The Fight for Pediatric Neurorehabilitation in Africa: Interview with Mar Piquer, Coordinator of PsicoNED

Below, you’ll witness a conversation with Mar Piquer Martínez, coordinator of the PsicoNED project in Zanzibar. This initiative, which we have previously discussed in other articles, provides psychological and cognitive support to children with hydrocephalus and spina bifida, as well as their families, in a highly vulnerable environment.

In this interview, you’ll gain deeper insight into different aspects, including the origins, purpose, and challenges of the project, the needs of Zanzibar’s community, how PsicoNED engages the local community, and how digital tools like NeuronUP have significantly improved the care provided to these individuals.  

1. For those unfamiliar with PsicoNED, could you tell us what the project entails and its purpose?

PsicoNED is a comprehensive psychological care project launched in 2023 by the NED Foundation. Its goal is to offer psychological support to children affiliated with Zanzibar’s House of Hope, as well as their families.

The House of Hope is a social-healthcare center managed by the Zanzibar Association for Patients with Hydrocephalus and Spina Bifida (HSBCO), co-funded by Child Help and the NED Foundation, of which I am part. This center provides temporary accommodation and sustenance for families in particularly vulnerable situations. It also facilitates transportation and coordination with Mnazi Mmoja Hospital and the NED Mnazi Mmoja Institute, home to the archipelago’s reference neurosurgery service. Additionally, it offers physical therapy and occupational therapy twice a week. 

PsicoNED emerged in this context, and since then, the project has two primary objectives:

1. To psychologically and cognitively evaluate children with hydrocephalus and spina bifida in Zanzibar, designing individualized interventions tailored to their specific needs.
2. To provide psychoeducation and emotional support to their families, communities, and immediate surroundings.

2. PsicoNED brings psychology and neurorehabilitation to Zanzibar. What community needs did you identify that highlighted the importance of this project in the region?

Until a few years ago, children with hydrocephalus and spina bifida hardly received surgical care in Zanzibar due to the lack of neurosurgeons and material resources. 

When the NED Foundation began to intervene in these cases, and children started recovering after surgeries, a new challenge emerged: creating specialized resources for their subsequent care and rehabilitation. Thus, the House of Hope was established, initially offering physical rehabilitation through physiotherapy and occupational therapy.

PsicoNED emerged in line with this development. Many of these children experience cognitive impairments affecting functions such as memory, attention, language, or planning. Additionally, some have associated diagnoses such as intellectual disability, autism, epilepsy, among others. In Zanzibar, there were no specialized psychological services, so none of these children had ever received a proper diagnosis, let alone specialized intervention.

Having a disability in Zanzibar involves a limitation in accessing education, as well as generating social stigma and rejection. Some children don’t even attend school for fear of rejection or due to lack of suitable resources. Others do attend but receive no adaptations and are entirely disoriented. 

For all these reasons, besides focusing on neuropsychology to foster their development, it was crucial to provide psychological support addressing other challenges faced by these children and their families.

3. To better understand PsicoNED’s impact, could you describe the team’s daily tasks and the types of activities carried out?

Currently, PsicoNED’s activities include:

1. Individual neuropsychology sessions.
2. Support groups for mothers and adolescents.
3. Meetings to plan, design, and supervise interventions.
4. Follow-up with children in school and family environments (home visits).
5. Supporting local volunteers.
6. Community awareness about hydrocephalus and spina bifida.

The routine at House of Hope varies each day, as many activities are organized weekly or monthly (such as support groups). We are currently implementing a structured weekly schedule as follows:

• Monday: scheduling, session planning, and material creation.
• Tuesday and Thursday: neuropsychology sessions.
• Wednesday: online meeting for session design, school, and family coordination.
• Friday: online case review meeting, and recreational workshops like crafts, reading, painting, or movie activities.

4. You have a volunteer program. What types of individuals can join PsicoNED, and how can they contribute?

We are open to diverse profiles, although we are currently especially looking for individuals from psychology, neuropsychology, disability, or education backgrounds. Occupational therapists, speech therapists, and teachers are also highly welcome.

There are many ways to collaborate: 

1. Directly supporting children and families during cooperative missions.
2. Providing training (in-person or online) to local professionals. 
3. Participating in case discussions or advising on interventions.

However, you don’t need to be a specialist or travel to Zanzibar to help. If someone is skilled in social media, they can help with content. If someone has experience organizing events, they can assist with charity initiatives. There are countless ways to get involved.

5. One of the pillars of the NED Foundation is its work model based on “Equip, Treat, and Educate.” Why do you think this methodology is key in low-income regions?

This cooperative work model is especially crucial in low-income regions to ensure sustainable long-term impact.

After many years of using this model as our guide, we’ve confirmed it works. When you ensure the necessary material resources, train local people, and utilize specialist knowledge and experience to directly handle specific cases, supervise, and guide local work, gradually they become less dependent on external support to achieve their objectives. They gain autonomy, knowledge, experience, and gradually take charge of their own projects, ultimately reaching the final goal: becoming self-sufficient.

This, of course, is a gradual process requiring years of joint work, funding, supervision, and continuous training to achieve.

In the case of PsicoNED, this is how we are applying it:

• Equip has meant providing tablets, intervention materials, access to online platforms such as NeuronUP, and creating an adapted space at the House of Hope. 
• Educate is something we experience daily, through training sessions organized for the local team, ongoing supervision, weekly meetings with specialists from Spain, and supporting local students who are also training. 
• Treat is carried out during our on-site missions as well as continuous follow-up from here, directly supporting the most complex or sensitive cases.

6. If you had to summarize this past year of PsicoNED in three words, what would they be, and why?

Consistency, reflection, expansion.

Consistency because we’ve worked tirelessly and built a highly committed team. Reflection, because every step we take requires careful evaluation and constant review. And expansion, because we’ve increased the services we offer, the number of families benefiting, and our collaboration with more local organizations.

7. You work with vulnerable children and families. What direct impact are you seeing on them? Is there a particular story that reflects this change?

The impact we’re seeing on the children and their families is real and very touching. 

We see it in the children as they gain confidence in performing tasks we practice in sessions. Some have greatly improved their attention skills, for example, which may seem minor but has an enormous impact on their daily lives.

For mothers, the change is also very evident. Many of them, initially closed off, fearful, or bearing the burden alone, now openly share their feelings, express themselves freely, support each other, and are forming a beautiful support network.

If I have to choose a story that reflects this change, I think of Amina. She is 19 years old and only attended school for a couple of years as a child due to family issues and a complete lack of support from the education system. Amina has hydrocephalus, an associated intellectual disability, and suspected ASD. A year ago, she would hide if someone spoke to her, refused to participate in activities, wouldn’t interact with technology, and her daily life was limited to performing some household chores.

Now, Amina participates in the youth group, expresses herself with much greater confidence, works with us on NeuronUP exercises, and is learning to write some words and recognize letters. She leaves sessions happy, laughs, participates actively, and has gained immense confidence. She has found a place where she feels respected, understood, and included. Seeing her progress is remarkable, and it’s precisely stories like hers that motivate us to continue our work.

8. Collaboration is key in projects like these. How does PsicoNED involve the local community in its own transformation?

Actually, PsicoNED doesn’t just involve the local community—it’s formed by them. Every action is designed and carried out jointly with local professionals. They perform the direct work, and when there are missions, we do them together.

From the beginning, we knew we wanted to form a mixed team with local professionals. They know the reality firsthand and, in the long term, are the ones who must lead the development of their own programs. We meet weekly, they carry out the interventions, and we supervise together. They are the visible face of the project. 

For example, Hamissa will supervise internships for two psychology students from Spain and mentor a local teacher. Decisions aren’t made from Spain: they’re proposed, discussed, and evaluated as a team. This is how the Foundation understands cooperation, and honestly, neither I nor anyone on the team can imagine working any other way.

9. Technology plays a key role in PsicoNED’s work. How have tools like NeuronUP helped patient care?

NeuronUP has significantly facilitated our work. It’s an intuitive tool with activities categorized by cognitive function and difficulty level. This is crucial, as local professionals don’t have specialized training in neuropsychology or cognitive stimulation. The platform also allows recording activities and outcomes, making coordination and follow-up among professionals easier. And best of all, the children genuinely enjoy it. For many, it’s their first experience using a tablet, adding a powerful motivational element.

10. Funding is a constant challenge for social projects. How is PsicoNED funded, and how can individuals or organizations support its growth?

PsicoNED is sustained by the NED Foundation, which itself relies on private donations, member contributions, and partnerships with public or private organizations. Additionally, the Foundation holds the Fundación Lealtad seal, certifying transparency and responsible use of funds. In Spain, it’s estimated that there are between 27,000 and 30,000 NGOs. Of these, only 293 have received the Accredited NGO Seal awarded by Fundación Lealtad, among which is the NED Foundation.

I’d like to stress something I find fundamental: any help, no matter how small it may seem, is important and necessary. Five euros can make a significant difference for many families. It could cover public transportation costs for their children to attend neuropsychology and physiotherapy sessions, crucial for their rehabilitation. Five euros can provide diapers for an entire week for some families.

By saying this, I want to emphasize that you don’t have to make a large donation to make a difference. Truly, every contribution counts. And the reality is, to cover many of these basic needs and continue progressing, we need funding. Without it, we can’t ensure the sustainability of these projects in the long run.

11. Looking toward the future, what are PsicoNED’s dreams and goals for 2025?

Our dreams for 2025 are:

1. Maintain or even expand the current team.
2. Increase neuropsychology sessions.
3. Begin providing individualized psychological support for mothers within a therapeutic framework.
4. Start developing services in Pemba in collaboration with local organizations.
5. Cover urgent basic needs for the most vulnerable families.

12. Finally, what motivates you every day to continue with PsicoNED?

Without a doubt, knowing that thanks to this project some children will be able to attend school, and others already enrolled will do so with the support and follow-up they need. Knowing that schools will be better prepared and more aware of hydrocephalus, spina bifida, and other causes of disability. That psychologists will be better trained in these areas. 

I’m also driven by knowing we are helping people understand hydrocephalus and spina bifida, hoping that gradually this translates into fewer family abandonments, especially by men who disengage after the birth of a child with a disability.

PsicoNED is just one part of a larger system: House of Hope, the NED Foundation, and local organizations. Everything makes more sense when you connect these parts. 

For instance, through home visits, we identify situations of extreme vulnerability and activate every possible resource: we arrange family transfers to the house, facilitate access to medical care and psychological support, and coordinate with other local resources and services.

What I mean by this is that PsicoNED goes far beyond providing neuropsychology sessions in an office. It’s a strong support network, working closely with other organizations, and thanks to these connections, it often prevents tragic situations and significantly improves the quality of life for many families. So, as you can see, I have plenty of reasons to keep moving forward every day.