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先天性寨卡综合征儿童使用机动移动工具的体验:使用摄影法的定性研究。

Experiences of children with congenital Zika syndrome while using motorized mobility: a qualitative study using the photovoice method.

机构信息

Department of Health Sciences of Trairí (UFRN-FACISA), Federal University of Rio Grande do Norte, Santa Cruz, Brazil.

Department of Physiotherapy, University of WA, Seattle, WA, USA.

出版信息

Disabil Rehabil Assist Technol. 2024 Nov;19(8):3089-3099. doi: 10.1080/17483107.2024.2348071. Epub 2024 May 7.

Abstract

AIM

The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS.

METHODS

This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community.

RESULTS

The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment.

CONCLUSION

The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.

摘要

目的

先天性寨卡综合征(CZS)常导致受影响儿童严重运动障碍,使独立行走变得不可能。对于严重运动障碍的幼儿,早期通过骑乘汽车引入机动移动能力已被推荐,使他们能够在各种环境中独立移动。本研究旨在探讨母亲对其患有 CZS 的孩子在家中和社区中使用骑乘汽车的体验的看法。

方法

这是一项使用照片声音法的定性和描述性研究设计。纳入了参加“走寨卡”干预项目的 4 位患有 CZS 的儿童的母亲。研究涉及以下六个步骤:1)呈现指导问题和照片声音培训;2)参与者拍摄照片;3)个人访谈以背景化照片;4)使用主题分析原则进行转录和数据分析;5)由母亲验证分析;6)向社区展示照片。

结果

母亲和研究人员选择了 21 张最相关的照片,这些照片揭示了与使用机动骑乘汽车相关的五个主要主题:1)参与体验;2)移动独立性;3)移动设备的特点;4)家庭支持;5)环境的可达性。

结论

参与者提供的叙述以及描绘患有 CZS 的儿童日常生活的照片,揭示了功能、自主性和参与的方面。这些设备的使用有助于整体公平,打破社会和文化障碍,使残疾儿童能够被同龄人视为平等的。

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