. 2020 Sep 25;6(4):76.

doi: 10.3390/ijns6040076.

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^{1

2}, Alain Benedict Yap³, Sioksoan Chan-Cua⁴, Maria E Craig^{5

6}, Catherine Cole¹, Vu Chi Dung⁷, Joseph Hansen¹, Mohsina Ibrahim⁸, Hassana Nadeem⁸, Aman Pulungan⁹, Jamal Raza⁸, Agustini Utari¹⁰, Paul Ward²

Affiliations

¹ CLAN (Caring & Living As Neighbours), Denistone 2114, Australia.
² College of Medicine & Public Health, Flinders University, Adelaide 5042, Australia.
³ CAHSAPI (Congenital Adrenal Hyperplasia Support Group of the Philippines), Manila 1000, Philippines.
⁴ Department of Pediatrics, Philippines General Hospital, Manila 1000, Philippines.
⁵ Institute of Endocrinology and Diabetes, The Children's Hospital at Westmead/Discipline of Child and Adolescent Health, University of Sydney, Camperdown 2006, Australia.
⁶ School of Women's and Children's Health, UNSW Medicine, Kensington 2052, Australia.
⁷ Department of Pediatric Endocrinology and Metabolism, National Children's Hospital, Hanoi 100000, Vietnam.
⁸ National Institute of Child Health (NICH), Karachi 75510, Pakistan.
⁹ Department of Child Health University of Indonesia, Dr. Cipto Mangunkusumo Hospital, Jakarta 10430, Indonesia.
¹⁰ Department of Pediatrics, Faculty of Medicine, Diponegoro University, Semarang 50275, Indonesia.

PMID: 33124614
PMCID: PMC7711668
DOI: 10.3390/ijns6040076

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 et al. Int J Neonatal Screen. 2020.

. 2020 Sep 25;6(4):76.

doi: 10.3390/ijns6040076.

Authors

Affiliations

¹ CLAN (Caring & Living As Neighbours), Denistone 2114, Australia.
² College of Medicine & Public Health, Flinders University, Adelaide 5042, Australia.
³ CAHSAPI (Congenital Adrenal Hyperplasia Support Group of the Philippines), Manila 1000, Philippines.
⁴ Department of Pediatrics, Philippines General Hospital, Manila 1000, Philippines.
⁵ Institute of Endocrinology and Diabetes, The Children's Hospital at Westmead/Discipline of Child and Adolescent Health, University of Sydney, Camperdown 2006, Australia.
⁶ School of Women's and Children's Health, UNSW Medicine, Kensington 2052, Australia.
⁷ Department of Pediatric Endocrinology and Metabolism, National Children's Hospital, Hanoi 100000, Vietnam.
⁸ National Institute of Child Health (NICH), Karachi 75510, Pakistan.
⁹ Department of Child Health University of Indonesia, Dr. Cipto Mangunkusumo Hospital, Jakarta 10430, Indonesia.
¹⁰ Department of Pediatrics, Faculty of Medicine, Diponegoro University, Semarang 50275, Indonesia.

PMID: 33124614
PMCID: PMC7711668
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: child; chronic; community; community development; congenital adrenal hyperplasia; human rights; inequity; non-communicable diseases; parents; poverty.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

**Figure 1**
The Caring and Living as Neighbours (CLAN) Strategic Framework for Action (as developed to facilitate change for children living with congenital adrenal hyperplasia (CAH) in Vietnam).

**Figure 2**
Knowledge to Action (KTA) framework [27] reproduced with permission.

**Figure 3**
Interplay between CLAN’s Strategic Framework for Action and the KTA framework.

See this image and copyright information in PMC

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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

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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

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