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"It's like a guessing game all the time": parent insights on barriers, supports, and priorities for children with cortical visual impairment and complex communication needs.“这就像一场猜谜游戏”:家长对皮质视觉障碍和复杂沟通需求儿童的障碍、支持和重点的见解。
Augment Altern Commun. 2023 Dec;39(4):256-269. doi: 10.1080/07434618.2023.2206904. Epub 2023 May 9.
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Bodily-tactile early intervention for a mother and her child with visual impairment and additional disabilities: a case study.身体触觉早期干预对一名视障和多重残障儿童与其母亲:案例研究。
Disabil Rehabil. 2023 Jun;45(12):2057-2072. doi: 10.1080/09638288.2022.2082563. Epub 2022 Jul 2.
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A practical guide to reflexivity in qualitative research: AMEE Guide No. 149.质性研究中反思性的实用指南:AMEE指南第149号
Med Teach. 2022 Apr 7:1-11. doi: 10.1080/0142159X.2022.2057287.
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Children With Cortical Visual Impairment and Complex Communication Needs: Identifying Gaps Between Needs and Current Practice.皮质性视觉障碍并伴有复杂沟通需求的儿童:识别需求与当前实践之间的差距。
Lang Speech Hear Serv Sch. 2021 Apr 20;52(2):612-629. doi: 10.1044/2020_LSHSS-20-00088. Epub 2021 Feb 16.
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Home-based early intervention in infants and young children with visual impairment using the Developmental Journal: longitudinal cohort study.家庭为基础的婴幼儿视障早期干预:使用《发育日志》:纵向队列研究。
Dev Med Child Neurol. 2019 Jun;61(6):697-709. doi: 10.1111/dmcn.14081. Epub 2018 Nov 13.
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Language and communication development in preschool children with visual impairment: A systematic review.视力障碍学龄前儿童的语言与沟通发展:一项系统综述。
S Afr J Commun Disord. 2015;62(1):e1-e10. doi: 10.4102/sajcd.v62i1.119.
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World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects.《世界医学协会赫尔辛基宣言:涉及人类受试者的医学研究伦理原则》
JAMA. 2013 Nov 27;310(20):2191-4. doi: 10.1001/jama.2013.281053.
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Social communicative variation in 1-3-year-olds with severe visual impairment.重度视力障碍1至3岁儿童的社交沟通差异
Child Care Health Dev. 2014 Mar;40(2):158-64. doi: 10.1111/cch.12065. Epub 2013 May 12.
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Development of early communication skills in the first two years of life.生命头两年早期沟通技能的发展。
Infant Behav Dev. 2013 Feb;36(1):71-83. doi: 10.1016/j.infbeh.2012.11.001. Epub 2012 Dec 20.
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The dynamic landscape of exceptional language development.卓越语言发展的动态图景。
Strabismus. 2012 Jun;20(2):69-73. doi: 10.3109/09273972.2012.680236.

探索为视力障碍和失明儿童提供的沟通支持:一项案例研究。

Exploring communication supports for children with visual impairment and blindness: A case study.

作者信息

Abrahams Kristen, de Vos Dellicia, Bam Armand, Kathard Harsha

机构信息

Department of Health and Rehabilitation Sciences, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.

Division of Student Affairs, Disability Unit, Cape Peninsula University of Technology, Cape Town, South Africa.

出版信息

Afr J Disabil. 2025 May 14;14:1620. doi: 10.4102/ajod.v14i0.1620. eCollection 2025.

DOI:10.4102/ajod.v14i0.1620
PMID:40469562
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12135122/
Abstract

BACKGROUND

Early communication supports are essential for development, learning and later employment. For children with visual impairments and blindness (VI and B), we argue that communication and its supports need to be considered outside of the normative ableist framework to best facilitate development.

OBJECTIVES

This study aimed to explore and describe how a home-based programme at a community-based organisation supported the communication development of children with VI and B by exploring and describing: (1) the organisation, its context and ethos; (2) the programme methodology including, role players, skills and activities; and (3) communication opportunities.

METHOD

A case study design was employed, and data were collected through interviews, document reviews and observations. Notably, one member of the research team has a VI, which provided additional context and understanding of the case and enhanced the analysis process.

RESULTS

Key themes emerging from the data included the organisation's history and context that shaped its ethos, the focus on a parent-led methodology and the support of communication through early multimodal opportunities.

CONCLUSION

The findings emphasise the importance of understanding communication and communication supports beyond the normative ableist framework, which creates opportunities to appreciate and support communication holistically. More specifically, for speech-language pathologists, this study can expand their understanding of communication and raises questions about the profession's potential contribution.

CONTRIBUTION

The study contributes to the literature within the South African context that demonstrates the value of communication and further captures how multimodal community support contributes to the health and wellbeing of people with disabilities.

摘要

背景

早期沟通支持对儿童的发展、学习及日后就业至关重要。对于视力障碍和失明儿童(VI和B),我们认为沟通及其支持需要在规范的能力主义框架之外加以考量,以更好地促进其发展。

目的

本研究旨在通过探索和描述以下方面,来探究和描述一个社区组织的家庭项目如何支持VI和B儿童的沟通发展:(1)该组织、其背景和理念;(2)项目方法,包括参与者、技能和活动;(3)沟通机会。

方法

采用案例研究设计,通过访谈、文件审查和观察收集数据。值得注意的是,研究团队中有一名成员有视力障碍,这为案例提供了额外的背景和理解,并加强了分析过程。

结果

数据中出现的关键主题包括塑造其理念的组织历史和背景、对家长主导方法的关注以及通过早期多模态机会对沟通的支持。

结论

研究结果强调了在规范的能力主义框架之外理解沟通和沟通支持的重要性,这为全面理解和支持沟通创造了机会。更具体地说,对于言语语言病理学家而言,本研究可以扩展他们对沟通的理解,并引发关于该专业潜在贡献的问题。

贡献

本研究为南非背景下的文献做出了贡献,证明了沟通的价值,并进一步阐述了多模态社区支持如何促进残疾人的健康和福祉。