2019 Head First Conference
The 2019 Head First Conference Highlights Interventions and Evidence Based Insights that are Helping Families of ABI Survivors.
If no-one knows what can happen to a family after someone they love suffers a brain injury, then how can anyone help them? The time-worn tea and sympathy approach just doesn’t cut it when you’re in the throes of trying to come to terms with life with an ABI survivor.
Enter Dr Charlie Whiffin, a Derby University researcher and lecturer, who is also a registered adult nurse with experience on acute neurosurgical wards. She earned her PhD studying what happens to families in the aftermath of head injury.
And she was one of several specialists sharing their knowledge at the 2019 Head First Conference, supported by Krysalis this month, where around 400 delegates gathered to learn more about understanding how families are affected, and how to effectively support them.
“For those families arriving in hospital, you haul them into an acute setting and they sit by the bedside not knowing whether their family member will live or die,” she told the conference in London. And then, she added, after treatment, “we dump them back home and support all the rehabilitation needs of the injured family member.”
But what of the non-injured members?
Dr Whiffin’s study focused on three families over a year’s period. And what became clear, apart from the ‘fear, helplessness, and/or horror’ that all of them felt at varying degrees, was that ‘the first year post-injury was a turbulent time of constant renegotiation’.
As her study (1) points out: ‘The injury may mark the beginning, but as the ripples radiate through family life, head injury has the potential to affect the lives of all family members in a number of complex ways.’
So, what might be expected to affect families in the aftermath of an Acquired Brain Injury?
Dr Julius Bourke, consultant neuropsychiatrist and senior lecturer at Queen Mary University of London, flagged up one of the common consequences to conference delegates: Post Traumatic Stress Disorder, an anxiety disorder caused by very stressful, frightening or distressing events that can manifest itself with a variety of symptoms, including:
- re-experiencing the trauma in flashbacks or nightmares
- negative thoughts
- feelings of guilt, shame or isolation
- self-harming or abusive behaviour.
Dr Bourke called for greater ‘psychoeducation’ to mentally prepare families for the road ahead, an appeal echoed by Dr Giles Yeates, clinical neuropsychologist at Buckinghamshire’s Community Head Injury Service, who told the conference how couples therapy often helped too in keeping families strong.
Dr Yeates also highlighted other difficulties faced when roles within the family change as a result of a head injury, and how non-injured family members may also have to cope with the ‘ambiguous loss’ of a loved one; when they are the same person on the outside but not on the inside.
Dr Howard Fine, Paediatric Neuropsychologist at Recolo UK, painted a child’s eye view of ABI in the family, and urged everyone involved in their support to “take a lifetime perspective”.
“Rehabilitation must involve the whole family,” he said. “We need to give them an idea of what to expect next.”
But what should families expect from the experts trying to help them?
Conference chair, Dr Mark Holloway, a Head First brain injury case manager who has worked for over 25 years with ABI survivors and their families and has studied how the ‘lived experience’ of families is affected by ABI, points to the need for ‘expert companions’ who can offer guidance that adapts in line with the changes the families are experiencing.
‘The knowledge needed for the relative’s own transformative journey of healing needs to be co-created….to support the generation of a new and altered, but coherent, social identity,’ he advises. (2)
‘Relatives state, directly and indirectly, that what they value is a fellow traveller with expertise who accompanies them through the liminal spaces that brain injury brings, and helps to explore new truths.’
In a more recent study (3), his findings show that support offered to families varied significantly in availability and quality and, worse still, that poor levels of support isolated families and made their lives even harder.
‘Such services do not see a family member as a client too; affected, and now with increased responsibilities. Greater understanding of the lived experience is needed to support more effective responses to both them and the individual with ABI, integrating services and families to improve quality-of-life.’
So is there anything else being done to help the families?
‘Humanising’ acute care and support practices could prove crucial in helping families rebuild their lives after an ABI injury, according to Dr Caroline Ellis-Hill, a senior lecturer at Bournemouth University.
Dr Ellis-Hill is researching the benefits of new rehabilitation techniques, based on concepts such as the ‘Life Thread Model’ and ‘lifeworld’. These approaches, involving narrative therapy, aim to heighten understanding between families and service providers by combining their experiences of what makes them feel human.
And other experts are investigating other avenues too, including how yoga and Thai Chi can be incorporated to provide a more holistic response to a family’s difficulties.
*More information on those ideas, and a closer look at some of the research coming soon to Fresh Thinking!
(1) C. J. Whiffin, C. Bailey, C. Ellis-Hill, P. J. Hutchinson and N. Jarrett, "Narratives of family transition during the first year post-head injury: perspectives of the non-injured members," Journal of Advanced Nursing, 2015.
(2) M. Holloway, "Acquired brain injury: the lived experience of family members.," University of Sussex, 2017.
(3) M. Holloway, "Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK," 2019.