The importance of family after brain injury

The impact of a brain injury has been likened to throwing a pebble in a pond. The ripple effect expands to partners, friends, family, carers, work colleagues and the wider community. There will be changes in relationships and altered social networks for both the person and their family.

Sometimes, family members can experience as great or greater distress than the injured person. The sudden and massive disruption in everyday life and family relationships are likely to have a profound impact.

It is important to recognise that recovery is a process, and each stage will bring its own hopes, joys, as well as challenges and needs.

It is natural for people to put themselves last when a family member is in hospital, particularly in life-threatening situations. It is important for families to think about their own needs at this time and accept offers of help. Accepting practical help from friends who can step in to take care of children or daily household tasks is advised. Some might coordinate and communicate on a carer’s behalf.

A supportive family can be an important part of care and rehabilitation. Family engagement in rehabilitation can improve outcomes for people with brain injury. Once the injured person is medically safe, and has been moved to a rehabilitation centre, families can find or start to restore some normality. Friends of the family will need to show patience, as traumatic events cause preoccupation and exhaustion. There may be some comfort in being with other families in the rehabilitation unit who are going through similar experiences.

Family units are often the primary source of financial and accommodation support. When the person with a brain injury moves back into family life and begins to renegotiate his or her social world, the family will begin to redefine their world as well. There will be a readjustment period.

For many people who sustain a brain injury, returning to the family home is the most desirable outcome for both them and their families and in many cases, the only viable option. However, this can represent a significant loss of independence and self-reliance. Challenges in this stage can lead to family crises and relationship breakdowns if not understood.

Brain injury can have a significant impact on the financial circumstances of the entire family, if the injured person was the main income earner, or if carer responsibilities restrict employment opportunities. Homes may also need extensive and costly modifications (although if the person with brain injury is able to access the National Disability Insurance Scheme, they may receive funding for modifications).

Depending on the severity of the injury, primary carers may find it difficult to leave their loved one and go out. They may want a friend or two to visit, but even that may feel like it is too much. Some friends may feel uncomfortable with the difference they observe in the person with the brain injury and the carer. In times of grief, often friends can find it difficult to know what to say. Educating friends about the injury can alleviate some of this discomfort.

It helps to seek out support groups and other families who are in similar situations to find some social support.

Future plans may be put on hold or altered while the family readjusts to social and financial consequences. There may be personality and behavioural changes in the injured person which change the family dynamic.

Partners: Partners of people with brain injuries will often be affected by taking on extra responsibilities: becoming the sole wage earner, running the house, making most of the decisions and providing support to the person with the injury. Changes in their sexual relationship can occur.

Children: Children may be confused and need time to understand why their parent has changed including why they need care, why they walk or talk differently, and why they don’t remember things. This can lead to acting out, emotional problems, or relationship difficulties. Both injured and non-injured parents can be affected by negative behaviour of their children, particularly when stress is already heightened, with relationship breakdowns and depression being reported as a result. Patience and communication is key so the child fully understands what is happening in their family life.

Friends: Unfortunately, friends and friends of family members can disappear at a time when the person most needs their support. It is common for people who have spent a long time in hospital to feel that they have missed out on a lot of experiences with their friends and that they now have trouble relating to them and sharing their interests. They can feel very socially isolated as a result. Supportive friends learn to adjust their expectations of the person with the injury and seek new activities for spending time together, e.g. watching a game of sport instead of going to a nightclub.

Support Groups: Social support has been identified as an important contributor to wellbeing for people following brain injury. With old relationships being altered, the person with the brain injury may wish to meet other people in similar situations by joining a specialised group rehabilitation program or a less structured brain injury social group. This might also apply to carers and family members who can connect with other like-minded people.

Contact Synapse to join online and in person peer support groups.