Disability and family coping

So you have a family member with a brain injury – how is it for you?

The Brain Injury Association reports that 90 New Zealanders sustain a brain injury every day. This means that a significant number of families in New Zealand have to deal with the effects of a brain injury every day. When we talk to family members they report that rather than problems with physical disability or memory, it is the changes in their loved one’s personality that are the biggest issues to deal with. In particular changes like anger outbursts, grumpiness and irritability, impulsiveness so that little thought is put into consequences of ones actions, being unable to see the other person’s point of view and self centredness. These are some of the issues that family members struggle with the most after brain injury.

Issues for family members:

Some of the other issues family members report include higher rates of anxiety and depression, feeling confused and anxious about brain injury symptoms and not knowing what to do or how to react, having strong or mixed feelings about the person with the injury, feeling uncomfortable or trapped living with a ‘stranger’, feelings of guilt (e.g. ‘survivor guilt’), loss of relationships and social isolation, and lack of support. This last point is a difficult one in that families often say they have difficulty knowing where to go to for help and may also not feel very comfortable asking for help.

What the research shows:

Research shows that caregivers and family members play important roles in the rehabilitation process following brain injury. This means when families feel supported the person with the injury does better. The family therefore is a critical source of support for the person with the injury. Understanding the factors that influence family coping may help improve rehabilitation interventions and lead to better outcomes for people after brain injuries. Studies have also shown that family burden is at its highest level just prior to hospital discharge with a high rate of both stress and strain in caregivers of individuals with brain injury during the transition phase from hospital to home. It has been argued that high levels of caregiver and family burden may be understood as a response to role changes and to the emotional, practical and financial difficulties faced by the family immediately prior to and following discharge home. This, therefore, appears to be a crucial time for health professionals to provide support and information to families. Unfortunately support is often minimal at this time, with families left to cope on their own, and with little preparation for and awareness of the long term implications of caring for someone with a brain injury. This can then result in increasing stress and difficulties over time for everyone.

Where can families access support?

It is clear that family members can provide a critical support role and the well-being of the family system has been linked with better injury outcomes. However most family members say they are unfamiliar with brain injury, and one coping strategy is to access information about expected brain injury recovery and ways to cope with injury related changes. Education helps to understand the functioning of the person with a brain injury, the support needed and promotes informed decision-making. If you are struggling with a family member who has a brain injury and would like more support there are a few options you could consider. First you could talk with your GP. You could also make contact with the Brain Injury Association (www.brain-injury.org.nz/) and find out how to make contact with the Canterbury liaison worker. Alternatively you could make contact with one of the clinical psychologists at www.christchurchpsychology.co.nz for more support and advice.


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