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在资源匮乏地区调整早期自闭症照料者指导干预措施以用于远程医疗服务:南非关于“内容”与“原因”的一项研究

Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why'.

作者信息

Viljoen Marisa, Seris Noleen, Shabalala Nokuthula, Ndlovu Minkateko, de Vries Petrus J, Franz Lauren

机构信息

Division of Child & Adolescent Psychiatry, University of Cape Town, South Africa.

Duke Center for Autism and Brain Development, Department of Psychiatry and Behavioral Sciences, Duke University, Durham, USA.

出版信息

Autism. 2025 May;29(5):1246-1262. doi: 10.1177/13623613241300774. Epub 2024 Dec 10.

Abstract

The COVID-19 pandemic required in-person interventions to be adapted for remote delivery all over the globe. In South Africa, an in-person cascaded task-sharing naturalistic developmental behavioural intervention was adapted for telehealth delivery in a low-resource context. Here we describe the adaptations made (the 'what') and reasons for adaptations (the 'why'). The Framework for Modification and Adaptations (FRAME) was used to document the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why'. Systematic member-checking ensured robustness of results. The 'what' included 10 adaptations: selecting WhatsApp as delivery platform, developing images with simple text to communicate intervention concepts, modifying session structure for hybrid delivery, including a caregiver self-reflection checklist, utilizing online practitioner training, supervision, assessment and consent procedures, developing session recording procedures, distributing session materials electronically, and developing caregiver-child interaction recording and uploading protocols. The 'why' included three outer contextual factors (the digital divide, WhatsApp security/privacy policy, and COVID-19 restrictions), three inner contextual factors (characteristics of caregivers and practitioners, ethics board guidance, and school leadership and organizational characteristics) and one innovation factor (support from intervention co-developers). Adaptations were made in response to unchangeable outer contextual factors and through identification of malleable inner contextual factors.Lay abstractWe were busy with an early autism caregiver-coaching programme in South Africa, when COVID-19 stopped all in-person work. We changed the programme so it could be done using computers and/or phones. Here, we describe programme changes (which we call the 'what') and the reasons for those changes (which we call the 'why'). We used a tool called the Framework for Modification and Adaptations (FRAME) to describe the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why' of our programme changes. The team members who helped make these changes checked that the changes described were correct. We made 10 changes in total: we used WhatsApp to deliver the programme, made simple pictures with words as visual tools for the programme, changed some session activities, changed a self-reflection checklist, provided all activities online, changed the way assessment and consent was done, made a session recording guide, sent things needed for sessions by email and WhatsApp, and made a caregiver-child play recording guide. The reasons for changes (the 'why') were about factors outside schools (the types of phones and data people had, WhatsApp security rules, COVID-19 rules), things inside schools/workplace (about the caregivers and nonspecialists themselves, ethics boards, things about the school itself), and support from people who developed the programme. Changes were made by working with things inside schools/workplace that could change. Identifying what could change helped focus and guide which changes were made to a programme.

摘要

新冠疫情使得全球范围内的面对面干预措施都需调整为远程实施。在南非,一项面对面的分级任务分担自然主义发展行为干预措施在资源匮乏的环境下被调整为通过远程医疗实施。在此,我们描述所做的调整(“是什么”)以及调整的原因(“为什么”)。使用修改与调整框架(FRAME)记录“是什么”,并使用探索、准备、实施、维持(EPIS)框架描述“为什么”。系统的成员核对确保了结果的稳健性。“是什么”包括10项调整:选择WhatsApp作为实施平台,制作带有简单文字的图片以传达干预概念,修改课程结构以进行混合式实施,纳入一份照顾者自我反思清单,利用在线从业者培训、监督、评估和同意程序,制定课程录制程序,以电子方式分发课程材料,以及制定照顾者与儿童互动记录及上传协议。“为什么”包括三个外部背景因素(数字鸿沟、WhatsApp安全/隐私政策以及新冠疫情限制)、三个内部背景因素(照顾者和从业者的特征、伦理委员会指导以及学校领导和组织特征)以及一个创新因素(来自干预共同开发者的支持)。调整是针对不可改变的外部背景因素并通过识别可改变的内部背景因素做出的。

摘要

我们当时正在南非开展一项针对自闭症早期照顾者的辅导项目,这时新冠疫情使得所有面对面工作都停止了。我们对项目进行了调整,使其可以通过电脑和/或手机完成。在此,我们描述项目的变化(我们称之为“是什么”)以及这些变化的原因(我们称之为“为什么”)。我们使用一种名为修改与调整框架(FRAME)的工具来描述“是什么”,并使用探索、准备、实施、维持(EPIS)框架来描述我们项目变化的“为什么”。帮助做出这些改变的团队成员检查了所描述的变化是否正确。我们总共做了10项改变:我们使用WhatsApp来实施项目,制作带有文字的简单图片作为项目的视觉工具,改变了一些课程活动,修改了一份自我反思清单,在线提供所有活动,改变了评估和同意的方式,制定了一份课程录制指南,通过电子邮件和WhatsApp发送课程所需物品,以及制定了一份照顾者与儿童互动游戏记录指南。变化的原因(“为什么”)涉及学校外部的因素(人们拥有的手机类型和数据、WhatsApp安全规则、新冠疫情规则)、学校/工作场所内部的因素(关于照顾者和非专业人员自身、伦理委员会、学校本身的情况)以及项目开发者的支持。通过处理学校/工作场所内部可改变的因素做出了改变。识别哪些可以改变有助于聚焦并指导对项目做出哪些改变。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4056/12038070/1a0c4ca76aca/10.1177_13623613241300774-fig1.jpg

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