By Dr Alyson Norman, associate professor at the University of Plymouth and deputy chair of Anchor Point.
According to Headway UK, there were 356,699 admissions to hospital due to an acquired brain injury in 2019-20201. While some individuals do make a full recovery, for many a brain injury marks the beginning of a life-long struggle.
This struggle is not just felt by the individual with the injury, but often by the whole family around them.
My story
In 1993, my brother ‘Tom’, aged 22, had a serious car accident that led to a severe brain injury. He was in hospital for over 6 months and had to learn how to eat, talk and walk again.
His long-term injuries included wide-ranging memory problems, difficulties making decisions, poor concentration, slowed speed of mental processing, mood swings and depression.
At the time of my brother’s accident, I was only 12, but despite this I was actively involved in his rehabilitation from the moment he left hospital.
As an example, I was involved in helping him to learn to walk again without relying on his wheelchair for short journeys by making regular trips to his flat to walk with him to the local shop.
This was something that we as a family, and my brother as a brain injured person, had no support with as community rehabilitation services were not available.
Impact on families
My story is sadly not that unusual. While medical advances have improved the likelihood of survival after brain injury, the health and social care systems required for long term care are not appropriately staffed or funded to provide adequate support.
Inevitably family are expected to carry the burden of caring for their loved one, often with little to no support or education around brain injury (2).
There are an estimated 5.4 million people in England who provide unpaid care for a friend or family member (3) (reference), saving the economy an estimated £132bn per year (4).
Caring for an individual with physical needs is difficult but the complexity of supporting someone with cognitive impairments, especially those with impairment to executive function such as decision making make assisting those with ABI a unique challenge.
The physical and mental impact on carers is significant; Headway UK report just 24 per cent of brain injury carers are satisfied with their health.
Conversely, a worrying 8 per cent are ‘very dissatisfied’ with their own health (5) and 59 per cent of carers are showing signs of clinical depression with 21 per cent in the severe or extremely severe range (5).
Despite this 60 per cent of brain injury carers feel they do not receive adequate support in their caring duties (5).
In comparison to the general population and carers for those with other long-term conditions, including other neurological conditions, rates of burden, stress, depression, anxiety are all higher for ABI caregivers (6-8).
Research shows it is not the physical demands of caring that cause the greatest burden but trying to live with changes in personality, behaviour and cognition (9).
Despite the perceived burden of the caring role families report feeling like they are the only ones who understand the brain injured survivor’s complex needs and can provide the care their loved one requires (10). This responsibility weighs heavily in a world that continually ignores their needs.
Introducing Anchor Point
In September 2021, a new organisation launched, named ‘Anchor Point’. This broad range of clinicians, researchers and family members have come together to focus on making a difference to the lives of families affected by brain injury.
At the heart of Anchor Point, is the concept of ‘ripples’, which refers to how the impact of brain injury is not only on the injured person but ‘ripples’ through the whole family very much like the ripples on a pond.
The team at Anchor Point were originally brought together by Dr Charlie Whiffin from the University of Derby who is now chair of the organisation. I have been privileged enough to be elected as the deputy chair.
We currently have a good social media presence (follow us on Twitter #FamiliesAfterABI) and a landing page on the United Kingdom Acquired Brain Injury Forum’s (UKABIF) website.
Responding to the UK Government ABI strategy call for evidence
Anchor Point is an important organisation because the focus is very much on the family rather than the injured person. As such we felt it important to provide a formal response to the UK Government ABI strategy call for evidence in the summer of 2022.
This article reports on some of the material submitted as part of that call for evidence covering three key areas supported by quotes from family members who have given permission for sharing and Anchor Point’s response can be found in full on the UKABIF website: https://ukabif.org.uk/page/AnchorPoint.
Support for people who care for someone with a brain injury or other brain condition
This means emotional support, financial support, education around brain injury and the care needs of their loved one.
It also includes involvement in decision-making around the care for an individual with ABI as family members often have a better understanding of the complexity of their loved one’s difficulties than professionals.
They also need to be factored into the decision-making process given they will often be responsible for supporting any care needs.
“I wasn’t given any information, practical or otherwise, on how to care for him, and no indication as to how labour intensive it was going to be. No-one even thought to ask if it would be possible for me to do it; there was a massive assumption made that I would be able to drop everything and turn myself into a de facto nurse for an unspecified amount of time” [Wife]
It is quite remarkable that despite decades of research demonstrating effective family interventions and the continued recognition of the importance of family centred approaches, health and social care still limit family involvement.
“…when we were in a hospital setting the rest the family other than [my injured son] would have benefited hugely from advice and support on how to cope with the situation and the importance of looking after ourselves .. I truly believe if we had had this we would not have needed mental health support later. When we left hospital/rehab we had virtually no support and no signposts as to what we needed to do at a time when we were emotionally at an all-time low.” [Father]
Current support strategies are either directed at the family member’s ability to enact carer responsibilities or structured and didactic interventions for problematic psychological responses. In contrast studies have shown the importance of subjective changes experienced by family members in understanding recovery and rehabilitation (11-13).
Yet there is very little which aims to help families to understand and come to terms with the impact of ABI on themselves and their family to relieve their trauma, resolve their grief, or prevent their suffering.
We simply do not talk enough about the impact that brain injury has on family members in their own right and therefore the support for them to adjust to their own lives being different, the process of coming to terms with what they have lost is rarely addressed.
Support which addresses these more subtle, yet enduring, responses to ABI can reduce the negative psychological and emotional consequences and improve the wellbeing of the whole family system and their wellbeing is key.
“Leaflets and coffee mornings don’t help with family isolation” [Wife]
“It took five years before I was able to talk about my own journey instead of his and be able to openly share that the lack of services nearly destroyed me” [Wife]
Making sure that everyone is treated fairly and gets the support they need
Although studies show the significant impact on carers, research also demonstrates this impact reaches beyond primary carers to those in secondary and tertiary roles (14).
Furthermore, all family members can be severely traumatised post-ABI, with an inability to process their experiences in a meaningful way (15-16).
Siblings for example report almost double the rates of depression than would be expected in a normal population despite providing more affective rather than instrumental support (17).
“Following the brain injury of my brother…my family as a whole received no support in managing life post-injury. We were given limited information about what brain injury meant and were left to figure it out ourselves. […] My life changed completely following his accident and I had to grow up really quickly so I was in a position to help him and my mum. This was never acknowledged by health professionals, it was never considered in social care reports or assessments”. [Sibling]
Brain injury has a significant negative effect on family relationships, lifestyles, and quality of life (18). As a consequence, the structure of family members’ lives change beyond recognition. Employment opportunities reduce and family commonly become isolated from friends, relatives, and wider society (19).
Family members lose themselves and their relationships are damaged. Families become fractured and fall apart with rates of separation and divorce reported as falling anywhere between 15 – 78 per cent (20).
Assumptions should not be made about who is in greatest need or when this support is required. The life-long complex nature of ABI rehabilitation means that those who are affected have different needs at different times and these needs do not map easily onto six- or twelve-week interventions, and neither are they restricted to the first two years post-injury. Research shows that if families are to truly have the support they need their needs must be recognised as long-term and vacillating throughout the life-long ABI pathway (21).
“Everyone looked at my Dad and would say ‘oh isn’t it great that he recovered!’. Nobody else saw the temper tantrums, the memory loss, the inability to be there for me in the way he had been before”
[Daughter]
Making sure that research helps to make people’s lives better
As an organisation that includes academics, professionals, and those with lived experience we would like to advocate for progressive, world leading, well-funded research that goes beyond lifesaving interventions into how to live a full and meaningful life for the whole family post-ABI.
We need an evidence-base that drives change to improve the lives of everyone post-ABI and lead to demonstrable change in practice.
Research priorities should include the effectiveness of family interventions and specialist / non-specialist services to support processes of wellbeing and adjustment and from these there must be a clear pathway to impact where the NHS is able to provide interventions that have been shown to improve the lives of families after ABI.
“Despite years of research documenting the costs and harms to family members post ABI, both healthcare providers and the Government have shown that left to themselves no change will be forthcoming” [Wife]
My story and conclusion
From my own perspective, as a family we received no support in understanding brain injury and what life might be like longer-term. We had no support from organisations in terms of benefits, signposting to brain injury services, and certainly no support for us on an emotional or psychological level.
The consequences of this are far-reaching for family members and it is time that rehabilitation and care pathways for those with ABI adopt a family centred approach that includes rather than actively excludes family members.
Since, my brother’s death in 2014, I have become increasingly used to telling my brother’s story and the catalogue of errors that led to his death by suicide. Yet, what I still struggle to tell is my own story within his.
The story of a 12-year-old girl who overnight had to grasp the enormity of her brother nearly dying, her mother being broadly absent for months as she was sat at a bedside in hospital and then on his discharge from hospital being plunged into being a young carer. All this with no emotional support, and no training.
Nobody even had a conversation with me about how I might be feeling. I was a carer for my brother for 20 years and within that there was ongoing emotional trauma of dealing with someone with executive impairment, whose life was often chaotic and hard to manage.
This brought with it a huge burden of care even though I did not once have to wash or dress him. I experienced intense ambiguous loss for the person I had known before and had to work hard in getting to know this new version of my brother.
And probably worst of all in all that was the sense of isolation. Outside of the family, nobody could truly understand the impact that all this was having on me day to day. It is these ripples of brain injury that go unnoticed and resonate over time and it is because of these ripples that professionals must adopt a family centred approach to ABI.
References
- Headway. Statistics. https://www.headway.org.uk/about-brain-injury/further-information/statistics/.Nottingham: Headway UK; 2021
- Odumuyiwa T, Kennedy M, Norman A, Holloway M, Suffield F, Forrest H, Dicks H. Improving access to social care services following Acquired Brain Injury: A needs analysis. J Long Term Care. 2019; 2019: 164-175
- Office for National Statistics. 2011 Census Analysis: Unpaid care in England and Wales, 2011
- Carers UK. Facts and figures – Carers UK [Internet]. [cited 2022 Jun 5]. Available from: https://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures
- Headway UK. Supporting carers [Internet]. 2012 [cited 2022 Jun 6]. Available from: https://www.headway.org.uk/about-brain-injury/professionals/gps/supporting-carers/
- Jackson D, Turner-Stokes L, Murray J, Leese M, McPherson KM. Acquired brain injury and dementia: a comparison of carer experiences. Brain Injury. 2009/03/21 ed. 2009 May;23(5):433–44.
- Tramonti F, Bonfiglio L, Bongioanni P, Belviso C, Fanciullacci C, Rossi B, et al. Caregiver burden and family functioning in different neurological diseases. Psychology, health & medicine. 2019;24(1):27–34.
- Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clinical Rehabilitation. 2017;31(1):45–60.
- Connolly D, O’Dowd T. The impact of the different disabilities arising from head injury on the primary caregiver. British Journal of Occupational Therapy. 2001;64:41-46.
- Holloway M, Orr D, Clark-Wilson J. Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Inj. 2019/01/22 ed. 2019;33(4):401–11.
- Whiffin CJ, Bailey C, Ellis-Hill C, Jarrett N, Hutchinson PJ. Narratives of family transition during the first year post-head injury: perspectives of the non-injured members. Journal of advanced nursing. 2014/10/24 ed. 2015 Apr;71(4):849–59.
- Whiffin CJ, Ellis-Hill C, Bailey C, Jarrett N, Hutchinson PJ. 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. 2019;29(8):1256–72.
- Yeates G, Henwood K, Gracey F, Evans J. Awareness of disability after acquired brain injury and the family context. Neuropsychological rehabilitation. 2007/04/25 ed. 2007 Apr;17(2):151–73
- Perlesz A, Kinsella G, Crowe S. Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers. The Journal of Head Trauma Rehabilitation. 2000/04/29 ed. 2000 Jun;15(3):909–29.
- Whiffin CJ, Gracey F, Ellis-Hill C. The experience of families following Traumatic Brain Injury in adult populations: A meta-synthesis of narrative structures. International journal of Nursing Studies. 2021;Published ahead of print.
- Townshend, J., & Norman, A. (2018). The Secondary Impact of Traumatic Brain Injury: An Interpretative Phenomenological Analysis of the Experiences of Family and Friends. The Family Journal 26, 77-85
- Degeneffe CE, Burcham CM. Adult sibling caregiving for persons with traumatic brain injury: Predictors of affective and instrumental support. Journal of Rehabilitation. 2008;74(3):10.
- Verhaeghe S, Defloor T, Grypdonck M. Stress and coping among families of patients with traumatic brain injury: a review of the literature. Journal of Clinical Nursing. 2005/08/17 ed. 2005 Sep;14(8):1004–12.
- Wood RL, Liossi C, Wood L. The impact of head injury neurobehavioural sequelae on personal relationships: Preliminary findings. Brain Injury. 2005;19(10):845–51.
- Wood RL, Rutterford N. Psychosocial adjustment 17 years after severe brain injury. Journal of Neurology, Neurosurgery & Psychiatry. 2006;77(1):71–3.
- Norman A, Curro V, Holloway M, Percuklievska N, Ferrario H. Experiences of individuals with acquired brain injury and their families interacting with community services: a systematic scoping review. null. 2022 Mar 4;1–13.
