Life Changing Research for People With Communication Disabilities
Associate Professor Bronwyn Hemsley's research is helping bypass speech difficulties through the use of mobile technologies and e-health solutions.
Associate Professor Bronwyn Hemsley, from the School of Humanities and Social Science, views the rapid growth of digital connectivity as a new opportunity for people with communication disabilities. Through three major research projects, Hemsley explores how social media, eHealth records, and health informatics solutions can help people to participate in their own healthcare, and in an online society.
Hemsley is currently leading a joint research project investigating Twitter as a way of communicating to help people who have experienced stroke, cerebral palsy, autism, motor neurone disease, or a brain injury to get their message across. Hemsley explains that the team's initial findings indicate Twitter can help people with communication disabilities share information and feel more included.
"We are seeing that Twitter can not only provide a 'voice' for people with communication disabilities, but also an 'audience' - and this helps them to feel empowered and in control of their own lives. Twitter is emerging as an important forum for people with communication disabilities to exchange information and develop active social networks."
Hemsley explains that many people with communication disabilities who use assistive technologies already know how to make their communication short and succinct therefore making the platform both appealing and comfortable to use.
"Often, people with little or no functional speech find that listeners try to finish their sentences for them or speak on their behalf. They're used to crafting short messages carefully. People who struggle to speak might have had lifelong practice in making every word count. In many ways, Twitter might level the playing field, liberating users from stereotypes and enabling self-advocacy."
The research team will soon embark on the second phase of the project, investigating the benefits of online Twitter training, how networks develop, and how people with communication disabilities experience Twitter over a six month period.
In another three-year research project, Hemsley leads a team of investigators across Australia exploring how patients with severe speech disabilities experience patient safety incidents in hospital and factors impacting on their safety.
"Patients with communication disabilities often have high medical and functional support needs and enter hospital more frequently than people without a disability. Their communication disabilities expose them to a significantly increased risk of safety incidents in hospital."
Hemsley's team are currently interview patients to understand how incidents occur, the impact of the incidents, and ways that the incidents are reported and documented, so as to discover what will help people with communication disability to be safe in hospital. Using this research, Hemsley and her team will create a simple communication tool that can be used by hospital staff and carers when they first meet a patient with communication disabilities.
"This project will result in the development of a framework to guide policy and practice on ways to prevent and respond to safety incidents for patients with little or no functional speech, and a mobile technology application that helps to guide hospital staff and prepare patients. Mobile technologies could be useful for staff to check off relevant facts like 'does this person have a way to say yes or no', 'can they ask for the toilet', 'do they have a communication aid' along with their risks for particular events."
Hemsley's team are also looking at ways hospital staff document a patient's communication method and how information captured on medical record forms might be streamlined to capture 'communication' elements more effectively.
With colleagues on another research project, Hemsley is also investigating the uptake and use of personally controlled electronic health records, with the outlook to help improve the sharing of health information for young people with communication disabilities as they navigate the transition from child to adult health services.
"We're exploring a relatively new e-health technology now available to all Australians - the Personally Controlled Electronic Health Record (PCEHR) – it's also known as 'My Health Record'. Young adults with chronic disabling health conditions often struggle to communicate key aspects of their personal health information to their many health service providers. This results in poor care, including medication errors, poor discharge planning, and problems meeting the person's unique support needs."
The Australian PCEHR or My Health Record is designed to improve communication of health information from the patient to any of the health providers that they permit to view the record.
"This research will closely examine the views, needs, and experiences of young adults with chronic disabling health conditions and communication disabilities – and their families - on their preferences regarding how they keep and use personal health information, and any barriers to or strategies for enabling access to their e Health record."
Along with her team, Bronwyn will interview young adults aged 16-21 years who have communication disabilities, and observe how they engage with their paper-based health records and the PCEHR system. The resulting evidence will inform the effective design and development of the PCEHR in Australia, and ensure that young adults with disabilities can benefit by improved information exchange at the point of care when moving from child to adult health services.
"We now have ethical approval for people to express an interest in the research using an online survey, and to be interviewed online anywhere in Australia."
Young people with communication disabilities and their families can register an interest by going to the survey online at https://www.surveymonkey.com/r/eHealthRecords.
Associate Professor Bronwyn Hemsley also invites expressions of interest from any person who wishes to engage with the Disability Research Network at the University of Newcastle.
Visit the Disability Research Network for contact details and more information.