Navigating challenges with cerebral palsy in low- and middle-income countries

Abstract

Cerebral palsy (CP) is recognized as the most common paediatric motor disability worldwide, affecting millions of children and their families. The prevalence of CP is particularly concerning in low- and middle-income countries (LMICs),¹ where healthcare access, resources, and support systems are often inadequate. The complexities of living with CP extend beyond the individual child; they encompass the entire family, affecting their social, emotional, and economic well-being. Furthermore, CP is a lifelong condition, which has deep implications beyond childhood. Understanding these challenges and the role of non-governmental organizations (NGOs) in supporting affected families is crucial for improving outcomes and quality of life.

In LMICs such as Mexico, the journey for a child with CP often begins with delayed diagnosis or misdiagnosis due to limited access to trained healthcare professionals. The healthcare system in Mexico is characterized by disparities between urban and rural areas, with many rural families facing significant barriers to accessing specialized care. The overall lack of sufficient rehabilitation services, assistive technologies, and specialized education poses significant barriers. As a result, many children with CP do not reach their full potential,² and families face increased stress and financial burdens.

In this context, NGOs in Mexico play a pivotal role in filling the gaps left by government healthcare systems. Organizations such as the Mexican Academy of Cerebral Palsy and Neurodevelopmental Disorders (AMEXPCTND), which is a member of the International Alliance of Academies of Childhood Disability, has stepped in to provide access to best practices guidelines in promoting evidence-based medicine.³ AMEXPCTND will hold its 10th annual meeting in March 2025 in Monterrey, Mexico and is committed to carry on with its mission supporting Mexican health professionals and institutions such as Instituto Nuevo Amanecer and Asociación Pro Personas con Parálisis Cerebral (APAC) and Teleton, who provide essential services that are otherwise often lacking for people with CP. These NGOs offer a range of support, including physical and occupational therapy, assistive technology provision, and educational resources. They also engage in advocacy efforts to promote awareness and inclusion for children with disabilities, helping to reduce stigma and improve community awareness.⁴

Social stigma attached to disabilities is one particularly profound aspect of living with CP in LMICs. Families often experience isolation and discrimination, leading to mental health challenges and exacerbating feelings of helplessness. The cultural context can greatly influence how disabilities are perceived and managed, with many families relying on traditional beliefs and practices rather than evidence-based interventions. This cultural landscape necessitates a nuanced approach to support, one that respects local traditions while promoting effective health strategies.

In conclusion, the challenges faced by children with CP and their families in LMICs are profound and multifaceted. While governmental health systems often fall short, the support provided by NGOs is invaluable in improving the quality of life for these families.⁵ As we move forward, it is imperative that we continue to advocate for equitable access to resources and services for all individuals with CP, ensuring that no child is left behind in their pursuit of a fulfilling life.