People who’ve had a traumatic brain injury (TBI) are three to four times more likely to have suicidality, which includes serious thoughts about taking one’s own life, suicide plans and suicide attempts.
Alyson Norman, lecturer in clinical and health psychology at the University of Plymouth, decided to interview 19 people with TBI from a brain injury rehab unit in New South Wales, Australia, to better understand this.
In her subsequent research paper ‘Living with suicidality following TBI’, published in the journal Brain Injury, she outlined some common themes. Participants experienced a loss of sense of self and chronic, but transient, suicidality, regardless of the person receiving long-term support.
But she also found that they engaged with protective factors, such as social support and spirituality. Implementing these as coping strategies during long-term rehab, she urges, may reduce the levels of suicidal distress.
Norman has noticed a few high profile international studies in the last few years highlighting that the rates of suicidality among people with TBI is particularly high, and that we’re lacking understanding of what that’s like for people on the ground and what protective factors might help them come out other side of their suicidality.
“We need to know the protective factors, how we can people through this. Although the findings are bleak, there are also positives – having spirituality and a sense of independence is important in getting people through the other side of suicidal thoughts.”
It took Norman nine months to go through 20 transcripts to look for themes.
“One of the saddest conclusions from the paper was one of the things that was protecting people from fulfilling their suicidal thoughts was that they often didn’t feel physically capable,” Norman says.
“They were concerned they wouldn’t be able to because of their physical disability. But as sad as that was, it wasn’t a huge surprise to me.”
That’s because Norman’s own brother, Tom, took his life six years ago aged 43.
“He said this to me several times,” she says.
Norman has just written a book about her brother, ‘Life and suicide following brain injury’.
She says she was never interested in writing about her brother’s story simply for the sake of telling it, but when she became involved in research looking at communities, she became aware that his wasn’t an isolated story.
“He shared his story with a lot of people with brain injuries; my brother could provide a useful case study of what can go horribly wrong,” Norman says.
In 1993, when he was just 22, Tom was left with severe brain damage after a car accident. In her book, Norman writes about his childhood leading up to the accident.
“He had a series of mild traumatic brain injuries (TBI) in childhood, so he was already potentially exposed to some neurological difficulties, and was at high risk of having a more severe TBI,” Norman says.
Norman’s book describes her brother’s time in hospital in inpatient rehab and then in the community. After his injury, Tom suffered with mental health issues and long-term difficulties with substance misuse.
“There was a lack of community support, and poor interactions of social care, which culminated in his suicide in 2004.
“His story is also interwoven with how little we know in terms of how common these problems are, and reflections from my own private practice as a therapist working with people with family members with TBI.”
From the perspective of individuals and their family members, Norman says it’s important to help communicate to them that they’re not alone, and that other people are going through the same experiences.
“And that there are organisations, however few and far between, there to support people, raising awareness people with TBI have when accessing community services.
“It’s also about educating health professionals in community settings and social care settings to identify that they sometimes aren’t able, or don’t have the knowledge, to pick up on the difficulties people with TBI have, which can lead to them falling through the net, as was the case with my brother, with the hope that people will stop falling through those gaps,” Norman says.
Norman says funding is a problem, as well as a lack of knowledge. But the lack of knowledge, she says, is associated with a lack of training, which can be traced back to poor funding. And the infrastructure of adult social care, she says, needs to change.
“In adult social care, it’s become very difficult for people with long term care needs, as social workers are moved from case to case, rather than working on one case for a long time. That disconnect means there’s a constant turnover of staff, from whom it’s difficult to get to know clients and understand their specific needs.”
Because of the lack of support and services for people with TBI, families end of carrying a huge amount of the burden, she says.
Now that Norman has done qualitative, in-depth research, she knows she needs to get quantitative data to ‘show the significant numbers of people experiencing these problems’.
