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.
Highlights
Congenital adrenal hyperplasia (CAH) is a spectrum of autosomal recessive disorders of adrenal steroidogenesis, caused by an enzyme deficiency in the adrenal cortex (21-hydroxylase in approximately 95% of cases [1])
Prioritising the voices of people living with chronic conditions reflects Caring and Living as Neighbours (CLAN)’s commitment to valuing felt needs and patient and family-centred approaches [23], and prioritisation of participatory action research (PAR) when implementing CLAN’s framework [24], and aligns with emerging calls to privilege the voices of people living with chronic conditions within the broader non-communicable disease (NCD) discourse [25]
Articles and letters in the 2004 CAHSGA (CAH Support Group of Australia) and CARES (CAH Advocacy, Research, Education and Support) Foundation newsletters [30,31] powerfully described some of the inequities experienced by children and families living with congenital adrenal hyperplasia (CAH) in Vietnam
Summary
Congenital adrenal hyperplasia (CAH) is a spectrum of autosomal recessive disorders of adrenal steroidogenesis, caused by an enzyme deficiency in the adrenal cortex (21-hydroxylase in approximately 95% of cases [1]). Whilst CAH is unquestionably a complex health condition to manage, internationally recognized clinical guidelines provide evidence-based recommendations regarding the appropriate management of CAH to support affected individuals so they might enjoy the highest quality of life possible [1,2,3] Despite this depth of knowledge—and the many educational materials, tools and other resources available to facilitate positive health outcomes—for some people living in low- and middle-income countries around the world in 2020 it could be argued that not much has changed since DeCrecchio’s first description of CAH and the life and tragic premature death of Giuseppe Marzo back in 1865 [4]. Inequities are not always exclusive to low- and middle-income countries: despite the clear advantages of NBS for CAH, some high-income countries (such as Australia) have still not implemented universal nationwide NBS programs, and the resultant preventable morbidity and mortality are increasingly difficult to justify [7,8,9,10]
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