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
