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.
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
