To improve and decentralize neuropediatric healthcare in Nicaragua by implementing an education program.
MethodThis study was carried out as an international cooperation proyecto between September 2018 and June 2019. It was a pre-experimental and before-after design (on a single group) of the implementation of an education program. A total of 19 pediatrics and 6 nurses participated in a training program, and neuropediatric healthcare services were decentralized from the National Children’s Hospital in Managua (La Mascota) to 19 regional and departmental hospitals in Nicaragua.
ResultsFor the implementation of this education program, nine Indicadors were measured during the training process and at the end of the proyecto and different results were obtained. The neuropediatric care, that was totally centered in a single hospital, has suffered drastic changes, increasing the number of electroencephalographs and follow up of patients in the regional hospitals, while reducing external consultations and waiting time for consultations in the central hospital. Likewise, a neuropediatric network was established, training was provided, and brochures were developed, resulting in an improving satisfaction of families with the care provided for their children.
ConclusionsOur results revealed the real-life effectiveness of this education program in improving neuropediatric care in Nicaragua, supporting nonspecialized pediatricians and nurses for acting as decentralizing agents. The proposal reinforces universal access to basic health by focusing on different social determinants and may serve as a model to other low-income countries.
Mejorar la atención neuropediátrica y la descentralización de la atención médica en Nicaragua mediante la implementación de un programa educativo.
MétodoEste estudio parte de un proyecto de cooperación internacional llevado a cabo entre septiembre de 2018 y junio de 2019. Tiene un diseño preexperimental, e implementación pre-post de un programa educativo sobre un grupo único. Un total de 19 pediatras y 6 enfermeras participaron en un programa de capacitación y se descentralizaron los servicios de atención de salud neuropediátrica del Hospital Nacional de Niños de Managua (La Mascota) a 19 hospitales regionales y departamentales de Nicaragua.
ResultadosPara la implementación de este programa educativo se midieron nueve indicadores durante el proceso de formación y al final del proyecto, y se obtuvieron diferentes resultados. Ha aumentado el número de electroencefalógrafos y el seguimiento de los pacientes en los hospitales regionales, al tiempo que se reducen las consultas externas y el tiempo de espera para las consultas en el hospital central. Asimismo, se estableció una red de neuropediatría, se impartió capacitación y se elaboraron folletos, lo que permitió mejorar la satisfacción de las familias con la atención brindada a sus hijos.
ConclusionesNuestros resultados revelaron la efectividad de este programa educativo para mejorar la atención neuropediátrica en Nicaragua, apoyando a los pediatras y enfermeras no especializados para que actúen como agentes descentralizadores. La propuesta refuerza el acceso universal a la salud básica centrándose en diferentes determinantes sociales y puede servir como modelo para otros países de bajos ingresos
Neurological disorders are the second leading cause of death in the world, with epilepsy being one of the most common causes of the disease burden in low-income countries.
The decentralisation of medical care and the promotion of relevant training for health care professionals in low-income countries is urgently needed.
What does it contribute?These interventions could boost economic savings for families, enabling them to remain in their region and continue their treatment as appropriate.
Neurological disorders are the second leading cause of death in the world, and the leading cause of disability adjusted life years” (DALYs) lost, with epilepsy being one of the most common causes of disease burden in people living in low-income countries.1 In 2016, of the 52.9 million children under five years of age who had developmental disabilities globally, 95% corresponded to these countries.2 In Latin-American countries, the scenario is even worse, since there is a projection for 2030 of a heavy burden of disability for pathologies such as epilepsy, associated with a high infant mortality rate.3
Despite this negative trend, only 28% of low-income countries have a specific policy for these disorders, which means that systems do not respond adequately to the burden of disease due to neurological disorders.4 Currently, the treatment gap for these health problems (i.e. lack of access to medicines, effective interventions, and specialised outpatient care) amounts to about 75% in low-income countries, as in the case of Nicaragua.1 In addition, the number of health care professionals specialised in neurology and neuropaediatrics is insufficient in these countries,5 as is the average number of neurology specialists (adult neurologists, neurosurgeons and paediatric neurologists) which is estimated at 0.1 professionals per 100,000 inhabitants.6
To contextualise neuropaediatric care in Nicaragua, it is important to note that Nicaragua had a population of 6,527,691 people in June 2019, with 2,013,125 children aged 0–14 years.7 According to the 2014–2016 Living Standard Measurement Survey, general poverty affected 24.9% of the population, with extreme poverty concentrated in rural areas (50%).
Nicaragua's National Health System is based on a public-private subsystem. The Ministry of Health Information System (MINSA) is organised around 19 local systems of comprehensive health care (SILAIS in its Spanish acronym) and with different levels. The first level of care is made up of primary care, and the second and third levels refer to hospital care with basic and higher level specialties, respectively. The network of MINSA’s public health units at the national level consists of 12 national hospitals, seven regional hospitals, 12 departmental hospitals, 143 health centres and 1333 primary care centres.7
As for neurological diseases, epilepsy is one of the main reasons for seeking neuropaediatric outpatient visits, along with central nervous system conditions and neural tube defects. According to the calculations of the National Autonomous University of Nicaragua,8 the profile of children diagnosed with epilepsy registered in the outpatient clinic at the Manuel Jesús de Rivera Children's Hospital (known as “La Mascota”), between January and December 2013–2014, was as follows: 5% were under one to five years of age, followed by 34.2% from six to 10 years old and 24.4% from 10 to 14 years old. In addition, the figures for 2017 and 2018, corresponding to Nicaragua’s MINSA national health map, position epilepsy as the fourth chronic disease in the country, with 32,151 and 30,386 cases respectively and a rate per 10,000 inhabitants of 50.8 and 47, respectively. The high incidence of spina bifida and other congenital malformations in Nicaragua is evidenced by the implementation of various international development cooperation projects carried out by non-governmental organisations (NGOs): International Community Development (DECCO International): a Spanish NGO that fights poverty and discrimination through international development cooperation in Nicaragua and Senegal. It also provides support, awareness-raising, training and socio-occupational guidance on migratory phenomena), and the Nicaraguan Association for Community Integration (ASNIC), which works in defence of inclusion, human rights and health care coverage for the Nicaraguan population with disabilities, in close collaboration with the MINSA health care authorities. Together with MINSA, between 2009–2018, these organisations have provided equipment, training and surgical and rehabilitation interventions for children with these diseases.
The Manuel de Jesús de Rivera Children's Hospital in Managua, “La Mascota”, serves the population from 0 to 15 years of age with neurological problems throughout the entire country. This hospital concentrates 100% of the country's human resources in this field (that is, two neuropaediatricians) to attend to these children and their families, to the detriment of other regions and departments. According to the internal statistics for the Children's Hospital, a total of 9748 neuropaediatric outpatient visits were scheduled, attending to 7780 patients, overwhelming existing outpatient facilities, while another 1968 outpatient appointments failed to take place, in the end. In this same report, it was emphasise d that the economic problems of the families and the difficulty of travelling to the capital were the main causes of these failures to attend appointments and, at the same time. the reason for the hospital abandoning the clinical follow-up on these children.
Why is an education programme necessary to improve and decentralise neuropaediatric care?In this context, linking up development cooperation projects to adhere to the United Nations Development Agency's 2030 Goal No, 3 on health and well-being constitutes a viable source of support for the implementation of initiatives carried out between the public sector and civil society. Among these initiatives, an interdisciplinary approach prevails that addresses the discrimination and stigmatisation associated with these neurological problems, which, in turn, causes social exclusion, economic and health care inequality, delay in seeking help and health care, and, therefore, disability and mortality.
For this reason, international institutions are urging international cooperation projects to develop studies on education programmes based on real-life interventions that will improve the well-being of those with neurological disorders, promoting quality care, the provision of social protection benefits, and financial protection against the direct expenses that families are forced to pay.4 The development of training programmes and the creation of online educational materials are examples of the initiatives currently implemented throughout the world.9 Collaborative efforts between medical societies and local groups will be vital for improving access to neuropaediatric care in the future in marginalised areas.10
The objective of this project was to promote a health care response as a result of technical support to paediatricians and nurses in the Nicaraguan public health system. This proposal reinforces universal access to basic health care, focussing on different social determinants such as poverty, the role of women as primary caregivers for the affected child, distance to the location of health care, patient rights and child health care, providing diagnosis, specialised care, treatment and neuropaediatric follow-up on children with disabilities. In this direction, the rights holders i.e. the children and their family caregivers, constitute a group protected by the Universal Declaration of Human Rights (1948), and preferred by Spanish and Andalusian development cooperation over and above the economy of health care and childhood.11
Through this proposal, and with the training of paediatric personnel, it is expected that the Nicaraguan health care system will be able to demonstrate its ability to overcome the barriers linked to its incipient experience in the field of neuropaediatrics and, in this case, epilepsy. The projects run in this area in recent years, and funded by AACID through a funding application in 2008, 2010, 2013 and 2017, are examples of its positive development in the treatment of congenital malformations from diagnosis, treatment and follow-up of the patient. More specifically, progress has been made in the treatment areas related to neural tube defects, with support from the Nicaraguan Registry of Congenital Malformations and neuropaediatric care.
Regardless of this progress, and in relation to other Latin-American countries such as Argentina, Mexico and Costa Rica, the distance to be covered is still significant. In fact, data from the Pan American Health Organisation, based on information from birth defects surveillance systems in the Americas, present a report on the present and future of care in this area, with data from 11 countries, among which Nicaragua does not appear.12 Even so, the idea from the outset has been better care for the patient, covering the shortage of personnel through a process of decentralisation that offers sufficient tools to ordinary professionals, to provide a medical response but also a social one, linked to the right of affected families to free access to decent health care.
In any case, it is relevant at this point to be able to assess the impact of the intervention based on three criteria that, in turn, are a measure of the transformation which the country’s health care system and the legal population have benefitted from. To undertake this, it is necessary to provide answers to questions related to the validity of a health care model that has been set up around three elements. The first of these: a decentralised model, specifically orientated towards people and their right to universal access to this. The second: the impact of actions related to the major challenges of our time through the Sustainable Development Goals on the 2030 Agenda. And, finally: the relevance of new technologies as a support tool to reduce costs and the distance from treatment for patients.
In this context, neuropaediatric care in Nicaragua is over-stretched and based on a scarce number of specialised professionals. Decentralising care and promoting education in this area for other health professionals, in order to improve the care provided, is an urgent need.
Therefore, the objective of this study was to improve and decentralise neuropaediatric care in Nicaragua by implementing an education programme. These findings could serve as important tools for health care managers, and could be replicated in other low-resource countries.
MethodDesignThis study was carried out as part of an international development cooperation project over 10 months (between September 2018 and June 2019). Its design was pre-post pre-experimental, with the implementation of an education programme for one single group, to improve neuropaediatric care and decentralise health care in Nicaragua. Our hypothesis was that the intervention would improve the quality of care for neuropaediatric patients and their families, promoting better training of health professionals and decentralising health care services from the National Children's Hospital “La Mascota” in Managua out to 19 regional and departmental hospitals in the country. This study used the Standards for Quality Improvement Reporting Excellence (SQUIRE) tool, aimed at reports that describe systematic-level work to improve the quality and value of health care (see Additional Material, SQUIRE, Equator Guide).
Context and sampleNicaragua is divided into 15 departments that make up the Pacific and North Central regions, and two autonomous regions on the north and south Caribbean coast. To guarantee universal health care coverage, the 2012 General Health Law that regulates Nicaragua's Unified National Health System lays down a non-contributory regime under MINSA, one of its fundamental pillars.13 Through its strategy under the Community and Family Health Model (MOSAFC), this institution covers populations without the ability to pay, focussing its attention mainly on the population in rural areas, who suffer more frequently from misinformation and poor accessibility to their health centres.
The health professionals included in this study were selected by the General Directorate of Health Services within the central MINSA, in coordination with the person in charge of the Department of Genetics and the main hospital “La Mascota”, following these criteria: with the idea of covering neuropaediatric care at the national level, regional and departmental hospitals belonging to the 2nd and 3rd levels of health care within the Ministry's structure were considered as strategic. Therefore, the project included an intentional and non-random sample (mainly women: 65.38%) from 19 regional and departmental hospitals (Chinandega, León, Ocotal, Somoto, Managua, Masaya, Granada, Rivas, Boaco, Matagalpa, Jinotega, Bilwi, Bluefields, San Carlos, Nueva Guinea, Siuna, Jinotepe, Juigalpa and Estelí). The project was composed of 25 participants: 19 paediatricians (one from each hospital, with the greatest experience, to guarantee the standard of training without affecting paediatric care) and six nurses (two from each regional hospital where the acquisition of electroencephalographs was planned).
Description of the interventionThe International Cooperation for Development Project sought consistency with the national decentralisation of neuropaediatric care under Nicaragua’s MOSAFC in 2007 and the existing legal framework.14 Article 62 of the Nicaraguan Constitution emphasizes the obligation of the State to set up programmes for the benefit of persons with disabilities for their physical and psychosocial rehabilitation. In addition, this project has an affinity with Nicaragua's National Health Policy,15 which promotes the reduction of waiting lists for specialised outpatient clinics. Consequently, the proposed intervention was based on the development of the educational programme.
Paediatricians were trained in two phases: the first of these included three online sessions on congenital malformations and epilepsy, given by the director of the MINSA Department of Genetics and a paediatric neurologist. This was supplemented by also enabling participants to access an outpatient management guide for neuropaediatric patients with epilepsy, prepared by the two neuropaediatricians at “La Mascota” Hospital, together with the staff of the hospital’s National Teaching Directorate. The second phase consisted of face-to-face internships in the Department of Neuropaediatrics and the Intensive Care Unit at the National Children's Hospital “La Mascota”. These were financed by the project, with a duration of 15–30 days. In addition, during this period, theoretical and practical content was taught on the physiology of the central nervous system and epilepsy, covering clinical and differential diagnosis, aetiology and risk factors, and considerations for living with epilepsy, infantile cerebral palsy, the pharmacology of anticonvulsants (dosage and adverse effects), neurodevelopment, encephalogram, and other clinical controls. Finally, the NGO, ASNIC, contributed content on Human Rights concerning people with disabilities and their family caregivers. All this training was reinforced with documentation of interest on paediatric neurology and a guide on rights, gender perspective and the social resources applied to these health problems.
The training of nurses in the use of electroencephalographs, registration of reports and the examination of patient conditions for the clinical study was undertaken by technical staff from an electroencephalograph company and an expert nurse from the Neuropaediatrics Department of the “La Mascota” Children's Hospital. A total of six sessions were conducted over three days.
The NGO, DECCO International, supervised all the activities and participated in the processes arising from these, where necessary, i.e. in helping with the installation of the equipment, and training and coordination with MINSA through its health services.
Collecting data and variablesThe study variables were based on nine indicators and expected results created by the researchers and agreed on with other directors of Neuropaediatrics at the “La Mascota” Children's Hospital; directors of MINSA and the NGOs ASNIC and DECCO International. After approval of the study, these indicators were measured throughout the project, prior to the intervention (baseline - first three months at the start of the project), as well as at the end of the project.
The selected indicators were used to assess different aspects of patient care, such as: (a) the quality of training in paediatric neuropaediatric care (Were you motivated by the usefulness of the training, adequate time for training, expectations met as regards the practical sessions) (b) the level of decentralisation of services (decrease in the number of visits to the Hospital's Neurology outpatient clinic at “La Mascota”, increases in the care and follow-up of neuropaediatric patients and their families in regional and departmental hospitals); (c) the quality of care (reduction in the scheduling time for the first consultation with patients or relatives for neuropaediatric care, family satisfaction with reception, accessibility and neuropaediatric care) (d) networking (conference on neuropaediatric coordination, strengthening a national network), and (e) awareness-raising leading to action (provision of electroencephalographs; awareness-raising among family caregivers of children with neuropaediatric diseases through information materials) (Table 1).
Data analysisThe results reflect both quantitative and qualitative data. The indicators were measured through the Children's Hospital records, surveys, the conference’s development report, the list of participants and the assessment records of the NGO implementing the project (DECCO International), as well as an auditor. In addition, all this data was triangulated with the information contained in a field diary as a result of the observation of the participants and informal conversations with a researcher throughout the project’s duration.
Ethical considerationsThis study followed the ethical requirements considered valid for Nicaragua. Firstly, this intervention project was approved and financed by the Andalusian Agency for International Development Cooperation within the Regional Government of Andalusia (Spain, code: OC088/2017) and the Directorate of Health Services within the central MINSA. In Nicaragua, signed letters of agreement and endorsement for the project were obtained from the internal organisations at the participating hospitals, and ethical approval from the Directorate of Health Services at MINSA central - the Nicaraguan Ministry of Health). The research related to human subjects was conducted in accordance with the World Health Organisation's Declaration of Helsinki. All participants received written and spoken information about the study, including the right to withdraw. Informed consent was obtained individually from the participants.
ResultsFor the implementation of this education programme, nine indicators were measured during the training process and at the end of the project: namely, the provision of electroencephalographs, the reduction in the neurology outpatient clinic appointments at the National Hospital, the increase in health care through regional departments, family satisfaction, the quality of training, the reduction in the programming time for the first outpatient visit, awareness, the scientific conference and, lastly, the consolidation of the national network. A variety of different results were obtained (Table 1). In summary, the intervention expanded neuropaediatric care to families in Nicaragua, strengthening the health care system and promoting greater awareness of human rights issues, as well as the resources available to health care professionals, patients, and their families. Neuropaediatric care, which was entirely centred on one single hospital (“La Mascota”), has undergone drastic changes, increasing the number of electroencephalographs and the follow-up on patients in regional hospitals, while reducing outpatient visits and waiting times at the Central Hospital. Similarly, a neuropaediatric network was set up, training was provided and brochures were produced, leading to an improvement in the satisfaction of families with the care provided for their children.
Results: Indicators and effects of a training programme to strengthen neuropaediatric care and decentralise healthcare in Nicaragua.
| Indicators/time (effect assessment) | Initial value | Quantity/Percentage of Expected Value | Value obtained | Description/Impact |
|---|---|---|---|---|
| Indicator 1 | 0 | 4 Electroencephalo-graphs (1 electro-encephalograph in each of the 3 Paediatric Departments at the regional hospitals and 1 at the “La Mascota”) national hospital. | 1 electro-encephalograph at the Estelí Regional Hospital, 1 at the Chontales Regional Hospital, 1 at the Bilwi Regional Hospital and 1 at the Managua National Hospital (“La Mascota”). | The awareness of health care staff encouraged them to request funding for the provision of electroencephalographs, considered as useful tools for the diagnosis and classification of neurological syndromes. |
| Provision of electroencephalo-graphs following the request for funding from the Paediatric Units of 3 regional hospitals and the principal medical centre at the Manuel Jesús de Rivera Hospital in Managua (“La Mascota” Children's Hospital). | The most effective hospital in the application of assimilated learning to take on electro methods was Chontales, with 158 EEGs in 7 months, followed by Estelí with 44 EEGs in 5 months and Bilwi with 10 EEGs in 1 month. It is considered that these figures will increase, since the Estelí and Bilwi hospitals have gone beyond the technical limitations and those of the training (delay in the installation of electroencephalographs and second stage training for nurses to increase their motivation) to reach the path laid down by Chontales as a pioneer hospital. | |||
| Time: during the training process (first 3 months at the start of the project). | ||||
| Indicator 2 | 100% at the “La Mascota” National Children`s Hospital | 34% reduction in outpatient visits after training for paediatricians and nurses. | 95% reduction (19 hospitals providing outpatient appointments after neuropaediatric training). | To ensure decentralised care for outpatient visits to the paediatrician, the paediatric outpatient clinic in each of the 19 regional and departmental hospitals was used, equipped with trained paediatric staff. |
| Reduce the number of visits to the neurology outpatient clinic at “La Mascota” National Children`s Hospital | As regards reaching a diagnosis, care was decentralised at 3 regional hospitals (Estelí, Chontales and Bilwi) where 212 EEGs were performed between June and October 2019. In this regard, referrals for EEGs reached 80% decentralisation, since only the “La Mascota” Children's Hospital in Managua had an electroencephalograph. | |||
| Time: at the end of the project. | ||||
| Indicator 3 | None | 66% | 68.42% (Decentralisation has been verified through the data provided by 13 of the 19 hospitals whose paediatricians have been trained in neuropaediatrics). | This occurred due to the decentralisation process, increasing the functional capacity of the 19 paediatric professionals in the regional and departmental services. The neuropaediatric outpatient visits to the different MINSA regional and departmental hospitals began gradually, as each doctor completed their training and returned to their home unit. Due to the training process, the decentralisation of hospitalisation and outpatient care was undertaken at regional and departmental hospitals, covering 727 cases of neuropaediatric patients, as recorded in the data provided by the trained paediatricians. |
| Increase in medical care and follow-up on neuropaediatric patients and their families at the 19 regional and departmental hospitals nationwide. | ||||
| Time: at the end of the project. | ||||
| Indicator 4 | up to 6 months | 1 month | During the first month | The waiting time for paediatric appointments was reduced in three ways: |
| Reduction of the scheduling time of the first consultation of patients or relatives for neuropaediatric care. | - Each regional or departmental hospital assigned the first consultation at least once a week, increasing this to 75%−100% due to the intervention of trained paediatricians. The waiting time was reduced, since the patient did not have to wait for the first appointment at the children's hospital in Managua, which was under greater health care pressure. | |||
| Time: at the end of the project. | - Patients’ waiting time for EEG was reduced by 42.85%, due to nursing training. | |||
| - The waiting time for EEG results and the start of treatment was reduced from the provision of a digital communication network between the 3 referral hospitals and the La Mascota children's hospital. This has speeded up the interpretation and return of results by neuropaediatricians from the children's hospital back to regional centres and, therefore, has reduced trips to the “La Mascota” hospital and waiting time until the first treatment visit. | ||||
| Indicator 5 | Families reported low satisfaction due to the long wait for the first neuropaediatric outpatient visit, EEG analysis, and return of results for treatment. In addition, they mention other obstacles such as the need for significant geographical mobility and out-of-pocket costs for family members. | Satisfaction of 50% of the surveyed families (described as good care) with the reception in regional and departmental hospitals of the decentralisation process due to the training of paediatricians and nurses. | Out of a total of 15 families, 100% were satisfied with the accessibility to neuropaediatric care: 53.33% considered it very good, 40% good, and 6.66% adequate. More than 98% were satisfied with the care provided by healthcare professionals. | The satisfaction of families (spread over at least 3 regions and 12 departments covered by the 19 hospitals) in terms of accessibility to paediatric neurology units was good/very good int 93.33% of cases. Patients were treated more quickly at the main departmental hospital, referring them to the regional hospital for EGGs, thus saving the family the economic cost of travelling to Managua and reducing the travel time. |
| Family satisfaction with accessibility and neuropaediatric care received in national, regional, and departmental hospitals. | Families also valued positively the training of paediatricians in human rights and the needs of people with disabilities arising from neurological problems. They used terms such as "heightened sensitivity" to the patient's situation when they received information about additional support resources for comprehensive care. Consequently, 98.33% of the relatives rated as good/very good the care provided to their children by health care professionals (paediatricians and trained nurses) in the neuropaediatric units of their referral hospital. | |||
| Time: at the end of the project (after 10 months of training process). | ||||
| Indicator 6 | None (untrained) | A total of 50% of the paediatricians and nurses trained considered the training processes to be good, effective, and of good quality for the health care provided in regional and departmental services. | As for the practical sessions for paediatricians and nurses, 44% considered that these had met their expectations to a very high degree, and 28% to a high degree. Online training was rated as very useful for the provision of neuropaediatric care by 44% of the trained professionals, and useful for 24% of them. | Within the framework of the project, 25 health care professionals were trained: 19 paediatricians in the field of neuropaediatrics and human rights concerning care for children and their families in their regional and departmental hospitals, and 6 nurses were trained to perform EEGs to be analysed by the neuropaediatricians at the “La Mascota”. national hospital in Managua. All the health care professionals were highly motivated after the training process (100%), considering it to be "an opportunity to abide by children's right to health care"; 92% indicated that the project had met their expectations, and 100% of the staff at the regional hospitals where an electroencephalograph was installed considered that their units could offer good quality neuropaediatric care. |
| Quality of the training process and thematic content as perceived by paediatricians and nurses. | Specific training in social resources and human rights was perceived as very useful by 96% of the paediatricians. | |||
| Time: at the end of the individual training process (throughout the project). | ||||
| Indicator 7 | 0 guides, leaflets or brochures distributed. | 1000 guides, leaflets or brochures distributed. | A total of 1100 brochures on paediatric diseases, social resources and human rights were distributed to hospitals and families at the end of the training process. | DECCO International (the organisation responsible for the project) and ASNIC (the local organisation responsible) prepared, printed and distributed more than 1000 brochures on social support services and human rights to family members and professionals within MINSA's paediatric units, in order to raise awareness and ensure information and access to resources. These were distributed to the main hospitals and trained paediatricians to be handed out to patients' families. |
| Raising awareness among family caregivers of children with neuropaediatric diseases through the distribution of information materials. | The guide was reviewed by a gender expert and the heads of the participating bodies. | |||
| Time: at the end of the project (after 10 months of the training process). | ||||
| Indicator 8 | 0 | 1 | 1 national conference on Neuropaediatrics at the “La Mascota” Children's Hospital in Managua | A national conference in which 16 family members and 26 health care professionals and MINSA managers participated. The one-day meeting of the paediatricians was coordinated by the person in charge from the MINSA Department of Genetics, the neuropaediatricians and the authorities from the MINSA’s central health services. The workshop "Let's talk about human rights" was held with family members and presented new medical and social approaches to disability as a result of neurological pathologies, as well as national and international legislation on this topic. Gender perspectives in the care of children with these health problems were also discussed. |
| Scientific conference on neuropaediatric coordination. | Materials in the form of brochures on human rights and social resources were also provided to the attendees. | |||
| Time: at the end of the project (after 10 months of training process). | ||||
| Indicator 9 | 0 | 1 | 1 consolidated communication network between departmental and regional hospitals and the “La Mascota” National Children`s Hospital. | Participants in the network: 6 nurses, 19 trained paediatricians, 2 paediatric neurologists and the health services of MINSA central. The operation of the network was initiated through direct departmental and regional patient care, producing digital communication of EEG data between regional services, the children's referral hospital and central health services. The network was created, built and implemented through the project for the decentralisation of neuropaediatric care, guaranteeing the care of 727 cases and the performance of 212 EEGs by trained health care professionals over the 10 months of training. |
| Consolidation of a national network for communication regarding neuropaediatric patients in Nicaragua. | The flow of appointments began thanks to the provision of one to two days for an appointment at the neuropaediatric outpatient unit at their departmental hospitals, with their referral for EGG to the regional hospital faster than under previous conditions. This was also the case of orientation, reading and return of the studies by the paediatric neurologist at the children's hospital in Managua and the return of results and treatment for patients at their departmental hospital for appointments with paediatric staff trained in neuropaediatric care. | |||
| Time: at the end of the project (after 10 months of the training process). |
ASNIC: Nicaraguan Association for Community Integration; DECCO International: international community development; EEG: electroencephalogram; MINSA: Ministry of Health Information System.
According to the findings of Indicator 6, the training process for the intervention by paediatricians and nurses was considered very motivating for all participants (100%), and 68% rated it as having a high or very high degree of usefulness in terms of the provision of care in their units. The clinician rotation during the internship also met the expectations of 72% of the doctors to a high or very high degree, with 96% of them considering that the guidelines provided were of major importance and usefulness. Finally, 56% of professionals considered that the time spent on training was sufficient, although they expressed a desire for continuous training in different formats (e.g. blended learning, online). These results reflect a positive perception of the quality of training, linked to the increase in the functional capabilities of professionals in all MINSA hospitals. As previously reported, each paediatrician was trained for one month in the Department of Paediatric Neurology at the “La Mascota” Children's Hospital, guaranteeing practical training and contact with expert neuropaediatricians. In this way, paediatricians were able to carry out the first outpatient appointments with children with neurological problems and their relatives in regional and departmental hospitals, where a physical examination and an electroencephalogram (EEG) were performed, where necessary, as well as diagnosis, treatment and follow-up. In addition, the training and outpatient epilepsy management guidelines also provided these paediatricians with knowledge to assess whether or not children required referral to the “La Mascota” Hospital.
Another important aspect arising from the training intervention was the creation, in the second quarter of the project, of a communication and coordination network (Indicator 9) that had not previously existed, that is, an intranet coordinated from the MINSA central health services. This computer platform enabled fluid communication between the regional hospitals where the EEGs were performed and the Department of Paediatric Neurology at the “La Mascota” Children's Hospital for the purposes of interpretation and return to caregivers, along with a report.
Finally, cooperation between all paediatricians, neuropaediatricians and nurses led to the staging of a National Conference on Paediatric Neurotherapy, which gave way to the creation of a network (Indicator 8). On the one hand, all the professionals shared the clinical evidence for the constant improvement of neuropaediatric care, while on the other, this created an important process of empowerment for families, due to the feedback between the attendees. Some aspects addressed were the definition of the needs of patients and their families, treatment advances, the availability of health care and social resources, and strategies to improve the autonomy of families, especially women caregivers, and the opportunity to access care at the local level.
Decentralisation, institutional strengthening and improvement in the quality of careNeuropaediatric care at the regional hospitals (Estelí and Chontales) and departmental (Bilwi) hospitals was gradually initiated as each doctor completed their training and returned to their medical centre. All this led to the decentralisation of outpatient visits, which gave way to a reduction in outpatient appointments at the “La Mascota” Children's Hospital (Indicator 2) and an increase in the care and follow-up of neuropaediatric patients and their families at the 19 regional and departmental hospitals nationwide (68.42%) (Indicator 3), as well as a reduction in waiting times for first outpatient appointments (from six months to less than a month), improving families' accessibility to health resources, social support and recognition of their rights (Indicator 4).
Since the end of the project, each departmental and regional hospital has attended to outpatient visits through a weekly patient care programme, along with the possibility of direct referrals to regional hospitals; a key flow of information between these hospitals and the Children's Hospital in Managua, as well as documentation or management guides for epilepsy and other key neurological diseases that affect newborns and children under 15 years of age. All these findings suggest the strengthening of MINSA and an improvement in the perceptions of the patient and their relatives as regards the services, since outpatient appointments at the “La Mascota” Children's Hospital had been reduced, as well as the waiting time for appointments and analyses, with a positive impact on improving the quality of care and ensuring greater follow-up on cases of minors with disabilities and their families. As a result, more than 90% of the families reported being satisfied or very satisfied with the reception, accessibility, and sensitivity of the health care staff as regards the care of their children, increasing the autonomy of the family and giving rise to greater participation in activities such as the National Conference on Neuropaediatrics (Indicator 5).
Awareness conducive to actionThe entire training process, including the creation and dissemination of a guide on human rights, gender and social resources, was aimed at raising awareness among health professionals as to the social needs of these patients and their families (Indicator 7). In addition, the greater awareness of health care staff encouraged the implementation of mechanisms to apply for funding for the provision of material resources such as electroencephalographs, needed for the correct diagnosis and classification of neurological syndromes. The number of electroencephalographs (Indicator 1) was increased from 0 to 4 units (1 electroencephalograph for each of the three paediatric services in the regional hospitals and one at the “La Mascota” national hospital. Using these devices, EEGs were performed over one to three days a week at regional hospitals and every day at “La Mascota”, firstly on patients under five years of age (35.14%), secondly on patients over five and up to 14 years of age (55.44%), and thirdly, on those over 15 years of age (9.42%).
Finally, health care staff participated in raising family awareness of the disease, its implications and the need for appropriate treatment and follow-up on neuropaediatric patients, creating and disseminating 1100 brochures on basic social rights and resources for caregivers of children with neurological problems, which were delivered to caregivers (mainly women) during visits to the National Conference of Neuropaediatrics. Table 1 provides more details on the results.
DiscussionThis study has shown that the implementation of an education programme to improve and decentralise neuropaediatric care in Nicaragua resulted in positive health care indicators, such as the acquisition of equipment, the reduction of outpatient visits, better decentralisation estimates, greater family satisfaction, the holding of a conference for neuropaediatricians and greater family awareness through the distribution of brochures.
As for the training of health care staff. as in other initiatives, a series of activities was organised with the aim of improving the teaching and learning on paediatric neurological disorders from a social and humanitarian approach, thus providing a positive response to the overstretched hospital services within the MINSA.16 The humanitarian vocation of Nicaraguan paediatricians was characterised by their participation in the training process, regardless of the existing workload, as a result of the limitations of the system itself in terms of equipment and human resources. Although the first project related to congenital malformation was run in Nicaragua in the first decade of the year 2000, financed by Italian development cooperation, other countries in the Americas, such as Cuba or Costa Rica, had already established neuropaediatric care in their systems in 1980.12
In addition to this, in relation to the availability of paediatric staff, it should not be forgotten that the socio-political framework during which this proposal was implemented was that of a country facing a serious social crisis as a result of population uprisings in different cities of the country. All this was based on a MOSAFC whose main objectives revolve around a broad-based health service in each of the country’s departments and regions, with free and universal access. This was established on the basis of the needs of the population, and also promotion and prevention, with the idea of transcending personal care, along with a focus towards the family, community and environment.14
The second argument links the care offered with the relevance, for the main health care system, of contributing to the Sustainable Development Goals, always linking medical care to the social determinants of health, as mentioned above. In this way, the possibility of providing a response to the major current challenges was considered, in accordance with the human development of the populations served.17 Several years ago, the difficulty of the Nicaraguan health system in offering a medical-health response based on these determinants –and not only focussing on harm and disease–15 was identified. An assessment of some health care systems in Central American countries revealed that access to mental health services was limited, and that staff were not well trained to successfully manage the problems they faced. In this sense, decentralisation is seen as a strategy to improve the quality of health care from the local levels, strengthening inter-institutional relations, especially between ministries of health (public sector) and non-governmental organisations, organisations of patients and their families, as well as professional associations, which would enable better implementation and assessment of mental health programmes.11
This intervention focussed part of its feasibility and sustainability on the possibility of reducing waiting times and the delivery of patients' EEG diagnoses in regional hospitals, understanding that, regardless of the advances in training, there were always only two neuropaediatricians available to do the readings and deliver the results to the paediatricians at regional level. Thanks to the creation of the interregional digital communication platform, it has been possible to take advantage of the incorporation of new information technologies for the benefit of the population, guaranteeing savings in terms of time and financing, since, to date, these results could only be achieved by sending the analyses to Managua or taking advantage of a neuropaediatrician travelling out to the regions.
This project has made it possible to take advantage of the internal communication computing network to promote greater speed in the flow of health care and to shorten the distances between referral centres, for the benefit of a better quality of care for the patient. Another study18 reported on the benefits of ensuring consistency in health care between levels of care and different geographical areas. All this was possible through the implementation of a communication network using an online platform. The exchange of clinical information and the coordination of clinical management were favoured by the referral of patients from regional or departmental hospitals to the main hospital in the country's capital and vice versa, as well as the knowledge of patients' diagnoses at both levels of care. Once again, technology has occupied a decisive place in this decentralisation process, since the value derived from the adoption of electronic health records by local health departments was their ability to enhance the services provided to local health departments and capture patient information to improve the services received in community health centres.19,20
This study has some limitations that should be considered when examining our results. First, it was a pre-experimental study without a control group. Therefore, only pre-post comparisons were provided, making it difficult to guarantee that the results obtained would be superior to that of a control group. Second, implementing this type of project in other contexts could increase dependence on external funding sources, which vary depending on the country's policies. Third, this project may be limited by the absence of a cost-effective evaluation. In addition, statistical health data on children receiving neuropaediatric care was not collected, something the authors consider doing in the future. Finally, there was a lack of rigorous statistical analysis, since computerised data from hospitals was difficult to access and not much information was available. For this reason, participant observation and external audit were given greater strength.
In terms of the impact of the programme, projects with similar interventions could reduce health costs, taking into account the possibility of sustainability, i.e. maintenance over time without the presence of the institution that initiated these interventions. While the provision of material resources is essential for clinical care, so is the provision of human resources and/or the training of existing staff. The trained paediatricians and nurses, the installed equipment, the established communication network and the management guides distributed to professionals, as well as the information contained in the human rights and social resources guides, have, in the end, been the pillars that have achieved the sustainability of the proposal through integration within the structures of the MINSA. Another important pillar of this intervention was the increase in awareness among family caregivers of children with neuropaediatric diseases, through informative material. As previous authors have stated, these were independent actions to improve patient care and satisfaction.9 The continuity of the benefits of the project, once the actions were completed, thanks to its legacy through the reinforcement of MINSA's infrastructures and human personnel, will continue to make possible closer and more targeted health care, and respect for the rights of the patient.
Similar interventions could be extrapolated to similar contexts to reduce the pressure on health care in some areas and decentralise services, thus facilitating economic savings for families, enabling them to remain in their region and follow treatment appropriately. In addition, women, as the primary caregivers of sick children, may find a greater sounding board, accessibility to health services, and more resources that will meet their expectations.
ConclusionsOur results revealed the real-life effectiveness of this education programme for the improvement of neuropaediatric care in Nicaragua, supporting non-specialised paediatricians and nurses in their work as decentralising agents. The proposal reinforces universal access to basic health, focussing on different social determinants, and can serve as a model for other low-resource countries.
CRediT authorship contribution statementThe contributions of all the authors have been described in the authorship statement. Jean Rémy Mongbet-Ayouné: Research, formal analysis and interpretation, curating of the data, writing and preparation of the original draft; Giancarlo Lucchetti: formal analysis and interpretation, drafting, revision and editing; Bárbara Badanta: conceptualisation, methodology, formal analysis and interpretation, drafting, revision and editing, supervision and project management.
FundingThis project received a specific grant from the Andalusian Agency for International Development Cooperation within the Regional Government of Andalusia, Spain.
The authors have declared no conflict of interest.
The Andalusian Agency for International Development Cooperation within the Andalusian Regional Government (Junta de Andalucía), and the Ministry of Health of Nicaragua.
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