On a mission to help children navigate their parent's brain injury

Brain injuries can have a huge impact on families - particularly children - who may struggle to come to terms with the changes they can bring. To help support these families, acquired brain injury specialists at Living With ABI, are developing a new toolkit for brain injury care.

Parents with brain injuries may experience a range of issues such as physical changes, emotional difficulties, and strained relationships with their children.

Brain injuries can often cause changes to facial structure, mobility problems, and difficulty processing auditory information, which can impact children's mental health and wellbeing as they may struggle to understand and cope with these changes.

This can bring with it a number of unique challenges around managing children's emotional wellbeing during the recovery process, including irritability, aggression, and loss, as well as helping them to understand the changes their family is experiencing. 

However, families of brain injury survivors face challenges in accessing support services and face a lack of understanding from mainstream professionals.

Clinical psychologist and Director of Living With ABI, Dr Freddie Byrne, highlights that there is a lack of ongoing support services for brain injury survivors and their families, with services often being commissioned on a short-term basis.

Noting that good practice exists in pockets, Byrne says that overall, current service structures are not set up to prioritise family support, leading to underestimation of children's needs and limited access to ongoing support.

Byrne is now working alongside a team of passionate practitioners to ensure these families are not left behind by developing a new brain injury care tool kit for children, young people, families and professionals.

The Living With ABI team includes Hannah Frith, Associate Professor at the University of Surrey; Sara da Silva Ramos, Consultant Clinical Neuropsychologist at Brainkind; Charlie Whiffin, Associate Professor of Nursing at the University of Derby; and, Jocelyne Kenny, Clinical Psychologist and Family Therapist at Kent and Medway NHS and Social Care Partnership Trust.

The impact of brain injuries on families

According to Living With ABI, there are an estimated 364,000 children affected by parental ABI in the UK. 

The organisation highlights that existing research, including that conducted by its research team, reports that children and young people experience multiple losses, grief, social isolation and having fears of family disintegration following parental ABI.

“After brain injury, parents might be behaving in ways that put themselves or others at risk,” says Byrne. “So the child might be left with a lot of worry about what is going to happen to their parents. 

“Survivors are trying to process something that's very difficult and they may experience identity loss, might not be able to work anymore, or might not have the same friendships anymore, for example.

“The child or other family members' experiences when they try to access emotional support from their parents find that they're not available to them in the same way, which can be distressing and can cause a sense of grief for family members. 

“Not just dealing with a situation in the moment, but also having to process that the parent may be different to how they were before or family life may be very different. That might have happened in a very sudden and very traumatic way, as well. So children might have experiences or symptoms of post traumatic stress disorder, even if they weren't present for the accident itself.”

This can lead to children and young people to experience adverse outcomes including mental health conditions, substance misuse, behavioural or emotional problems and stress.

In fact, around 20% of children and young people affected by parental traumatic brain injury receive specialised psychiatric care by the time they are aged 21, according to Living With ABI. 

Byrne continues: “What we see is that if it's a specialist brain injury service that is commissioned, it is always commissioned for the survivor. 

“There's an amazing community of practitioners who are interested in working with families after brain injury, but on the whole, service structures aren't set up for it - it tends to be seen as something that's extra or based on goodwill of practitioners and service managers.

“And because services are overstretched, there's not always that appreciation of the needs of family members.”

A toolkit for navigating life after a brain injury

Living With ABI has worked closely with children and young people of parents with an ABI to co-develop a new application that will support families following a brain injury that could provide professional support, resources, and coping strategies.

“I think it's really important that we're getting knowledge and expertise from people who've lived it themselves,” says Byrne.

“That might be children, young people, or it might be adults, who, when they were children, had a parent sustain a brain injury, as well as involving experts in the field in terms of psychologists, social workers and other professionals.

“Some of the feedback we had from the early engagement with experts by experience was that it is important to include the voices of people who have experienced this themselves that show that there's some light at the end of the tunnel, or to help foster a sense of hope.”

Living With ABI is working with 15 children/young people, 15 parents or carers and 15 professionals in developing the key messages to include in the application’s resources, and how they should be presented. 

It will then work in partnership with its children and young people advisory group and stakeholder group of health and related professionals, as well as other collaborators to develop the resource content.

While Byrne and his team work to develop this application, he notes that further work is being done to provide holistic care for the families of brain injury survivors.

“We’re part of a group called Anchor Point which is doing amazing work with Parliament to have a brain injury parliamentary strategy in place,” explains Byrne. 

“One of our research team, Charlie Finn, is also doing nice work to try and move towards a family register, where the impact of an ABI on the survivor’s family is measured, as well as what kind of outcomes they are getting over a period of time.

“There's no data for the needs of a population, so I think that starting to have it as something that we're registering and creating a body of evidence for is very important.”

Byrne highlights further studies looking at family support, continuity therapy and multifamily therapy that can help support brain injury survivors and their family network.

“Multifamily therapy can be a really nice model for supporting families to connect with each other,” says Byrne.  “I think that's where we need to move towards, and we also need best practice guidance - which is something we're moving towards with Anchor Point. 

“We are developing best practice guidance in consultation with professionals and experts, and creating a model where professionals engage in training so they have a sense of the needs of families, and - ideally - having specialist therapies available for families to access as and when they need them. Not just within six weeks of a brain injury, but across the whole lifespan.”

Living With ABI will share its findings from the application development with specialist brain injury charities which support children, young people and their families, as well as regional specialist networks, teachers and social workers.