There is an over-reliance on families to provide care to people who suffer an acquired brain injury (ABI), even though they do not have the skills required for this, a new research report has found.
Around 13,000 people acquire a brain injury every year as a result of, for example, road traffic accidents, stroke, assaults, tumours and seizures.
According to this latest research, which was commissioned by ABI Ireland, there is an excessive burden placed on families when it comes to the care of those affected.
The report based on the research pointed out that while families provide essential care and support, they are not skilled or equipped to provide the rehabilitative interventions which are key to recovery.
The report also highlighted the need for long-term access to rehabilitation. It emphasised that access to professional rehabilitation services is crucial to recovery, but that access needs to remain available in the long term as the patient's needs change.
The findings are based on detailed interviews of people with ABIs and the report marks the first time that research into peoples' lived experiences of brain injury in Ireland has been published.
According to ABI Ireland CEO, Barbara O'Connell, brain injury is a ‘hidden phenomenon in our society'.
"Rarely, if ever, do we hear the voice of the person living with ABI. This report lifts the lid and gives us an insight into what life is like for people with a brain injury. It illuminates in very clear terms the barriers faced, the lack of services that people contend with and the difficulties in trying to access them," she said.
Stephen Shorthall developed a brain injury after he fell down a flight of stairs in 2014. Speaking at the launch of the report, he emphasised the importance of professional rehabilitation services.
"As important as families are, as mine surely was, there are areas that they cannot cover. Many patients feel burdensome and will not complain in case it is seen as being ungrateful. It cannot be understated how beneficial a professional is. It is somehow more acceptable to express your natural frustrations and fear to a professional than to a loved one," he explained.
He added that many people with brain injuries go without therapies partly due to a lack of availability, but also because ‘they may not be able to speak up or speak at all'.
Also speaking at the launch of the report, Brian Hogan, who acquired a brain injury following an assault in 2009, insisted that it is not fair to overburden families, nor is it in the best interest of rehabilitation.
"Better access to rehabilitation services greatly helps people to live the best lives they can...An ABI is a complex condition and health services need to be able to adapt to the different needs of people at different times," he said.
According to the report's co-author, Dr Stephen Walsh, there needs to be a range of health services available to those affected.
"Given the very different short, medium and long-term needs of those affected by ABI, there is a need for a range of health services and supports for both the individual with ABI and their families. Optimum reintegration and recovery is attributed to a combination of strong psychological resources, social support and appropriate professional services," he noted.
The report, Getting My Life Reset, which was written by researchers at the University of Limerick, can be viewed here
For more information on ABI Ireland, click here