Kenya is home to more than 44 million people, and mental disorders are common in the population, reported Catherine Syengo Mutisya, deputy medical superintendent at Mathari Hospital. A recent epidemiological survey found a prevalence rate of 10.8 percent in one community sample, similar to the rates found in neighboring countries (Jenkins et al., 2012). Mental disorders are a leading cause of years lived with disability in Kenya, behind only iron-deficient anemia (IHME, 2013b). Syengo Mutisya noted that in addition to common disorders such as depression and schizophrenia, Kenyans are at risk of other MNS disorders because of difficult conditions in the country: psychosis due to HIV infection, neuro-developmental disorders and epilepsy due to poor mother–child health, posttraumatic stress disorder due to terrorism and political tensions, and anxiety due to high poverty rates. Furthermore, an estimated 1 million people suffer from epilepsy in Kenya, according to Osman Miyanji, founding director at the Kenya Association for the Welfare of People with Epilepsy (KAWE) (Youth on the Move, 2014).
Policy and Legislation
In 2010, Kenya adopted a new Constitution that created a “devolved” system of government, in which both the national and county governments have responsibility for health care. Under the Fourth Schedule to the Constitution, the national government is responsible for health policy, national referral health facilities, capacity building, and technical as-
sistance to counties. The counties’ responsibilities include the delivery of care through government-operated health facilities and pharmacies, ambulance services, and promotion of primary health care. According to Isaac Adongo, head of the Directorate of Clinical Services of the Kenya Ministry of Health (MoH), this transfer of authority from the central government means that each of Kenya’s 47 counties is now responsible for planning, budgeting, implementing, monitoring, and evaluating its own health care services, including mental health care. Adongo explained that under the new system, county governments provide mental health services at the community, primary, general, and specialized levels, while the national government operates national health referral health facilities. He speculated that this provision of mental health care at the county level would reduce disparities in access to care.
Kenya does not have a comprehensive national mental health law; the Kenya Mental Health Bill of 2014 has been introduced and is awaiting discussion in Parliament. However, David Kiima, director of Mental Health at the Ministry of Medical Services, noted that there are several relevant draft national policies, including the Kenya Health Policy 2014–2030, the Kenya Mental Health Policy 2014, and the Health Sector Strategic and Investment Plan, all of which include strategies to address mental health care. In addition, the 2010 Constitution includes a Bill of Rights that affects people with MNS disorders, according to Richard Muga, deputy vice chancellor and associate professor at Great Lakes University of Kisumu. Muga noted that the Bill of Rights guarantees everyone—including those with MNS disorders—certain rights, including the right “to the highest attainable standard of health, which includes the right to health care services and the right to emergency medical treatment” (Republic of Kenya, 2010). Muga expressed his hope that mental health stakeholders would capitalize on this constitutional guarantee of health for all people.
Overview of Challenges and Opportunities
A representative from Kenya’s MoH set the stage for an in-depth discussion of the challenges of MNS disorders and encouraged participants to discuss country-specific solutions. Adongo stated that mental health often takes a back burner to communicable diseases, and even within the area of noncommunicable diseases. He listed several challenges to the mental health system, including an acute shortage of human resources, poor health infrastructure, inadequate supply of medicine, and
inadequate funding. Adongo noted that stigma associated with mental health—particularly mental illness—is one of the biggest challenges to the provision of mental health services. Adongo asked participants to contribute to solutions to these challenges in order to make mental health services “more equitable, acceptable, available, and accessible to all.”
Vikram Patel, professor of international mental health at the London School of Hygiene and Tropical Medicine and cofounder of Sangath, asked participants to keep in mind that numbers alone do not tell the whole story of the burden of MNS disorders in Kenya. He stressed that MNS conditions have a tremendous impact on people’s lives—not just the patients themselves but also their families and communities. Patel also noted that because of the recent attention on the Ebola outbreak in West Africa, getting governments or funders to prioritize MNS disorders would be even more difficult than usual. However, he drew a link between the two, positing that a weak health care system is a liability that can lead to both communicable disease outbreaks and inadequate care for noncommunicable diseases such as MNS disorders. He said that addressing the challenges discussed at these workshops—strengthening workforce capacity, improving the availability of essential medicines, addressing stigma, and building an information system—would be critical to strengthening the general health care system itself and to improving care for all people.
The mental health care system in Kenya faces a number of challenges, noted several participants. First, access to quality health care in general is hindered by “poverty, political instability, corruption, and rapid population increase” (Marangu et al., 2014, p. 2). The lack of a formal mental health policy, as well as the competing health priorities of HIV, malnutrition, malaria, and chronic disease, means that attention to mental health and resources for improving mental health care are scarce (Marangu et al., 2014). There is a severe shortage of mental health care specialists in Kenya, with only 54 psychiatrists and 418 trained psychiatric nurses for a population of 44 million (Marangu et al., 2014). Additionally, approximately 40 percent of these trained psychiatric nurses do not work in the field, with only 250 directly involved in mental health care services (Marangu et al., 2014). Stigma toward people with mental illness exists on every level, from the community to health care workers; this stigma may deter health professionals from choosing to work in mental health, further diminishing the workforce (Marangu et al., 2014).
Throughout the workshop, speakers and participants proposed potential ways to improve mental health care in Kenya, despite these pervasive
challenges. First, many participants repeatedly stressed that any mental health care effort must be integrated into the existing health care system. Integration can improve access and outcomes by providing more holistic care that can identify and treat patients earlier. In addition, integration can reduce stigma and can be a more effective use of limited resources. David Ndetei, founding director at the Africa Mental Health Foundation (AMHF), stated that integration is key, and “we must not be seen to be creating a parallel system.” He warned that any proposal that included “extra staff doing extra work” would be very unlikely to get government support, saying that “they will show you the door immediately, because they do not have the money.” He also cautioned that parallel systems would create a dichotomy between mental health workers and general health workers, and he stated that “it is time that every health worker [knows] that mental health is an essential part” of health care. He gave an example from a clinic in Nairobi, where patients who were referred to the psychiatric nurse were stigmatized as “mental case[s],” and suggested that all health workers—not just specialists—should be involved in mental health care to reduce stigma.
On a related note, many workshop participants recommended that in order to increase the number of people able to care for patients with MNS disorders, the mental health workforce must be expanded to include not just specialists but workers across the spectrum: from traditional and faith healers, to community health workers, to clinical nurses and primary providers. Although participants generally agreed that Kenya should continue to increase the number of mental health specialists, Ndetei declared that “we will never have enough … maybe in 1,000 years [there will be enough specialists].” Ndetei and his colleagues had noted nearly 10 years ago that “Kenya and other developing countries must … seriously consider shifting resources so as to allocate a significant component of their resources for mental health training of medical students and non-specialist medical personnel” (Ndetei et al., 2007). Patel and Paul Kioy, chairman of the Kenya Society for Epilepsy, both questioned whether specialists were even necessary for providing the bulk of care for MNS disorders, with Patel contending that the care “can actually be done by people with a much lesser amount of education” with sufficient training. He drew an analogy with HIV and noted that there are no HIV “expert centers” and much of HIV care is done by nonspecialists and non-physician health workers. Kioy argued that Kenya cannot postpone the care of MNS disorders until a time when there are enough specialists and asked, “How long are we going to wait to treat?”
Ndetei said he believed that training of specialists was still essential to a robust mental health care system, but concluded that training specialists could go hand in hand with expanding the workforce to include others.
The third key element for improving the mental health system in Kenya, as phrased by Tedla Wolde-Giorgis, senior advisor at the Ethiopia MoH, is “buy-in, buy-in, buy-in.” Many participants said if a mental health effort is going to succeed, it needs support from all decision makers and stakeholders involved in mental health care: the national government, NGOs, international partners, researchers, health care workers, communities, and patients and families affected by MNS disorders. To get buy-in on the national level, a mental health program must be aligned with the current priorities of the MoH, said Wolde-Giorgis. Because there are so many competing health priorities, advocates must present mental health as an “added value” to what the ministry is already doing. For example, if the ministry has prioritized malaria or maternal–child health, mental health must be integrated into these programs in a way that improves outcomes for these priority areas. Buy-in helps to ensure the obligation of sustained funding for mental health services, Wolde-Giorgies added.
Experts in each of the four challenge areas—lack of diagnosis and treatment, poor access to medicines, stigma, and inadequate mental health information systems—presented information about how these issues hamper the care of MNS disorders. Workshop participants discussed the challenges and identified opportunities for improvement. To facilitate the discussions, Ndetei and Ana-Claire Meyer, assistant professor of neurology at Yale School of Medicine, developed a draft comprehensive demonstration project (see Box 2-1 for an overview; a full draft of the proposal can be found in Appendix E). Participants were encouraged to use the draft as a starting point and to diverge from it or expand on it as they saw fit. Moving forward, the goals and specific strategies that participants identified could be divided into discrete demonstration projects that could be implemented by various organizations. The following sections outline the goals and strategies that individual participants identified as possible specific components of potential demonstration projects.
Sustainable Mental Health Care in Kenya:
A Potential Demonstration Project
David Ndetei, founding director at the Africa Mental Health Foundation, and Ana-Claire Meyer, assistant professor of neurology at Yale School of Medicine, identified several challenges that they hoped to address with the proposed demonstration project. First, there is a significant shortage of resources in Kenya, including human resources, essential medicines, and data. Second, pervasive stigma around mental, neurological, and substance use (MNS) disorders limits access to care and decreases quality of life for those affected. Finally, there is an unmet need for collaboration with traditional and faith healers, as many people in Kenya attribute MNS disease causality and pathology to a spiritual dimension.
Ndetei and Meyer’s proposed demonstration project was based on a decentralized, stepped-care approach that is evidence based and locally relevant. Three priority conditions were chosen for the proposed project—depression, epilepsy, and alcohol abuse—because they result in a high burden of disease in Kenya; they are not being addressed through other major initiatives; there are existing evidence-based algorithms for diagnosis, treatment, and care (i.e., a Mental Health Gap Action Program); and there is an opportunity to develop community-based interventions using lay or non-specialist health care workers.
The draft project included five key components:
- Strengthen referral networks, including community-based referral by traditional and faith-based healers.
- Build a supportive supervisory framework and referral pathways, including adequate numbers of specialists in MNS disorders.
- Promote health literacy and community engagement through a model of social inclusion, self-help, and human rights for MNS disorders.
- Strengthen and expand the existing health information system infrastructure.
- Strengthen the existing infrastructure for the distribution of essential drugs.
The project was developed with a 4-year timeframe. In the first year, key stakeholders, including the Ministry of Health (MoH), would develop a learning curriculum and an implementation plan. In the second and third years, clinical services for MNS would be implemented in two counties. In the fourth year, the program would be evaluated and ownership would be transferred to the MoH.
SOURCE: Ana-Claire Meyer and David Ndetei presentation, January 14, 2015.
Lack of Diagnosis and Treatment
Although the burden of MNS disorders in Kenya is high, diagnosis of these disorders is quite low. A study conducted in 10 general health facilities (excluding psychiatric wards) found that 42 percent of inpatients and outpatients had symptoms of mild and severe depression (Ndetei et al., 2009). However, only 4.1 percent of patients had been diagnosed with a psychiatric condition, meaning most psychiatric disorders are going undiagnosed and unmanaged (Ndetei et al., 2009). Syengo Mutisya observed that anxiety and depression in African patients are often masked by somatic symptoms (e.g., stomachache or headache), which leads to delays in diagnosis and treatment.
There is a significant shortage of human resources to diagnose and treat MNS disorders, Syengo Mutisya reported. Kenya has only about 88 trained, working psychiatrists. Only 16 out of 47 counties have psychiatrists in the public sector, and none have psychologists. Syengo Mutisya drew a contrast between the public and private sector, and noted that the private sector has more psychiatrists and psychologists, and patients can more easily consult directly with a specialist or be referred to one. Syengo Mutisya noted, however, that in both the public and the private sector, the cost of diagnostic testing (e.g., blood tests or computerized tomography scans) can be prohibitive for patients.
In addition to the public- and private-sector health care workers, people with MNS disorders also seek care from traditional healers. Victoria Mutiso, senior researcher at AMHF, reported that traditional medicine is popular in rural communities, where people have little or no access to modern medicine. The clinician-to-patient ratio is extremely low in Kenya, particularly in the area of mental health, and health facilities in rural areas are overwhelmed due to understaffing. In contrast, many Kenyans have easy access to traditional healers: WHO estimates that up to 80 percent of the population in Africa uses traditional medicine for primary health care needs (WHO, 2003). Mutiso said that traditional healers can help patients with MNS disorders by taking a patient’s history, offering medicinal herbs, and providing referrals to medical professionals. Workshop participant Lydia Matoke, president of the Herbalists Society of Kenya, added that traditional healers are “traditional counselors,” noting that these healers can offer patients a listening ear morning,
afternoon, or evening. AMHF has had success in training community health workers, including traditional healers, to use standardized tools to assess mental conditions and make appropriate referrals. Mutiso reported that a review of their program revealed that nearly one-third of patients referred to the community clinic were confirmed to have some type of mental illness, and of these patients, 77.5 percent self-reported some degree of improvement after 12 months of intervention.
Goals and Potential Strategies Forward
Several workshop participants identified a number of goals to improve diagnosis and treatment, and they developed specific strategies to address each of these goals as part of a mental health demonstration project. Beverly Pringle, chief of Global Mental Health Research at the U.S. National Institute of Mental Health, summarized the participants’ discussion.
Expanding the mental health workforce
Training primary care and community health workers in mental health: Throughout the workshop, many participants identified the shortage of mental health specialists in Kenya as a major barrier to diagnosis and treatment. Expanding the mental health workforce beyond traditional specialists (e.g., psychiatrists) to include primary care providers, nurses, and community health workers (CHWs) was suggested by many participants. They noted that these health workers often lack knowledge and awareness of MNS disorders, so training—both initial and ongoing—would be necessary for these providers to successfully diagnose and treat patients with MNS disorders. It was also suggested that CHWs, in addition to receiving training on recognizing MNS disorders and providing psychosocial services in a patient’s home, could be taught to act as lay counselors for some conditions.
Establishing referral networks among providers: Even if general providers and CHWs were trained to recognize MNS disorders, these workers have limited time and resources to properly assess, diagnose, and treat patients. Some participants proposed that robust referral networks be established so that anyone who sees patients at the grassroots level—CHWs, primary providers, or traditional healers—could easily refer a patient to a facility or a specialist for further assessment and treatment.
AMHF has already had success with this model,1 training traditional healers to recognize patients with possible MNS disorders and to refer them appropriately, and Muga noted that CHWs are a key component in this type of referral system. Because they are the only health care workers who enter households, they are in the unique position to initially recognize that a household member may have an MNS disorder and to motivate the person to seek care through a referral.
Improving the use of guidelines and diagnostic tools
Adapting existing diagnosis and treatment guidelines from other countries: Several participants observed that Kenya has a pressing need for consistent, evidence-based guidelines for the diagnosis and treatment of MNS disorders. Using the treatment guidelines for epilepsy as an example, Kioy discussed how to adapt existing guidelines from other countries for use in Kenya. He noted that epilepsy guidelines have been developed in many nations that have more resources and mental health providers. Because Kenya has few specialists, the guidelines were adapted to be usable by nonphysician health professionals and community workers, for example, allowing clinic officers and nurses to prescribe medicine. Kioy concluded that diagnosis and treatment guidelines must be “borrowed” from other countries, “adapted” to the context and culture of Kenya, and “followed wisely” by keeping the reality of available resources in mind. Several participants also noted that creating simple clinical fact sheets for health care providers might help facilitate appropriate diagnosis and treatment.
Using continuing education programs to help ensure implementation of guidelines: After diagnosis or treatment guidelines are developed or adapted, dissemination of the guidelines to providers is vital to their success. Kioy noted that if guidelines are simply handed out or sent through the mail, they are likely to go unread. He suggested using continuing education programs as a way of engaging providers with the guidelines. He noted that using local opinion leaders or respected practitioners in the
1To learn more about the Dialogue to Empower, Supervise, Support and Include the Informal Traditional and Faith Healers to Deliver Evidence-Based mhGAP-IG Adapted Psychosocial Interventions to Reduce Treatment Gap in Kenya (DIALOGUE), see http://www.africamentalhealthfoundation.org/dialogue.html (accessed July 14, 2015).
community to present information to their colleagues might increase the likelihood that practitioners will adopt the guidelines.
Developing information technology tools: The use of information technology to help providers diagnose and treat MNS disorders was discussed several times during the workshop. Frank Njenga, founding president at the Association of Psychiatrists and Allied Professionals, mentioned that mobile phone penetration in Kenya is high, and participants suggested using electronic and mobile-based applications to help specialists and non-specialists adhere to diagnosis or treatment guidelines for their patients. Ndetei reported that AMHF has had success with similar programs. The Drug and Alcohol Training Assessment in Kenya program provides free online training to health care workers about identifying and treating substance use disorders. AMHF has also developed a mobile app version of the mhGAP Intervention Guide depression module in order to train, supervise, support, and monitor non–mental health workers in the screening and management of depression.
Increasing patient knowledge
Implementing a public health awareness and education program: In addition to increasing the knowledge and skills of providers, many participants noted that patients and families also need to become more aware of their options and the benefits of treatment. They suggested using approaches such as informational brochures in the local language or text messaging as a means for the provider and the patient to communicate.
Using mobile-based diagnosis and treatment tools: Similar to the technologies suggested for providers, a few participants proposed that mobile-based tools be developed for certain conditions. For example, a person could text “schizophrenia” to a number and receive a link to a self-diagnosis app, or a diagnosed patient could use a mobile-based app to communicate with his or her doctor, report outcomes, and track care. Several participants noted that these types of tools could help patients who are reluctant to talk about mental health with a health care provider because of the fear of stigma.
Poor Access to Essential Medicines
Kenya has five major supply chains for essential medicines, noted Fred Siyoi, deputy registrar at the Pharmacy and Poisons Boards. The public supply chain is managed by the Kenya Medical Supplies Authority (KEMSA). Drugs are also supplied through faith-based organizations, NGOs, donations, and the private supply chain of wholesalers and retailers. KEMSA is a state corporation that is charged with distributing essential medicines to public health facilities in Kenya, said John Munyu, chief executive officer for KEMSA. It distributes to more than 5,000 health facilities. Two recent changes in KEMSA have improved access to essential medicines. First, in 2008, Kenya switched from a “push” system, in which predetermined medical kits were distributed, to a “pull” system, in which facilities can determine their needs based on demand in their particular community. Second, under the new devolved system of government, counties have autonomy to determine their own budgets for medicines, rather than being limited by the budget allocated by the MoH. These advances have increased distribution of all essential medicines, including psychotropic medicines, by 50 percent, noted Munyu. KEMSA now operates under a “supermarket” system, in which communities determine their own needs, wants, and budget, and order accordingly.
Munyu cautioned that despite this recent progress, many barriers remain to access to essential medicines. He said the absence of a national program to oversee treatment guidelines and to standardize treatment leads to an array of different treatment policies throughout the country, and there is a significant “lack of adherence to treatment guidelines and policies.” Due to this lack of consistent treatment, individual counties have different procurement needs, so KEMSA loses the advantage of economy of scale. Munyu reported that health care workers, especially in local facilities, are not informed about the availability of new drugs or they resist adopting new drugs. Finally, he said a lack of accurate market data makes forecasting and quantifying supply needs difficult. He did note, however, that KEMSA is developing a Logistics Management and Information System that will help facilities order medicines, track order progress, and query stock status, as well as forecast and quantify needs based on historical data for each facility or county. KEMSA has integrated the psychotropic medicines into this system as well as the current manual ordering system.
Goals and Strategies
Fiona Dunbar, vice president of global medical affairs at Janssen Pharmaceuticals, Inc., and Imran Manji, senior pharmacist at Academic Model Providing Access to Healthcare (AMPATH), summarized a number of opportunities discussed by participants. Dunbar started by noting the intersection between essential medicines and the other challenges discussed. She emphasized that an effort to increase supply-side access to medicines will only succeed if demand for the medicines is increased as well—that is, without proper diagnosis and treatment, or without reducing stigma surrounding MNS disorders, simply increasing the supply of medicines will not be effective. She also observed that a robust health information system is essential for effective planning, managing, and monitoring of the drug supply chain. Many participants identified numerous goals and strategies for improving access to essential medicines.
Identifying medicines in the formulary
Performing a full epidemiology survey to determine prevalence of mental health disorders and assess the need for medicines: Several participants noted that, before implementing a demonstration project in a community, it would be important to determine the burden of disease in that community in order to evaluate and determine which medicines would be appropriate. A few participants suggested using existing data sources and models of cost-effectiveness to develop the essential drug list.
Holding a stakeholder meeting to review the survey and identify drugs to be procured: Several participants proposed that a therapeutic committee at the county level should engage a stakeholders’ forum to review the evidence base and to decide what drugs should be procured and in what quantities. They cautioned, however, that consumption data should not be the sole factor used to determine procurement.
Improving delivery of drugs from the central level to the user level
Performing a market analysis: Manji observed that under the new devolved system of government, in which counties have responsibility for ordering their own drugs, managing a national supply chain efficiently could be difficult. Several participants suggested performing a market analysis to determine the needs, usage, prices, current availability, and
quality, as well as to describe the available personnel, distributors, and manufacturers.
Improving information flow to track drug use and inventory: Many participants discussed a pressing need for a robust health information system to improve quality and timely information flow across the supply chain system. By ensuring that data flow from the grassroots all the way to the top where decisions are made, Manji said, the health information system can provide the data necessary for drug tracking and inventory management. He noted that this system should also be linked to individual patient records in order to capture data on three points: availability of medications at a facility, contact coverage (what percentage of patients receive drugs), and effective coverage (what percentage of patients adhere). Manji noted that among other benefits, a health information system could prevent stock-outs.
Implementing a revolving drug fund to improve access at the community level: Manji mentioned that AMPATH is implementing a revolving drug fund program, in which a buffer stock of medications is kept at the facility level, distinct from the facility pharmacy. Patients are charged a small fee (with a waiver for those who cannot afford it), and the fees go back into restocking the pharmacy. Manji said this model may be a good stopgap measure that can ensure reliable access to medicines while the supply chain as a whole is being strengthened.
Improving the affordability of drugs
Expanding the National Health Insurance Fund (NHIF) to provide coverage for outpatient care: Several participants noted that NHIF now only covers inpatient care, and they suggested trying to expand the program to include drug benefits for outpatient care.
Subsidizing second and third line medications: Manji noted that funding is dwindling for drug donation programs, such as those for HIV or tuberculosis, in which private funders provide drugs free of charge. He said these types of models are not sustainable in the long term; however, he noted that using public–private partnerships to subsidize medications for MNS disorders could have a long-term positive effect by demonstrating the value of these drugs.
Increasing provider adherence
Developing national guidelines for screening, diagnosing, and prescribing: Many participants observed that one of the major challenges to keeping an efficient supply chain is the fact that different providers have different approaches for prescribing medications, and therefore, each county has different procurement needs. They suggested that developing national guidelines for screening, diagnosing, and prescribing for MNS disorders would help alleviate these differences as well as provide patients with more evidence-based treatment. Several participants proposed building off existing guidelines and adapting them to the culture and context of the community.
Using training and continuing education as a mechanism to improve provider awareness of clinical guidelines: Once guidelines are in place, providers must be made aware of them, several participants noted. Training programs, such as continuing medical education, could be used to ensure that providers are aware of new guidelines, familiar with new medications, and informed of the evidence base for rational use of medications. They noted that providers and patients sometimes resist using new drugs and that these training programs could lessen that resistance.
Stigma surrounding MNS disorders is a pervasive problem in Kenya; as Syengo Mutisya said, “Most Kenyans hesitate to seek psychiatric care because of the stigma.” She said that “people are scared” to seek services from mental health facilities out of fear of being labeled and facing stigmatization in the community and the workplace. Graham Thornicroft, consultant psychiatrist and professor of community psychiatry at Kings College, London, mentioned that because of a type of stigma called internalized or self-stigma, people anticipate discrimination and thus avoid seeking help for MNS conditions because of expected embarrassment or reputational damage. Thornicroft also drew attention to stigma from health care workers, reporting that research has shown that “primary care staff is one of the biggest stigmatizing forces” and that when patients “expect to be treated with less than full respect or not to meet a competent response,” they will avoid seeking help. Several participants pointed out that even psychiatrists are stigmatized by other providers: “Psychiatry, in comparison to other courses taught in medical school, is ridiculed
The consequences of this pervasive stigma, Syengo Mutisya said, include delay in diagnosis, lack of compliance with treatment, increased health care expenditures, and increased school and work absenteeism due to untreated mental conditions. Thornicroft stressed that the delay in diagnosis is a serious problem, and he reported that one survey showed an average time of 11 years between the onset of a mental illness (social phobia) and seeking help. He said a major impact of this stigmatization is premature mortality: People with MNS disorders in high-income countries may live 15 to 20 fewer years than their peers, while in low-income countries serious mental disorders might result in death 30 years earlier (Fekadu et al., 2015; Thornicroft, 2011).
Goals and Strategies
Alan Leshner, chief executive officer emeritus of the American Association for the Advancement of Science and editor emeritus of Science, summarized both the three levels of stigma noted by several participants—community, government, and decision makers—and health care workers, and the three messages that should be conveyed:
- Everyone is susceptible to MNS disorders,
- Factual information about the nature of MNS disorders, and
- Success stories to show that MNS disorders are treatable and that affected people can return to normal functionality.
A few participants identified two mechanisms for conveying these messages and reducing stigma among the groups: education and social contact with people with MNS disorders. Research shows that one successful way to reduce stigma is to have direct personal contact with people with the stigmatized condition, Thornicroft said. He noted that this contact could be done face to face or through the Internet or social media. However, he cautioned that this approach was less effective with health care workers and that an antistigma effort for this group must be more subtle and use multiple methods, such as using MNS-affected “champions” presenting a stylized script, an emphasis on recovery, and supplemental materials.
Reducing stigma in the community
Holding small, targeted meetings with peer educators as facilitators and leaders: Joyce Kingori, country program manager of BasicNeeds Kenya, noted that helping people recognize that they have a mental health disorder is one key to improving diagnosis and treatment. She said efforts to encourage people to become aware of their condition must be done in a small, targeted setting where people feel safe talking about their condition. A few participants also suggested that using peer educators who have MNS disorders was crucial because when one person has the confidence to stand up and identify herself as a person with an MNS disorder, others are more likely to do so as well. The peer educator also provides face-to-face contact with the person, which has been shown to reduce stigma.
Using mobile phones for mental health education: As previously mentioned, Njenga noted that the percentage of Kenyans with mobile phones was nearly 70 percent, and several participants suggested capitalizing on this by using mobile phones or other technology to convey education and information about MNS disorders. Miyanji noted that KAWE has formed a partnership with the biggest mobile operator in Kenya, and people can dial a number to get basic information about epilepsy. Mobile phones and other technologies could also be a way to provide the face-to-face contact that reduces stigma.
Implementing MNS curriculum in primary and secondary schools: Several participants stressed the importance of implementing school-based stigma reduction programs to educate children early on about MNS disorders. Such programs, they added, might help to reduce the stigma by changing future generations’ perception associated with people diagnosed with an MNS disorder.
Reducing stigma among health care workers
Integrating mental health services into primary care: Many participants noted throughout the workshop that in order to reduce stigma for MNS disorders, services must be integrated into primary care to avoid the appearance of a separate system. Ndetei stressed that creating a parallel system for mental health, rather than integrating services into primary
care, would further stigmatize patients and reduce the number of people seeking help.
Increasing training and continuing education in MNS disorders: Miyanji reported that medical doctors and other health care workers receive only about 2 hours of training regarding epilepsy, and other participants noted that psychiatry was looked down upon in medical school. Several participants said the health care curriculum should include adequate information about MNS disorders, including current information about the etiology and pathophysiology of disorders, because increased knowledge about the disorders might lessen stigma.
Improving stigma reduction training: Several participants also proposed incorporating stigma reduction training into health care education, using the methods outlined by Thornicroft: using MNS-affected “champions” presenting a stylized script, an emphasis on recovery, and supplemental materials. Several participants from KAWE reported great success using the social contact method to reduce stigma in the community. KAWE has “epilepsy ambassadors,” patients who talk openly about their personal experiences and show people that epilepsy can be treated. One of these ambassadors, Sitawa Wafula, founder and team leader of My Mind, My Funk, said that by talking to communities about her epilepsy and bipolar disorder, she has been able to help other people go for checkups or be more open about their own experiences with MNS disorders. Miyanji noted that KAWE uses patients as volunteers in its clinics because they have such a big impact when they speak with patients and the community, in part by showing that patients who have sought treatment are now “living a normal life.” Several participants identified specific strategies to reduce stigma in each group.
Reducing stigma among government and policy makers
Using patients as advocates: Some participants noted that patients can act as ambassadors and advocates in order to put a face on the issue of MNS disorders and to show that MNS disorders deserve funding and attention on a national scale.
Inadequate Mental Health Information Systems
The Health Informatics, Monitoring and Evaluation division within the MoH is in charge of collecting health data, said Peter Waiganjo Wagacha, associate professor in the school of computing and informatics at the University of Nairobi. He said information is gathered through several different tools and on several levels. At the community level, CHWs collect data using standardized paper-based tools. These data are then summarized by community health extension workers (CHEWs) and fed into the community health information system (CHIS). These data are forwarded by the CHEWs and entered into the district health information system (DHIS2), along with data from other health care providers and facilities. DHIS2 is free and open-source computer software that is used by many countries to monitor key health indicators. In addition, electronic medical records (EMRs) have been put in place in many health facilities to collect patient-level data.
The CHEW summary, which collects data on 66 indicators about the efforts and services offered at the household level, has only one MNS-related indicator: “total number of known cases of mental illness referred.” DHIS2 collects district-level information on eight mental health areas:
- Mental disorders
- Psychiatry attendance
- Psychiatric ward
- Drug-induced psychosis
- CHEW referred with mental illness
- Delayed development milestones
Wagacha suggested that a robust health information system would ideally contain four major components: EMRs, community-level information, district-level information, and patient tracking. He noted that the first three exist already in the Kenyan health information system, though they could be improved. He said the fourth, patient tracking, is important for tracking a patient through referral, to ensure that the patient’s information moves with him and that there is follow-up after discharge. Wagacha stressed that “there are indeed systems that are already in place that we can actually piggyback on,” and he suggested that because of
this, efforts to improve the MHIS “could move … forward pretty quickly.” Wagacha noted that there is a fairly large amount of technological infrastructure that has been implemented in recent years, particularly within HIV programs, and that leveraging on these existing systems would be ideal. Wagacha warned, however, that a health information system is only as good as the human resources available to enter and interpret the data. It is not enough to simply build the system, there must be resources to manage it.
Goals and Strategies
Joyce Nato, mental health advisor in the WHO’s Kenya office, and Francois Bompart, vice president, deputy head, and medical director of Sanofi’s Access to Medicines department, summarized the discussion about MHISs. Several participants identified two overarching ideas: first, that any effort to improve health information systems for mental health must be integrated into existing systems, and second, that the communities being asked to contribute to a data collection system must see and reap the benefits of such a system (see Box 2-2 for a comprehensive checklist for strengthening an MNIS).
Checklist for a Mental Health Information System
An MHIS should not only collect, process, and analyze information about mental health determinants, needs, system response, and impact of interventions; it should also communicate findings in an accessible form that is useful to those who will use it, said Ahmed Heshmat, mental health advisor to the Afghanistan MoH. Only then can it perform its functions of facilitating effective planning, budgeting, delivery of mental health care, and evaluation.
✔ National commitment and leadership to ensure that relevant high-quality information is collected and reported
✔ A minimum dataset of key mental health indicators
✔ Intersectoral collaboration with appropriate data sharing
✔ Routine data collection supplemented with periodic surveys
✔ Quality control and confidentiality
✔ Technology and skills to support data collection
✔ Sharing and dissemination
Key strategic interventions:
✔ Periodically assess and report the mental health resources and capacities available using standardized methodologies
✔ Routinely collect information and report on service availability, coverage, and continuity for priority mental disorders disaggregated by age, sex, and diagnosis
✔ Recording and reporting of health outcome data, such as suicides, at national level
Key recommendations and actions:
✔ Agree on the goals of the MHIS
✔ Evaluate existing frameworks and assess gaps
✔ Develop/strengthen National Mental Health Information Systems incorporating the developed indicators for mental, neurological, and substance use disorders
✔ Integrate the developed system/indicators into the National Information System and in the systems of other different sectors and settings (civil registration, vital statistic system health, etc.)
✔ Periodically assess and report the mental health resources and available capacities using standardized methodologies
✔ Establish a national focus of expertise and leadership to implement the development, reporting, and use of mental health surveillance and information
✔ Develop procedures, regulations, and training to ensure that the processes of collecting, analyzing, reporting, and using data meet standards of quality and confidentiality
✔ Routinely collect information and report on service availability, coverage, and continuity for priority mental disorders disaggregated by age, sex, and diagnosis
SOURCE: Adapted from Ahmed Heshmat presentation, January 14, 2015.
Collecting more MNS data
Adding more MNS indicators to the community health worker data tool: Of the 66 indicators on which community health workers collect data, several participants said only one refers to mental health—“total number
of known cases of mental illness referred”—and suggested adding more mental health indicators to the tool in order to track prevalence and outcomes. However, Wolde-Giorgis warned that the process is not as simple as asking the MoH to add an MNS indicator to the current data collection tool. He said that with so many competing health priorities in Kenya, the MoH is making hard decisions about what indicators should be included. Noting limited time and resources, Wolde-Giorgis said, “You cannot have 400, 500 indicators within the health information system and then half of the time of those workers is being spent just collecting data.” He said a new indicator must be justified in terms of how it fits in with the MoH’s priorities, for example, whether it supports the Millennium Development Goals (MDGs).2 He encouraged mental health advocates to become involved in the ministry committees that make these decisions.
Using data from existing sources: Several participants observed that health workers are not the only people in a community who have data about the mental health of community members. They suggested that tribal chiefs, who play a pivotal role in the community, could be a source of data, as well as the police, prisons, NGOs, and faith-based organizations.
Performing routine surveys to gather data: Several routine data collection tools already exist, such as the Kenya Demographic and Health Survey, and several participants suggested trying to add mental health indicators to these tools. One participant said that because these surveys also include socioeconomic data, adding mental health indicators would enable sophisticated analyses that could be useful to policy makers and government officials.
Improving data collection processes
Adding MNS data collection to CHW responsibilities: According to several participants, CHWs already carry a heavy workload, and if a new indicator were to be added to their data collection tool, it would need to be integrated into their current tasks or leverage information that is already being collected. For example, if a CHW is visiting a household for
2MDGs are international development goals that were set by the United Nations. The goals include ending extreme poverty and hunger, promoting gender equality, and reducing child mortality.
mother–child health—for which there are eight indicators in the tool—the CHW could also inquire about postpartum depression or anxiety.
Using mobile phones to collect data: Several participants proposed using mobile phones to improve the MHIS. They suggested that health workers—CHWs or even primary providers—could use their mobile phones to collect data that could be transmitted immediately to a central database. Wagacha reported that this has been tried successfully in Kenya and that the workers were willing to absorb the costs of sending text messages because they preferred the convenience of using mobile technology instead of paper forms.
Aligning the health information system with diagnosis and treatment guidelines: Many participants stressed that any new health information system should align mental health indicators with existing training, diagnosis, and treatment guidelines.