Empower the lives of children living with Spina bifida and hydrocephalus in Uganda

Since 1994, AVSI Foundation has provided holistic rehabilitation services to over 1,400 clients through the Gulu Regional Rehabilitation Centre    

Countries Uganda
Date 05.07.2024
Author By Rachael Akiteng Communications Officer for AVSI in Uganda

Disability represents a pressing public health concern in Uganda, affecting thousands of individuals and their communities. Despite the challenges, AVSI Foundation is committed to providing evidence-based rehabilitation services to empower persons with disabilities and fostering inclusivity in communities.

In addressing the barriers and creating change, individuals with disabilities who encounter obstructions across various sectors including healthcare, education, employment, and social inclusion in Northern Uganda are assisted by AVSI Foundation to bridge the gaps through community-based rehabilitation services and training initiatives with a focus on empowering persons with disabilities to become "Agents of Change" and envision a barrier-free environment for all.

Epidemiology and focus areas

Spina bifida and hydrocephalus are prevalent congenital anomalies in Uganda, presenting 1 in every 1,000 live births, particularly affecting people in the northern Uganda region. AVSI Foundation in partnership with the Belgian organization Child Help International and local institutions has been serving individuals with these conditions for now two decades. Through the Gulu Regional Rehabilitation Centre in Gulu Regional Referral Hospital, since 1994, AVSI Foundation has provided holistic rehabilitation services to over 1,400 clients, with a mission to improve their quality of life and promote complete inclusion in community development.

Strategies for inclusive development

A twin-track approach to Inclusive Development focusing on both societal inclusion and capacity building for persons with disabilities approach is employed for the successful realization of results. Collaborating with health service providers, and offering preventive health education, nutrition counseling, medical care and early neurosurgeries, continence management, rehabilitation, and assistive devices, individuals living with spina bifida and hydrocephalus are assisted to promote their active participation in society.

A nurse performs  therapy on one of the children born with Hydrocephalus.
A nurse performs therapy on one of the children born with Hydrocephalus.

Telemedicine, mobile health applications, and virtual programs: innovations for rehabilitation services

Innovation is at the forefront of AVSI's rehabilitation services, utilizing telemedicine, mobile health applications, and virtual programs to enhance accessibility and effectiveness. Despite the limited funding, inadequate infrastructure and geographical barriers, it has remained steadfast in its mission for persons with disabilities. Through partnerships, awareness programs, folic acid consumption and routine follow-ups, efforts to overcome these obstacles and create a more inclusive society are instituted; together with evidence-based rehabilitation service which stand as a cornerstone in improving the lives of persons with disabilities in Northern Uganda and avoiding the risk of spina bifida. Advocating for inclusive environments, early antenatal care, leveraging assistive technology, and offering innovative solutions creates continuous significant strides towards a more equitable and inclusive society for all –is AVSI Foundation’s pledge to improving the lives of persons living with spina bifida and hydrocephalus.

“Child Help International’s support through AVSI is critical in the lives of children born with spina bifida and hydrocephalus in Uganda’s northern region – Joyce Laker, AVSI Program manager states - Here cultural beliefs are resolute and children which such anomalies are referred by communities as “demons” and a curse to families, and sometimes are thrown into rivers or starved to death “to cleanse the family’’. Thanks to community dialogues with local and cultural leaders, the practice of drowning these children is significantly decreasing”.

In addition to the support provided to AVSI Foundation, Child-Help International supports the shunts used for treatment of hydrocephalus in Mulago National Referral Hospital, Mbarara Regional Referral Hospital and CURE Children’s Hospital where more than 2,000 life-saving surgeries are conducted annually.

“In partnership with organizations such as AVSI Foundation, Child-Help International branched out to focus on the special needs of persons with spina bifida and hydrocephalus, and their families in the global south; who are additionally faced with the challenges of poverty, limited access to care, and low advocacy to improve the quality of life of persons with spina bifida and hydrocephalus and to prevent further disabilities.” – Collins R Kabachelor, the Child-Help International Country Representative Uganda.

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