Supporting families affected by traumatic brain injury

Traumatic brain injury (TBI) can affect anyone and can have a devastating impact on the injured person. However, it isn’t just the injured person who is affected, family members often acutely feel the effects of the injury on themselves and experience a change in their own lives.

TBI is a sudden injury to the brain commonly caused by falls and collisions. It is a major cause of death and disability, with approximately 1.4 million patients attending hospitals following head injury in England and Wales annually, according to National Institute for Health and Clinical Excellence.

TBI survivors can experience a range of difficulties, including physical, cognitive, behavioural and emotional changes. However, it’s not just TBI survivors themselves who experience a change in their lives. Families of survivors are also significantly affected, often having to adapt their lives.

Support for families following a relative’s TBI is limited as Dr Charlie Whiffin, Associate Professor in Pre-Qualifying Health Care, explains:

“While there is growing recognition of the importance of family members in the recovery pathway for the injured person, there is not enough attention being given to how brain injuries change the lives of the uninjured members.”

What is being done to support families?

Change has been very slow when it comes to supporting families and taking their needs into consideration. Through her clinical and academic experience, Dr Whiffin has seen first hand the impact a relative’s brain injury can have on families. Change is something that Dr Whiffin has continually pushed for throughout her career.

Following a brain injury, family members of the TBI survivor are at risk from increased burden, stress, anxiety and reduced life satisfaction. Family members have also reported subjective changes in response to a major life event. With very little support in place for families, it puts them in a vulnerable position, with a lot to cope with on their own. 

A new approach

Storytelling is an approach gaining popularity in neurorehabilitation. Injured people are encouraged to use storytelling as a means of building an identity based on their strengths.

Reconstructing identity after brain injury is considered an integral part of making sense of TBI and the process of adaptating following injury. However, there is limited evidence for how a similar act of storytelling may also help family members to make sense of how they themselves have changed following injury. This is now the focus of a new study funded by the National Institute for Health and Social Care Research (NIHR) Research for Patient Benefit programme.

The NIHR has awarded £140,000 to fund the study led by Dr Whiffin alongside Dr Fergus Gracey (University of East Anglia), Dr Caroline Ellis-Hill (Bournemouth University) and Dr Alyson Norman (University of Plymouth). The study explores whether storytelling, specifically The Life Thread approach, is effective in supporting family-subjective wellbeing and processes of adjustment after a head injury.

The Life Thread approach is based on the Life Thread Model that uses a visual representation of the threads we use to create a sense of coherence and identity.

The study started in March 2023 and uses a qualitative approach through interviews and focus groups. It will involve 20 family members selected from community settings who were injured between two and five years ago. The research will aim to establish if engaging in storytelling is helpful - and how it helps. It will follow with an appraisal of The Life Thread approach as a means of making storytelling easier. 

Anchor Point

Dr Whiffin and colleagues, frustrated at the lack support for families after acquired brain injury, founded Anchor Point in 2020. It is a national association where people with different experiences and knowledge of families affected by brain injury can connect, contribute, inform and improve service provision.

The group is a driver of change and, in 2022, they used their research and lived experiences to respond to the government’s call for evidence for a new Acquired Brain Injury Bill. Anchor Point hopes to see family needs being recognised and addressed within this important policy document. 

Charlie Whiffin smiling

Researcher driven to help the families of traumatic brain injury patients

Dr Charlie Whiffin is carrying out important work on how Traumatic Brain Injury (TBI) affects families.

Find out how Dr Whiffin's journey beganFind out how Dr Whiffin's journey began