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A severe traumatic brain injury (TBI) alters the ability to communicate decisions and choices to others clearly, affecting the wellbeing of an individual. It is important to understand the experiences of young people making decisions after injury, in order to determine the best strategies for decision-making participation.
Supporting the decision-making process for young people with a disability helps to ensure this group of people can participate in their community and every day activities, offering a better quality of life.
We asked some of those who will be speaking at the 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June to provide an insight into the work that is being done to ensure this group has greater choice and control in terms of their support options.
In this piece, we thank Lucy Knox, Speech Pathologist/ PhD Candidate, Human Communication Sciences, La Trobe University for taking the time to share her thoughts on the issue with us.
Why is it important to support the decision making process for a young person with severe traumatic brain injury (TBI)?
It is clear from existing research that decision-making participation is linked to quality of life and psychological wellbeing. What we have also seen over recent years, both internationally and locally, is an increasing emphasis on the right of individuals with disabilities to make decisions about their lives. These changes can be seen across social, legislative and practice levels. There have been many drivers for these changes, but one is the United Nations Convention on the Rights of Persons with Disabilities (to which Australia is a signatory), which obligates us to ensure that individuals with a disability are provided with the support and accommodations they require to enable them to participate in making decisions about their lives as fully as possible.
How does your research contribute to knowledge in the area?
In my research, I am particularly interested in exploring the experiences of people with severe TBI and those around them who support them with decision making after injury. Although we now have a considerable body of research documenting changes in decision making skills following brain injury, we still know very little about the experience of individuals with TBI and those around them in negotiating the process of making decisions after injury. I was motivated to undertake this research by my experience working with people with brain injuries in both policy and practice roles, and a desire to ensure that the support and services we provide reflect the needs and preferences of the individuals who are living with brain injury.
Without giving too much away, can you provide an insight into some of the challenges that are faced by individuals with TBI and their supporters, when making decisions?
There are a broad range of factors that seem to influence the decision-making processes for adults with severe TBI. Some of these factors relate to the injury itself, in particular, changes in cognitive functioning that impact on the ability of individuals with severe TBI to make decisions after injury, and the changed nature of relationships that follow severe injury. Challenges are varied and highly individual, but can include the presence or absence of support, the values and attitudes of supporters, and the availability of resources at the right time.
You’re speaking at IIR’s 2nd Annual Younger People with very high and complex care needs Conference, taking place on the 17-18 June 2013 in Melbourne. What aspects of the conference are you most looking forward to?
In many ways, it is an exciting time in the disability sector. I am looking forward to hearing about a range of innovative projects and new approaches to service delivery, and am particularly pleased to see a number of presentations from service users and their family members.
To hear more from Lucy Knox, catch her in action at the upcoming 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June in Melbourne.