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我们都要发挥作用:纠正资源匮乏地区患有先天性肾上腺皮质增生症及其他儿童慢性健康状况的儿童所面临的不平等现象。

We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings.

作者信息

Armstrong Kate, Benedict Yap Alain, Chan-Cua Sioksoan, Craig Maria E, Cole Catherine, Chi Dung Vu, Hansen Joseph, Ibrahim Mohsina, Nadeem Hassana, Pulungan Aman, Raza Jamal, Utari Agustini, Ward Paul

机构信息

CLAN (Caring & Living As Neighbours), Denistone 2114, Australia.

College of Medicine & Public Health, Flinders University, Adelaide 5042, Australia.

出版信息

Int J Neonatal Screen. 2020 Sep 25;6(4):76. doi: 10.3390/ijns6040076.


DOI:10.3390/ijns6040076
PMID:33124614
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7711668/
Abstract

CLAN (Caring and Living as Neighbours) is an Australian-based non-governmental organisation (NGO) committed to equity for children living with chronic health conditions in resource-poor settings. Since 2004, CLAN has collaborated with a broad range of partners across the Asia Pacific region to improve quality of life for children living with congenital adrenal hyperplasia (CAH). This exploratory case study uses the Knowledge to Action (KTA) framework to analyse CLAN's activities for children living with CAH in the Asia Pacific. The seven stages of the KTA action cycle inform a systematic examination of comprehensive, collaborative, sustained actions to address a complex health challenge. The KTA framework demonstrates the "how" of CLAN's approach to knowledge creation and exchange, and the centrality of community development to multisectoral collaborative action across a range of conditions, cultures and countries to redressing child health inequities. This includes a commitment to: affordable access to essential medicines and equipment; education, research and advocacy; optimisation of medical management; encouragement of family support groups; efforts to reduce financial burdens; and ethical, transparent program management as critical components of success. Improvements in quality of life and health outcomes are achievable for children living with CAH and other chronic health conditions in resource-poor settings. CLAN's strategic framework for action offers a model for those committed to #LeaveNoChildBehind.

摘要

关爱邻里共同生活组织(CLAN)是一家总部位于澳大利亚的非政府组织(NGO),致力于为生活在资源匮乏环境中患有慢性健康问题的儿童争取公平权益。自2004年以来,CLAN与亚太地区的广泛合作伙伴合作,以改善患有先天性肾上腺皮质增生症(CAH)儿童的生活质量。本探索性案例研究使用知识转化为行动(KTA)框架来分析CLAN在亚太地区为患有CAH儿童开展的活动。KTA行动循环的七个阶段为系统审视应对复杂健康挑战的全面、协作、持续行动提供了依据。KTA框架展示了CLAN知识创造和交流方法的“方式”,以及社区发展在跨一系列条件、文化和国家的多部门协作行动以纠正儿童健康不平等方面的核心地位。这包括致力于:以可承受的价格获取基本药品和设备;教育、研究和宣传;优化医疗管理;鼓励家庭支持团体;努力减轻经济负担;以及道德、透明的项目管理,这些都是成功的关键要素。对于生活在资源匮乏环境中患有CAH和其他慢性健康问题的儿童来说,生活质量和健康结果的改善是可以实现的。CLAN的战略行动框架为那些致力于“不让任何一个儿童掉队”的人提供了一个模式。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/54e636634df4/IJNS-06-00076-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/e13e8206b380/IJNS-06-00076-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/36625ca85d71/IJNS-06-00076-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/54e636634df4/IJNS-06-00076-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/e13e8206b380/IJNS-06-00076-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/36625ca85d71/IJNS-06-00076-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8fe2/7711668/54e636634df4/IJNS-06-00076-g003.jpg

相似文献

[1]
We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings.

Int J Neonatal Screen. 2020-9-25

[2]
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[3]
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[4]
[The analysis of psychological and social problems, the physical development in young people with congenital adrenal hyperplasia - owner experience].

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[5]
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[6]
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[8]
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[9]
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[10]
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[2]
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[3]
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[4]
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Clin Pediatr Endocrinol. 2025-1

[5]
Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study.

Belitung Nurs J. 2023-2-12

[6]
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Front Endocrinol (Lausanne). 2022

[7]
Models of lifelong care for children and adolescents with chronic conditions in low-income and middle-income countries: a scoping review.

BMJ Glob Health. 2022-7

[8]
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Int J Environ Res Public Health. 2021-11-3

[9]
Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village….

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[10]
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本文引用的文献

[1]
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Research on quality of life in female patients with congenital adrenal hyperplasia and issues in developing nations.

J Pediatr Adolesc Gynecol. 2013-12

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