Research in the area of Brain Injury: Why are families important
By Alyson Norman
Today I write about an organisation that I am the Deputy Chair of — Anchor Point, and will provide a very quick overview of the research in the field of families after brain injury.
Anchor Point is an unincorporated UK National Association of strategic influencers committed to change that will improve the lives of families after Acquired brain injury (ABI).
The origin of the name ‘Anchor Point’ was in the lived experience of family members feeling ‘all at sea’ with nothing to hold on to. Like ripples in a pond, family members have little to stabilise their lives after ABI in a world where they feel increasingly misunderstood or actively ignored.
Within Anchor Point there are a series of different ‘working groups’ that focus on specific activities. One of these is the research group. This consists of a small number of individuals who are actively engaged in research within the area of brain injury, with a specific focus on family members. So what has the research field in this area got to say?
Well, in a nut shell it highlights the major impact that brain injury has on family members — the injury may occur for the individual but the impact ripples out across the whole family. Each and every family member can be affected to a lesser or greater extent. This can be in the arena of caring responsibilities in the more common use of the term — looking after the personal care needs of an individual, or caring for the individual in a more ‘project management’ way — planning their day, ensuring they attend appointments, going to appointments with them, providing structure in daily living, transportation etc. It can also include changes in relationships within the family and communciation within and acrsss families. All of these changes are felt deeply by family members, leaving them feeling isolated.
The impact of these changes include depression, anxiety and high levels of stress. The research shows that individuals experience ‘ambiguous loss’ — a sense that they are grieving for the person who was while living day to day with the person who still is (a person who may be very different to how they were prior to their injury). The research also tells us that there is limited support to help family members psychologically. Equally, it tells us that there is a lack of practical support for families in the caring responsibilities for their family member.
The research to date has focused very much on what life looks like for family members after brain injury and at the end of this post there is a selection of links to research that may be of interest to anyone who wants to know more about this area. But, the focus in the future of research needs to be on how to improve the lives of family members. We at Anchor Point hope that both individually, and as a collective, we can carry out this research and in the future use the findings to make real and significant changes for family members after brain injury.
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