Epilepsy and Mental Health in Western Africa

This is an implementation research study that aims to develop, culturally adapt, and evaluate a program of mental health training for Epilepsy health service provider


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Overview
This is an implementation study of the cultural and contextual adaptation of a set of evidence-based mental health training tools (mhGAP) developed by the World Health Organization (WHO) to implement the mhGAP training in primary health care settings.

Although mhGAP has guidelines for adaptation, it is not clear how readily this is carried out in low resource settings for people with Epilepsy. There is increasing recognition of the high global burden of epilepsy and related disorders. Despite the availability of effective treatments, most individuals have limited access to appropriate services. Recent evidence from Mali and DRC and the countries’ health service records confirms previous findings that people with epilepsy face a sundry of challenges and low Quality of Life (QoL).

The expected outcome of the project include Knowledge-products in the form of Socio-cultural intelligence; and Toolkits for cultural adaptation of public health programs targeting epilepsy.


Objectives
The objective of this project is to train frontline workers in the diagnosis and treatment approaches of epilepsy in Mali and DRC with the introduction of the mhGAP epilepsy model. It is anticipated that the training of trainers and trainees with results as suggested above by the use of this approach. Knowledge, attitude, and behavior approaches will be used. A multidisciplinary group of psychiatrists, neurologists, and psychologists, has been assembled already. The project has the support of the following local groups. We anticipate that the introduction of the mhGAP in these two counties will take approximately
The mhGAP has been successfully used in such countries as Ghana. Its use has predominately been in English speaking parts of Africa. This project will provide an opportunity to enhance its use in French speaking Africa.

Background
Epilepsy in Africa is widely prevalent. It is estimated that over 10 million people in Africa have epilepsy (or seizure disorder). A good proportion of these individuals have no access to treatment in spite of the fact that the availability of cheap and traditional medications can be usefully employed in the treatment of these individuals. The causation of epilepsy in Africa can be attributed to a variety of factors. These include genetic predisposition, presence of childhood infections such as malaria, lack of proper prenatal care, and cultural factors. Cultural factors may include sorcery and related explanations. The treatment and access to care is complicated by the associated stigma. In addition, individuals with epilepsy are stigmatized as having mental illness and are often treated as persons with severe mental illness. An additional stigma results from local explanations for this condition. In other words these individuals may be stigmatized on two fronts. The social consequences may include social ostracization and inability to be married and raise children. A major challenge in the treatment of these individuals includes the lack of appropriate and effective medications which have been used for a long time in medicine. Another major challenge is the lack of trained personnel e.g. neurologists to diagnosis and treat these conditions.

Rational
Treatment of seizure disorders include controlling seizures, minimizing side effects of the treatment, and maintaining qualify of life to the extent possible. Up to 40% of people with epilepsy continue to experience seizures despite treatment. People with recurring seizures are more likely to experience memory and other cognitive problems, may experience difficulty in securing employment, many have restricted independence and may be exposed to stigma and shame associated with the disorder. As a result, people with seizure disorders experience a lower quality of life than general population. Hence, restoring quality of life is an important aspect of patient management.

The need for Mental Health Training
While most can cope with seizures, a significant proportion experience depressed mood and anxiety symptoms, some may cope through maladaptive use of drugs and alcohol.
Risk factor for depression include epilepsy-related disability, unemployment, financial difficulties, loss of independence, restriction of activities, impaired social support, isolation, and stigma associated with epilepsy.

While depression can be part of a complex partial seizure disorder, untreated depression is associated with more difficulty in achieving seizure remission. A depressed mood is not a normal part of the illness, it is rather a comorbid disorder occurring in up to 40% of people with epilepsy. The co-occurrence of Epilepsy and depression is a strong predictor of poor quality of life. Concurrent treatment of epilepsy and depression with the goal of improving quality of life is one of the most important goals of epilepsy management.

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The need for
Neurologists are well trained and competent to treat Epilepsy as long as appropriate pharmacological support and supply is available. However, as is the case in many LMIC neurologists are not also trained in mental illness. Given that epilepsy patient management requires pharmacological as well as psychological support in support of the Quality of Life, training in psychological aspects of Epilepsy becomes crucial


Challenges
Resources and Gaps
There is a paucity of access to services and support for people with epilepsy and their families.
The gaps include scarce availability of essential cost-effective medicines for Seizure disorders.
Lack of knowledge, stigmatization and discrimination impacts communities, patients and pose challenges to health care providers.

Lifetime prevalence of epilepsy is higher in Low and Middle-Income Countries (LMIC). According to the World Health Organization (WHO), 78.5% of deaths and 77.3% of disability-adjusted life-years due to neurological disorders are in low-and middle-income countries. Nearly 80% of people with epilepsy live in low- and middle-income countries, about 75% of whom do not receive the treatment they need.

< 1 in 4 people with epilepsy receive treatment

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COVID-19
Since the start of COVID-19 pandemic, there are increasing reports of neurological symptoms associated with COVID infection. Despite limited data on incidence and outcome, there is suggesting neurological complaints are prevalent among those hospitalized with COVID-19 which are associated with higher mortality. In addition, preexisting neurological disorders such as Epilepsy and other seizure disorders are associated with developing neurological signs and/or syndromes in COVID-19.

Associated Disabilities

Physical Disabilities of Epilepsy
Physical challenges related to seizures include falls and injuries, and sleep disorders. Falls and injuries leave recognisable scars (e.g., burn scars after falling into open fire) that stigmatize the sufferer.

Intellectual Disabilities of Epilepsy
are common including difficulty with thinking, judgement, learning, memory problems, and
academic underachievement followed by under-employment or unemployment.

Neuropsychological Disabilities of Epilepsy
Adaptive functioning impairments (e.g. communication, social skills, independence) impact every aspect of the life of a person with Epilepsy.


Stigma
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Stigma related to Epilepsy
Stigma is a strong risk factor for negative outcomes in Epilepsy as it leads to adoption of maladaptive coping strategies by patients and their families.
Studies show that with proper sensitization, education, and information, both patients and their families have improved outcomes. People with Epilepsy are likely to experience 3 types of stigma:, Internalized, Interpersonal, Institutionalized.

Project Summary

This research will add to existing evidence by exploring the impact of novel support mechanisms (training augmented with stepwise apprenticeship, mentorship, and technology-assisted supervision) to build capacity and sustainability in mental health services for people with epilepsy.

Furthermore, the proposed projects will equip health-care providers with the necessary tools to operationalize the adaptation and contextualisation of their programming by using theoretically-driven methods of cultural and contextual adaptation. The toolkit development process is based on established theories of cultural adaptation and will be informed by epilepsy- relevant lessons learned from the field and guided by culturally-informed, up-to-date, community-sourced data.

The proposed study involves threes steps:
1) mixed-methods evaluation of the existing epilepsy care, gaps, and needs of the current state of practice, including policy and legislative frameworks, services, and human resources. In-depth qualitative interviews will be conducted with key informants to gain a deep understanding of the gaps, strengths, and opportunities;
2) The development and implementation of an Cultural/Contextual Adaptation Support Package (CASP) that aims to facilitate implementation of mhGAP by providing four added components:
(i) supplementary training,
(ii) apprenticeship;
(iii) ongoing supervision;
(iv) participation in a community-of-practice (CoP).
3) The CoP and trainees will be supported by dedicated neurologists and mental health mentors locally and remotely.
The project team will work to foster collaboration between the CoP, decision-makers, and national policy makers.

Establishing an Epilepsy Task Force:
Given the paucity of guidelines on patient management, the project will spearhead a collaborative effort between Clinical Care Service Providers and Stakeholders to research and develop national guidelines.
The Epilepsy Implementation Task Force will be established to bring together leaders from the medical as well as within the epilepsy community to help develop national guidelines and strategies for patient management and epilepsy care in each county. Recommendations and guidelines will be developed targeting QoL and quality of care, aiming to improve access to treatment, and community awareness.

Training
It is estimated that the neurologist-to-population ratio in sub-Saharan Africa is 3/10,000,000, howeve, the ideal ratio is that of 1 per 100,000. The majority of neurologists practice in cities whereas more than two-thirds of people in resource-poor countries reside in rural areas, whereas all the neurologists practice in or close to big cities and towns.

Evaluation
Evaluation of the program will focus on two levels:
1) assessing the process of the implementation of a culturally and contextually adapted mhGAP training for epilepsy health care providers, including evaluation of post-training knowledge, attitudes, and practice;
2) analyzing local health systems-level constraints and opportunities that enable mhGAP training to contribute to scaling up and integration of mental health services into primary care for epilepsy patients.

Gender Analysis

We will examine variation in strategies used by mhGAP trainees when dealing with women. Based on this learning we will adapt the training to address potential biases and challenges, with the aim of reducing gender inequities in mental health service provision. Our cultural adaptation activities will take into account gender variation in illness experience, its aetiology, and social response. We anticipate adaptation will include addition of training content on gender-based violence.

Expected Outcomes
Pilot
Month 6: Culturally/contextually adapted mhGAP training for % of epilepsy health care providers in Y% of health clinics in # regions in Mali and # regions in DRC.
Project Initiation
Month 12: Support Package consisting of apprenticeship, supervision, and participation in community-of-practice augmented by low-tech m-health messaging, that supports sustainability
Project Establishment
Month 24: Proof of concept that concomitant mental health and neurological service provision established in primary health clinics in 2 Regions in Mali and 2 Regions in DRC, can be extended to other regions in Mali and DRC
Knowledge Transfer
Month 36: Policy briefs, J. articles, conference presentations, community engagement activities, social media campaign, infographics, and dedicated project website

Activities & Milestones

Project Initiation
Kick off meeting, Ethics approval, Recruit personnel, Engage with partners and communities
(months 1-3)
Situational Analysis:
Develop protocol/interview guides and carry out situational analysis. Locate and review existing unpublished local data
(Months 3-5)
Measures
Development, Adaptation and translation of measures and consent forms
Identify/recruit trainees, mhGAP training; Use iterative process to adapt training;
Trainee knowledge testing
Examination of trainee Practice Profiles; Generate lessons from clinical cases;
Mentorship and Supervision
Develop terms of reference for mentorship/supervision; Recruit and engage mentors ; Set up e-health supervision
Evaluation
Data collection and analysis
(Months 5-24)
Dissemination Activities
including feedback to communities
(Moths 25-36)

Countries where research will take place
The Republic of Mali
is a landlocked country bordered by Algeria (North), Niger and Burkina Faso (East), Ivory Coast and Guinea (south), and Senegal and Mauritania (West). It covers an area of 482,077 square miles (1,248,574 sq km) and has a population of more than 12 million. Bamako is the capital and largest city, is located on the shore of the Niger River in Mali's southwest; it has a population of approximately one million.
French colonial occupation of the region started in the mid-19th century and had a major impact on the politics and the language of the country. Mali is a multiethnic nation that comprises more than 12 ethnic groups, each with their own native language.The official language of Mali is French.
Islam is practiced by the majority of the population, the remaining practice Christianity (catholic)
and animism.

For current health system information about Mali, see
.

The headquarters of the pilot project coordination office will be located in the district of Bamako, in the Republic of Mali, Hamdallaye ACI 2000, near the 5th police district.


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Democratic Republic of the Congo
is host to the second largest rain forest on the planet. The country’s decades of armed violence, yet ongoing, have left the country extremely vulnerable. The country has low levels of development throughout and the large majority of the population has witnessed violence and trauma (two major wars, ongoing armed conflict, ethnic strife, and widespread destruction). The country’s total population is about 62 million. The current day DRC was established in 1908 as a Belgian colony and gained its independence in 1960. The main official language is French, however the different tribal and ethnic groups speak an estimated 242 different languages. The forest covers much of the country and most of the areas are geographically difficult to access.
Congo has several endemic tropical diseases in addition to recurrent communicable disease outbreaks, all compound the country’s health needs.

For current health system information about the Congo, see
.

The coordination office of the mhGap for Epilepsy and Mental Health pilot project will consist of a total of 11 people.The headquarters of the pilot project coordination office will be located in the city of Lubumbashi, in the Democratic Republic of Congo, Haut-Katanga province, ave Kilela balanda N ° 1023, 4th Floor.


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