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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

Kate Armstrong, Alain Benedict Yap, Sioksoan Chan-Cua, Maria E. Craig, Catherine Cole, Vu Chi Dung, Joseph Hansen, Mohsina Ibrahim, Hassana Nadeem, Aman Pulungan, Jamal Raza, Agustini Utari, Paul Ward
Published: 25 September 2020
 by  MDPI
International Journal of Neonatal Screening , Volume 6; doi:10.3390/ijns6040076

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.
Keywords: Community / poverty / child / parents / human rights / congenital adrenal hyperplasia / Non-communicable diseases / chronic / inequity / community development

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