As part of Headway’s ‘A Life Re-Written’ Campaign, Headway launched surveys in January 2024, asking survivors of brain injuries and their carers’, to provide their views on the difference in their lives before and after brain injury, and what contributed to those changes. The aim of Headways’ surveys was not only to raise awareness of the impact of a brain injury, but also to provide survivors and carers with a platform to voice their experiences.
The surveys were completed by 3693 people, 65% survivors and 35% carers, aged 18-61, from people who had lived with the injury for fewer than 6 months to over 20 years, with brain injuries ranging from mild to severe. The questions put forward related to aspects of life most typically affected by brain injuries including, relationships, social life, employment, mental health, spirituality, as well as questions around attitudes to any life changes experienced.
One of the big questions put forward to survivors and carers was whether the brain injury had changed their lives. A resounding 96% of survivors and 95% of carers confirmed it had. Over half (54%) of survivors and half of carers stated it had changed for the worse.
Brain injury survivors felt that their lives had changed for the worse in a number of ways including, a loss of employment and the financial implications of this, the breakdown of relationships along with social isolation, a loss of skills impacting the ability to work and day to day activities, a loss of independence, mental health issues and loss of personal memories.
Carers also felt that their lives had changed for the worse for a number of reasons, some of which included the need to take on practical caregiving responsibilities, the impact on employment, having to deal with legal proceedings and securing care packages, experiencing a change in their role/relationship with the survivor, the impact on socialising, the impact on mental health, grieving the change in circumstances and worry about the future and the impact on their loved one’s life.
Headway also found that 39% of survivors and 42% of carers felt that as well as the negative impacts experienced, they had also experienced some positive changes to their lives. These positive changes included the development of a changed perspective on life and their priorities, a renewed appreciation for life, an improvement of personal relationships not only with their loved ones but also the development of new relationships with peers, the development of empathy and self-confidence, healthier lifestyles and the emergence of new opportunities, including career changes and the chance to pursue new hobbies.
The survey also found that 4% of brain injury survivors and 2% of carers felt that the injury had changed their lives completely for the better.
The key headline finding of the surveys were:
- Over three quarters of brain injury survivors (78%) have had to change their life goals because of their brain injury.
- Around 70% of brain injury survivors and carers report that their mental health is worse after brain injury, with anxiety and depression being highly reported.
- 60% of brain injury survivors experience a worsened social life after their injury.
- 67% of carers have had to change their life goals because of the injury.
- Around a third of brain injury survivors (34%) have developed new skills since their injury.
- 50% of carers have developed new skills since the survivor sustained their injury.
- 52% of brain injury survivors have tried new activities since their brain injury that they had not considered before the injury.
As Headway have eloquently put it in their report, “…through their [survivors and carers] powerful and moving testaments shared within this report, so many survivors and carers have shown that even though a life can be re-written, there is still life after brain injury.”
This article is but a snapshot of what the survey illustrated, the quotes from the brain injury survivors and their carers’, plus the in-depth statistics and comments on the matter, makes this report truly worth a read. You can find the full report at abi-week-2024-a-life-rewritten-an-exploration-into-the-ways-in-which-life-can-be-re-written-after-brain-injury.pdf (headway.org.uk)
Need support with your mental health after brain injury?
The Headway helpline offers a free and confidential support service to help anyone experiencing the effects relating to brain injury. Freephone: 0808 800 2244 | Email: [email protected].
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More information about the campaign – A Life Re-written – brain injury survey | Headway
By Rebecca Higgs
