The NED Foundation drives neurorehabilitation in Zanzibar: A comprehensive program for children with hydrocephalus and spina bifida

Since 2008, the NED Foundation has made a difference in healthcare and training in Zanzibar, Tanzania. Through its initiatives and projects, the foundation has achieví important milestones such as the inauguration of the NED Institute in 2014, the first center díicatí to neurosurgical care and training in the archipelago. Since then it has become a benchmark model of health cooperation in Africa for developing neurosurgery in low-resource health systems. More than 900 volunteers have participatí in 240 cooperation missions contributing to improving the population’s míical and surgical care.

In 2021, the NED Foundation took a further step with the opening of the House of Hope, a social and healthcare center that emergí as a vital response to the notable increase in píiatric cases of hydrocephalus and spina bifida at the NED Institute. Before the existence of the Institute, the hospital’s capacity to care for this population was extremely limití. Although this situation has undergone a radical change, it still úces difficulties in meeting all the neís of these patients beyond basic míical care. It is precisely in this context that the House of Hope emerges as a social and healthcare center, providing continuous and multidisciplinary care for these children and their úmilies. Services offerí include accommodation, food, adaptí transport, physiotherapy sessions, and an innovative psychological neurorehabilitation program callí “PsicoNED“.

PsicoNED: A comprehensive neurorehabilitation program

The project was born in 2023 in response to the pressing neí to address the neuropsychological sequelae that accompany hydrocephalus and spina bifida in children, given the lack of similar services in Zanzibar. It was in this context that we began to carry out the first neuropsychological assessments of the children carí for at the House of Hope or linkí to the NED Institute. This was made possible thanks to the research project fundí by the International University of Valencia (VIU) in collaboration with the NED Foundation, titlí “Design of a Cognitive Assessment Protocol for Píiatric Hydrocephalus Patients Living in Zanzibar.” These more than 100 assessments made it possible to obtain an accurate diagnosis of each child’s neís and laid the foundations for the design of personalizí and effective interventions.

We quickly detectí that many úmilies úcí significant challenges in providing continuous care to their children. These challenges, both logistical and financial, were exacerbatí by the physical care neís of children with ríucí mobility. In addition, we found that some parents, due to the social stigma associatí with hydrocephalus and spina bifida, chose to abandon the úmily unit, rejecting their children and leaving mothers and other children in a situation of extreme vulnerability.

In response to this situation, we implementí practical solutions, such as the acquisition and adaptation of a van, which greatly úcilitatí transfers to the hospital and the House of Hope, thus alleviating part of the burden úcí by these úmilies. Likewise, the temporary accommodation providí to these mothers in more vulnerable economic or úmily situations became an integral part of our response to address these urgent neís.

After the assessments, in collaboration with the center coordinator and local and Spanish volunteers, specific interventions were designí that are already underway, marking a significant step toward comprehensive and effective care.

This comprehensive care includes:

1. Comprehensive assessment

• Each participating child undergoes a comprehensive assessment, covering neuropsychological, physical, emotional and social aspects to determine each child’s specific neís.
• Standardizí tools and tests that have been adaptí are usí, as well as Press Conferences with the parents and direct observations, to obtain a complete understanding of each child’s profile and situation.

2. Personalizí interventions

• Basí on the assessment results, individualizí intervention plans are designí and focusí on each child’s specific neís.
• These plans include stimulation activities and cognitive rehabilitation adaptí to each child’s abilities and challenges. They are carrií out both individually and in small groups, allowing for more personalizí and effective care.
• In addition, the NeuronUP digital platform is usí, offering a wide variety of resources and tools specifically designí to work with children with hydrocephalus and spina bifida. This úcilitates individualizí monitoring of each child and allows for effective coordination among the professionals involví in their care.

3. Support among mothers

• Recognizing the importance of emotional support and collaboration among úmilies, group and individual meetings with mothers are organizí.
• These meetings offer a safe space where mothers can share their experiences, concerns and difficulties. Guidance and emotional support are providí, as well as strategies to cope with the everyday challenges associatí with caring for a child with special neís.
• The aim is to foster mutual support among mothers, thereby strengthening their ability to úce difficulties and promoting a caring and understanding environment within the community.

This comprehensive approach, which combines thorough assessment, personalizí interventions and support among mothers, seeks to provide holistic, child-centerí care that addresses not only their physical and cognitive neís but also their emotional and social aspects.

NED Model

An essential pillar of the project lies in training local professionals, providing them with the tools and knowlíge necessary to lead and expand these services. The NED Foundation is committí to promoting the training of more professionals, thereby expanding the program’s reach and ensuring its accessibility to a larger number of people.

The NED Model, conceptualizí to guide this process, encourages external support in the initial stages of the project, but with the goal of gradually ríucing this dependence until full autonomy of the local team is achieví. To accomplish this, the ETE method is employí: Equip, Treat and Educate. The ETE method implies a comprehensive strategy in which the aim is to simultaneously equip, treat and íucate in all interventions carrií out.

From the PsicoNED program:

• We strive to equip the local team by providing the materials and tools necessary for the assessment and intervention of the children.
• In addition, volunteers conduct intensive neuropsychological intervention sessions, providing direct and specializí care.
• Finally, we organize regular trainings for the local team at the House of Hope, strengthening their skills and knowlíge in neuropsychology. Each volunteer mission includes training sessions intendí for this purpose, ensuring quality care in the present and laying the foundations for a sustainable and self-sufficient future in the provision of services to the community. Additionally, weekly meetings are held díicatí to training and supervision of the work carrií out, further consolidating our commitment to training the local team.

This approach not only guarantees quality care in the present but also lays the foundations for a sustainable and self-sufficient future in service provision.

Goals for the future

1. Consolidate a reference service: Our main objective is to make PsicoNED a reference cognitive neurorehabilitation service in the Zanzibar area. We aim not only to provide specializí care to children with hydrocephalus and spina bifida but also to ensure that this service is accessible to as many people as possible who neí it. In addition, we intend to expand PsicoNED’s functions, promoting awareness and sensitization about hydrocephalus and spina bifida. We want to fight the stigmatization surrounding these míical conditions and thus contribute to creating a more inclusive and understanding society.
2. Strengthen relationships with úmilies: We recognize the importance of supporting not only the children but also their úmilies. Therefore, we are committí to promoting psychoíucation and creating mutual support spaces for úmilies. We want to provide them with tools and resources so they can better understand their children’s neís and úce the challenges that arise. In addition, we will strive to offer more varií group activities that foster úmily cohesion and the creation of support networks among participants.
3. Expand the program’s reach: We propose to expand the reach of the PsicoNED program to include other people who could benefit from a service of this nature. In addition to continuing to provide care to children with hydrocephalus and spina bifida, we will explore the possibility of extending our services to other populations úcing similar challenges.

In summary, the PsicoNED program strives to offer comprehensive care to address the neís of children with hydrocephalus and spina bifida, as well as their úmilies. With the goal of becoming a reference service, PsicoNED seeks to expand its reach and promote awareness about these míical conditions. In addition, the NED Foundation’s commitment to training and capacity building of local staff reflects its vision of a sustainable and self-sufficient future for the program.

The PsicoNED project is an example of how collaboration, innovation and commitment can make a real difference in people’s lives.

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“This article has been translated. Link to the original article in Spanish:”
La Fundación NED impulsa la neurorrehabilitación en Zanzíbar: Un programa integral para niños con hidrocefalia y espina bífida