先天性寨卡综合征患儿在使用电动助行器时的经历:一项采用摄影 "选择 "法进行的定性研究。

IF 16.4 1区 化学 Q1 CHEMISTRY, MULTIDISCIPLINARY
Accounts of Chemical Research Pub Date : 2024-11-01 Epub Date: 2024-05-07 DOI:10.1080/17483107.2024.2348071
Amanda Spínola Barreto, Jean Bendito Felix, Heather Feldner, Mara Terezinha Figueiredo, Gaby Kelly Macedo, Dinara Nascimento Coutinho, Maria do Socorro Gadelha, Karolinne Monteiro, Egmar Longo
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引用次数: 0

摘要

目的:先天性寨卡综合征(CZS)通常会导致患儿出现严重的运动障碍,无法独立行走。对于有严重运动障碍的幼儿,我们建议他们及早通过乘骑小汽车进行机动活动,从而能够在各种环境中独立行走。本研究旨在探讨母亲对其子女在家中和社区中使用乘骑式儿童车的体验的看法,重点关注 CZS 儿童:本研究采用 "摄影声音 "方法,是一项定性和描述性研究。研究对象包括四名参与 "泽卡出发 "干预项目的 CZS 儿童的母亲。研究包括以下六个步骤:1) 介绍指导问题并进行摄影舆论培训;2) 参与者拍摄照片;3) 个别访谈以了解照片的背景;4) 利用主题分析原则进行转录和数据分析;5) 由母亲验证分析结果;6) 向社区展示照片:母亲们和研究人员选出了 21 张最相关的照片,这些照片揭示了与使用电动乘骑车相关的五大主题:1)参与体验;2)移动的独立性;3)移动设备的特点;4)家庭支持;5)环境的无障碍性:结论:参与者提供的叙述以及描述 CZS 儿童日常生活的照片,揭示了功能性、自主性和参与性等方面的问题。这些设备的使用有助于实现整体公平,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人。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experiences of children with congenital Zika syndrome while using motorized mobility: a qualitative study using the photovoice method.

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.

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来源期刊
Accounts of Chemical Research
Accounts of Chemical Research 化学-化学综合
CiteScore
31.40
自引率
1.10%
发文量
312
审稿时长
2 months
期刊介绍: Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.
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