Referring to the scientific paper mentioned in the previous blog post, the authors, who are affiliated with Indiana University Bloomington, make recommendations on the requirements for future technologies based on their findings. These recommendations can be briefly summarized in the following categories:

• Ad Hoc First Aid Care Collaboration with the Public
• Semi-Ad Hoc Care Collaboration During Transportation
• Prior Education for Secondary Caregivers at Workplace/School

Seizure First Aid Care Framework

In addition, a comprehensive framework for seizure first aid is recommended. This framework would help identify potential design opportunities, taking into account the unique challenges associated with different locations.

Potentials

As shown in the framework, the authors state that there is great value in sharing information about first aid in all places other than the home (where the environment is most familiar and primary caregivers are most present).

Innovative solutions: A holistic approach

The authors emphasize the importance of a holistic perspective when designing technologies for seizure management. Future technologies should take into account the attribution of epilepsy stigma, such as the visibility of seizures and cultural perceptions, as well as the different symptoms of epilepsy, since people with chronic diseases often experience different individual and social challenges depending on the severity of their symptoms.

To address these challenges, the authors suggest several innovative approaches:

Ad Hoc First Aid Care Collaboration with the Public

The Public Area is the most challenging place to keep people with epilepsy (PWE) safe. These places illustrate the lowest controllability in case of an emergency, because of the high likelihood of lacking knowledge in seizure care among surrounding bystanders. Little research has been done on ad hoc information sharing in CSCW and HCI.

Participants in the research stated that existing apps for epilepsy emergencies were not useful in their experience. However, apps that alert trained CPR volunteers nearby could be a solution for seizure emergencies as well. There is potential to adapt this concept to this chronic disease.

Future systems should be designed with a simple user interface that does not require much effort to search for information and makes it more visible. It might be possible to display emergency-related information on lock screens when a smartphone detects a seizure. Bystanders could follow instructions if their attention is clearly drawn to the device through visual and auditory feedback, or even a conversational interface. Medical ID bracelets or necklaces already provide basic health information via QR or NFC, which are more visible than a smartphone in a pocket.

Semi-Ad Hoc Care Collaboration during Transportation

The authors present the idea of developing an automated information system in public transportation when a PWE enters a vehicle. The public announcement system could inform passengers and drivers of the presence of a PWE and provide basic emergency-related information. This would avoid the embarrassment of PWEs asking strangers to look for them and allow them to remain anonymous.

To avoid attracting too much attention or revealing the identity of the PWE when there are few passengers, information systems on trains, subways, or buses could also routinely inform passengers without technically recognizing a PWE boarding public transportation. Therefore, a public announcement system should consider different contexts (situations and social aspects).

Regarding private transportation, the authors emphasize the idea of a smart car that does not require active driving or AI-based seizure detection and automatically switches to self-driving mode. In case of an emergency, the car could send a notification to surrounding drivers, police or hospitals.

Prior Education for Secondary Caregivers at Workplace/School

For workplaces or educational institutions, providing information about seizure care in advance is crucial and easier than in the other places mentioned, because PWEs are there on a regular basis and potential secondary caregivers can learn over a period of time. Pre-education should be simple and easy to understand and could take place at both individual and organizational levels. At the organizational level, a school or company should adopt a culture of health and inclusion, as well as policies that encourage people to learn about epilepsy and first aid.

Smart buildings based on AI could also reduce the risk of seizures by automatically adjusting potential triggers, such as light or smell, and notifying people in the building in the event of an emergency.

Next Steps

To find out which area of the seizure first aid framework I want to focus on, it seems appropriate to conduct a divergent research on existing solutions, in addition to the examples already mentioned in the scientific paper. In this way, it will be possible to see how the pain points and challenges mentioned are currently being addressed.

Resources

Aehong Min, Wendy Miller, Luis M. Rocha, Katy Börner, Rion Brattig Correia, and Patrick C. Shih. 2021. Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 113 (April 2021), 24 pages. https: //doi.org/10.1145/3449187

While researching possible pain points experienced by people with epilepsy and those around them, I came across a scientific article published in 2021 in ACM Journals by the Association for Computing Machinery, New York. This article is about the challenges of sharing information with first responders to support people at the moment of seizure onset.

For this purpose researchers related to the Indiana University Bloomington, USA, have conducted 3 focus groups of 11 people as well as 10 follow-up questionnaires, addressing persons with epilepsy (PWEs) and their caregivers. In the present article the authors reported their findings.

Categorization

The researchers identified three groups of caregivers who possibly are involved, when first aid for epilepsy is needed:

• Primary caregivers: Persons who take full responsibility of a PWE, as they are their family, relatives or friends. They are able to properly manage seizures and communicate about a PWEs condition.
• Secondary caregivers: Persons who know a PWE, are available on occasion to act in case of emergency. They have less knowledge about the condition of PWEs and less responsibilities for them.
• The public: Every person who is a bystander around PWEs in public areas, but who are not their caregivers. They have no knowledge about epilepsy, do not know PWEs and have no responsibilities of taking care.

In addition, a categorization of four locations where PWEs have experienced seizures in the past was developed. These places are associated with different levels of comfort zones: Comfort zones, semi-comfort zones and no comfort zone.

• Home: A place where a PWEs lives and has a primary caregiver around them. Home is a comfort zone.
• Workplace / school: Places which a PWE routinely visits in his / her daily life. There can be secondary caregivers present, who are aware about a PWE’s condition. These places can be semi-comfort zones.
• Public areas: Places which a PWE visits irregularly, such as supermarkets or public parks. Usually these places are uncomfortable for PWEs, as it is more likely to be without caregivers and to be surrounded by strangers, who are not able to provide appropriate first aid.
• Transportation: PWEs who travel may or may not feel comfortable. When they are on their own, they have to trust to receive appropriate help from surrounding people in an emergency case. When they travel with primary or secondary caregivers, there are fewer or even no worries.

Findings

As a result of the evaluation, the researchers identified the following findings. The findings were considered with the previous four locations home, workplace / school, public areas and transportation.

Home

Unsurprisingly PWEs have relatively fewer worries, when they have a seizure at home, where certainty is at its highest. PWEs are more likely to manage epilepsy in environments which are more controlled and familiar.

Public areas

A lack of public awareness:

• When PWEs have seizures, the bystanders around them often do not know how to provide proper help.
• Bystanders might be educated about epilepsy, but don’t have any experience interacting with PWEs.
• Bystanders might not know the very different nuances between different kinds of seizures. This diversity makes it difficult for surrounding people to act properly in an emergency case and for educating people in advance.
• Some participants experienced bystanders making an emergency call, when it was not necessary.
• Participants want to raise awareness of epilepsy so that first aid is as common in society as CPR in an emergency.

A lack of effective mechanisms:

• The most challenging issue for PWEs is communicating care information to bystanders in public areas when a seizure occurs. In most cases, there is not a clear solution yet.
• A lot of people do not look for a medical ID or on a PWE’s phone (providing medical information) while a seizure takes place. The awareness for the need to look for such information is little.

Transportation

Risk of having a seizure while driving:

• PWEs are afraid of having a seizure while driving and of harming others on the road. This is why they prefer getting rides from friends or family.
  • This illustrates a strong and continuous dependence on other people, who are not available at all times.

Delivering first aid care information to bystanders on public transits:

• PWEs are afraid of having a seizure while driving and of harming others on the road. This is why they prefer getting rides from friends or family.
  • This illustrates a strong and continuous dependence on other people, who are not available at all times.
• There is a chance of informing a stranger about a PWE’s condition, but it is not always possible to find a responsible person or a person who seems trustworthy.
  • Due to stigma, PWEs may not feel comfortable about sharing their health condition with strangers and asking if they can take care of them.

A lack of alternatives:

• Depending on where PWEs live, it is not always possible to choose the safest transportation for them. For instance ride-sharing services are difficult to find if PWEs live in relatively rural areas.

Workplace / school

Challenges of sharing care information:

• Participants reported that they are afraid of having a (first) seizure at these places.
• It is still difficult to share knowledge with potential secondary caregivers who are less responsible for taking care of a co-worker.
• Children who are PWEs are more dependent on other people than adults. Parents worry about sending their child to school or school trips.
• Parents need to emphasize the need of special care for their child, because a lot of teachers are not aware about the circumstances.
• In most cases simply providing care information to teachers or supervisors is not enough to educate them. On the other hand it is hard for teachers or supervisors to learn first aid because they are also responsible for other students or employees.

Education and awareness challenges:

• Participants mentioned having experienced stigma and discrimination from students or co-workers which discouraged them from informing their colleagues about their condition and appropriate care.
• A lot of teachers are not very supportive of promoting awareness in order to prevent stigma against epilepsy.

Financial, organizational and policy challenges:

• At organizational and policy levels resources and support are limited. A lot of workplaces do not have a proper emergency plan for epilepsy emergencies.
• Due to the lack organizational support and / or personal unwillingness, it is more unlikely for students or co-workers learn about epilepsy and care measures.

Insights

Taking everything into consideration, the sum of challenges PWEs are confronted with can influence their mental health and well-being in a bad way. In the worst case, these can even cause forms of anxiety. This is why the authors see a high necessity in a holistic perspective when designing technologies for seizure management.

Next steps

Having focused on these specific challenges facing PWEs and those around them, I intend to use this as the basis for a divergent research on possible solutions.

Resources

Aehong Min, Wendy Miller, Luis M. Rocha, Katy Börner, Rion Brattig Correia, and Patrick C. Shih. 2021. Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 113 (April 2021), 24 pages. https: //doi.org/10.1145/3449187

Referring to my last blog post my discoveries, concerning different chronic diseases as potential topics for user-centered first aid, bring me further into a converging research phase. I am focusing on epilepsy. I wanted to explore related first aid practices in a first and pain points for affected persons and their caregivers in another step.

As already mentioned first aid for epilepsy differentiates from other emergency cases. Not for any appearing seizure an emergency call and medical professionals are required. Not every patient has the same seizure occurrences. Mild forms of seizures only require keeping the affected person safe and comfortable. Severe forms, on the other hand, urgently require professional help.

This is why bystanders are confronted with a difficult decision-making process. But still most of them don’t even know there is a choice between securing the affected on their own or making an emergency call in addition.

A general approach

The Epilepsy Foundation provides helpful guidance on how to act in case of a seizure and how to recognize if professional help is needed. This guide can be applied to all types of seizures in general:

Always stay with the person until the seizure is over.

Since seizures are unpredictable and different for every person, first aiders should always stay with them. Whether this means waiting for the affected to be redeemed or giving medical professionals information about the incident.

Pay attention to how long the seizure lasts.

Keeping an eye on the watch can help to determine how severe a seizure or how difficult the process of recovery is. This is immensely helpful, especially for the affected person’s caregiver, who know how to deal with their disease. Also this is one parameter for the decision-making of making an emergency call.

Stay calm. Most seizures only last a few minutes.

The reaction to an occurrence is crucial for how surrounding people as well as the affected persons reacts. Staying calm will positively influence others too. Reassurance will help the affected person too, when they got through.

Prevent injury by moving nearby objects out of the way.

Bringing persons, who are experiencing a seizure, into a safe and comfortable condition might be crucial on what course the incident will take. Even small form of epilepsy can lead to serious injuries, when the affected person is not in control of their movement behavior.

Make the person as comfortable as possible.

Depending on the situation, supporting to sit or lay might be needed to bring an affected person into a safe condition. The head in particular is a weak spot that needs to be looked after.

Keep onlookers away.

Since waking up between surrounding people can be overwhelming and embarrassing, onlookers should be advised to distance themselves. Nevertheless people who take care should be kept in place.

Don’t hold the person down.

Unwillingly movements should not prevented by first aiders, as this can lead to injuries or panic for the affected person. These movements are a way of processing.

Don’t put anything in the person’s mouth.

During a seizure, facial muscles may tighten, causing sudden biting movements. Fortunately affected persons are not able to bite into their tongue during a seizure.

Make sure their breathing is okay.

If laying on the ground, affected people should be turned on their side. This enables them to breath more easily and prevents choking.

Don’t give water, pills, or food by mouth unless the person is fully alert.

Not being able to swallow could be a danger if affected persons are given something into their mouth. Choking can be a consequence.

Know when to call for emergency medical help.

This might be the case when:

• A seizure lasts 5 minutes or longer.
• One seizure happens right after another without the person regaining consciousness (“coming to”) between seizures.
• Seizures happen closer together than usual for that person.
• The person has trouble breathing.
• The person appears to be choking.
• The seizure happens in water, like a swimming pool or bathtub.
• The person is injured during the seizure.
• You believe this is the first seizure the person has had.
• The person asks for medical help.

Next steps

This guide provided an insightful overview for the interactions required when caring for someone who is having a seizure. Nevertheless, it may also be worth finding out what makes the occurrence of seizure types different. As mentioned, I would like to know more about pain points affected persons and their caregivers are confronted with. These may be the next steps worth taking.

Resource

Epilepsy Foundation: https://www.epilepsy.com/recognition/seizure-first-aid

As mentioned in my last blog post, I went deeper into researching specific first aid procedures which are related with the selected disease topics.

I went through the mind map for chronic diseases I created and evaluated whether there are first aid cases related to these.

In doing so I recognized there is a differentiation necessary between what is a disease, a symptom or a suddenly occurring disease event. This is sometimes hard to tell, since we all known terms like cardiac arrhythmia, cardiac arrest and heart attack, but don’t know the connection between these. Some of these terms are influencing each other as a risk, a symptom, a consequence etc. That is why I use the term „disease topic“ to cover all of these in the following.

Also this brings this research to the question where to set the focus as a chronic disease can have plenty of disease events and, vice versa, a disease event can cause chronic diseases.

Disease topics regarding first aid practices

• Cardiac arrhythmia (chronic disease): Can have multiple ways of consequences, leading to multiple disease events such as stroke (disease event), cardiac arrest (disease event) and developing new chronic diseases (dementia, heart failure).
• Diabetes (chronic disease): Diabetes has a lot of different consequences, not all of them lead to an emergency case, but those leading seem to mostly affect the heart (e.g. cardiac arrest) or circulatory system. This merely leads to using a defibrillator or providing sugar containing drinks or snacks.

These previous points seem very common as general first aid practices which might already be widely-known. The emergency calls are happening very early. Also there might already be enough good solutions existing in terms of prevention, learning and in emergency cases etc.

On the other hand there is a chronic disease, which seem to need a different kind of emergency practice:

• Epilepsy (chronic disease): Can express itself in different ways, but having in common that an affected person needs to be placed securely going through a regular seizure. An emergency call is not needed at all times, the decision depends on how drastic the seizure is.

This seems to provide a more uniform way to develop a user-centric and technology-based solution to ease this form of decision making.

Further steps

Regarding to what I discovered, I would like to focus more on first aid practices and pain points for epilepsy, as this promises to be different kind of emergency. I want to accomplish this by diving deeper about the specific first aid practices and already existing solutions in search for possible pain points.

These steps will bring my research into a first converging phase.

Resources

• Healthline Media: https://www.healthline.com/health/arrhythmia
• Gesundheit.de: https://www.gesundheit.de/krankheiten-symptome/diabetes/folgen-komplikationen-id213716/
• British Red Cross: https://www.redcross.org.uk/first-aid/learn-first-aid/diabetic-emergency
• Hopekins Medicine: https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/types-of-seizures
• Epilepsy Foundation: https://www.epilepsy.com/recognition/seizure-first-aid
• St John Ambulance: https://www.sja.org.uk/get-advice/first-aid-advice/heart-conditions/cardiac-arrest/
• Mayo Foundation for Medical Education and Research: https://www.mayoclinic.org/diseases-conditions/heart-attack/symptoms-causes/syc-20373106#complications
• British Red Cross: https://www.redcross.org.uk/first-aid/learn-first-aid/heart-attack#3

I have focused on diving deeper into the two topics of first aid and chronic diseases, maintaining diverging research. I assume gaining an understanding will set the right basis for the converging research process ahead.

Depending on the context, people who provide first aid or people who have been trained to do so are referred to as first aiders.

First aid measures

So far I identified the following areas of first aid measures (as considered in the DACH area):

Life-saving immediate measures

• Stable lateral position
• Airway management
• Cardiopulmonary resuscitation
• Automated external defibrillator
• Shock storage

Acute diseases

• Heart attack
• Stroke
• Poisoning, chemical burns
• Asthma and hyperventilation
• Abdominal pain, birth
• Hypoglycemia
• Sunstroke, heat stroke, heat exhaustion
• Frostbite and hypothermia

Medication

• Medication knowledge
• Painkillers
• Nitroglycerin and Acetylsalicylic acid for heart attacks
• Epinephrine (adrenaline) in allergic emergencies

Injuries and wound care

• Injury to the spine, cervical splint grip, cervical collar
• Compression bandage
• RICE / PECH-Regel
• Bone fracture, strain and contusion with fixations and immobilizations
• Burn injury and scalding
• Eye injury, ear injury, nosebleed
• Desinfection
• Wound dressings for various purposes: covering, hemostasis, wound healing, fixation

More

• Emergency numbers
• Securing the accident site
• Salvage, rescue from danger zone, carrying handles
• Water rescue
• Action schemes such as ABCDE scheme
• Psychological first aid (conversation)
• Rescue chain
• Triage
• Operational management

Since the term of first responder is not defined precisely, I will need to find out which measures are suitable for individuals without prior experience. If this group of people manages to provide first aid to a certain extent, it is more likely more experienced or educated people will encounter fewer challenges. This might also give a sense of how to prioritize first aid measures which are more crucial or necessary for education and execution.

Potential topics

So far I discovered the following to be potential topics considered with first aid, as they contain events that occur suddenly:

• Epilepsy
• Multiple sclerosis (MS)
• Stroke
• Diabetes
• Cardiac arrhythmia

Besides this broad consideration my primary interest lies in measures of suddenly appearing disease events with no specific aid tools required and that can basically be executed by everyone. Specific first aid procedures could be a topic to dive in when starting the first converging research phase.

Resources

• Wikipedia: https://de.wikipedia.org/wiki/Erste_Hilfe
• John Hopkins Medicine: https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/types-of-seizures
• Bundesministerium für Soziales, Gesundheit, Pflege und Konsumentenschutz: https://www.gesundheit.gv.at/krankheiten/gehirn-nerven/multiple-sklerose/ms-symptome.html
• Bundesministerium für Soziales, Gesundheit, Pflege und Konsumentenschutz: https://www.gesundheit.gv.at/krankheiten/gehirn-nerven/schlaganfall/symptome.html
• Healthline Media: https://www.healthline.com/health/arrhythmia