The Social Brain Toolkit is a series of free, online communication training tools that support people with brain injuries, their loved ones and communities to connect, communicate and interact successfully.
Melissa Miao, a PhD student whose research is supported by a UTS Social Impact Grant, is focused on implementing the Social Brain Toolkit among its target users.
"It’s an implementation science research project, so it aims to ensure a treatment reaches and can be used by the people who will benefit from it. If we don’t make that effort, research shows the treatment may never reach those who need it most," said Melissa.
The human side of iterative design
The Toolkit, which was developed in collaboration with the University of Sydney, Brain Injury Australia and Changineers, with funding from iCare NSW, is comprised of three tools:
- convers-ABI-lity, which supports people with brain injury and their nominated ‘communication partners’ (friends, spouses, carers or family members) to improve the quality of their conversations.
- interact-ABI-lity, which helps family members, friends, carers, clinicians and members of the public to learn to interact successfully with people with brain injury.
- social-ABI-lity, which helps people with brain injury learn to navigate social media safely and successfully.
Melissa’s work focuses on understanding each tool's dissemination and user experience and identifying improvements based on user feedback. To do it, she’s examining web analytics and feedback surveys and conducting a series of in-depth interviews with the Toolkit’s intended users (described above).
During these interviews, Melissa asks participants how they first heard about and want to hear about the Toolkit and walks participants through the tools screen by screen, talking in depth about what they do and don’t like about the content and the interface — “It’s quite literally things like, ‘I couldn’t read this text or ‘I couldn’t navigate this menu’,” she says.
She then takes participant experiences and recommendations and translates them into dissemination strategies, design, and technical changes rapidly integrated into the tools. The result is a series of programs richly embedded with living experiences, making them more effective, accessible and impactful for future users.
The aim is to provide people with brain injury, their family, friends and clinicians with a direct feedback loop back into the design process. It’s essential to establish an iterative dialogue with end users, so they have a say from their real-world experience of what it's like to experience the tool in their lives. – Melissa Miao
The implementation process also provides an opportunity to explore how these tools could be adjusted to consider the other related health conditions that many people with brain injuries often live with, including language impairment, hearing impairment and vision impairment, thereby ensuring that the Toolkit meets a diversity of end-user needs.
“This grant enabled us to seek the living experience of stakeholders, to delve into those problems and challenges, and work together with users to try and overcome them. It’s this collaboration with our end users that are the beating heart of this project.” Melissa explains
Users share their stories
To date, Melissa has completed interviews with five different types of users of interact-ABI-lity and all twenty-one pilot users of convers-ABI-lity. Interviews for social-ABI-lity are scheduled for early next year.
interact-ABI-lity has been launched globally, with more than 1000 registrations from 29 countries in the first 12 months; social-ABI-lity is halfway through a 12-month study, and convers-ABI-lity will be launched in 2023. Post-completion, interact-ABI-lity users significantly improved their knowledge and confidence in communicating with people with brain injury and reported high satisfaction levels with the tool.
These are promising outcomes for a program that’s still in its infancy, but they’re far from the only benefits to arise from work: according to Melissa, the stories that emerged during the interviews provide rich insights into the personal impact of the Toolkit.
One such story involved a group of friends who didn’t know how to respond to Simon*, after he acquired a brain injury. At the urging of Simon’s speech pathologist, the whole friend group enrolled in interact-ABI-lity, learning how to support Simon using evidence-based communication strategies.
“It woke me up, actually. It taught me, okay, Simon’s identity hasn’t changed. His brain function [has], but his identity is still there. [It] gave me a lot more courage and hope that I'm dealing with the same man.” says Sam*, one of the friends who completed the training.
Why implementation matters
Initiatives like the Social Brain Toolkit can be life-changing for people with brain injuries. Regaining the ability to communicate and interact effectively can help people live better, more engaged lives, but nobody wins if the people who need this evidence-based care cannot access or use it. That’s why implementation science projects like Melissa’s are so important.
It’s also why she’s making her work freely available as Open Access research and disseminating it through conferences and public videos, including Visualise Your Thesis. These international presentations also resulted in interact-ABI-lity becoming embedded into speech pathology training at five American universities.
Such widespread dissemination means that Melissa’s work can now be used to inform future research and practice in both implementation science and communication training for people with brain injury.
“There are 135 million people worldwide with an acquired brain injury, whether that's through stroke or traumatic brain injury. And there will never be enough speech pathologists to provide timely face-to-face training to every individual and their friends and family affected by the injury,” Melissa says.
“People can't benefit from care they never receive, so this work is about try to close that health equity gap by enabling timely access to the best evidence-based care.”
Melissa is supported by an Australian National Health and Medical Research Council (NHMRC) Postgraduate (PhD) Grant [GNT1191284], an Australian Research Training Program (RTP) Scholarship.
*Names have been changed.
Project Summary
The problem
Brain injuries such as stroke and traumatic brain injury affect an estimated 135 million people globally. The resulting communication impacts and a lack of available supportive resources can be incredibly isolating, leaving many people struggling to engage and interact with their loved ones and communities.
The response
The Social Brain Toolkit is a series of free communication training interventions for people with brain injuries and those who love and care for them. UTS PhD student Melissa Miao is undertaking a project to implement the Toolkit. Using qualitative interviews, web analytics and feedback surveys, she’s identifying design and technical enhancements and strategies to disseminate the Toolkit to make it more effective, accessible, and impactful for future users.
What helped accomplish this?
The crucial firsthand insights of people with brain injury, their families and clinicians helped researchers understand how the tools could be delivered in the real world. The grant enabled end users to be reimbursed in acknowledgement of their expert living experience and Open Access sharing of research methods.
What has changed as a result?
The Toolkit has now been richly embedded with the input of real users with expert living experience. To date, the first tool has reached more than 1000 users from 29 countries in its first year, with users significantly improving their knowledge and confidence in communicating with people with brain injuries and reporting high satisfaction levels with the tool. The Social Brain Toolkit provides a much-needed resource for people living with the aftermath of a brain injury who might otherwise miss out on evidence-based communication training.
Project lead
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Melissa MiaoPhD student at UTS
