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

Armstrong, Kate; Yap, Alain Benedict; Chan-Cua, Sioksoan; Craig, Maria E.; Cole, Catherine M.; Dũng, Vũ Chí; Hansen, Joseph C.; Ibrahim, Mohsina Noor; Nadeem, Hassana; Pulungan, Aman B; Raza, Jamal; Utari, Agustini; Ward, Paul

doi:10.3390/ijns6040076

Cited by 10 publications

(12 citation statements)

References 37 publications

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“…One factor relates to the physical and human resources available in healthcare services, such as the physical existence of both the services at healthcare facilities and appropriately qualified healthcare staff to provide the services. Additional service-related factors relate to the affordability of services for people in healthcare [ 31 , 32 ] and appropriateness of the services in terms of the services meeting the specific needs of the community they serve [ 31 ]. On an individual level, potential service users need to actually know about the services, be able to physically (appropriate locations and opening times) and financially access them, and also perceive a need for the services.…”

Section: Methodsmentioning

confidence: 99%

Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia

Abanit¹,

Fauk

Mwanri

et al. 2021

IJERPH

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Accessibility to healthcare and rehabilitation services for children with a disability (CWD) is essential to improving their health and wellbeing. However, access to the services, especially in many settings in developing countries with scarcity of resources, is still limited. As part of a qualitative study exploring impacts of caring for CWD on mothers or female caregivers and their coping strategies, this paper describes barriers for access to healthcare and rehabilitation services for CWD in Belu district, Indonesia. One-on-one, in-depth interviews were conducted with 22 mothers or female caregivers of CWD. Participants were recruited using a combination of purposive and snowball sampling techniques. These were supplemented with interviews with two staff of disability rehabilitation centers in Belu to understand any additional barriers. Data analysis was guided by a qualitative data analysis framework. Our analysis identified that lack of affordability of healthcare services (high costs and low financial capacity of mothers) was the key barrier for access to healthcare and rehabilitation services CWD. Religious or faith-based factors, such as being a non-Catholic (Belu is predominantly Catholic), converting from Catholic to other religions, and the belief in children’s disability condition as “God’s will”, were also influencing factors for lack of access to the services. Shortage of staff, distrust in the therapy skills of staff at rehabilitation centers, and unavailability of appropriately trained healthcare professionals were structural or system-related barriers. The findings indicate the need for government-owned and run disability rehabilitation centers (not faith-based), the provision of fully subsidised health insurance to provide free services, and the provision of qualified therapists and healthcare professionals (to build trust) in Belu and other similar settings in Indonesia.

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Section: Methodsmentioning

confidence: 99%

Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia

Abanit¹,

Fauk

Mwanri

et al. 2021

IJERPH

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“… 47 48 Chronic disease management may require the support of a broad and diverse team of providers including physicians, nurses, behavioural specialists, dieticians, psychologists and social workers. 49 50 Further, a case manager or care coordinator role on a patient’s care team can serve to adequately incorporate and synchronise long-term clinical and social services.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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Globally, non-communicable diseases (NCDs) or chronic conditions account for one-third of disability-adjusted life-years among children and adolescents under the age of 20. Health systems must adapt to respond to the growing burden of NCDs among children and adolescents who are more likely to be marginalised from healthcare access and are at higher risk for poor outcomes. We undertook a review of recent literature on existing models of chronic lifelong care for children and adolescents in low-income and middle-income countries with a variety of NCDs and chronic conditions to summarise common care components, service delivery approaches, resources invested and health outcomes.

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“…Caring and Living as Neighbours (CLAN), an Australian non-profit organisation, champions a model based on the participation of patients and their families. 34 The success of CLAN’s concept lies on the development of communities of patients that collaborate nationally and globally to increase awareness and connectivity.…”

Section: Short-term and Long-term Opportunities To Improve Access To Oral Fludrocortisone And Hydrocortisonementioning

confidence: 99%

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

et al. 2021

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Congenital adrenal hyperplasia (CAH), if untreated, carries high morbidity and mortality. A higher incidence of CAH is expected in countries where consanguinity is common, such as in the countries of the WHO Eastern Mediterranean Region (EMRO). CAH is managed through lifelong treatment with fludrocortisone and hydrocortisone. In this analysis, performed in the 22 EMRO countries and territories plus Algeria, we review which countries offer a neonatal screening programme for CAH and describe the barriers and opportunities to access oral fludrocortisone and oral and injectable hydrocortisone. Neonatal CAH screening was only available nationally in Qatar, Kuwait and partially in Lebanon and Saudi Arabia. We reviewed the national lists of essential medicines (NEMLs) and found that 13/23 (57%) countries included fludrocortisone and 18/23 (78%) included oral hydrocortisone. Fludrocortisone was not included by any of the low-income countries and oral hydrocortisone was only included by one low-income country. We then contacted paediatric endocrinologists in each country to assess perceived availability of these medicines. Overall, there was a relatively good consistency between inclusion of fludrocortisone and hydrocortisone in the NEML and their actual availability in a country. We propose several mechanisms to improve access, including prequalification by the WHO, a common registration process for groups of countries, pooled procurement, working with local pharmaceutical companies, special access status for medicines not yet registered in a country and compounding. We suggest that access to medicines requires a collaboration between health professionals, families of patients, health authorities, pharmaceutical companies and the WHO.

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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

Cited by 10 publications

References 37 publications

Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia

Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia

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

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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