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“也许我会提供一些帮助……也许不是帮助眼睛,而是其他不同的帮助”:对马拉维社区环境中视力障碍儿童的护理与支持的分析

'Maybe I will give some help…. maybe not to help the eyes but different help': an analysis of care and support of children with visual impairment in community settings in Malawi.

作者信息

Gladstone M, McLinden M, Douglas G, Jolley E, Schmidt E, Chimoyo J, Magombo H, Lynch P

机构信息

Department of Women and Children's Health, Institute of Translational Medicine, University of Liverpool, Alder Hey NHS Children's Foundation Trust, Liverpool, UK.

Visual Impairment Centre for Teaching and Research (VICTAR), School of Education, University of Birmingham, Birmingham, UK.

出版信息

Child Care Health Dev. 2017 Jul;43(4):608-620. doi: 10.1111/cch.12462. Epub 2017 Apr 9.

Abstract

BACKGROUND

Visual impairment in children is common in low and middle-income settings. Whilst visual impairment (VI) can impact on the development of children, many reach full potential with appropriate early intervention programmes. Although there is increased emphasis on early child development globally, it is not yet clear how to provide specific programmes for children with VI in low and middle-income settings. This study aims to identify facilitators and barriers to the provision of a developmental stimulation programme for children with VI in rural and urban Malawi.

METHODS

We undertook 6 focus groups, 10 home observations and 20 in-depth interviews with carers of children with VI under 6 years in urban and rural Southern Malawi. We utilised topic guides relating to care, play, communication and feeding. Qualitative data were subject to thematic analysis that included placing themes within Bronfenbrenner's ecological framework. We established authenticity of themes through feedback from participants.

RESULTS

We identified themes within Bronfenbrenner's framework at five levels: (1) blindness acting as a barrier to stimulation and communication, health and complex needs all affecting the individual child; (2) understanding of VI, ability to be responsive at the microsystem level of the carer; (3) support from other carers at microsystem level within a mesosystem; (4) support from other professionals (knowledge of, identification and management of children with VI, responsibilities and gender roles, environmental safety and prejudice, stigma and child protection all at the level of the exosystem.

DISCUSSION

This study has revealed the requirements needed in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI in this and similar African settings. This includes supporting carers to understand their child's developmental needs, how to better communicate with, feed and stimulate their child; offering advice sensitive to carers' responsibilities and professional training to better support carers and challenge community stigma.

摘要

背景

在低收入和中等收入环境中,儿童视力障碍很常见。虽然视力障碍会影响儿童的发育,但许多儿童通过适当的早期干预计划能够充分发挥潜力。尽管全球对儿童早期发展的重视有所增加,但尚不清楚如何在低收入和中等收入环境中为视力障碍儿童提供具体计划。本研究旨在确定在马拉维农村和城市为视力障碍儿童提供发育刺激计划的促进因素和障碍。

方法

我们在马拉维南部城乡地区对6岁以下视力障碍儿童的照料者进行了6次焦点小组讨论、10次家庭观察和20次深入访谈。我们使用了与照料、玩耍、沟通和喂养相关的主题指南。定性数据进行了主题分析,包括将主题置于布伦芬布伦纳的生态框架内。我们通过参与者的反馈确定了主题的真实性。

结果

我们在布伦芬布伦纳框架的五个层面确定了主题:(1)失明成为刺激和沟通的障碍,健康和复杂需求都影响着个体儿童;(2)对照料者在微观系统层面理解视力障碍、做出反应的能力;(3)在中观系统内微观系统层面来自其他照料者的支持;(4)来自其他专业人员的支持(在外围系统层面涉及对视力障碍儿童的了解、识别和管理、责任和性别角色、环境安全以及偏见、耻辱感和儿童保护)。

讨论

本研究揭示了在这个以及类似的非洲环境中制定有意义且合适的计划以支持视力障碍儿童的营养、照料和早期刺激所需的条件。这包括支持照料者了解其孩子的发育需求、如何更好地与孩子沟通、喂养和刺激孩子;提供对照料者责任敏感的建议以及专业培训,以更好地支持照料者并消除社区的耻辱感。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/886a/5485081/2eb91abf8dee/CCH-43-608-g001.jpg

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