An over-reliance on families to provide care and the need for long-term access to rehabilitation have been highlighted in a new research report on living with Acquired Brain Injury.
Commissioned by Acquired Brain Injury Ireland (ABI Ireland) and launched today, the report, Getting my Life Reset, aimed to capture the impact and experience of brain injury and allow a wider understanding of living with acquired brain injury. Rarely, if ever, do we hear the voice of the person living with a brain injury.
Barbara O’Connell, CEO of ABI Ireland said:
“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 brain injury specific services and the difficulties in trying to access appropriate services. There is also a clear message of hope from the research that people living with brain injury display the ability to adapt and be resilient even when faced with such adversity”
The findings, based upon detailed interviews of people with acquired brain injury, highlights that access to professional rehabilitation services is critical for recovery and access needs to remain available in the long-term as needs change.
The report also identified an excessive burden on families. While families provide essential support and care, they are not skilled and equipped to provide the rehabilitative interventions which have a major impact on people’s recovery and outcomes.
Minister of State with special responsibility for Disabilities, Finian McGrath attended the launch and urged policy makers to read this report and be inspired by the lived experience of people with acquired brain injury.
“The importance of family emerges particularly as the social circle of the person becomes depleted by their injury. Families must be supported by the provision of services. I am happy to say that the Programme for a Partnership Government includes a commitment to publish a plan for advancing Neuro-Rehabilitation Services in the community.”
Brian Hogan from Limerick was also in attendance. He was assaulted on a night out in 2009 and had a major bleed in his brain.
“It has been six years since I acquired my brain injury and it has been a very been a challenging time. However, I am very determined. I give talks to schools, community groups and other interested parties about my story to educate about the dangers of what can happen due to a head injury on a night out”.
“I strongly welcome this research – which tells the story of people’s lived experiences. It tells policy makers and service providers that better access to rehabilitation services greatly helps people to live the best lives they can. It is neither fair, not often in the best interest of rehabilitation, to over burden families. An ABI is a complex condition and health services need to be able to adapt to the different needs of people at different times.”
Stephen Shorthall fell down a flight of stairs in 2014 and went into an induced coma. He highlighted the major benefit of professional rehabilitation which he received.
“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.
“Many people with brain injuries go without therapies which are not expensive, in part due to lack of availability, and in part because they may not be able to speak up, or not able to speak at all.”
Report Co-author Dr. Stephen Walsh said: “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 re-integration and recovery is attributed to a combination of strong psychological resources, social support and appropriate professional services.”
Five key themes in the report are:
1. The role of families in supporting those affected by ABI, particularly as a consequence of their often-reduced social worlds
2. The difficulties encountered by those affected by ABI in navigating and securing support services
3. The variability and complexity of the needs of those affected by brain injury
4. The role of group activity as a means of social engagement and meaningful doing
5. Adaptation and resilience of those living with brain injury.
To download the report in full click: https://www.abiireland.ie/wp-content/uploads/2017/05/ABII-Getting-Reset-Report.pdf