家长对针对唐氏综合征幼儿的家长介导干预的看法。
Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome.
机构信息
Department of Human Development & Family Studies, Colorado State University, Fort Collins, Colorado, USA.
Prevention Research Center, Colorado State University, Fort Collins, Colorado, USA.
出版信息
J Appl Res Intellect Disabil. 2024 Nov;37(6):e13307. doi: 10.1111/jar.13307.
BACKGROUND
Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to inform the development of syndrome-informed interventions for children with DS.
METHOD
Parents of children with DS (n = 34) participated in focus groups discussing PMI. Interviews were transcribed and a thematic analysis was applied to code the data.
RESULTS
Three themes were identified: advantages of PMI, disadvantages of PMI and preferred features of PMI. To align with parent preferences, future PMIs for children with DS should require a brief time commitment, blend intervention activities into daily routines and include family members in activities.
CONCLUSIONS
Findings have implications for developing novel interventions to support early development in children with DS and other neurogenetic conditions.
背景
家长介导干预（PMI）是一种针对唐氏综合征（DS）等神经发育障碍进行定制干预的潜在可扩展方法。由于 PMIs 需要持续的家长参与，因此必须根据预期用户的需求进行开发。本研究调查了照顾者的意见和偏好，以提供信息，为患有 DS 的儿童开发综合征相关的干预措施。
方法
34 名 DS 儿童的父母参加了焦点小组讨论 PMI。对访谈进行了转录，并对数据进行了主题分析。
结果
确定了三个主题：PMI 的优势、PMI 的劣势和 PMI 的首选功能。为了符合家长的偏好，未来针对 DS 儿童的 PMIs 应需要投入的时间较短，将干预活动融入日常生活中，并让家庭成员参与活动。
结论
这些发现对开发支持 DS 儿童和其他神经发育障碍儿童早期发展的新干预措施具有意义。
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