Epilepsy Training Course for Community Health Workers

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1 Epilepsy Training Course for Community Health Workers
Version 14 Dec 2012 Epilepsy Training Course for Community Health Workers For comments and suggestion on this guide, please to

2 Preparation Icebreaker - introductions to each other (Name, profession, current posting, interest in and experience of epilepsy) Background of the training Schedule Provide each participant with a nametag Have each participant and facilitator introduce themselves Explain the background of the training and schedule (provided in slide numbers 3)

3 Schedule Put the schedule table here. For example, time
Name of the facilitator/s Registration Icebreaker Learning Objectives Section One: Role of Community Health Worker Section Two: Seizures and Epilepsy Section Three: Epilepsy Care Pathway Break Section Four: Support and Follow up Section Five: Linking with Resource and Advocacy Section Six: Own well being Conclusion, Closing Remarks Put the schedule table here.

4 Learning objectives 1. To understand the important role of community health workers in mental health care and the management of epilepsy 2. To be able to recognize seizures and become knowledgeable in seizure management 3. To understand the pathway of care for a person with epilepsy 4. To be able to provide follow up and support to individuals and their families during epilepsy management 5. To be able to link with formal and informal resources for epilepsy 6. To be able to advocate in the community for improving epilepsy care 7. To be able to create strategies to maintain your own well being

5 Mental Health Gap Action Programme (mhGAP)
mhGAP is the WHO programme to scale up care for mental, neurological and substance use disorders Launched in 2008 The focus is on increasing non-specialist care, including primary healthcare, to address the unmet needs of people all over the world Explain that the WHO launched the Mental Health Gap Action Programme (mhGAP) for low and middle-income countries. Explain that the epilepsy project is under the umbrella of mhGAP. mhGAP and it’s tools would be used for capacity building. The objective is to scale up care for mental, neurological and substance use disorders. If there is enough time, play the following 7 minute video: Overview of the video: "When I first got the illness, everyone thought I was a wicked person or possessed by evil spirits. I could not get work because people didn’t know what to do if I had a seizure. In 2001 I started to take this medicine and started feeling better. I started my own business and now sell these woollen carpets. Life is now good." A person with epilepsy reflects on changes brought about by an epilepsy treatment program in China. In low and middle-income countries 75% of people do not get the mental health services they need. The mhGAP programme was developed to address this. This video shows that with costs as low as US$ 2 per person per year, and with proper care, assistance and medication, millions can be treated. As well as the epilepsy programme in China, it features a project for children with intellectual disabilities in South Africa, a project on services for persons with psychoses, and a suicide prevention project in India. Preparation note In case there is no high-speed internet connection in the workshop room, the video need to be downloaded before the training. Play the video

6 mhGAP conditions Depression Psychosis Bipolar disorder Epilepsy
Developmental disorders Behavioral disorders Dementia Alcohol use and alcohol use disorders Drug use and drug use disorders Self-harm/suicide Other significant emotional or medically unexplained complaints The priority conditions covered in mhGAP-IG were included because they represent Large burden High economic costs An association with human rights violations This time, we focus on Epilepsy. Burden of epilepsy: affects the quality of life of individuals with epilepsy, not only due to seizures but also due to other physical conditions such as respiratory, cardiovascular and neurologic dysfunctions. Affects emotional well-being if unable to manage seizures, and does not have a positive support system. Also affects productivity of the individual and society, since the individual and possibly their family may experience effects of stigma and ostracism. Why epilepsy training is important in a particular context and community (adapt according to the project) Learn about the experiences of individuals with epilepsy and particularly how their society treats epilepsy Learn how to provide support to those individuals and their families Learn how to create linkages with the community in order to support inclusion and reintegration

7 Section One: Importance of Community Health Workers
Goal: To learn about the important role of community health workers in mental health care and the management of epilepsy Key Point: To help community health workers understand their important role in their communities and in mental health care by watching the way a small drop of ink can change the color of water. Required Materials: Ink, Water, Large Glass Jar Adaptation Note: If ink is not available, explain with other example that reflects the same key point. For example, a small amount of yeast making bread rise or throwing a rock in water and watching the circles expand. Facilitators Note: Fill a large glass jar with water and place it so it is visible for all participants. Ask for one participant to be a volunteer. Ask the volunteer to put one drop of ink into the water. Watch as the ink spreads and turns the water another color. Ask participants the following: • How did one small drop of ink change the water? o e.g., the small drop of ink changed the color of the entire jar of water • How do you think this relates to the role of community health workers in mental health care and in your communities? o e.g., just like a small drop of ink could change color of the water, community health workers can create change in their communities

8 The Importance of Community Health Workers
Activity: drop of ink How did one small drop of ink change the water? How do you think this relates to the role of community health workers in mental health care and in your communities? Key Point: To help community health workers understand their important role in their communities and in mental health care by watching the way a small drop of ink can change the color of water. Required Materials: Ink, Water, Large Glass Jar Adaptation Note: If ink is not available, explain with other example that reflects the same key point. For example, a small amount of yeast making bread rise or throwing a rock in water and watching the circles expand. Facilitators Note: Fill a large glass jar with water and place it so it is visible for all participants. Ask for one participant to be a volunteer. Ask the volunteer to put one drop of ink into the water. Watch as the ink spreads and turns the water another color. Ask participants the following: • How did one small drop of ink change the water? o e.g., the small drop of ink changed the color of the entire jar of water • How do you think this relates to the role of community health workers in mental health care and in your communities? o e.g., just like a small drop of ink could change color of the water, community health workers can create change in their communities

9 Community Health Worker’s Role
Suspecting Referring Follow up Psychosocial support Linking Community Health Workers play the following important roles in global health care: Suspect epilepsy Refer to health care provider Assist groups and individuals in accessing social and health services Do home visit, outreach and provide support Advocate for those who have difficulty accessing health and social systems Act as an important link between communities and health and social services Provide health education to communities Advocate for health needs within communities Address stigma and discrimination

10 Community Health Worker’s Role
DISCUSSION Can you think of anything community health workers do that should be added to this list? In your community, what role do you play? Discussion: limit to 5min. Take notes in the flipchart.

11 Knowledge Skills and Values for Community Health Workers
Individual reflective exercise Draw a person who represents a community health worker on a sheet of paper. Around the community health worker: list the knowledge, skills and values you believe a community health worker needs to fulfill their role effectively. Activity: Key Point: To help community workers reflect on the important knowledge, skills and values required for community health workers to fulfill their roles effectively. Duration: 15 minutes (5 minutes for individual reflection, 5 minutes for group discussion) Required Materials: Paper, pencils, pens or markers (for each participant) Example: Note for the Facilitator: • Explain to the participants that this is an individual reflective exercise. • On a sheet of paper, have the participants draw a person who represents a community health worker. • Around the community health worker, ask participants to list the knowledge, skills and values they believe a community health worker needs to fulfill their role effectively. What kind of skills are needed to overcome anticipated challenges? What kind of values are needed in particular to manage individuals with MNS disorders? • Allow five minutes for reflection. • Either in small groups of 3-5 or in the large group, have each participant share what they believe are important values, skills and knowledge for community health workers to effectively work with epilepsy. • Ensure the community health workers keep their pictures of community health workers as they will be used again in the training.

12 Overview of Community Health Worker’s knowledge, skills and attitudes
Knowledge and facts about epilepsy Attitudes to adopt in order to support individuals and their families Skills for managing epilepsy at home and in the community • During the training, we will review the general principles of epilepsy management . Examples of related knowledge, skills and values include: Knowledge: e.g., facts about epilepsy, where and how to link those with epilepsy Attitudes: e.g., courage, humility, respect, confidentiality, empowerment, patience, creativity, professionalism Skills: e.g., what to do when someone is having a seizure, how to advocate for someone with epilepsy and their family, how to teach communities about epilepsy, how to do a homevisit for someone with epilepsy •

13 Levels of care Improving the management of epilepsy means community health workers work at two main levels: 1. Individual and their families/caregivers 2. Communities Improving the management of epilepsy means community health workers work at two main levels: 1. Individuals (emphasized inclusion of individuals’ families and caregivers, not solely the individual with epilepsy) 2. Communities • Working with individuals who have epilepsy places you in an important position to advocate in the community because: You have relationships with the community, individuals living with epilepsy and formal health services You have knowledge about what is needed to improve epilepsy management You know strategies for working with communities • In the first half of the training, you will learn the general principles of management for working with individuals who have epilepsy, their carers and their families. • In the second half of the training, you will learn principles for working with communities

14 Establish communication and build trust
Greet the person warmly and with respect Introduce yourself by name and position Maintain confidentiality and privacy Take time for the interview (especially the 1st interview) Show interest Be honest - keep promises Emphasize that establishing communication and building trust are important for the different roles community health workers play. Go through the bullet points, comparing the text in the bullets with what people have said before.

15 Using good communication skills
DISCUSSION Attitude Show respect Try not judge Be genuine Listening and observing Listen carefully Notice non-verbal communication Communicating Summarize what the person says Show understanding of how the person feels and thinks Use simple and clear language State that these points are critical for good communication. Ask the group the following questions. Limit discussion to 5 min. How would you show respect? What are the non-verbal cues you would look for to see if the person is comfortable?

16 Using good communication skills
Pair up with another person. One person is "A" and the other person is "B" A describes a problem and B listens carefully for 2 minutes Now repeat the problem but this time B shows little interest Now switch roles. B will describe a problem to A and repeat both steps 2 and 3 Exercise Duration: 15 min Purpose: This exercise will help people understand the complexity of the verbal and non-verbal communication, how it impacts emotional state and rapport. Procedure 1. Divide the participants into pairs. 2. Spread them around the room. It would be best it they are seated. 3. Keep this slide on the screen. 4. Explain each step to them – You will give each step 2 minutes to allow discussion . Step 1: Person A talks about something important for him/her, Person B will be listening carefully to person A. (The listener may or may not talk if s/he wishes to do so.) Step 2: Person B shows no interest in what A is saying. 5. Explain that each time you clap your hands they should move to the next step.  Processing the exercise in plenum Go to the next slide to process the exercise

17 Afterwards… DISCUSSION
What made you feel that the person was listening and how did it make you feel? How did you feel when the person was not listening to you? On a flip chart you can draw a table to fill in while the trainees are giving their answers. Ask each pair to give an example.

18 Section Two: Seizures and Epilepsy
Goal: To understand and be able to recognize seizures and epilepsy, and to be knowledgeable about seizure management Share your experience. True or False. Seizures and Epilepsy Why epilepsy is important What are reasons for high treatment gap? Responding to Seizures When to suspect epilepsy Knowing when to suspect seizures/ epilepsy (4 senarios) What to do if you suspect seizures or epilepsy Whom to refer When to refer

19 Share your experience Has anyone of you witnessed a seizure?
What did you see? What are the local names for seizures or epilepsy in your community? Does these names have negative influence? What do local people believe causes seizures or epilepsy? Duration: 5 min maximum If no one has seen a seizure, ask people what they understand to be the features of a seizure. Prepare beforehand and research some local terms for seizures and epilepsy. Introduce a discussion about the different terms they may hear used to describe seizures and epilepsy. Some of the local terms may imply the person is mad, possessed, stupid or cursed Be sensitive and use culturally appropriate language Try to find a term that is understood but is also the least insulting or judgmental 19

20 TRUE or FALSE Seizures are easily transmitted by physical contactwith the person suffering , or by their secretions or objects touched by them FALSE Epilepsy is caused by witchcraft, possession, or evil spirits Seizures are abnormal electrical activity from neurons TRUE People with epilepsy should be restrained Children of people with epilepsy will develop epilepsy as well With antiepileptic medicines 70% can be seizure-free when treated Discussion Start a discussion by asking participants to answer TRUE or FALSE to each of these questions. Use these questions to explore their knowledge, beliefs, and perceptions of epilepsy.

21 What are seizures? Seizures are episodes of brain malfunction due to abnormal electrical activity Seizures can be classified as generalized or partial according to the clinical presentation We will only discuss generalized seizures today Seizures can cause Loss of consciousness Convulsive movements (i.e. involuntary shaking of body) Incontinence of urine or stool Tongue biting Background knowledge The following is a list of the types of seizures split into two categories Primary Generalized Seizures Partial Seizures 70% of all seizures are convulsive. Convulsive seizures have a high mortality rate, but they can be treated. We are focussing on convulsive seizures in this training module.

22 Typical example of seizure
Play the video Show a short video of a person having a seizure. Inform participants that the scenes might be disturbing for them. The video is helpful for participants to improve their capacity for identifying convulsive seizures. Use the link below for downloading the video.

23 What is epilepsy? The condition in which people experience recurrent (at least twice), unprovoked seizures Recurrent = usually separated by days, weeks or months Unprovoked = there is no evidence of an acute cause of the seizure (e.g. febrile seizure in a young child) Explain that epilepsy is also sometimes known under the name "seizure disorder."

24 Difference in terminology (seizure/epilepsy)

25 Why is epilepsy important?
Epilepsy is common (1 in every 100 people around the world are affected by epilepsy) 50 million people worldwide have epilepsy People with epilepsy are stigmatized and excluded Some children with epilepsy are not allowed to go to school Many people with epilepsy suffer in silence, afraid to be found out Epilepsy is life threatening Epilepsy is the most common serious brain disorder Epilepsy is one of oldest disorders known (epileptics seized by the gods or the devil) “The history of epilepsy can be summarised as 4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma”

26 Stigma and Discrimination in Epilepsy
Some cultures still fail to recognize epilepsy as a medical illness Associated with witchcraft, evil spirits, sorcery Violation of human rights Social isolation at work and in school Denial of the right to participate in social activities One reason why maintaining confidentiality and privacy is important is because of stigma. Discussion: ask how epilepsy is viewed in their community. Is it accepted? Is it acknowledged and talked about? DISCUSSION: how is epilepsy viewed in your community?

27 Treatment Gap for Epilepsy
Treatment is simple, inexpensive and effective 7/10 of people can be seizure-free after 2 years of treatment Yet 3 out of 4 of affected people in development countries do not get the treatment they need Emphasize that epilepsy can be treated effectively in primary care. 27

28 Why don’t people get the treatment they need?
Reasons vary in different settings Health system: Epilepsy usually not a priority for policy makers and clinicians Shortage of trained medical and para-medical personnel Lack of health facilities where epilepsy can be treated Lack of access to medications Absence of widespread health insurance Community: Cultural expectations Stigma and discrimination attached to epilepsy Patient’s beliefs Logistics- expense, distance from facilities

29 Responding to Seizures: What you should do?
Stay calm. Loosen and remove any tight clothing. Clear the area of any potential hazards, but do not interfere with their movements. If you can do so safely, turn the person’s body to the side to permit the draining of fluids. Something soft should be placed under the head. Stay with the person. Continue to monitor the person after the seizure. Assist him/her to a quiet comfortable place and allow time to rest Action for the person: If there are warning signs, lie down in safe place to avoid a fall or injury Action for the carers: Make certain the person is in a safe place Move any sharp or dangerous objects in their vicinity If they are near fire or a body of water, move them to a safe area Put the person in the recovery position (image on next slide) Make sure that the person is breathing properly Do not try to restrain or put anything in the person’s mouth Stay with the person until the seizure stops and they wake up Remind the carer that epilepsy is not contagious

30 First action in All Cases: Check ABCs
Airway Breathing Circulation DO NOT leave the person alone Place in recovery position Make sure NOTHING is in the mouth Check with participants if they’ve already had a training on this topic. In most case they will have had this training and this slide can be simply a rapid review. WHO is seeking permission to use and adapt the image.

31 If the person is still unconscious, use the recovery position
Explain, demonstrate and then ask participants to practice how they put a person in a recovery position. A. Kneel on the floor to one side of the person. Place the person’s arm that is nearest you at a right angle to their body, so it is bent at the elbow with the hand pointing upwards. This will keep it out of the way when you roll them over. B. Gently pick up their other hand with your palm against theirs (palm to palm). Now place the back of their hand onto their opposite cheek (for example, against their left cheek if it is their right hand). C. Now use your other arm to reach across to the person’s knee that is furthest from you, and pull it up so that their leg is bent and their foot is flat on the floor. D. Now, with your hand still on the person’s knee, pull their knee towards you so they roll over onto their side, facing you. (request for permission sent) WHO is seeking permission to use and adapt the image.

32 What NOT to do? Do NOT attempt to stop the seizure!
Do NOT restrain the person or try to hold them down in any way! Do NOT give the person anything to eat or drink until s/he has fully recovered consciousness! Do NOT force anything between their teeth or put anything in their mouth!

33 Do not force anything into the mouth during a seizure
This is a picture of boy who was put a spoon during a seizure and chipped one of his front teeth. Stress that nothing should be put into the mouth during a seizure.

34 When to suspect epilepsy
Convulsive movement or seizures During the convulsion: Loss of consciousness or impaired consciousness Stiffness, rigidity Tongue bite, injury, incontinence of urine or faeces After the convulsion: fatigue, drowsiness, sleepiness, confusion, abnormal behaviour, headache, muscle aches, or weakness on one side of the body Two or more recurrent and unprovoked seizures Explain that an important part of the community health workers role in the management of epilepsy is knowing when to suspect it.

35 Knowing when to suspect seizures/epilepsy
Scenario One: As you are leaving the grocery store, you notice a woman standing in line. All of a sudden, says she is having trouble breathing and states her chest is tight. She looks sweaty. You stand with her for a couple minutes until she says she feels normal again. The woman says that during the episode she felt very dizzy, nauseous and sweaty. Scenario Two: You are visiting a family in your community. While talking with the family, a young boy starts shaking rapidly. He becomes stiff and loses consciousness, then starts shaking rapidly. The shaking lasts for about one minute. After waking he is confused and does not know where he is and complains of a headache and that his body hurts. Key Point: To have community health workers practice knowing when to suspect epilepsy. Duration: 10 minutes (5 minutes for discussion in pairs, 5 minutes for large group discussion) Required Materials: Pieces of paper with the following scenarios: Scenario One: (panic attack – not a suspected case) Scenario Two: (seizure - suspected case) Scenario Three: (fainting – not a suspected case) Scenario Four: (seizure - suspected case) Facilitators Note: Divide the participants into groups of two. In pairs, have each person read their scenario. Based on the criteria for epilepsy that we just reviewed, have them decide if this is a case of suspected epilepsy. Note for the facilitator: If they are unsure, help the community health workers understand that the safest option is always to refer the cases or consult with their identified supervisor.

36 Knowing when to suspect seizures/epilepsy
Scenario Three: It is a very hot day. It is mid afternoon and you are in the middle of a community meeting. During the meeting one of the older men slowly falls over onto the ground. You notice he is sweating through his shirt and has been unconscious for one minute. After ensuring that he has good airway, is breathing, and has a good pulse, you ask him some questions about his day. He says that he has not eaten or drank anything yet. Scenario Four: You are at the local health clinic, a man passed urine and is currently unconscious. Those who were there before said he had been shaking for a few minutes. Same as the previous slide.

37 What do you do if you suspect seizures or epilepsy?
What to do? Refer to nearest health facility where there is a doctor or nurse! What if you are unsure? Identify a supervisor who you can ask questions about epilepsy. Remind the participants that they need consent from the person to interview the carer. 37

38 Whom to refer In your community, what types of professionals could you refer those with suspected epilepsy? Some primary health care workers (doctors, nurses) are trained to deliver epilepsy care and services. Psychologists, social workers and counselors may also provide psychosocial support. • Within the formal health care system, the following different types of professionals can assist with the management of epilepsy: Doctors: Assist with diagnosis, treatment and management of epilepsy Nurses: Assist with blood work and check if persons are taking their medications correctly Psychologists: are trained in psychology and usually provide ‘talking’ treatments. Social workers: work in both hospitals and community settings to help with life difficulties faced by people with epilepsy Counsellors: are trained to listen to people talk about their lives, and to help them solve any problems that may be negatively affecting their mental health and well-being. • A primary health care doctor can refer a person to a doctor trained in epilepsy if required, although doctors trained in epilepsy are quite limited in rural areas. mhGAP gives epilepsy training for non-specialist health care providers in the assessment and management of people presenting to health facilities with mental, neurological and substance use disorders. • Who you refer to, depends on the availability of professionals within the formal health system in your area (e.g., you might not be able to refer to a counselor, psychologist or social worker) Adaptation note: Prepare list different types of health workers found at different level are explain their roles. Discussion: Mention that these could be doctors, nurses or community psychiatric nurses. Adaptation Note: If you know the professionals (e.g., doctors or nurses) in your community who the community health workers would refer those with epilepsy or suspected epilepsy, consider inviting them to this part of the training. This will strengthen the relationship between the community health workers and the professionals. It will also allow them to discuss more in depth the process for referring those with suspected epilepsy.

39 When to refer? Refer to a doctor/nurse if the person…
is unsure if they have epilepsy or needs a diagnosis needs to begin treatment requires medication needs assistance with medication monitoring needs more specific information about medications, seizures or epilepsy management needs training on the administration of medications has questions about side effects

40 Knowing when to refer to formal health care
Scenario One: A man in the community has heard you just completed training on epilepsy. He approaches you and shares that he had one episode a couple months ago and is unsure if it was related to epilepsy or not. Scenario Two: You are on a home visit to a young girl who is living with epilepsy in your community. She was diagnosed with epilepsy three months ago and has been taking medication for those three months. During your homevisit, she expresses that she would like more information about the specific type of medication she is on and its specific side effects. She is unsure where to seek support. Scenario Three: You are on a homevisit to an elder in your community. A year ago you referred them to a doctor who diagnosed them with epilepsy, and they began epilepsy treatment. They have been taking their medications regularly, but are still experiencing frequent seizures. They are not sure what to do. Activity: Key Point: Helping community health workers know when, how and who to refer those with epilepsy or suspected epilepsy. Duration: 10 minutes Required Materials: Pieces of paper with the following scenarios: Facilitator’s Note: Divide the participants in groups of three. Have them decide and discuss if the person requires a referral, who they should be referred to and how they should be referred. (It’s depending on role they play in the setting to refer a doctor or a nurse.) Scenario One: (questions about a diagnosis ) A man in the community has heard you just completed training on epilepsy. He approaches you and shares that he had one episode a couple months ago and is unsure if it was related to epilepsy or not. Scenario Two: (needs specific information about medication) You are on a home visit to a young girl who is living with epilepsy in your community. She was diagnosed with epilepsy three months ago and has been taking medication for those three months. During your homevisit, she expresses that she would like more information about the specific type of medication she is on and its specific side effects. She is unsure where to seek support. Scenario Three: (on medication, continues to have seizures) You are on a homevisit to an elder in your community. A year ago you referred them to a doctor who diagnosed them with epilepsy, and they began epilepsy treatment. They have been taking their medications regularly, but are still experiencing frequent seizures. They are not sure what to do.

41 Once You Have Referred Primary Health Care services provide…
Treatment Psychosocial services Structured physical activity program Seizure management techniques Follow-up Individuals with epilepsy can lead meaningful, fulfilling lives. Community health workers play a critical role in offering support so that interventions can be most effective.

42 Section Three: Epilepsy Care Pathway
Goal: To understand the pathway of a person with epilepsy Why understanding the pathway is important? Improving access to management for epilepsy A person with epilepsy, depending on his/her location, level of education and religious and other beliefs, will go through one of two possible pathways. (will go through them after discussion in next slide) Adaptation note: depending upon the most common pathway seen in your setting

43 Why is understanding the pathway important?
DISCUSSION In your setting, if the person has a seizure or suspected to have epilepsy, whom they will consult first ? If seizures continue to occur, what will they do or whom they will consult next? When will they visit the healthcare facility? Discussion: • Understanding the common pathways of management for a person with epilepsy will help you improve access to more effective management • A pathway of management describes the process someone with epilepsy takes to access services Ask the participants to describe and draw the typical pathway in their setting. As an example, you can show the next 2 slides to describe one pathway in a setting.

44 Example: Pathway One 1st seizure occurs
Individual FIRST seeks care through… spiritualist Traditional healer Other informal care providers 2nd, 3rd, 4th, etc.. seizures occur If seizures persist over a longer period of time, care is SECONDLY transferred to… “A person with epilepsy, depending on his/her location, level of education and religious and other beliefs, will go through one of the following pathways: Pathway One: Primary point of care is spiritualists/traditional healers/other informal care providers. Secondary point of care is formal health care setting 1. In the first episode of a seizure, an attempt will be made to manage the condition with some home based remedies which could include garlic, onion, pepper and hot water. 2. Any subsequent attack could lead to a visit to a spiritualist/traditional healer or the local church/mosque for divine intervention. 3. The spiritualist prays over the patient and the healer may provide herbs which are sometime quite potent for the condition 4. The situation would subside and the person will be ‘discharged’ 5. After a number of attacks and revisits the patient may be asked to stay at the home/facility of the spiritualist/healer for ‘spiritual reinforcement’ 6. The likely number of episodes could be about three to six, and with duration of six months to one year, before a decision to move to stay at the camp organized by spiritual healer for ‘comprehensive’ treatment, an equivalent of an admission at the hospital/formal health facility 7. The stay at the camp may be permanent or after some time, say few weeks or months if seizures persist, the healer will tell the patient to now go to the hospital for the ‘physical treatment as the spiritual treatment is now finished’. Usually, the person may by-pass the local health centre and directly reach the psychiatric hospital. Health center Poly - clinic Hospital

45 Individual FIRST seeks care through…
Example: Pathway Two 1st seizure occurs Individual FIRST seeks care through… Health center Poly - clinic Hospital Pathway Two: Primary point of care is health centers/poly-clinics/hospitals After either the first or second episode of a seizure, the patient will visit the nearest health facility – health center, poly-clinic, district hospital or even the psychiatric hospital to seek treatment. Many barriers prevent people with epilepsy from going health center, poly-clinic and hospital. We will discuss those barriers later.

46 Pathway DISCUSSION Describe the typical pathway seen in your setting

47 Activity: Improving Access to management for Epilepsy
If you can prepare materials explain it by using materials. If it is hard to prepare them explain it by the slide. Key Point: Explain the sand in the bag represents those who have not been treated for epilepsy. Duration: 5 – 10 minutes Required Materials: bag, bowl, sand or small pebbles or stones, elastic bands Example: See side photo. Facilitators Note: • Take a plastic bag and put a small hole in the bottom. Fill the bag with sand or small pebbles. The bag should look like a funnel where only a little bit of sand or pebbles can get out. • Explain to the participants that the sand in the bag represents those who have been not been treated for epilepsy. The small amount of sand that is able to get outside of the bag represents those who are receiving management for epilepsy. • Explain that as community workers, we need to increase the amount of sand that is able to get of the bag. Place the bowl underneath the bag and have a scoop. •Ask the community health workers the following: o What are other ways you could get the sand out of the bag or improve access to management? o e.g., scoop sand out from the top, expand the size of the hole

48 Improving Access to Epilepsy management
How can you increase the number of people who receive management for epilepsy? How can you increase the quality of life for people with epilepsy, their carers and their families? How can you help communities understand epilepsy better? Activity Discussion: • How can you increase the number of people who receive management for epilepsy? e.g., Link those with suspected epilepsy to formal health services, advocate for improved services, help those with epilepsy access medications • How can you increase the quality of life for people with epilepsy, their carers and their families? e.g., Provide education about epilepsy, medications, life style and social issues • How can you help communities understand epilepsy better? e.g., Provide trainings or street theatres on epilepsy, educate communities on the facts about epilepsy, assist those with epilepsy to share their stories (where appropriate)

49 Section Four: Support and Follow up
Goal: To be able to provide support on lifestyle and psychosocial case and follow up related to the management of epilepsy Reflection on the needs of those living with epilepsy Support and Follow Up For Those With Epilepsy Medication Home Visits Needs of the Family and Carer (Supplemental) Case Study: Liz

50 Reflection on the needs of those living with epilepsy
Individual reflective exercise: Draw a person who represents someone living with epilepsy on a sheet of paper 2. Why do we need to pay attention to all different types of needs when managing someone with epilepsy? What are some examples of psychological, social, physical, economic or spiritual needs? How can the community health worker help individuals with epilepsy access those needs? DISCUSSION Activity: Key Point: To help community health workers understand the lifestyle and social issues related to those with epilepsy. Duration: 10 minutes Required Materials: Paper, pencils, pens or markers (for each participant) Facilitator’s Note: Explain to participants that this is an individual reflective exercise similar to the one we completed regarding community health workers. Draw a person who represents someone living with epilepsy. Around them write all the needs you can think of that they might have. Consider physical, social, spiritual and psychological needs. Allow each participant five minutes to reflect and write down. Either in small groups of 3-5 or in the large group, have each participant share what they believe are the physical, social, spiritual and psychological needs of those living with epilepsy. Discussion: •Explain effective management of epilepsy requires attention to psychological, social, physical, economic and spiritual needs. •Ask the participants to look at the drawing they just created. What psychological, social, physical, economic or spiritual needs did they write down? •Why does the management of someone with epilepsy require attention to all different types of needs? •What are examples of psychological, social, physical, economic or spiritual needs? Psychological: counselling, reassurance, knowledge about epilepsy Social: community, healthy relationships, self help groups Physical: safe housing, food, water, medications Economic: a job, enrollment in school or vocational training Spiritual: meaning in life, participation in cultural activities

51 Management of Epilepsy
Management of epilepsy includes: Antiepileptic medication Providing information and education about epilepsy Providing psychosocial support Follow-up

52 Support and follow up for those with epilepsy
Community health workers provide 2 types of support to individuals with epilepsy and their families: Practical: provide basic information about epilepsy, help people get to their appointments, offer help around the house. Emotional: listen non-judgmentally, show trust and concern Community health workers can also follow up with them during monthly home visits. Main reasons for follow-up include: Antiepileptic medication and its side effects The importance of treatment adherence Lifestyle and safety issues

53 Common antiepileptic drugs & side effects
Phenobarbital Aggression and hyperactivity (in children), dizziness, rash, loss of balance/coordination Phenytoin Double vision, loss of balance/coordination With prolonged use: thickened gums; in children, longer heads, bulging foreheads, large lips/tongue; excessive hair in women in the face (beard) and chest Carbamazepine Blurry vision, double vision, dizziness, loss of balance/coordination Valproic Acid Tremor, weight gain, hair loss, stomach pain (worse with eating), vomiting, low platelet count (easy bruising, bleeding), liver failure (loss of appetite, confusion, itching) Medication is a very important component in the treatment of epilepsy as the vast majority of seizures can be controlled by antiepileptic drugs. Those with epilepsy must have access to a doctor who can prescribe them their medication. An important role for community health workers is to help those with epilepsy and their families understand the importance of taking their medication and ensuring they have access to that medication. ALL can cause drowsiness, nausea, allergic reaction, bone marrow suppression, and hepatitis If you have questions about side effects, you should refer to a doctor or nurse immediately. 53

54 Medication adherence Is the person taking their medication regularly?
Is the person taking the medication correctly? Is the person experiencing any side effects? Is the person and family keeping a seizure diary? If women are pregnant or would like to get pregnant, ensure they talk to their doctor. Taking medication regularly: -It is important not to stop taking medications abruptly -Explain that many drug treatments take time to act effectively and should be taken even when the person starts to feel better to prevent them from becoming ill again. 2. Taking medication correctly -Make sure they understand the dosage and reason for the drug therapy 3. Side effects -Maintain contact with their primary health care provider in order to monitor possible side effects. **If women are pregnant or would like to get pregnant, ensure they talk to their doctor about anti-epileptic medications as some medications can have possible harmful effects on the fetus. (Basic Needs, India, p. 92)

55 Example of a seizure diary
Ask the person (and carer) to keep a record of seizure history What happened? (description of seizure) When? (Day; time) What medication did the person take? Yesterday Today Emphasize that a seizure diary can be very helpful in managing epilepsy. It is useful because it gives a clear idea about what progress the person is having. Make it clear that the diary does not have to be exactly as displayed; any record will suffice that includes the details of the event. Any record will suffice that includes the details of the event whether the person was taking the medicines regularly what happened when it happened 55

56 Education and Psychosocial Support
Explain what a seizure is and what epilepsy is Be clear that epilepsy is not contagious Discuss the nature of the seizures and the possible causes Make certain they understand that this is a chronic condition. The person will need to be on medication for at least 2 years Explain people with epilepsy can lead normal lives Option for Activity: Role Play If there is time, turn this into a role play activity on how to provide information on epilepsy to the individual and/or their families. The activity can include other elements such as providing follow-up, asking the individual to keep a seizure diary, or anything relating to epilepsy and it’s management. Explain people with epilepsy can lead normal lives; - -They can marry and have children -It is rare for a person with epilepsy to have children with epilepsy -Parents should not remove children with epilepsy from school

57 Safety Risks (lifestyle issues)
People with epilepsy can do most jobs but should avoid Heavy machinery High places Collecting water from open bodies of water People with epilepsy should avoid swimming alone and cooking on open fires You need to discuss how the family can accommodate lifestyle changes, e.g. can someone else do the cooking or observe while the person is cooking? Information about lifestyle changes and safety issues can help those living with epilepsy lead normal lives. Explain the importance of allowing the person with epilepsy to safely remain a contributing member of the family. 57

58 Safety Risks (lifestyle issues)
Possible triggers for seizures include: Excessive alcohol, recreational drugs, sleep deprivation , flashing lights Besides avoiding triggers, individuals with epilepsy can also maintain a healthy lifestyle for the prevention of seizures: Physical activity, maintaining a balanced diet, appropriate stress management National laws related to the issue of driving and epilepsy need to be observed Talk about what the laws are and discuss them with the participants. Adaptation note Find out what the local laws are before you hold the training. 58

59 Home visit Do you already make home visit?
What do you do for home visit? Good home visit? Poor home visit? How could you make a home visit specific to meet the needs of those with epilepsy, their families and their carers? What are important things they would want to notice or ask during one of these home visits? (Supplemental) Discussion: • As community health workers, do you already make home visit? • What makes a good home visit? (e.g., planning the components of the visit before hand, calling the family before, documentation) • What makes a poor home visit? •Based on what we have already reviewed, how could you make a home visit specific to meet the needs of those with epilepsy, their families and their carers? •What are important things they would want to notice or ask during one of these home visits? (e.g., where do they store their medications?)

60 Home visit Benefits: To talk with the person in a place where he/she feels safe and comfortable. To observe how effectively the person is able to do normal activities and jobs. To help the person change his/her environment or behavior to manage symptoms To help the person change his/her environment or behavior to manage symptoms: -If the person has sleep problems you may see that the room is very bright and suggest making it darker -If the person is afraid to leave the house you may work with the person to confront the fear so he/she is eventually able to go outside Functional Assessment: A functional assessment can be a guide to help community health workers assess a persons’ financial security, involvement in work, school or training, family relationships, housing/accommodation, community relations, and self-protection. The functional assessment can be used over multiple home visits to assess areas of improvement or needs that require continued attention. Strengths Assessment: A strengths assessment can be a guide to help community health workers assess current strengths, past resources, goals and establish the steps they need to take to meet those goals. The strength assessment can be used in the following areas: housing, financial and employment, education, training, social or community supports, health, family, leisure and recreation. The strengths assessment can be used during one of the first couple of home visits to help clarify the direction for future home visits.

61 Home visit Benefits: To talk to the family members about the symptoms and behaviors of the affected person. To observe how the family engages with the person, and offer advice about how the family can support the affected person. To engage with the family and help them manage their own stress, and provide them with information about mental disorders. To monitor the progress of the affect person: To monitor the progress of the affect person: -Are the symptoms improving? -Is he/she taking the medication? -Is he/she experiencing any side effects of medication?

62 Home Visit Checklist Additional Considerations:
Home visit should be made monthly for those with epilepsy It can be helpful to create a home visit plan. It can be helpful to create a monthly schedule to plan your home visits It can be helpful to create a home visit plan. (e.g., use the first visit conduct the functional assessment and strengths assessment, use the second visit to address the goals identified in the strengths assessment)

63 Home Visit Checklist 1. Is seizure frequency getting better or worse?
2. Have there been drug specific side effects? 3. Assess treatment adherence 4. Explore safety issues 5. Provide support 6. Inquire about carer and other family members: 7. Any other issues? e.g. problems in the community or family? Tools for Home visit: Home Visit Checklist: A homevisit checklist can guide you during a homevisit with someone who has epilepsy. For an example, see Annex 1. 1.Is seizure frequency getting better or worse? •Are they keeping a seizure diary? 2.Have there been drug specific side effects? • Make sure to check the list of possible side effects • (If you have any questions about whether or not the side effect is dangerous, consult your supervisor or refer them to a doctor or nurse) 3.Assess treatment adherence • Have they taken their medications as directed? If not, why? • Where are they storing their medications? • Are they using a strategy to help them remember to take their medications? (e.g., a calendar) 4. Explore safety issues • Does the person have a safe place to cook? (e.g., not over an open fire) • Does the person have a safe place to clean? (e.g., not in a bath) • Are the floors hard? If so, is the person able to use rugs or something else to soften the floors? • Are there any signs of abuse? (physical, emotional, verbal, sexual) 5. Provide support • Ask how they are feeling • Normalize feelings related to epilepsy: e.g., fear about seizures, loneliness from isolation • Does the person have symptoms of depression or suicidal thoughts that require a link to a doctor or social worker? • Ask if they have any concerns or problems • Be patient and practice good listening skills • Encourage healthy life choices e.g., eating good meals at regular times, getting good sleep, exercise, participating in the community through spiritual or cultural groups, engaging with family and friends 6. Inquire about carer and other family members: • Does the carer understand the important components of epilepsy management? • Does the carer require any links or support? • Does the person have a carer or family members? 7. Any other issues? e.g. problems in the community or family? •Try to understand how the person perceives the problem Ask "What do you think is the cause" Communicate your understanding of what the person says •Find out how the condition has affected the person's life Have there been experiences of discrimination? Is the condition affecting the person's daily life? •Explain what epilepsy is in simple language •Explain that there are medicines to control seizures •Have they received support from any links?

64 Needs of the Family and Carer
Carers of those with epilepsy may be family members, and adults or children What do carers need? Discussion: What do carers need? Carers may also experience stigma and discrimination Carers may not be able to go to work or school due to their care giving responsibilities Carers may spend time and finances on medications or cures from traditional healers and travelling to medical clinics or hospitals Carers may experience stress and anxiety resulting from the responsibilities of care giving If there is time, conduct a role play activity Duration: 15 minutes (10 mins role play, 5 mins debrief-- or however much time permits) Key point: To allow CHWs to practice interaction with the family and providing support for the person with epilepsy and their carers. Ask participants to get into groups of three. Participant 1 will play the role of Dave, the individual with epilepsy. Participant 2 will play the role of Miriam, the individual’s spouse. Participant 3 will play the role of the community health worker. Information for Dave: You have started taking medication for epilepsy. You are experiencing some side effects from the medication, mostly restlessness and hyperactivity. You are avoiding leaving the house because you are afraid you will have a seizure and people will judge you. Information for the person playing Miriam: You want to support Dave, but you are not sure how. You are feeling frustrated because you can’t ease his stress. You work full-time to support you and Dave, and are started to feel overwhelmed and helpless. Information for the community health worker: Some things to consider when interacting with Dave: How has he been feeling since he began medication? What kind of things has he been doing to make himself feel better? Is he seeking psychological support from someone within or outside of his community? Provide information about side effects of the medication Encourage him to live a healthy lifestyle and to engage in social activities Some things to consider when interacting with Miriam: How is she doing? Does she feel like she can support Dave? Provide practical and emotional support. Encourage her to live a healthy lifestyle.

65 (Supplemental) Case Study: Liz
Discussion: At the beginning of the story, what made life difficult for Liz? What helped Liz with those difficulties? How did those things improve quality of life for Liz? What sorts of difficulties does Liz still have? How could a community health worker help Liz with those difficulties? Note for the facilitator: • Tell the story, then discuss the questions Adaptation Note: If a service user is available to participate in the trainings, consider having a service user share their story instead of using the case study. Case Study: Liz Liz is seventeen years old. She lives with her parents at a small farming community. The community is poor, their nutritional status low and their sanitation facilities vastly inadequate. Life in the community is hard. When Liz was ten years old she got epilepsy. Poor access to medication coupled with the social stigma attached to her condition has made Liz a social outcaste. Liz’s neighbors have warned their children against associating with her and some people even run away when they see her in the street. They say her sickness is communicable. At school, her classmates won’t allow her to sit with them; they will not lend her any of their things. They won’t share their food with her. At first her family spent much of their time in the regional hospital because access to medication was inadequate for Liz’s frequent and unpredictable seizures. Liz was eventually referred to the Psychiatric Unit of the hospital where she was diagnosed with epilepsy. Her diagnosis and subsequent treatment led to improvement in her physical condition. Medical support has increased her self-confidence and her neighbors’ attitudes are dramatically changed. There are still difficulties in Liz’s life. Liz’s family has to pay a lot of money for school fees and the drugs that maintain her seizure-free condition. Some classmates continue to avoid her. Discussion Questions: • At the beginning of the story, what made life difficult for Liz? e.g., social stigma, poor access to medication, trouble making friends at school and misconceptions about epilepsy in the community • What helped Liz with those difficulties? e.g., treatment, access to medications, visits from a community psych nurse, actively challenging stigma and discrimination • How did those things improve quality of life for Liz? e.g., increased self confidence and changed community perceptions, improved treatment from others in his community, dreams for the future • What sorts of difficulties does Liz still have? e.g., access to medication, learning English, relationships at school, poor english • How could a community health worker help Liz with those difficulties? e.g., speaking to the teacher at Lizs school, assisting with access to medications Adaptation Note: If a service user is sharing their story in place of the case study, create appropriate discussion questions with the service user before the training.

66 Section Five: Linking with Resources and Advocacy
Goals: To be able to link with formal and informal resources; To be able to advocate in the community for improving epilepsy care Community Mapping Linking to formal and informal resources Linking Making Effective Links Barriers to Linking Overcoming Barriers to Links Advocate for Improving Epilepsy Care Advocating in the Community Promoting Inclusion (Supplemental) Case Study: Tom’s Story

67 Community Mapping Think about the places, groups or people in your community that could help meet those needs. Draw all the places, groups or people on a piece of paper. (Supplemental) Activity: Duration: 10 minutes Key Point: Identifying the formal and informal resources that can help meet the needs of persons with epilepsy in a community. Required Materials: sheets of paper, markers, papers or pens Facilitators Note: Divide the participants into small groups of three to five. Based on the previously discussed needs of those with epilepsy and their families, ask each group to think about the places, groups or people in their community that could help meet those needs. Ask participants to draw all the places, groups or people on a piece of paper. Example: government office, police station, self help group, school, micro-finance organization, place of worship, library. Note: Community resource mapping is another tool community health workers can use during their home visits to help those with epilepsy and their families recognize the support available to them in their community.

68 Linking to formal and informal resources
Linking requires the following considerations: who, what and how? Consider who requires a link (Other) Family Members Carer Person with Epilepsy Consider who requires a link, •When you are working with an individual who has epilepsy, their carers and their family members, you will learn about who requires links. •The person with epilepsy, the carer or (other) family members might require links. •The impact of epilepsy on family members and carers may mean they require additional support from links.

69 Linking to formal and informal resources
Consider what type of link would be helpful Government Services and Entitlements Non-Government Organizations Informal Community Supports Service Users Family and Friends Education and Employment Specialist and Non-specialist Health Services Consider what type of link would be helpful, •Specialist and Non-Specialist Health Services: e.g., Psychologists, Social Workers, Doctors, Nurses •Service Users: e.g., Groups or individuals living with the same condition, have family members with the same condition or is caring for someone with the same condition Consider if there a place were they could connect with peers who are also living with the same conditions, e.g., a group or another individual in the community? Consider if there is someone who could provide support? •Family and Friends: Consider if they need assistance reconnecting with family and friends due to stigma or separation? •Education and Employment: e.g., schools, educational or vocational training programs Consider if they have been previously employed or in school? •Non-Government Organizations: e.g., legal aid, mental health programs or assistance with basic needs Consider if they need assistance with meeting basic needs? •Government Services: e.g., child welfare or protection services, public justice system, social welfare (ID, land titles, work programs, or cards for food discounts) Consider if there are abuses occurring that require assistance from child protection or the public justice system? Consider if they are entitled to any government benefits? •You may not have time to connect the person to all necessary links but you can use the knowledge gathered during your strengths assessments, home visit or other interactions to identify one or two links that could be helpful •If you completed a strengths assessment, consider what link connects with the information gathered during the assessment. For example, Did they identify previous or existing personal and social resources? Did they identify previous or existing vocational skills or educational experience? Did they establish previous or existing leisure or recreational activities? Were you able to identify and involve supportive family members – are there supportive people who are no longer in their life that you need to contact? Were you able to identify self-help and family support groups? •Connecting people with the rights links can help them meet their and promote their recovery (e.g., it can help them meet the goals established in the strengths assessment)

70 Linking Create lists of the possible links that exist in your community. Activity: Key Point: To help community health workers identify the formal and informal resources for those living with epilepsy, their families and their carers in their communities. To create a List of Resources and Entitlements that they can reference during their work. Duration: 20 minutes (10 minutes for working in small groups, 10 minutes for sharing with the large group) Required Materials: Chart paper (for each group), markers (for each group), tape, information from situation analysis (if possible) Facilitators Note: •Divide into small groups. •For each circle, create lists of the possible links that exist in your community. •If time allows, have each small group share their ideas with the larger group. Encourage discussion. Adaptation Note: If the community health workers training is conducted where an mhGAP situation analysis occurred, use information gathered during the situation analysis to start creating the List of Resources and Entitlements.

71 Making Effective Links
Consider how to make the link effective: The goal of linking is that the person acquires support and service through the link. -The process of connecting with links should empower the person. -Even if you connect or suggest a link, barriers can keep people from accessing the resource. -Barriers can also keep the resource from providing support to the person.

72 Barriers to Linking What might keep the person from accessing the resource? What could help the person connect with the resource? Discussion: Duration: 5 minutes Ask participants to brainstorm and write down on the flipchart. Health providers can help raise awareness. Emphasize to the participants that they have a unique role as they can treat epilepsy. •What might keep the person from accessing the resource? e.g., stigma, discrimination, transporation, misconceptions, access, motivation, fear, time, support, coping level •What could help the person connect with the resource? e.g., making a phone call to make an appointment, writing a note, connecting them to a staff member/community health worker escort, working with family members/carers

73 Overcoming Barriers to Links
Process of overcoming barriers can be empowering for the person and give them confidence to connect with other links in the future. Consider what link could lead to the most change for the person. In regards to the person In regards to the resource Links constantly change, it is important to identify people and organizations in your community •How you link is important because the process of overcoming barriers can be empowering for the person and give them confidence to connect with other links in the future. For example, consider how you felt during a time where you had difficulty accessing something. It can feel discouraging, scary or overwhelming. In contrast, consider a time where you were able to access something successfully. It can increase confidence, self-esteem, and feelings of happiness. •Consider what link could lead to the most change for the person. Even making one successful link could decrease stigma, increase social support, decrease isolation or promote further recovery for the person. •In regards to the person, If they accessed a particular resource that was helpful in the past, explore what is keeping them from accessing that link now and explore potential solutions. Explore misconceptions or questions regarding the resource. For example, just like medications, there may be misconceptions about resources or programs like substance use treatment programs, support groups or counselling. •In regards to the resource, Barriers might keep the resource from providing support to the person e.g., lack of funding, not enough staff, the person does not meet the eligibility requirements, corruption, or stigma •During follow up, ask about the link. This will help you know if you need to link them to another resource and if you should suggest the same resource in the future. •Links constantly change, it is important to identify people and organizations in your community who know the information about the resources or links. •Ask participants to list who they could contact to gather further information. Adaption Note •The identified contact person and contact organization can be added to the List of Resources and Entitlements.

74 Advocate for Improving Epilepsy Care
Variety of tools to improve support in their communities : Field consultations and community meetings Advocacy trainings Street theatre Public dialogues Promoting education and raising awareness Facilitating self-help groups -Advocacy trainings: Teaching those with epilepsy, their carers and families how to advocate for their rights and access services they are entitled to. -Public dialogues: Held in public areas like markets, places of worship or educational centers, public dialogues allow communities to discuss particular issues. These can be a place for those with epilepsy or their carers to share their experiences “Community health workers provide a crucial bridge between people with mental disorders and the wider community, exploding myths and breaking down barriers leading to better acceptance and understanding.” (Mental Health and Development, p. 65)

75 Advocating in the Community
Create a list of all the things you could do to advocate for health needs related to epilepsy in your community? Of the list you created, identify the top three that would be the most likely you could do and would create the most change. Discussion: • As community health workers, create a list of all the things you could do to advocate for health needs related to epilepsy in your community? e.g., organize a meeting, arrange a training, create a fact sheet, write an article for your local paper, suggest epilepsy as a topic for their meetings

76 Promoting Inclusion in the community
Community health workers play an important role in reintegrating individuals with epilepsy and helping them access community resources. Develop strategies to work with the community in order to promote inclusion of those with epilepsy, their families, and their carers. Including: Working with local leaders Helping to find jobs and educational opportunities Helping those with epilepsy share their stories with the community What we discussed previously in regards to community resources, Barriers might keep the resource from providing support to the person. e.g., lack of funding, not enough staff, the person does not meet the eligibility requirements, corruption, or stigma Consider what would it take to improve the ability of that organization to provide services effectively? e.g, an evening training on epilepsy? a meeting with their leader? is an organization/advocate already helping clients access this service that you could refer them to? Strategies for promoting the inclusion of those with epilepsy, their families, and their carers in the community include: Providing Education Linking with resources Working with community and religious leaders, local administrative staff, leaders, teachers, criminal justice system, traditional healers Helping those with epilepsy share their stories

77 Promoting Inclusion What is relationship with traditional healers?
What is relationship with teachers? When working with traditional healers, consider the following: -Alternative, religious and traditional health care providers can also provide care and support for people with epilepsy. -However, it is also important to recognize that some local beliefs regarding epilepsy, may delay early recognition of illness, and prevent appropriate treatment and follow-up. -It is best if a person with epilepsy can receive treatment from a local doctor who has knowledge about epilepsy and experience caring for affected people. When working with teachers, consider the following: -You may need to contact the school if the teachers are unwilling to take a child with epilepsy. Consider writing a letter to the school or even going there to speak to the teachers. Provide the teachers with important information Provide the same details to the family Provide the teachers a basic training in how to manage a child who is having a seizure.

78 (Supplemental) Case Study: Tom’s Story
How did the community’s misunderstandings about epilepsy affect Tom? Why is she a good person to educate others about epilepsy? How is his work on educating the community beneficial to both his and the community? Adaptation Note: If the carer of a service user is available, consider using them to share their story in the training. If using the carer of a service user instead, prepare appropriate questions before the training. Tom was 12 years old when she first started suffering from epilepsy. His violent and unpredictable seizures forced him to drop out of school and confined him to his house. Tom’s family brought him to many of local healers throughout the years but nobody was able to help. While people suffering from epilepsy certainly are not cursed, the exact causes of the condition are not totally understood. A few years ago Tom finally heard about the health promoter network in the area, and visited a clinic. She started taking carbamazepine, which helped him stop having seizures. After that, she started coming to training workshops. As soon as the second workshop a few weeks later, Tom was able to walk to the meeting from his village, something she had not done in years. Now, she has lived seizure-free for four years. She is a health promoter in his village and helps other people who have this same disease in his community. Tom spends his days bringing medicine to people once like him, while also working to educate people in the region about the disease. Discussion: Lead a discussion on the following, How did the community’s misunderstandings about epilepsy affect Tom? Why is Tom a good person to educate others about epilepsy? How is Tom’s work on educating the community beneficial to both him and the community?

79 Section Six: Your Well-Being
Goal: To be able to create strategies to maintain your own well-being The Need for Strategies to Maintain Your Own Well-being Reflection on strategies for maintaining well-being

80 The Need for Strategies to Maintain Your Own Well-being
Community health work is difficult and will influence your well-being. It is important to create strategies that minimize negative influences. 1. Identify negative influences and minimize them 2. Identify positive influences and maintain/maximize them Negative Influence e.g. feeling overwhelmed by existing needs, difficulty concentrating • Community health workers should understand that doing community health care work is difficult and will influence them physically, emotionally, socially, cognitively and spiritually. • Some may be negative (e.g., feeling overwhelmed by the needs that exist, difficulty concentrating). • It is important to create strategies to minimize the negative influences. If you are experiencing poor well-being, seek support from your supervisor or doctor. Positive Influence e.g. stronger connection with the community, increased compassion

81 Reflection on strategies for maintaining well-being
What can be the challenges of being a community health worker? In your community? In your family? How do you balance your work and family responsibilities? What strategies can use you to maintain your mental health? (Supplemental) Activity: Key Point: To help participants understand the importance of maintaining their well-being and create related strategies Duration: 10 minutes Note for the Facilitator: Ask the participants to refer back to the community health worker they drew previously. Ask them to reflect again on the values, knowledge and skills required to be a community health worker related to their own well-being. Lead a discussion on the importance of maintaining your own well-being by asking the following questions: • What can be the challenges of being a community health worker? In your community? In your family? • How do you balance your work and family responsibilities? • What strategies can use you to maintain your mental health?

82 The Need for Strategies to Maintain Your Own Well-being
Some of the negative influences on your well-being could include: Difficulty sleeping or concentrating Feeling irritable or inpatient Feeling aches or pains Abnormal use of alcohol or other substances Difficulty relaxing or having fun

83 Strategies to Maintain Your Own Well-being: Healthy Work Habits
Recommendations to maintain healthy work habits: Acknowledge even the small ways in which you have helped others Be kind to yourself. Remember that you are not responsible for solving all of people’s problems. Accept what you did well, what did not go well, and the limits of what you could do given the circumstances. Seek supervision from your supervisor or primary health care providers Try to keep reasonable working hours and take breaks Find support from other community health workers. Check in with them, and have them check in with you Strategies you can use to maintain your well-being could include: Ensuring you take breaks even if things are busy Get enough sleep, exercise and nutritious food Taking time to do the things you enjoy (e.g., sports, listening to music, watching videos) Sharing how you are feeling with others (e.g., family, friends and other co-workers) Regularly seeking supervision Remember, maintaining your own well-being will enable you to work as a community health worker for a longer period of time.

84 Strategies to Maintain Your Own Well-being: Healthy Life Habits
Recommendations to maintain Healthy Life Habits Take time to eat, rest and relax, even for short periods. Try to eat healthfully and exercise. Try to minimize your intake of alcohol, caffeine and nicotine. Talk with friends and people you trust for support. Take time to do the things you enjoy (e.g., sports, listening to music, watching videos)

85 Summary and Evaluation
Three significant things you learned Two specific actions you will do as a community health worker to improve the management of epilepsy One question you still have about epilepsy What was most helpful about the training? How could the training be improved? Activity: Training Reflection and Evaluation (15 minutes) Key Point: To provide community health workers with an opportunity to reflect on what they learned during the training. Duration: 15 minutes (5 minutes for reflection and 10 minutes for large group discussion) Required Materials: paper, pens and pencils (for each participant) Facilitators Note: Ask community health workers to reflect on what they learned about epilepsy, its management through the training module. Ask participants to consider the following: • Three significant things you learned • Two specific actions you will do as a community health worker to improve the management of epilepsy • One question you still have about epilepsy • What was most helpful about the training? • How could the training be improved?

86 Key messages about Epilepsy
Epilepsy is not inherited or contagious Epilepsy can be treated effectively with anti-epileptic drugs Adherence to treatment and regular follow up are critical The person and the family need education and support People with epilepsy can lead normal, meaningful lives Children with epilepsy can go to a normal school 86

87 Key messages about Community Health Workers
Community health workers play an important role in suspecting, referring and following up with individuals with epilepsy Community health workers can advocate for individuals with epilepsy to reduce stigma and discrimination, and to promote inclusion in the community Community health work can be challenging and emotionally exhausting, and it is important to take action to maintain your own well-being 87