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COMMUNITY DIALOGUEEPILEPSY AWARENESSThe Epilepsy Community Dialogue Model (ECDM)Locally known as Kifafa BarazaA multi-sectoral community dialogue, problem-solving, advocacy, myth- busting, and action-planning forum for epilepsy stigma reduction in Kenya.KENYA
ContentsA structured guide to understanding, facilitating, and sustaining community-led epilepsy stigma reduction in Kenya. 1What is a Kifafa Baraza?Introduction & Stigma Overview 2The Treatment GapHealthcare Access in Kenya 3Return on InvestmentThe Kenya Mental Health Investment Case 4Panel Composition & Model Structure45 Participants, 15 Sectors 5Facilitator & Moderator ToolkitConversation Rules & Empathetic Listening 7Community Dialogue WorkflowStep-by-Step Activity Guide 8Conversation Prompts by Sector20 Guided Questions 9Demystifying Myths & Human RightsFacts vs. Myths & Legal Rights 10Emergency Seizure First Aid GuideDO THIS vs. NEVER DO THIS 11Closing & Community Action PlanReflection & Next Steps 2The Knowledge GapHealthcare Access in Kenya 2 3 3 4 5 6
What is a Kifafa Baraza? Introduction & Stigma Overview A Kifafa Baraza is a structured, multi-stakeholder approach that brings together diverse community voices, identifies stigma and barriers, explores local solutions, promotes seizure first aid, strengthens referral pathways, and supports advocacy and policy change. The Kifafa Baraza is meant to tackle Epilepsy stigma the negative feelings, unfair behaviors, discouragement, discrimination, and fear directed at people with epilepsy making living with the condition more difficult. Some people say the stigma directed at them is much harder to deal with than the physical effects of seizures. Feel alone, anxious, worthless, depressed, hopeless Hide or lie about epilepsy, including not getting medical care Limit what they do and not develop abilities or friendships Internalized Stigma Blame or shame oneself for their condition Excluded from group activities and social relationships Not recognized as full community members Interpersonal Stigma Others avoid, exclude, or deny rights of people with epilepsy Seen as less capable or valuable than other people Institutional Stigma Prevents access to school, healthcare, and employment Education, employment, marriage, and housing policies may discriminate Health workers not well trained on how to support and treat epilepsy Medical systems do not provide access to trained professionals or affordable medicines The Three Levels of Epilepsy Stigma 3
The Knowledge GapWhen people do not understand what epilepsy is, they often feel afraid when someone has a seizure. The lack of clear, accurate information about epilepsy leads some to believe that seizures are a result of myths and the misconceptions within the community, thus propelling stigma, but when people come together to learn and share the truth about epilepsy, fear and harmful beliefs break down and are replaced with understanding. As everyone learns more about epilepsy, their responses change, and their fear gives way to efforts to help people with epilepsy and their families get the treatment, care, and support that everyone deserves. Families, health workers, teachers, and community members can create more inclusive environments to protect the rights of people with epilepsy through community education and lobbying to change policies, practices, and laws that limit what people can achieve. 4
The Treatment Gap — Healthcare Access in Kenya 80% The difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in percentage. High- income countries have a gap of less than 10%. The Four A's of the Treatment Gap Awareness Traditional beliefs and practices that do not consider epilepsy as a treatable condition; fear and harmful beliefs propelled by myths and misconceptions Availability Inadequate health delivery systems,lackof trained personnel,and lack of essential drugs Accessibility Poor infrastructure, small number of specialists in LMIC countries, epilepsy treatment categorized as a "specialty" Affordability High cost of drugs, financial pressures, inadequate supply chains causing stock-outs of antiseizure medicines Up to 70% of epilepsy cases can be effectively controlled with appropriate anti- seizure medication. For Universal Health Coverage to be achieved, there is need to prioritize the Primary Healthcare level in the management of epilepsy. The treatment gap is the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time. 5
Return on Investment — The Kenya Mental Health Investment Case Kenya Mental Health Investment Case Developed by the Ministry of Health with support from the World Health Organization (WHO) Reduced Mortality Effective epilepsy care reduces SUDEP, injuries from seizure-related falls, burns and drowning, and status epilepticus Reduced Disability Timely diagnosis and treatment prevent cognitive decline, physical injuries, psychosocial disability, and long-term dependence on caregivers Increased Productivity People whose seizures are controlled attend school consistently, gain and maintain employment, participate in farming and income-generating activities Lower Household Costs Families spend less on emergency medical care, hospital admissions, and traditional healers sought because of stigma or misconceptions Reduced Treatment Gap Fewer seizures, reduced emergency admissions, lower healthcare costs, improved quality of life Reduced Stigma and Social Exclusion Investment in awareness improves treatment-seeking behavior, reduces discrimination in schools and workplaces, and promotes social inclusionEpilepsy demonstrated the highest return on investment among the priority mental, neurological, and substance use conditions analyzed. In Kenya, epilepsy remains one of the neurological conditions with the greatest potential return on health investment due to the large treatment gap and the availability of proven interventions capable of significantly reducing disability, premature mortality and economic losses. Why Investing in Epilepsy Yields High ReturnsKES 1 KES 4.50 in economic returns over a 20-year period through improved productivity and reduced disability. 6
Panel Composition & Model Structure Full Kifafa Baraza complement 2 members per represented group Drawn from 15 community sectors Thearrangement ofaKifafaBarazaisthateachmemberofthecommunityisrepresentedinapanelconsisting of 15 individuals drawn from different sectors within the community. Each group represented at the panel has 2 members in the general audience, making a total of 30 individuals who will occasionally contribute to the conversation and give an emphasis on what could have been missed or to provide more clarity on what is being discussed. The Panel — 15 Representatives The General Audience — 30 Members Chief Boda-boda Chairperson Women Group Leader Ministry of Health Rep. Community Health Promoter Person with Epilepsy Disability Group Rep. Caregiver Youth Leader School Representative Opinion Shaper Religious Leaders (×2) Traditional Healer Ward Representative General Audience Total Participants 15 30 45 7
Facilitator & Moderator Toolkit Step Up: Encourage people who usually speak less — "Thanks for adding that. Would someone we haven't heard from like to go next?" Step Back: Gently ask those who tend to talk more to allow others space to contribute. Aim for a balance of voices so that all sectors are heard equally. Be a good listener. Show interest in what people say. Briefly echo the main point of what a person said so they know they have been understood. Welcome emotions. Gently encourage people to openly express what they are feeling. Assure participants that strong feelings and tears are not a problem. When someone says something that does not make sense, instead of correcting them, ask: "Can you say more about why you believe that?" or "Can you explain more about those feelings?" Listen and do not interrupt All phones should be on silent mode Give everyone at the panel a chance to speak Avoid judging people or telling them what to do Create a space where people can speak openly Have a specific time allowed for each speaker and appoint a timekeeper Encourage honest communication, humility, kindness, and respect Use simple, clear language, and try to find shared understandings to guide the discussion so it stays focused and respectful. Use a "talking stick" — a seashell, stone, feather, or meaningful object. When someone holds it, everyone else listens and does not interrupt. Kifafa Baraza works best when everyone participates fully and equally, even if this does not come naturally. Try to draw people out and help everyone feel their ideas are valuable and worth sharing. This is especially important when people have been made to feel uncomfortable about epilepsy within the community. Address conflict: Encourage people to share their thoughts without interrupting, and remind the group that everyone is there to support one another. Keep on topic: If someone strays, first acknowledge their input ("That's a good point.") then invite them to relate it to the topic at hand. Step Up / Step Back Dynamics Empathetic Listening Strategies Conversation Rules Keeping the Conversation on Track 8
Community Dialogue Workflow — Step-by-Step Activity Guide 1 2 3 4 5 6 7 8 9 Agenda Review Review the agenda and decide what you hope to do. Choose your main topics. Give everyone a chance to express what they would like to get from the conversation. The Conversation Participants spend 30 minutes discussing the problems they see in their community while a volunteer jots down ideas on the board. Guided questions are directed to each sector representative. Kifafa Baraza Rules Facilitator asks for suggestions for dialogue rules, notes them on the board, and asks for agreement from all. Decide on basic rules before you begin so everyone feels comfortable participating. Opening the Session Start with an ice breaker, a prompt ("Say something you are grateful for"), a prayer, a song, or quiet moments to "reset." Facilitator asks each participant to quickly introduce themselves. Questions & Answers Open floor for community questions and clarifications. First Aid Demonstration Perform a short play on Epilepsy seizure first aid. Identification of Causes of Epilepsy Stigma Conduct the Five Whys exercise as a group to better understand the identified problem and explore root causes. Demystification of Myths and Misconceptions Participants brainstorm factors that may influence the problem and the role of each participant in getting a solution. Identification of Types of Epilepsy Stigma Faced Facilitator helps participants to identify, narrow down, and agree on the key problems. Policy Advocacy Questions for Root Cause Analysis (NO. 6) Should we change/enhance the implementation of existing marriage laws so epilepsy cannot be used as a reason for preventing or ending a marriage? Should we ban housing and employment discrimination against people with epilepsy? Should we enact a policy that requires training teachers to safely respond to seizures and support children with epilepsy in schools? Should we get the health ministry to include antiseizure medications in a national essential medicines and health insurance list? Should we change/enhance implementation of disability laws that recognize epilepsy as a disability? 9
Stigma Bench Method: Pair multi-sector stakeholders to discuss 1 prompt at a time, building empathy and community action. Community Dialogue Workflow — The ConversationCultural Myths & TransmissionSocial Inclusion & Lived ExperienceHealthcare, Rights & SafetyReligious & Faith Perspectives Opinion ShaperWhat is epilepsy and its perceived causes in this community?Is it seen as punishment, curse, or witchcraft? Traditional HealerWhat traditional practices & herbs are used in treatment?Does it involve animal blood or traditional rituals? Youth LeaderHeredity myth: Must children inherit epilepsy from parents? Youth LeaderWould you comfortably share utensils with a person with epilepsy? Opinion ShaperIs epilepsy contagious, and why do people flee during seizures? Women RepWould you allow your child to marry someone with epilepsy? School RepHow do you handle classroom seizures when parents panic? Patient ExperienceDiagnosis acceptance & community group participation? Patient BarriersSystemic & social barriers in treatment, school, & jobs? CaregiverCaregiver challenges and support from government/community? Health PromoterMaternal rights: How are pregnant mothers handled & treated? Chief / AdminDisability registration process & legal protections across sectors? NCPWD RepRegistration rate for visible vs. invisible disabilities? County MOHAre antiseizure medications covered by health insurance? Boda Rider / CHPHelmet safety links & debunking mouth objects in seizure first aid? Christian ClergyInstructions given when patients are brought for prayers? Muslim LeaderMarital rights & divorce laws if spouse has undisclosed epilepsy? Faith LeadersAre persons with epilepsy demon-possessed, and how is it addressed? Facilitator TipEncourage respectful dialogue bridging spiritual care with biomedical treatment adherence. 10 Participants spend 30 minutes discussing the problems they see in their community while a volunteer jots down ideas on the board. Guided questions are directed to each sector representative:
Demystifying Myths & Human Rights Legal Rights of Persons with Epilepsy in Kenya Myths vs. Facts About Epilepsy Where to Report Rights Violations MYTH MYTH MYTH MYTH MYTH FACT FACT FACT FACT FACT Persons with epilepsy are demon possessed. People with epilepsy should not marry or have children. Epilepsy is a contagious disease — anyone who touches the patient or their excreta will acquire the disease. The right to participate in all matters in Kenya, including standing for Parliament or county governments The right to health and fair conditions of work; the right to informed consent for treatment and the right to refuse treatment Epilepsy is a consequence of possession, curse(s), witchcraft, or punishment for some ancestral error. The right to marry, get married, and have a family; the right to education in integrated schools A mother or father with epilepsy must pass it on to their children. The right to life and human dignity; the right to security and to be treated equally with others Kenya Human Rights Commission Kenya National Commission on Human Rights Federation of Women Lawyers National Cohesion and Integration Commission Legal aid and human rights organization Epilepsy is a medical condition often with identifiable causes. It is not a result of possession, not a curse, not witchcraft, and not a punishment from ancestors. Epilepsy is not contagious. Anyone can touch a patient while they are having a seizure. Epilepsy is a brain condition, not a spiritual problem. While praying for healing may comfort them, seizures can be stopped by using antiseizure medicine. With the right medical and social support, people with epilepsy can have healthy pregnancies, safe deliveries, and can breastfeed and raise their children. Persons with epilepsy have the right to marry, get married, and have a family — the same as anyone else. Participation Life & Dignity Health & Work Family & Marriage KHRC FIDA-K KNCHR NCIC Kituo Cha Sheria 11
Emergency Seizure First Aid Guide ✅ 🚫DO THIS NEVER DO THIS 1 2 3 4 5 6 7 8 Time the seizure Note the start time and how long the seizure lasts. If a seizure lasts longer than 5 minutes, or if another seizure starts soon after, get medical help right away. Cushion the head With something soft. Comfort and reassure Talk to them about what happened, offer comfort, and help them rest in a safe position. After the seizure stops Turn the person onto their side (recovery position) — top leg bent to anchor them, head tilted back slightly, chin raised gently — to help saliva, vomit, or other fluids drain from the mouth. Stay calm and stay close Speak gently — they may be able to hear you even if they cannot respond. Do not leave them alone. Protect them from injury If the person is standing or walking, guide them away from streets, stairs, hot or hard surfaces. Remove any sharp or heavy objects that could cause injury. Assess orientation once awake Ask their name, time of day, and where they are. Once confirmed aware, help them move to a safer place. Loosen any tight or buttoned clothing Around the neck to support breathing and prevent choking. If a person wears glasses, remove them carefully. Do not restrain Do not hold a person down or try to stop their movements during a seizure. This can injure both you and the person having the seizure. Do not put anything in their mouth or between their teeth This can cause them to bite their tongue or cheek and bleed in their mouth. If they swallow something, it could block their airway. (It is not possible for someone having a seizure to swallow their own tongue.) If a seizure lasts longer than 5 minutes, or if another seizure starts soon after the first — call for emergency medical help immediately. 12
Closing & Community Action Plan This Dialogue Aligns With Group Reflection Questions High-Impact Community Action Steps What surprised you? How do these beliefs affect people with epilepsy in our community? What was it like to share your statement and hear people's responses? What can we do to share helpful information that will reduce stigma? How do some of the beliefs promote epilepsy stigma, including self-stigma, interpersonal stigma, and institutional stigma? Kenya's Universal Health Coverage agenda — prioritizing primary healthcare for all Ask people to share examples of what happens when falsehoods are believed to be true. While we may not always be able to change a person's beliefs, we can try to keep wrong information and harmful beliefs from hurting people with epilepsy. End the discussion by emphasizing that correct information protects people with epilepsy from injury, shame, isolation, and harm. Sharing correct information also promotes dignity, inclusion, and belonging. 90% aware of diagnosis; 80% with access to medicines; 70% achieving seizure control; 100% experiencing improved quality of life WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders Promote school-based epilepsy education and first aid training SDG 3 (Good Health) · SDG 4 (Quality Education) · SDG 8 (Decent Work) · SDG 10 (Reduced Inequalities) Support training of healthcare workers in epilepsy diagnosis and management Support rehabilitation and psychosocial support for persons with epilepsy Champion community awareness and stigma reduction campaigns Advocate for reliable availability of essential anti-seizure medicines at the community health level Contribute to better data collection and surveillance to inform planning Kenya UHC Agenda IBE/ILAE Extended Epilepsy Cascade Targets SDGs School Education Essential Medicines Data & Surveillance Healthcare Training WHO IGAP 2022–2031 Psychosocial Support Awareness Campaigns 13
Thank You For more information: Kenya Association for the Welfare of People with Epilepsy info@kawe-kenya.org +254 722 594 268