New research reveals life for brain injury survivors during COVID-19 lockdown, and how for a time they felt a level playing field was created – but how that has not been translated into the return to ‘normal’ life
The COVID-19 pandemic raised awareness of what life is like with a brain injury among the general population through shared experiences of loneliness and social isolation, and enabled survivors to feel ‘more inclusive in the world again’, a new study has revealed.
Lockdown also afforded people with brain injury a break from perceived societal expectations, giving them time and space to focus on themselves, the research found.
However, with the resumption of normal life post-pandemic, brain injury survivors continue to experience the loneliness they always have done, with the study findings feelings of frustration and disappointment around the short-lived acceptance of their situations.
One survivor equated the situation to “when you go and catch the train and the train’s been delayed, and you’re all stood there on platform together.
“But then train comes along, and everyone else can get on it and go off on their life journey – but you’re the person who has to stay stuck on the platform, you cannot get on that train and carry on that social engagement.
“It does feel the return to normal is not an option for people with a brain injury. That also brings the psychological impact, the one I probably struggle with the most, which is that brain injury doesn’t get better.”
The research, led by Dr Stephen Dunne at Northumbria University, builds further on previous studies which have laid bare the lonely reality for brain injury survivors in their everyday lives.
And in being able to effectively support this group, the authors recommend more tailored therapies to relieve perceived social pressure on survivors, as well as maximising the use of peer support.
“We recommend that psychotherapy, such as CBT, focus on reframing survivors’ beliefs regarding societal expectations, minimising the pressure experienced by survivors to keep up with their peers physically and emotionally and modulate resilience,” the authors conclude.
“Furthermore, all participants identified the importance of peer support, whether those respondents had direct access to it or not.
“We recommend incorporating accessible and promoted peer support into future interventions to help moderate survivors’ expectations of their capabilities and identity in society, reduce loneliness, protect mental health and generally improve wellbeing for brain injury survivors.”
The study gives a unique account of the experiences of 24 survivors – the majority of whom had no physical disability, and only cognitive ‘hidden’ impact – during lockdown, and reveals how they were encouraged by the creation of a level playing field with the rest of society through the shared experiences.
“In a strange sort of way it made you feel less isolated and lonely, because every time you turned on the radio or television everyone was talking about how lonely they were, so in a way it made you feel you part of something a bit more in a strange sort of way,” said one survivor.
And as well as feeling more positive through the shared experiences, lockdown also enabled survivors to reduce their fatigue and reflect on their lives.
“[Lockdown] had the benefit of buying the space and time to actually break from my former lifestyle and give me space then to maybe form a new lifestyle – and that’s very difficult to do when you first have a brain injury because you automatically want to try and go back to as much as what you used to do before. It has given me that space to change,” said a participant.
However, once lockdown was over, participants found it difficult that they were not able to look forward to resuming life in the way that the general population was.
“There has been a lot of discussion around the empathy that’s been generated through COVID, that people have an insight into what it feels like to be socially isolated, to not be able to join in,” said one survivor.
“But I think human nature leads people to feel excited about the option of that ending.
“If I had the option for my brain injury to end, I think I’d be overjoyed, but I don’t, so those challenges around social engagement for myself will remain.”
