家长对以家长为主导的唐氏综合症幼儿干预措施的看法。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2024-10-08 DOI:10.1111/jar.13307

Madison M. Walsh, Kaylyn Van Deusen, Miranda E. Pinks, Benedetta Ceci, Susan Hepburn, Nathanial R. Riggs, Francesca Pulina, Chiara Marcolin, Sara Onnivello, Sara Colaianni, Bethany Gray, Lisa A. Daunhauer, Silvia Lanfranchi, Deborah J. Fidler

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引用次数: 0

摘要

背景：以家长为媒介的干预（PMI）是对唐氏综合症（DS）等神经遗传疾病进行定制干预的一种潜在的可扩展方法。由于家长干预需要家长的持续参与，因此必须根据目标用户的需求来开发。本研究调查了照顾者的意见和偏好，为开发针对唐氏综合症儿童的综合症干预措施提供参考：DS儿童的家长（n = 34）参加了讨论PMI的焦点小组。对访谈内容进行转录，并采用主题分析法对数据进行编码：结果：确定了三个主题：儿童智能教育的优点、儿童智能教育的缺点和儿童智能教育的首选功能。为了与家长的偏好保持一致，未来针对 DS 儿童的项目管理应只需要很短的时间，将干预活动融入日常活动中，并让家庭成员参与到活动中：研究结果对开发新型干预措施以支持 DS 儿童和其他神经遗传疾病儿童的早期发展具有重要意义。

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Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome

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.

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.