Neuroscience and Neurorehabilitation

About

The Missing Voices project is an Australia-first study examining the extent and impact of acquired communication disorders (ACD) upon Aboriginal people and their families. The project received funding from the National Health & Medical Research Council and is running from January 2013 –  January 2016 across six sites in Western Australia. The University and health-care based researchers and research assistants recruited from local Aboriginal communities are bringing together the experiences of Aboriginal people living with ACD and their health professionals from urban, rural and remote  locations across the state.

The results of a pilot study conducted by Professor Armstrong, Associate Professor Deborah Hersh, Professor Colleen Hayward and Ms Joan Fraser in 2010/11 provided motivation for the Missing Voices project as did statistical data that showed Aboriginal people are more than twice  as likely to suffer a stroke or traumatic brain injury as non-Aboriginal Australians. Furthermore, this data suggested that many Aboriginal people are also experiencing stroke at a much younger age than non-Aboriginal people.

Stroke and traumatic brain injuries are two of the leading causes of acquired communication disorders. Thirty percent of people who experience a first ischaemic stroke experience aphasia (a language disorder affecting speech, comprehension, reading and writing) while the incidence of a broader cognitive-communication  disorder associated with traumatic brain injury  is estimated to be around 15 per 100,000 population per annum.  Yet Aboriginal people are less likely to be diagnosed with ACD and often have less access to treatment and support services.

Acquired communication disorders are ‘silent’ disorders. They are less identifiable than physical disabilities that can occur after a stroke or traumatic brain injury and yet can have a devastating impact upon a person’s ability to carry out activities important in everyday life and to participate in  activities that enhance the quality of life. Acquired communication disorders include aphasia, dysarthria (a motor speech disorder causing slurring and/or slowed speech), and cognitive communication disorder (communication disorder caused by impairment in executive function, short  term memory, attention and perception, resulting from diffuse brain damage). Acquired communication disorders can threaten participation in simple everyday activities such as using the telephone, placing an order or doing the shopping, and talking with family. They also pose a risk to a person’s  sense of identity. Not being able to speak or communicate well can cause a disconnection with family and community and from activities and experiences that affirm cultural identify.

It is known that for non-Aboriginal people, ACD can result in greater difficulties and decrement in quality of life for both the person and their family. Anxiety, depression, loss of identity, social isolation and significant family disruption are often experienced. In contrast, the experience of Aboriginal  people living with these disorders is not well known. The impact of ACD on individuals and families requires exploration as do the ways in which Aboriginal communities are supporting people with ACD.

The experiences of Aboriginal people with an acquired communication disorder are likely to be different from non-Aboriginal people  in terms of access to health services, manifestations of the disorder, construction of the problem and ultimately, as a result of these cultural differences, engagement  with treatments.

The above points highlight the need for speech pathologists and other health workers to better understand the issues involved in the experience of acquired communication disorders for Aboriginal people, the current context of service delivery, and to have a variety of service delivery options available  to assist people with ACD.

Professor Beth Armstrong is leading a team of researchers from Edith Cowan University, the University of Western Australia, the Western Australian Centre for Rural Health and Geraldton Regional Aboriginal Medical Service in the project which has also received support from Aboriginal Medical Services  around the state.

The aims of the Missing Voices project are:

• To investigate, using current administrative data, the extent and impact of ACD in urban and rural Aboriginal populations in Western Australia following stroke or traumatic brain injury.
• To develop and validate a culturally appropriate communication disorder screening tool for use by health professionals who are working with Aboriginal people after stroke and TBI.
• To describe the current status of communication rehabilitation services for Aboriginal people through interviews and focus group discussions with Aboriginal individuals with ACD and their families, Speech Pathologists, Aboriginal Health Workers, and General Practitioners.
• To develop potential alternative service delivery models that are accessible and culturally appropriate based on the reported experiences of individuals and their families and health service providers.

Previously, the stories of Aboriginal people with ACD were missing. Now, their stories are being told. Funding agency National Health and Medical Research Council

Project duration

January 2013 – December 2015.

Contact

For more information about the Missing Voices project, please contact Professor Beth Armstrong (Chief Investigator) on (61 8) 6304 2769 or at b.armstrong@ecu.edu.au. Alternatively, contact Meaghan McAllister (Project Coordinator) on (61 8) 6304 5468 or at m.mcallister@ecu.edu.au.