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Open AccessArticle

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

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CLAN (Caring & Living As Neighbours), Denistone 2114, Australia
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College of Medicine & Public Health, Flinders University, Adelaide 5042, Australia
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CAHSAPI (Congenital Adrenal Hyperplasia Support Group of the Philippines), Manila 1000, Philippines
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Department of Pediatrics, Philippines General Hospital, Manila 1000, Philippines
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Institute of Endocrinology and Diabetes, The Children’s Hospital at Westmead/Discipline of Child and Adolescent Health, University of Sydney, Camperdown 2006, Australia
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School of Women’s and Children’s Health, UNSW Medicine, Kensington 2052, Australia
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Department of Pediatric Endocrinology and Metabolism, National Children’s Hospital, Hanoi 100000, Vietnam
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National Institute of Child Health (NICH), Karachi 75510, Pakistan
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Department of Child Health University of Indonesia, Dr. Cipto Mangunkusumo Hospital, Jakarta 10430, Indonesia
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Department of Pediatrics, Faculty of Medicine, Diponegoro University, Semarang 50275, Indonesia
*
Author to whom correspondence should be addressed.
Int. J. Neonatal Screen. 2020, 6(4), 76; https://doi.org/10.3390/ijns6040076
Received: 1 September 2020 / Revised: 19 September 2020 / Accepted: 21 September 2020 / Published: 25 September 2020
(This article belongs to the Special Issue CAH Screening—Challenges and Opportunities)
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. View Full-Text
Keywords: congenital adrenal hyperplasia; inequity; community development; human rights; child; parents; community; chronic; non-communicable diseases; poverty congenital adrenal hyperplasia; inequity; community development; human rights; child; parents; community; chronic; non-communicable diseases; poverty
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Armstrong, K.; Benedict Yap, A.; Chan-Cua, S.; Craig, M.E.; Cole, C.; Chi Dung, V.; Hansen, J.; Ibrahim, M.; Nadeem, H.; Pulungan, A.; Raza, J.; Utari, A.; Ward, P. 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, 6, 76.

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