by tom.giess -

#12 | User-centered Design in Wearable Expressions

The following paper „Understanding and Evaluating User Centred Design in Wearable Expressions“ by Jeremiah Nugroho and Kirsty Beilharz from the University of Technology Sydney was presented at the 2010 Conference on New Interfaces for Musical Expression (NIME). This paper describes the multi-dimensional design factors needed to create and evaluate what the authors define as „Wearable Expressions“.1

The authors differentiate between the following terms: Wearable Computing, Wearable Art, and Wearable Expression. According to the authors, Wearable Computing describes pocket-sized and portable computing systems that don’t necessarily have to be worn on the user’s body. These systems follow the principles of traditional screen-based desktop computing. Apart from that, the purpose of wearable art is mainly recognized as purely aesthetic, supported by technology. The authors introduce the term Wearable Expressions, which are the focus of their paper, defined as „smart gadgets or devices“ that users wear on their bodies and that contain “ certain computing intelligence“ to serve specific user tasks.

Given that this paper was written in 2010, at an early stage for consumer-ready wearable devices, it makes sense to sharpen the blurred lines between these terms to emphasize the focus on the user’s perspective rather than pure technology or art. Three years earlier, in 2007, Apple Inc. introduced the first iPhone as a wearable mobile device designed to fit in consumers‘ pockets.2 At the time, wearable technology was not as common as it is today.

Further the authors point out the lack of acceptance of wearable devices at the time. They cite the negative example of the Oakley THUMB Pro. At the time, these earphone-embedded sunglasses had several problems for users, such as low battery capacity and high market prices, as well as the common user habit of holding a phone to the ear. Issues such as cost, comfort, appearance, ergonomics, usability, and aesthetics had prevented the public from adopting new designs.

Compared to user habits and the industry’s technical capabilities in 2010, today’s device landscape is much more divers, which goes hand in hand with greater receptivity and adoption by potential users. Not only are products coming in more affordable price points, they are also becoming more trendy. One example is Bluetooth in-ear headphones, which seem to be the iconic everyday objects of the 2020s.

The authors state 12 shaping factors for wearable expressions:

  1. Size / dimensions
  2. Device positions
  3. Power source
  4. Heat
  5. Weight
  6. Durability / resistance
  7. Washability
  8. Enveloping / fabrication
  9. Functionality
  10. Usability
  11. Sensation
  12. Social connectivity

According to the authors, size, device position, power source, and weight are fundamental and highly interrelated factors. These aspects can affect the user’s comfort, appearance, perception, and interaction with the device. Therefore, designs should meet the user’s expectations and ergonomics in relation to their anatomy. Depending on the context of use, considerations such as whether a power source should be corded or cordless, as well as the overall weight of the device, strongly influence aspects such as mobility and muscular effort.

Compared to the past, best practices and standards seem to have been established. The authors already mentioned the wristwatch as one of the simplest attachments to the human body. Today, we see a range of smartwatches, fitness bands, health trackers, which are even implemented in their brand’s own technological ecosystem and communicate with each other. However, it seems that other forms of wearables, such as head-mounted displays or smart glasses, have not entered our everyday lives yet.

With the technological advances of the last 14 years, the mentioned issues of size, power source and weight of the hardware may not be a problem anymore. The possible range of functionality and features, both on the software and hardware side, seems to be less limited to a single device than it used to be. At the same time, today’s devices are more advanced than ever when it comes to durability and washability of hardware materials. As defined in the paper, these factors require design considerations for multi-contextual use, such as flexibility, absorbency (the body’s natural excretion), or heat distribution.

Instead, in relation to today’s technological possibilities, the focus of design must shift to the core of useful and user-centered concepts by ensuring the quality of usability, which is manifested, for example, in effortless navigation, and by reducing the total number of selected features. Higher relevance for users and their engagement can be achieved by truely enabling them to enhance their physical capabilities through the integration of sensations such as hearing or touch, on the one hand, and to connect with each other socially, on the other.

In summary, it is noticeable that this paper is at an early stage of research on consumer-ready wearable technology. This is not only because the authors emphasize that their research started with this paper and further steps are planned, but it is also recognizable when it comes to hardware issues preventing Wearable Expressions to be well designed, which we mainly do not need to face in the present time. Provided that the authors made a serious contribution to the state of the art at the time, it is important and right to start with a paper like this. Taking a position for a more human-centered approach at that time turned out to be groundbreaking for how technology should be designed today in an increasingly technological world. Some parts of this paper may be outdated, but other parts are still more important than ever.

Resources

  1. Jeremiah Nugroho, and Kirsty Beilharz. 2010. Understanding and Evaluating User Centred Design in Wearable Expressions. Proceedings of the International Conference on New Interfaces for Musical Expression. DOI: 10.5281/zenodo.1177867 ↩︎
  2. Wikipedia. (2024). Apple Inc. In Wikipedia. Retrieved April 20, 2024, from https://en.wikipedia.org/wiki/Apple ↩︎
by tom.giess -

#11 | Procedure in the Second Phase

In the first semester I was able to get an insight into how epilepsy first aid could be supported by technology. To take things further, I would like to start with a brief reflection on how the findings and recommendations of this research can be further processed for a real-world prototype and what the next steps might be.

Thoughts on research journey

After taking some time to reflect, I began to doubt how my previous research could lead to a meaningful contribution, since this topic is very focused on a specific use case (emergency) for a specific disease pattern (epilepsy), and there seem to be some promising solutions already out there.

To come to a conclusion, I see three options on how to proceed:

  • Option 1: Continue with my topic and start prototyping ideas. This would mean no more research than usual.
  • Option 2: Stay close to my previous research, but eventually choose a different use case or project approach. If necessary, look for similar areas where my research knowledge can be applied. In case of a change of direction, this could mean additional research.
  • Option 3: Completely change the topic. This would mean the highest amount of (new) research needed and could possibly lead to time constraints.

Weighing the options, a path between options 1 and 2 seems to make the most sense: The first step would be to recall my research findings (pain points, recommendations, etc.).

Next, I should try to evaluate how existing solutions align with what I have learned about the pain points of the target audience and the recommendations of the experts (option 1) to see if there is room for improvement or if a custom concept is even needed.

At the same time, I should be open to following other project ideas if the room for a serious contribution is too small or non-existent (option 2).

Given that this research phase is focused on prototyping, it is of course important to gain more insight into users and stakeholders.

Project approaches to follow

During my previous research, I found expert advice on areas of possible projects1. These include:

  1. Ad Hoc First Aid Care Collaboration with the Public
  2. Semi-Ad Hoc Care Collaboration During Transportation
    • Finding a Person in Charge & Care Information Sharing When Utilizing Public Transportation
    • Seizure Monitoring & Information Sharing While Driving
  3. Prior Education for Secondary Caregivers at Workplace/School
    • Information & Responsibility Diffusion
    • Facilitating Education & Stigma Reduction Strategies

Where to start

After a second look at what I’ve found out, I want to start evaluating existing solutions for „Ad Hoc First Aid Collaboration with the Public“, which according to the experts is the area that is most in demand. At the same time, it has my greatest interest.

Resources

  1. 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 ↩︎
by tom.giess -

#10 | Research recap

Over the past three months, I have primarily conducted literature research on the overall topic of First Aid Assistance for Chronic Diseases. During this process, this topic has evolved in diverging and converging research phases, becoming more and more detailed over time. At this point I would like to briefly recapitulate what I have learned so far.

Research development

With the announcement of my research topic, I got to know better what first aid and the chain of survival means. I also got a great impression of what interactive first aid applications exist and what areas they cover.

In the beginning, I started to keep the topic very rough, which allowed me to discover things. To understand what first aid consists of, I drew a bigger picture of the different aspects. I also had a first idea of what types of chronic diseases could be considered. Very early on, I realized that I was interested in the specific context of sudden emergencies.

As I delved deeper into the variety of chronic diseases, I discovered types that were suitable and less suitable for my research. I also learned the difference between diseases, symptoms and disease events. The candidates were cardiac arrhythmia, diabetes and epilepsy. What makes epilepsy different from the others is that not every seizure is life threatening. I found this interesting. That is why I decided to pursue this path in my research.

I looked deeper into epilepsy first aid and found a general approach that can be applied to any type of epileptic seizure: Get the person into a safe state and recognize when it is time to call an ambulance. So there is a difficult decision-making process involved.

I was lucky enough to find this very valuable scientific article that describes the current state of research for my central research question: How can we use technology to support first aid? This helped me immensely to understand the criteria that need to be considered, the pain points of people with epilepsy and their families, and recommendations for future technologies to address these issues.

In my search for tools and methods as a starting point for project work, I came across this scientific paper explaining and categorizing different design approaches. It highlighted the possibilities and limitations of design in the strict field of healthcare, which helped me to evaluate where to place a potential project.

Finally, I tried to find out more about untrained first responders who have experience helping a person with epilepsy. This turned out to be very difficult, so I tried to make assumptions about their perspective by studying seizure first aid stories. If further research on this is unsuccessful, I would need to gather information using other (empirical) methods.

Outlook

From this point of research, the next steps would include the following:

  • Gain greater insight for all stakeholders through additional (user research) methods
  • Further evaluate existing solutions
  • Consolidate insights, findings and other information into an initial concept
by tom.giess -

#09 | Further Insights of Challenges, Needs and Expectations

One of the research questions of my work hasn’t received much attention: „What challenges, needs, and expectations do first responders face?“

In order to include the perspective of first responders, I conducted a literature and web search to see if there was already information available. In terms of time spent, the search so far has been quite difficult. It seems that there is very little information about the experience of untrained first responders in the public area.

However, I was able to find seizure first aid stories published by the Epilepsy Society in the UK. As part of National Epilepsy Week in 2019, they are running a campaign called #seizuresavvy. People were asked to share their first aid experiences, both good and bad.

© Epilepsy Foundation

Procedure

By studying these stories, I tried to draw conclusions about the challenges, needs and expectations of first responders. The people with epilepsy (PWEs) who contributed their experiences were Vicky, Michael, Chloe, Kas, Tim and Tom. Their stories tell how and who took on the role of first responder. I extracted the information for these three aspects and grouped them into the following five categories.

Education, training, awareness

Effective education and training for first responders is critical, as illustrated by several scenarios involving people experiencing seizures. Rapid decision-making and action are essential in critical situations, emphasizing the need for first responders to seek help quickly and make informed decisions.

There is also a clear call for increased public awareness and education about epilepsy to prevent misunderstandings and ensure appropriate responses in emergencies. Basic first aid skills, such as placing people in the recovery position, can have a positive impact on well-being, highlighting the importance of even simple interventions.

However, challenges exist, including potential misconceptions about seizure first aid, such as the common misconception of placing objects in the mouth. The unpredictable and potentially life-threatening nature of seizures, especially in cases of unstable epilepsy, further complicates the role of first responders.

Advocacy for awareness campaigns and education initiatives is essential to address gaps in public perception and understanding of epilepsy. Individuals such as Chloe and Paula advocate for broader societal awareness, support and understanding, emphasizing the need for education among various groups, including teachers and first responders. The lack of awareness of specific epilepsy conditions, such as photosensitive epilepsy, poses challenges for individuals like Chloe and highlights the importance of comprehensive education and resources.

Communication

Effective communication plays a critical role for first responders in emergency situations. In one scenario, a five-year-old niece had to effectively communicate the emergency to get help from neighbors and emergency services, highlighting the importance of clear and concise communication, even in difficult circumstances.

Vicky probably expected her niece to communicate the situation to the emergency services, underscoring the need for effective communication to ensure a rapid response. In a different context, Tim faces the challenge of recognizing the onset of a seizure, particularly during activities such as running, where rapid communication to bystanders and their response is critical.

Tim’s experience also highlights another aspect of communication challenges – the lack of opportunity for acknowledgement. Despite receiving first aid, Tim was unable to express his gratitude and thanks to those who helped him during the incident. From the first responder’s perspective, they must assume that they will not receive conscious recognition from the individual. This underscores the importance of providing opportunities for individuals to recognize and appreciate the help they receive, thereby contributing to a sense of gratitude and recognition within the community.

Structural circumstances

The structural circumstances surrounding first responders highlight crucial aspects of recognition, support, and challenges faced by individuals like Chloe. As a student, Chloe expects recognition of her epilepsy as a legitimate medical condition and anticipates knowledgeable and supportive responses from teachers and first responders during seizures.

However, stigma poses a significant challenge, as Chloe’s primary school teacher doubts the authenticity of her seizures based on her appearance, and secondary school first responders refuse to help because of the perceived violence of seizures. This underscores the importance of addressing misconceptions and promoting understanding to eliminate stigma in educational and healthcare settings.

Establishments such as supermarkets are also implicated in these structural circumstances. There’s an expectation that such places should have policies and procedures in place to support people experiencing seizures, ensure their safety and prevent them from being left alone after an episode.

The findings underscore the critical need for increased education and training for teachers and first responders. This includes recognizing the type of seizure a student, teacher, employee or customer is having and responding appropriately.

Supportive environment

Creating a supportive environment for persons with epilepsy (PWE) involves a combination of knowledge, training, and understanding of different circumstances.

For example, Vicky teaches her niece about seizure response and emphasizes the importance of preparedness.

In Michael’s case, there’s a potential need for emergency response training for his family, especially Paula, given the unpredictable and severe nature of his seizures. This highlights the importance of ongoing education and preparedness for families living with epilepsy.

Chloe needs a supportive environment at school, where teachers and first responders understand her condition and offer help without stigma. This highlights the need for awareness and understanding in schools to create an inclusive atmosphere for persons with epilepsy.

Response time

The importance of response time is a common thread in several scenarios involving first responders. Vicky’s niece faced the challenge of acting quickly in a time-sensitive situation when Vicky was about to have a seizure, highlighting the critical nature of timely responses.

For people like Michael, getting help in a timely manner when he is having a seizure is critical because of the potential severity of his condition. The expectation is that those around him can respond quickly to provide the necessary support.

In another context, a store assistant became a first responder in a public setting and faced the challenge of responding to a medical emergency involving a tonic-clonic seizure. This highlights the need for individuals in public spaces to be prepared for timely responses to such situations.

It also highlights the need for support during the recovery phase, as seen with Kas, who requires assistance in regaining consciousness and ensuring a safe environment following the seizure. This further emphasizes the time sensitivity not only during the seizure itself, but also in providing support in the aftermath.

Conclusion

Overall, finding experiences from untrained first responders in public settings has been difficult. It is easier to find experiences from persons with epilepsy and those around them than from strangers.

It is questionable whether a more in-depth literature and web search would reveal more information. It could be assumed that previous research and resources do not cover the experiences of untrained bystanders if they are not known or it is not important for them to share their perspective. In order to include their perspective, it may be necessary to reach out to them by initiating an open call or something similar.

Resources

Epilepsy Society (UK): https://epilepsysociety.org.uk/living-epilepsy/personalstories/seizure-first-aid-stories

by tom.giess -

#08 | Design Approaches for Healthcare Design

While searching for a suitable practical methodology for this research project, I came across a scientific paper for a Design Research Society conference in 2018, written by Dr. Erez Nusem, University of Sydney. The paper gives an overview of different design approaches for healthcare, which can be applied not only to UX and interaction design, but also to industrial and social design.

When bringing research into project work, these approaches can help to define the relationship between the prescribed outcome and the constrained context, as well as the extent to which design can or should have an impact when talking to stakeholders.

Design as an human-centered approach

Healthcare systems are becoming increasingly conscious of the quality of care delivered, nevertheless the majority of innovation in the realm of healthcare has been focused on products and services. These technology-driven innovations treat medical staff as the primary stakeholder and do little in the way of improving the quality of care for patients. As a human-centered approach, design offers a method for holistically exploring problems, meeting stakeholder needs, and has been established as a means of driving innovation.

Systematization

The author categorizes four design approaches and places them on a coordinate system that shows the relationship between the amount of prescribed and constrained context. This emphasizes the impact of designing for healthcare, where precise boundary conditions do exist.

Interpreting design opportunities in healthcare (synthesis from Nusem, Wrigley & Matthews, 2017; Mosely, Wright & Wrigley, 2018)

Design approaches

Result-centered design (simple)

Description

Design follows ‘the rules of the game’, concentrating on design conventions, customs and habits, and the set ways of working within a field (e.g. concentrating on the user and designing from their perspective).

Example

As articulated directly by the staff, previous ultrasonic scanners were very immobile and heavy. Philips designed a machine which could easily be moved around a patient. The process based on observation and analysis of current devices in use.

Requirements

  • Basic understanding of design.
  • Problems are easy to identify and articulate.
  • A deep sense of empathy is not required.

Suitable design scenarios

  • No consideration of workflow and processes in newly designed environments.
  • Lack of standardised procedure for training and use of equipment.
  • Lack of standardised platform in hospital for collecting and storing patient data.

Situation-centered design (complicated)

Description

Design follows ‘the rules of the game’, concentrating on design conventions, customs and habits, and the set ways of working within a field (e.g. concentrating on the user and designing from their perspective).

Example

A group of designers worked on improving the information exchange between nurses in shift changes, which has been incomplete and resulted in unsatisfied patients. As a result nurses were advised to share information in front of patients, which increased quality of information transfer between all stakeholders and shorter preparation time for nurses.

Requirements

  • High design competency required, since design criteria can be difficult to define.
  • Context needs to be explored holistically.

Suitable design scenarios

  • Patients with undiagnosed conditions which are discovered through unrelated treatment.
  • Outdated workflows that have evolved over time, with no deliberate design.
  • Suboptimal experience in waiting rooms with issues around long wait times for patients.

Subject-led design (complex)

Description

Design is concerned with the process and development of new ways of working which are imposed upon a problem (e.g. reframing the design problem to develop something new).

Example

CT scanners require patients to remain still for as long as the lengthy exposure takes. Instead of increasing the imaging source‘s power, causing a higher dose of radiation, designers came up achieving a more enjoyable experience while scanning through changing the hospital‘s environment.

Requirements

  • Being open-minded to undefined outcomes.
  • High degree of empathy and understanding of stakeholders and challenges.

Suitable design scenarios

  • Staffing issues (e.g., understaffed due to low retention), meaning patients often need a return visit following diagnosis.
  • Patients with visible medical products are self- conscious.
  • Prolonged stay in sterile environments, with minimal interaction with other humans.

Design for innovation (chaotic)

Description

Design is revolutionary and disruptive, where the designer explicitly aims to redefine the field (e.g. the entire problem and solution are reconceptualised).

Example

Medicial errors are often caused of incorrect usage of medical devices due to a technological design focus. Designers who consider users and usage scenarios are able to achieve a seamless user experience, which benefits ease of use and shortens learning time for medical staff.

Requirements

  • Being open-minded to leave conventional paths and practices.
  • Being open-minded to undefined outcomes.
  • Overall holistic perspective required.
  • Masterful design competency, facing ambiguity without pre-existing solutions.

Suitable design scenarios

  • Lack of channels for patients both pre and post-care (e.g. initiating care and discharge) to be engaged in their care.
  • Desensitised staff which see patients cases rather than individuals.
  • Services are not value-driven and do little in the way of ensuring optimal patient outcomes.

Insights

Regarding my research, I’d like to classify my research project between situation-centred design and design for innovation regarding the following aspects:

Situation-centered design

  • The context needs to be explored holistically, as it is emergency relevant, it must work for different contexts.
  • The solution can be narrowly prescriptive, optimizing the few existing solutions.

Design for innovation

  • There is a lack of existing solutions.
  • Given new technologies and devices, the outcome could be anything.
  • A holistic approach to users and context of use, as suggested by the authors, is needed: Taking into account the attribution of epilepsy stigma, such as the visibility of seizures and cultural perceptions, as well as the different symptoms of epilepsy, as people with epilepsy often experience different individual and social challenges depending on the severity of their symptoms.

Resources

Nusem, E. (2018) Design in Healthcare: challenges and opportunities, in Storni, C., Leahy, K., McMahon, M., Lloyd, P. and Bohemia, E. (eds.), Design as a catalyst for change – DRS International Conference 2018, 25-28 June, Limerick, Ireland. https://doi.org/10.21606/drs.2018.318

by tom.giess -

#07 | Existing solutions for Ad Hoc Bystander First Aid

Referring to the authors‘ suggestions for innovative approaches in the previous blog post, I conducted further divergent research on existing solutions in the following areas:

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

Research criteria

Due to the fact that the authors propose innovative solutions, I noticed a general lack of existing solutions during my research. Looking at the identified pain points that people with epilepsy (PWE) face, I assumed that bystander first aid in public was the most desirable and interesting area. Also, the solutions for this topic are more tangible. I came up with the following criteria to search for:

  • A solution must work for all types of seizures in general, as they are very individual and the differences are not well known.
  • A solution must provide information about when to call 911. This is not always the case when a seizure occurs.
  • A solution must guide untrained bystanders to provide first aid in an emergency, as they may be able to place a person in a safe condition to prevent injury.
  • A solution must make emergency information clearly visible and accessible to bystanders and medical professionals, otherwise it may be overlooked.

Mixed reality

HoloCPR

Although this solution addresses cardiopulmonary resuscitation (CPR), the authors propose to adapt this concept to epilepsy. HoloCPR is a mixed reality interface that assists bystanders in providing first aid by providing visually augmented user guidance. The developers, associated with UC San Diego – Jacobs School of Engineering and UC San Diego Design Lab, found that this technology can reduce the response time and ease of first aid actions compared to using a tablet application.

Other than this solution, I have not been able to find a virtual reality, augmented reality or mixed reality solution that is specifically tailored to epilepsy. Furthermore, for this concept to work, mixed reality devices need to be further integrated into our daily lives, as seizure emergencies are unpredictable and bystanders need to have the technology with them.

Mobile apps

Aura: Seizure First Aid

Aura is an app designed to help people with epilepsy by alerting their environment and caregivers when a seizure is imminent. Other key features include step-by-step seizure first aid instructions, access to medical IDs, live location sharing, and tracking events in seizure logs.

In doing so, the app provides an all-in-one solution that attempts to cover multiple application areas.

Medistat Seizure SOS

Medistat Seizure SOS takes a similar approach. It is designed to empower epilepsy patients by alerting those around them to seek help: When a seizure occurs, the app notifies nearby bystanders and provides them with audio instructions to effectively provide first aid to the person with epilepsy. Opening the app automatically sends alerts and SMS messages to pre-defined emergency contacts. The app actively and continuously tracks the live location, ensuring that caregivers are constantly updated on the individual’s exact whereabouts.

However, based on app store numbers and reviews, this app appears to be under-utilized.

Wearable devices

MyID

MyID allows you to store your entire medical profile, including emergency contacts, vital signs, medical images, and more. This online profile is linked to a MyID wristband that allows medical professionals and bystanders to access detailed medical information via a QR code.

Compared to traditional medical ID wristbands, where health information is engraved on a small surface, MyID allows users to store an unlimited amount of information in the digital space. However, these devices can be overlooked by untrained bystanders who are the first on the scene in the event of a seizure emergency.

Dialog

Dialog is a concept for an epilepsy aid that focuses on seizure monitoring and detailed reporting. It is a wearable module that can be attached to the skin either by a transparent adhesive or by a watch-like clip. It is also capable of providing early warnings so that a person can prepare to move to a safe state, and a separate bystander app provides step-by-step instructions on how to help a person in an emergency.

This technology concept is beneficial for the end user, who can decide where to wear the module and how visible it is. On the downside, it requires bystanders to install a separate app, which prevents most people in public from acting as first responders.

Conclusion

As I researched existing solutions, I realized how few there were. These examples give a sense of where the industry might be today.

Regarding the Indiana University Bloomington research mentioned in previous blog posts, evaluating existing solutions using the pain points from the research can reveal optimizations.

Resources

by tom.giess -

#06 | Approaches to enhance Seizure First Aid Care

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.


Seizure First Aid Care Framework. The color gradient around the edges indicates the general availability of each caregiver group in each place, with solid color indicating higher availability. © ACM Journals by the Association for Computing Machinery

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

by tom.giess -

#05 | Challenges living with Epilepsy

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.
Classification of places and comfort zones for PWEs (© ACM Journals by the Association for Computing Machinery)

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

by tom.giess -

#04 | General First Aid Procedure for Epilepsy

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

by tom.giess -

#03 | Setting a first focus

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