1

Epilepsy Training Coursefor Community Health Workers

Version 14 Dec 2012

2

Preparation

• Icebreaker - introductions to each other (Name, profession, current posting, interest in and experience of epilepsy)

• Background of the training• Schedule

3

Schedule

Put the schedule table here. For example,time Name of the facilitator/s

Registration

IcebreakerLearning 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

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 epilepsy6. 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

4

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

5

Play the video

6

mhGAP conditions

1. Depression2. Psychosis3. Bipolar disorder4. Epilepsy5. Developmental disorders6. Behavioral disorders7. Dementia8. Alcohol use and alcohol use disorders9. Drug use and drug use disorders10. Self-harm/suicide11. Other significant emotional or medically unexplained complaints

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

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?

9

Community Health Worker’s Role

• Suspecting• Referring• Follow up• Psychosocial support• Linking

10

Community Health Worker’s Role

• 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

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.

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

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

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

15

Using good communication skills

• 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

DISCUSSION

16

Using good communication skills

1. Pair up with another person. One person is "A" and the other person is "B"

2. A describes a problem and B listens carefully for 2 minutes

3. Now repeat the problem but this time B shows little interest

4. Now switch roles. B will describe a problem to A and repeat both steps 2 and 3

17

Afterwards…

• 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?

DISCUSSION

18

Section Two: Seizures and Epilepsy

Goal:

To understand and be able to recognize seizures and epilepsy, and to be knowledgeable about

seizure management

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?

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• FALSE

• Seizures are abnormal electrical activity from neurons• TRUE

• People with epilepsy should be restrained• FALSE

• Children of people with epilepsy will develop epilepsy as well• FALSE

• With antiepileptic medicines 70% can be seizure-free when treated • TRUE

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

22

Typical example of seizure

Play 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)

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

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

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

TREATMENT GAP

Not treatedTreated

28

Why don’t people get the treatment they need?

Reasons vary in different settingsHealth 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

30

First action in All Cases: Check ABCs

1. Airway2. Breathing3. Circulation

• DO NOT leave the person alone

• Place in recovery position

• Make sure NOTHING is in the mouth

31

If the person is still unconscious, use the recovery position

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!

Do not force anything into the mouth during a seizure

34

When to suspect epilepsy

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

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.

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.

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.

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.

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.

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

43

Why is understanding the pathway important?

• 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

44

Example: Pathway One

1st seizure occursIndividual FIRST seeks care through…

spiritualist Traditionalhealer

Other informal care providers

2nd, 3rd, 4th, etc.. seizures occurIf seizures persist over a longer period of time, care is SECONDLY transferred to…

Health center Poly - clinic Hospital

45

Example: Pathway Two

1st seizure occursIndividual FIRST seeks care through…

Health center Poly - clinic Hospital

46

Pathway

• Describe the typical pathway seen in your setting

DISCUSSION

47

Activity: Improving Access to management for Epilepsy

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?

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

50

Reflection on the needs of those living with epilepsy

1. 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

51

Management of Epilepsy

• Management of epilepsy includes:

1. Antiepileptic medication2. Providing information and education about epilepsy3. Providing psychosocial support4. 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:

1. Practical: provide basic information about epilepsy, help people get to their appointments, offer help around the house.

2. 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

Drugs Side effectsPhenobarbital Aggression and hyperactivity (in children), dizziness, rash,

loss of balance/coordination

Phenytoin Double vision, loss of balance/coordinationWith 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)

ALL can cause drowsiness, nausea, allergic reaction, bone marrow suppression, and hepatitisIf you have questions about side effects, you should refer to a doctor or nurse immediately.

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.

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

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

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?

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

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?

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

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:

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

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 issues5. Provide support 6. Inquire about carer and other family members: 7. Any other issues? e.g. problems in the community or family?

64

Needs of the Family and Carer

• Carers of those with epilepsy may be family members, and adults or children

• What do carers need?

65

(Supplemental) Case Study: Liz

• 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?

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

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.

68

Linking to formal and informal resources

• Linking requires the following considerations: who, what and how?

• Consider who requires a link

(Other) Family MembersCarer

Person with Epilepsy

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

70

Linking

• Create lists of the possible links that exist in your community.

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.

72

Barriers to Linking

• What might keep the person from accessing the resource?

• What could help the person connect with the resource?

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

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

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.

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

77

Promoting Inclusion

• What is relationship with traditional healers?

• What is relationship with teachers?

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?

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

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

Positive Influencee.g. stronger connection with the community, increased

compassion

Negative Influencee.g. feeling overwhelmed by existing

needs, difficulty concentrating

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?

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

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?

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

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