promising, culturally and contextually relevant intervention for parents of Black autistic children. A randomized controlled trial is needed to rigorously evaluate changes in child, parent, and family outcomes.

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来源期刊
CiteScore
4.10
自引率
5.90%
发文量
38
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