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| Modules | Description | Items | Points to mention for full delivery |
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| (I) Orientation & behaviour change optimisation | Rules regarding confidentiality, quiz about common epilepsy myths, expectations and self-affirmation exercise completed | (1) Welcome | Facilitator welcomes group |
| (2) Goals of this course | Facilitator outlines them |
| (3) What would you like from today? | Facilitator provides opportunity for participants to share their expectations of course |
| (4) True or false? | Presents 3 quiz questions to the group (any order is okay) |
| (5) Taking on information (kindness questionnaire) | Participants asked to do a questionnaire |
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| (II) Basic epilepsy & first aid knowledge | Professional video narrated by neurologist showing seizure types and applicable first aid; subgroups work to find answers to different questions concerning seizure first aid from selection of cards and present these. Designed to elicit participant beliefs and fears and for these to be discussed. Simple guidance given about when to call ambulance and management of postictal states and injuries | (1) Epilepsy, seizures, & how the brain works | Facilitator plays video |
| (2) First aid for convulsive seizures exercise | Participants are asked to do the exercise relating to this topic |
| (3) What can you do to help someone during a seizure? | Mention, in any order, all the following:
(i) Look around—make sure it is safe
(ii) Stay calm & stay with them
(iii) Allow seizure to happen
(iv) Check the time—if shaking does not stop after 5 minutes, dial 999
(v) Protect head
(vi) Loosen any tight clothing around the neck
(vii) Look for an epilepsy ID
(viii) Stop people crowding |
| (4) What not to do during a seizure | Mention, in any order, all the following. Do not
(i) Hold them down
(ii) Put something in the mouth
(iii) Move them (unless dangerous)
(iv) Give something to eat or drink
(v) Try to bring them around |
| (5) What to do after the seizure has stopped | Mention, in any order, all the following:
(i) Check breathing
(ii) Put in recovery position
(iii) Minimise embarrassment
(iv) Stay calm & stay with them
(v) Look for injuries
(vi) Make note of what happened
(vii) Person will not usually need to go to the hospital |
| (6) Questions or comments? | Facilitator provides opportunity for questions |
| (7) Postseizure states | Mention, in any order, all the following:
(i) Postictal state is a medical term for the recovery period immediately after a seizure
(ii) Gives examples of some symptoms during this period (e.g., changes in awareness, senses, emotional, thoughts, and physical)
(iii) Highlights if in doubt about what to do or if normal, seek medical assistance |
| (8) Injuries | Mention, in any order, all the following:
(i) Acknowledges possibility of injuries
(ii) Directs participants to other resources for guidance on management |
| (9) When to call an ambulance? | Acknowledges appropriateness to seek medical attention in all the following circumstances (any order is okay):
(i) When shaking/seizure lasts more than 5 mins (may be referred to as “status epilepticus”)
(ii) When one seizure follows another with no recovery (may be referred to as “cluster seizures”)
(iii) If someone has difficulty breathing once shaking stopped
(iv) If badly injured themselves
(v) If seizure happened in water
(vi) If it is their first ever seizure
(vii) If you believe they need medical help |
| (10) Questions or comments? | Facilitator provides opportunity for questions |
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| (III) Recovery position | Professionally produced video and step-by-step slides of recovery position. Participants then work in pairs to practice recovery position with feedback from the facilitator | (1) Recovery position | Facilitator notes if a person is unconscious or asleep but breathing after a seizure, and it is not thought that the person has damaged neck or back, then they should be placed in recovery position |
| (2) Recovery position | Facilitator plays video |
| (3) Let us practice the recovery position | Recovery position practiced by at least one participant (the participant might take on role of playing the patient or the person putting the person in the recovery position) |
| (4) Questions or comments? | Facilitator provides opportunity for questions |
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| (IV) Informing others about epilepsy & how to help if seizures occur | Facilitated discussion about the different groups of people who might be of assistance when a seizure occurs, what information they need to know, how to help, and how to get this information to them (for example, you need to know how to help and how to get this information to these different groups) | (1) Who needs to know how to help? | Group asked to think about people around the patient that might need to be able to help if a seizure occurs; some examples given (e.g., family, friends, colleagues, public, and health professionals) by facilitator or participants |
| (2) What they need to know & why | Mention, in any order, all the following:
(i) That you have epilepsy
(ii) What sort of seizures are normal for you
(iii) What to do & not to do
(iv) How you want to be helped (e.g., any preferences you have) |
| (3) How to get this information to them. Family, friends & work colleagues | Facilitator invites suggestions from group or presents some possibilities (e.g., sharing information from course, encourage them to visit online resources, and download “how to help app”) |
| (4) How to get this information to them. Members of the public and health workers | Facilitator invites suggestions from group or presents some possibilities (e.g., carrying epilepsy ID, such as an “I have epilepsy” card, putting information on mobile phone emergency information sections, and medical jewellery) |
| (5) Questions or comments? | Facilitator provides opportunity for questions |
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| (V) Medical ID, seizure triggers & home safety | Participants presented with 2 illustrated patient case stories. They are asked to consider what the patient in the story might have done to have achieved a more favourable outcome | (1) Personal stories—introduction | Facilitator introduces section (e.g., “we are now going to look at some personal stories…”) |
| (2) Ben’s story | Facilitator reads case story to group |
| (3) How to change what happened to Ben? | Facilitator asks group for suggestions about how to change the outcome in Ben’s story. Facilitator or participants mention, in any order, all the following:
(i) The carrying of medical identification (ID)
(ii) Paying attention to one’s triggers for seizures
(iii) Declining transportation to the hospital |
| (4) Triggers | Gives examples of triggers |
| (5) Knowing your triggers | Discuss importance of knowing one’s triggers |
| (6) Some ways of dealing with triggers | Gives some suggestions about how to identify and manage triggers |
| (7) Sandra’s story | Facilitator reads case story to group |
| (8) How to change what happened to Sandra (warning signs; home safety) | Facilitator asks group for suggestions about how to change the outcome in Sandra’s story. All the following should be mentioned (in any order):
(i) Warning signs (aura)
(ii) Home safety |
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| (VI) Summary and consolidating learning | Key take-away messages from intervention for different participant categories outlined; directed to additional sources of information and provided with online access to course materials | (1) Main points to remember, if you have epilepsy: | Mention, in any order, all the following:
(i) Epilepsy is common
(ii) Whilst frightening, most seizures are short and stop by themselves
(iii) Will not usually need emergency medical attention
(iv) You can tell those around you how they can help
(v) Tell friends and family how to deal safely with seizures
(vi) Carry medical ID
(vii) You may be able to reduce seizures and injury
(viii) Think about things you could do differently |
| (2) Main points to remember, if you know someone with epilepsy: | Mention, in any order, all the following:
(i) Seizures can be upsetting but try to stay calm
(ii) You have power to help
(iii) Person is usually not in pain and will not remember
(iv) Most seizures are short and will stop by themselves
(v) Do not restrain the person or put anything in the mouth
(vi) Usually the person will not need medical help, just reassuring and putting in the recovery position
(vii) Time the seizure, if shaking lasts longer than 5 minutes, one seizure follows another, or the person has badly injured themselves call for an ambulance |
| (3) Sources of further information | Facilitator notes information available from elsewhere (facilitator gives examples such as Epilepsy Society, Epilepsy Action, and NHS Choices) |
| (4) What is on the back table and accessing the study website | Facilitator notes:
(i) Additional information for participants to take away on table
(ii) Directs participants to website containing the course materials |
| (5) Questions or comments? | Facilitator provides opportunity for participants to ask questions or make comments (this might be in the manner of how well did this course meet your expectations of what you wanted it from it) |
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