GeniAuti: Toward Data-Driven Interventions to Challenging Behaviors of Autistic Children through Caregivers' Tracking
GeniAuti: Toward Data-Driven Interventions to Challenging Behaviors of Autistic Children through Caregivers' Tracking
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GeniAuti：通过护理人员的追踪，对自闭症儿童的行为进行数据驱动的干预
DOI：
10.1145/3512939
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发表时间：
2022
影响因子：
--
通讯作者：
Hong, Hwajung
中科院分区：
文献类型：
--
作者：
Jo, Eunkyung;Park, Seora;Bang, Hyeonseok;Hong, Youngeun;Kim, Yeni;Choi, Jungwon;Kim, Bung Nyun;Epstein, Daniel A.;Hong, Hwajung
具有挑战性的行为会严重影响自闭症儿童的学习和社交，并会给他们的照顾者带来压力和负担。记录挑战性行为对于确定哪些环境因素影响这些行为至关重要，例如其他人如何应对孩子的此类行为。护理人员跟踪的有关孩子挑战性行为的数据可以帮助临床专家就如何管理此类行为提出明智的建议。为了支持护理人员记录孩子的挑战性行为，我们开发了 GeniAuti，这是一种基于移动的数据收集工具，建立在临床数据收集表格的基础上，用于记录挑战性行为和其他临床相关的背景信息，例如地点、持续时间、强度以及触发此类行为的因素。通过与 19 名亲子对和三名专家合作者的开放式部署，看护者发现 GeniAuti 的价值在于：(1) 更加关注和反思行为环境，包括他们自己的应对策略；(2) 发现孩子行为的积极方面；(3) 围绕看护者跟踪的数据促进与临床专家的合作，为他们的孩子制定量身定制的干预策略。然而，参与者会经历社会环境中记录行为的表面挑战、护理人员和临床专家之间围绕结构化记录过程的相互冲突的观点，以及记录和反思强烈负面经历而产生的情绪挣扎。考虑到基于护理人员的健康跟踪和护理人员与临床医生协作的复杂性，我们建议设计机会以促进护理人员和临床医生之间的谈判并考虑护理人员的情感需求。
Challenging behaviors significantly impact learning and socialization of autistic children and can stress and burden their caregivers. Documentation of challenging behaviors is fundamental for identifying what environmental factors influence them, such as how others respond to a child's such behaviors. Caregiver-tracked data on their child's challenging behaviors can help clinical experts make informed recommendations about how to manage such behaviors. To support caregivers in recording their children's challenging behaviors, we developed GeniAuti, a mobile-based data-collection tool built upon a clinical data collection form to document challenging behaviors and other clinically relevant contextual information such as place, duration, intensity, and what triggers such behaviors. Through an open-ended deployment with 19 parent-child pairs and three expert collaborators, caregivers found GeniAuti valuable for (1) becoming more attentive and reflective to behavioral contexts, including their own response strategies, (2) discovering positive aspects of their children's behaviors, and (3) promoting collaboration with clinical experts around the caregiver-tracked data to develop tailored intervention strategies for their children. However, participant experiences surface challenges of logging behaviors in social circumstances, conflicting views between caregivers and clinical experts around the structured recording process, and emotional struggles resulting from recording and reflecting on intensely negative experiences. Considering the complex nature of caregiver-based health tracking and caregiver--clinician collaboration, we suggest design opportunities for facilitating negotiations between caregivers and clinicians and accounting for caregivers' emotional needs.
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