“I find it very difficult to understand what’s happened to me” (Gabe, 65)
Gabe, like many survivors of Acquired Brain Injury (ABI), experience difficulty in coming to terms with his injury and its life-altering impacts. ABI is an umbrella term that includes all brain-related injuries during an individual’s lifetime. There are two main types of ABI: Traumatic and Non-Traumatic. Globally, ABI is the leading cause of death and disability.
The journey of acceptance post-brain injury is often fraught with confusion and frustration, which is made worse by negative interactions with members of the public and healthcare professionals. I sat down with four individuals with ABI for one-on-one interviews to learn more about their personal experiences with their injuries. In those 30-minute interviews, they shared with me their journey of acceptance, what their injuries have taken away from them, and most importantly, what their injuries taught them. The names used are pseudonyms to protect the identity of the participants. The transcripts were analysed qualitatively using the steps set out by the powerhouse duo of Thematic Analysis: Virginia Braun and Victoria Clarke.
Two interrelated themes (recurring ideas) were identified from the transcripts: ‘The role of acceptance’ and ‘The power of knowledge’, each manifesting in three subthemes (see Fig.1 for Thematic Map). Even though all six subthemes are extremely interesting and insightful, I will only be sharing the findings from Personhood and Barriers to Information as they directly relate to how we can make a difference in the lives of others. Hopefully, the findings will remind us that how we interact with others around us can have direct and profound impacts, especially on individuals with ABI.
Personhood – Treated as a “normal everyday person”
“they hear brain trauma, brain damage and they presume straight away that you’re a bit doolally” (Tom, 68)
Tom’s sentiments were echoed in almost all the interviews I had. Tom shared that he was left angry and frustrated when he was treated differently based on his injury. Since then, he has opted not to disclose his condition to everyone he meets and chooses “not to say too much… to people out in the open world.” Unhelpful assumptions about ABI can affect how individuals with ABI perceive their self-worth and social integration, negatively impacting their quality of life.
The interviewees also shared that this issue stems from a lack of public awareness about ABI and that most people do not have malicious intent. “People don’t understand brain injury in all its aspects” (Tom). A study published in 2020 corroborated their lived experiences, reporting a “lack of knowledge and understanding of ABI among health and social care professions in the UK”. While another study showed that the general public fails to recognise ABI as a ‘hidden’ disability, with most expecting an “outward manifestation” of the injury.
Many of the interviewees also expressed that they appreciate it when people treat them like “a normal everyday person” (Laura, 62).
“People treating me as a normal everyday person…You know, like people that are normal like you and me, just talking with each other, I can cope with that.” (Laura, 62)
This normalcy idea is linked with public acceptance and internal acceptance of the injury. This also reflects the desire of individuals with ABI to be treated with dignity and not have their entire humanity viewed through the lens of their injury.
Barriers to Information – Stop speaking in “Gobbledygook”!
“I think people, they need to explain it in a normal term…everyday term, rather than a specialist term because I can’t handle that” (Laura, 62)
The primary source of information about ABI cited by all interviewees was healthcare professionals. However, they are also cited as one of the main barriers to information. Laura and Gabe shared their experiences dealing with healthcare professionals who lacked empathy. One of the main complaints being the use of inaccessible medical jargon or, as Laura aptly puts it, “gobbledygook”. The following is an excerpt of Laura’s recounting of an unpleasant interaction with a hospital counsellor:
“It was a counsellor in the hospital, she was talking in long words and I said ‘Look can you speak English so I can understand you?’ She went ‘I am speaking’- ‘No you’re talking these long words and I don’t know what that means’ I said, and she said ‘AH’ I said ‘Look I’ve got a brain injury, I know I’ve got a problem, but I need you to explain that in everyday language!’ and she went ‘I didn’t think of that’ and I said ‘That’s how I need it because you tell me this gobbledygook and I’ll just go alright mate’.” (Laura, 62)
This negative interaction illustrates two crucial points. Firstly, the importance of ensuring that healthcare workers are trained in using more accessible language when explaining complex medical concepts to their patients. In this case, Laura had to request her counsellor to use “everyday language”, which left her frustrated and negatively impacted her relationship and trust in her counsellor (AKA Therapeutic Alliance). Secondly, such interactions can do more harm than good for the patient’s recovery. Laura shared that when medical jargon is used, it is very confusing for her and “when it’s confusing, you’re confusing me more than when I first come in”. Furthermore, the use of inaccessible medical jargon goes against the idea of person-centred care – a care model that ensures that the individuals’ needs, values, and preferences are used to guide clinical decisions. Click here for an accessible opinion piece on why medical jargon should be banned.
As members of the general public, important lessons can also be learned from their stories. We can be more accommodating to different styles of communication and afford others the benefit of the doubt. As mentioned earlier, ABI is often a hidden disability; not everyone will be willing to share their condition with strangers. Hopefully, this post has offered you a taste of my research and shown you a glimpse of the rich personal experiences of individuals with ABI in their own words.
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So insightful and beautifully written. Great to read the findings behind all your hard work! Definitely learnt valuable lessons from these people’s stories.