In the United Kingdom, Acquired Brain Injury (ABI) is the leading cause of death and disability (All Party Parliamentary Group, 2018). Advances in neurosciences, medical technology and improved implementation of national guidelines have increased survival rates.
However, ABI survivors may have severe long-term disability caused by a range of physical, psychological, and emotional impairments. ABI also has a significant effect on family relationships, lifestyles and quality of life.
Isolation was the theme of the recent Brain Injury Awareness Week. Many of us may find ourselves relating to this, as we isolated from our friends and families when the nation was asked to stay at home.
But imagine feeling isolated every day from yourself, your family, and society. My research into the effect of traumatic brain injury on families in the first year after injury showed that they became misaligned as members lived different realities (Whiffin 2012; Whiffin, 2019; Whiffin 2014).
The illustration below represents this misalignment where the injured person moves out of a shared experience and finds it difficult to re-integrate post-injury causing isolation with the family itself.
Similar studies have also shown these ‘conflicts and gulfs’ between members (Couchman, 2014) damage family relationships and contribute to the many intangible and ambiguous losses reported post-brain injury (Abrahamson et al., 2016; Kreutzer et al., 2016).
In a more recent meta-synthesis of qualitative research (under review) we examine the presence of isolation between family members and wider society, and the pain and distress this causes.
Non-physical loss following brain injury is a common experience; for example, a spouse can feel married, but living alone. Family members also report being isolated from society, including professionals, who are perceived as lacking insight and understanding of this complex disability.
Furthermore, families also report a lack of support from healthcare professionals, which compounds this sense of isolation; there is a reason brain injury is called a ‘hidden disability’.
The experience of families
For families affected by brain injury, support is inconsistent at best and what is available is often inadequate for their needs (Holloway, Orr, Clark-Wilson 2019).
Therefore, the Covid-19 pandemic presented a double blow to an already isolated population as services reduced or disappeared entirely. Talking with families and professionals would suggest that their needs did not diminish during this period. Instead, their needs increased, and many families faced significant challenges living in lockdown with a brain-injured family member.
This year, I and other leading experts, were interviewed by Royds Withy King, a law firm specialising in personal injury, about the impact of the pandemic on those with brain injury and their families. You can watch the video here.
This is one such account of a lived experience from someone who sustained a TBI:
“I received my brain injury doing my hobby which I love, which is mountain biking. After my operation, which was nearly nine weeks later, it was discovered I had a Bi-Laterial bleed with Coning [bleeding that causes pressure and swelling where the brain is forced through the base of the skull].
“[I] was told [I] would make a full recovery and discharged. I was so grateful to still be alive, being 67 years old, but the next few months revealed a completely different me.
“I was having frustrated outbursts, nothing physical, but abusive all the same, damaging to my relationship. Also, very short memory problems. After six months, occupational health decided I was not employable. This was January 2020.
“And then along comes Covid, when I am just adjusting to my new circumstances. This was a major change, to everyone going into lockdown, but it was a real pressure on top of all the other changes. My poor wife was living with a different husband, who needed watching over all the waking hours, because during lockdown more symptoms appeared in my behaviour: impulsive, fearless stupid acts, short temper, etc etc. It was a complete change for her, and I was hardly aware of the changes. I thought I was my normal self.
“Then a good friend recommended Headway, and virtually our lives have changed again. It gave both of us an understanding of our situation and the hidden disabilities that come with a TBI [Traumatic Brain Injury].”
Supporting people with brain injury
Headway is the national brain injury charity and, since 2019, I have had the absolute privilege to work with Headway Derby and become a Director and Trustee for this very special organisation, which provides community support for people and families following brain injury through a range of complementary projects and services.
Headway Derby have continued their support for the brain injury community, quickly moving services and support online with a philosophy of #closednotclosed. However, we know just how big the gap in service provision is for families, even before lockdown.
Therefore, working with Headway Derby led us to establish a special interest group called ‘Anchor Point’ for those passionate about improving the lives of families following brain injury.
I am proud to say that we are now supported by the universities of Derby and Plymouth, Headway UK, and other organisations supporting people and families after brain injury: the United Kingdom Acquired Brain Injury Forum, Head First, the Child Brain Injury Trust and Royds Withy King.
We will be launching the group officially at the Ahead Together conference in September, where I will also be speaking about family identity post-injury with Fergus Gracey, Clinical Associate Professor at the University of East Anglia.
Should you want to find out a little more about what the group is about you can go to our LinkedIn page now.
As we emerge from our period of national isolation spare a moment to consider those who cannot escape and whose isolation continues.
Perhaps volunteer for your local Headway branch, contribute to a fundraising campaign or simply think for a moment that the person in the street who seems to be acting a little strange may actually have a brain injury, and show them a little compassion, patience and kindness.
Abrahamson, V., Jensen, J., Springett, K., & Sakel, M. (2016). Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: A qualitative study. Disability and Rehabilitation, 39, 1683–1694. doi:10.1080/09638288.2016.1211755
All Party Parliamentary Group for Acquired Brain Injury (2018) Acquired Brain Injury and Neurorehabilitation: Time for Change, UKABIF.
Couchman, G., McMahon, G., Kelly, A., & Ponsford, J. (2014). A new kind of normal: Qualitative accounts of multifamily group therapy for acquired brain injury. Neuropsychological Rehabilitation, 24(6), 809–832. doi:10.1080/09602011.2014.912957
Holloway, M. Orr, D. & Clark-Wilson, J. (2019) Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK, Brain Injury, 33:4, 401-411, DOI: 10.1080/02699052.2019.1566967
Kreutzer, J., Mills, A., & Marwitz, J. ( 2016). Ambiguous Loss and Emotional Recovery After Traumatic Brain Injury. Journal of Family Theory & Review, 8, 386–397.
Ownsworth, T., & Haslam, C. (2016). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26(1), 1-35. doi:10.1080/09602011.2014.977924
Whiffin, C.J., Ellis-Hill, C.E., Bailey, C., Jarrett, N. & Hutchinson, P.J. (published online 2017) We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury., Neuropsychological Rehabilitation, doi.org/10.1080/09602011.2017.1387577
Whiffin, C.J., Bailey, C., Ellis-Hill, C., Jarrett, N., Hutchinson, P.J., (2015). Narratives of family transition during the first year post-head injury: perspectives of the non-injured members. Journal of Advanced Nursing 71, 849–859. doi:10.1111/jan.12551
Whiffin, C. (2012) A study of family transition in the first year post-head injury: perspectives of the non-injured members. University of Southampton, Faculty of Health Sciences, Doctoral Thesis