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关怀视角:南非城郊地区残疾儿童的母亲们

Care perspectives: Mothers of children with disabilities in a peri-urban setting in South Africa.

作者信息

Torres Marcia A, Ohajunwa Chioma O

机构信息

Division of Disability and Rehabilitation Studies, Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.

Africa Centre for Inclusive Health Management, Faculty of Economic and Management Sciences, Stellenbosch University, Cape Town, South Africa.

出版信息

Afr J Disabil. 2025 Mar 21;14:1463. doi: 10.4102/ajod.v14i0.1463. eCollection 2025.

Abstract

BACKGROUND

Within lower- to middle-income countries, mothers of children with disabilities often bear the burden of caregiving for their children, and experience various familial, systemic, structural and sociocultural challenges to the fulfilment of this role.

OBJECTIVES

This article discusses the barriers and enablers to caregiving experienced by mothers of children with disabilities living in a peri-urban setting in South Africa.

METHOD

A qualitative study using in-depth interviews was implemented with six mothers of children with disabilities, recruited through total population sampling. Interviews were conducted in three South African languages - English, isiXhosa and Afrikaans. The interviews were translated, transcribed and analysed thematically.

RESULTS

Key challenges experienced in care giving include poverty, a sense of abandonment and communal stigma. Despite the challenges, the mothers identify spirituality and empathetic healthcare workers as a support for caregiving.

CONCLUSION

Mothers of children with disabilities experience isolation and stigmatisation, are often alienated from accessing community structures on an equal basis with others, creating a barrier to caregiving for these mothers. An inclusive and targeted approach is needed to raise awareness and create peer support groups for mothers of children with disabilities.

CONTRIBUTION

A sense of isolation, financial challenges and familial abandonment are significant challenges for mothers of children with disabilities, but they find strength in spirituality. Spiritual belief systems and collaboration with community and spiritual leaders are advocated for ongoing communal support for mothers of children with disabilities. An inclusive, authentic intersectoral collaboration is needed to enhance caregiving capacity for mothers of children with disabilities.

摘要

背景

在低收入和中等收入国家,残疾儿童的母亲往往承担着照顾子女的重担,并在履行这一角色时面临各种家庭、系统、结构和社会文化挑战。

目的

本文探讨了生活在南非城郊地区的残疾儿童母亲在照顾子女过程中所面临的障碍和促进因素。

方法

采用深度访谈的定性研究方法,通过总体抽样招募了六位残疾儿童的母亲。访谈用三种南非语言进行——英语、科萨语和南非荷兰语。访谈内容被翻译、转录并进行了主题分析。

结果

照顾子女过程中遇到的主要挑战包括贫困、被遗弃感和社区耻辱感。尽管面临这些挑战,母亲们认为精神寄托和富有同情心的医护人员是照顾子女的支持力量。

结论

残疾儿童的母亲感到孤立和受辱,往往被排斥在与他人平等地接触社区结构之外,这给这些母亲的照顾工作造成了障碍。需要采取一种包容性和有针对性的方法来提高认识,并为残疾儿童的母亲建立同伴支持小组。

贡献

孤独感、经济挑战和家庭遗弃对残疾儿童的母亲来说是重大挑战,但她们从精神寄托中找到了力量。倡导精神信仰体系以及与社区和宗教领袖的合作,以便为残疾儿童的母亲持续提供社区支持。需要开展包容性、真诚的跨部门合作,以提高残疾儿童母亲的照顾能力。

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Mothers' experience of having a child with cerebral palsy. A systematic review.母亲经历脑瘫患儿的体验。系统综述。
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