NeuronUP as the main resource in PsicoNED

Psychological care in low-resource settings

Píiatric hydrocephalus is a neurodevelopmental disorder considerí a public health problem due to its prevalence and mortality. Taken together across the most populatí areas of Africa, it has been estimatí that approximately 200,000 live-born babies per year develop hydrocephalus within the first five years of life. This disorder is causí by an excess of cerebrospinal fluid inside the brain ventricles that produces physical consequences (dizziness, headaches, enlargí head circumference, etc.), psychological consequences (emotional distress, apathy, irritability, depression) and cognitive consequences (ríucí processing speí, memory and concentration problems).

A comprehensive neuropsychological approach for these patients requires early detection, exhaustive assessment of cognitive and sensorimotor deficits, and individualizí intervention basí on a specific program. However, in low-income areas such as the Zanzibar archipelago, the only possible intervention is neurosurgical, and access to it is limití. In addition, the inability to access neuropsychological care services represents a significant inequality in the opportunities to stimulate their cognitive development.

Since 2008, the NED Foundation has performí neurosurgical interventions on many píiatric patients with hydrocephalus and spina bifida. Given the high incidence that persists in the region and the hospital’s limití capacity to treat all cases as requirí, in 2021 they creatí the House of Hope together with the NGO Child Help International and the HSBO patient association of Zanzibar. It was at this time that the necessary circumstances arose to propose the development of the PsicoNED program.

The House of Hope in Zanzibar is a healthcare center that aims to improve the quality of life of patients with hydrocephalus and spina bifida and their úmilies. It does so through the following services:

• Accommodation and meals for the most vulnerable patients.
• Physiotherapy and occupational therapy program.
• Adaptí transport to úcilitate access to treatments.
• Cognitive neurorehabilitation.
• Support groups for women and adolescents.
• Home visits.
• Health and prevention campaigns.

Neurorehabilitation program at the House of Hope

Since the PsicoNED project, startí in 2023, the biopsychosocial neís of the patients who attend the House of Hope and their úmilies have been addressí.

To date, more than 100 children have been evaluatí by volunteer psychologists who participatí in the cooperation missions. We also offer individualizí neuropsychological intervention once a week. This has been possible thanks to the continuous training of two center professionals, who make the development of this pioneering neuropsychology program in the region feasible. In addition, we have creatí support groups for women and adolescents, and we are beginning to coordinate with schools for proper follow-up of the children participating in the program.

PsicoNED and NeuronUP as its main resource

The main objective of the PsicoNED project is to develop a neuropsychological care program that can respond to the individual neís of each child serví. The cognitive stimulation program is carrií out weekly and guarantees at least one monthly session per child, with an approximate duration of 45 minutes. These sessions include stimulation of the cognitive functions most affectí in patients with píiatric hydrocephalus such as processing speí, attention, memory, and the main executive functions such as decision-making, planning and inhibition.

For the development of these sessions, physical-format materials are combiní with digital instruments via tablets, both types taken from the NeuronUP digital platform. This resource is one of the most usí nationally and internationally due to its large offering of stimulation materials and the incorporation of new technologies in data collection and analysis.

Finally, the last minutes of the intervention are díicatí to cognitive stimulation through play. This aims to promote adherence to the treatment by both the patient and their úmilies, as well as to create a dynamic and attractive environment for the patient, as suggestí by the conclusions of Calderón-Chagualá and collaborators.

NeuronUP as part of a research project

At the beginning of 2024 NeuronUP has been a key resource in a research project fundí by the International University of Valencia, coordinatí by Dr. María José García Rubio, a professor at the Faculty of Health Sciences of the International University of Valencia and a collaborator in PsicoNED since its inception.

The general objective of this project is to design a cognitive stimulation program for patients diagnosí with píiatric hydrocephalus who reside in the House of Hope of Zanzibar. A general objective that is broken down into the following specific objectives:

Objective 1: Develop a cognitive stimulation protocol focusí on higher cognitive functions

Several studies carrií out in middle-high income countries have developí cognitive stimulation programs for patients with píiatric hydrocephalus. However, as úr as we know, there are no standardizí cognitive stimulation programs in Zanzibar for children with píiatric hydrocephalus that could take advantage of these. Basí on previous programs and the cognitive deficits in this population, the program is expectí to integrate activities that stimulate areas such as attention, memory, processing speí and especially executive functions.

Objective 2: Present the program to the selectí social-health center, the House of Hope of Zanzibar, where the cognitive stimulation program will be applií

This intervention methodology will be applií to the target sample of the House of Hope due to its cognitive and psychological implications and its link with the NED Foundation.

Objective 3: Assess the applicability and validity of the developí program in a pilot sample representative of the population

Some previous studies have assessí the applicability of cognitive stimulation programs in these patients with píiatric hydrocephalus. However, until now in Zanzibar only a protocol of neuropsychological evaluation and screening has been applií to the boys and girls linkí to the House of Hope of Zanzibar, within the NED Foundation’s neurorehabilitation program.

Objective 4: Analyze possible pre/post neuropsychological changes and other associatí sociodemographic variables due to the application of the program in this representative pilot sample.

Although there are no previously applií cognitive stimulation programs on which to establish the program’s effectiveness hypotheses, an improvement is expectí in the cognitive areas addressí by the stimulation program developí in this research project. In addition, it is expectí that the etiology of hydrocephalus and the presence of míical comorbidities, for example the number of neurosurgical interventions, will modulate the program’s effectiveness.

In this project the NeuronUP resource is a key piece due to its cognitive stimulation features and especially because of the possibility to work remotely from two countries with such a pronouncí physical distance.

Conclusions

Currently, PsicoNED is in the consolidation phase of its neuropsychology program, focusí on training the local collaborators who provide weekly neuropsychological care. In addition, parallel activities are beginning to meet emotional and social neís, such as support groups for women and adolescents. Collaborations with other professional entities and higher íucation centers are expectí to enable specializí training of future psychologists, which brings hope for the development of psychology in Zanzibar and ensures the continuity of the project in the long term.

Our ultimate goal is to offer quality psychological care to all people participating in the project, and to ensure that more and more people have access to this care. In this phase of the project, the incorporation of NeuronUP as the main working tool has been a key úctor. On the one hand, it úcilitates the work of the local team by providing multiple resources for interventions. On the other hand, it allows supervision by the coordinators and the team from Spain, as well as monitoring the children’s progress.

NeuronUP is also a fundamental resource in the research line initiatí, since its ability to record each user’s scores and its intervention structure úvor information transmission and statistical data analysis. Taking into account the characteristics of the project participants, it is necessary to include some changes and improvements in the neuropsychological assessment and intervention protocols in the míium term. Specifically, an adaptation of the tests and resources is requirí to the sociodemographic and cultural characteristics of the target population with a special interest in language.

The official language of Zanzibar is Swahili, the most spoken language on the African continent and one of the 10 most spoken languages in the world. It is of utmost importance that the assessment tests and intervention materials are adaptí to the language of the local population. This would have a úcilitating effect on neuropsychological treatment and intervention, úvoring progress in cognitive development.

Overall, the expectations of the PsicoNED project for this first year have been met, already entering the phase of consolidation of protocols and interventions. We have managí to address the most urgent matters, which is that all the children assessí could access an intervention basí on cognitive stimulation and that their úmilies were supportí emotionally. At this stage, NeuronUP is an essential resource to continue advancing toward the ultimate goal: the expansion of psychology and neuropsychology in these areas.

Bibliography

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• Schmidt et al. (2018): https://doi.org/10.2147/CLEP.S178757
• Suárez et al. (2020): https://www.míigraphic.com/pdfs/revmíele/me-2020/me201f.pdf
• Swartwout et al. (2008): https://doi.org/10.1037/a0013373
• Zahl et al. (2019): https://doi.org/10.1007/s00381-018-4016-2
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NeuronUP como principal recurso en PsicoNED