Chances are you know someone who has had a stroke. That’s because around 1 in 6 Australians will experience a stroke in their lifetime; around 50,000 men and women experience one every single year. According to the National Stroke Foundation, stroke is one of Australia’s biggest killers and a leading cause of disability.
The road to recovery
Although the survival rate of stroke continues to improve along with early intervention, stroke continues to be causative of physical difficulties such as walking, cognitive changes to memory or attention, and a language problem known as aphasia.
Aphasia is a communication disability which impacts everyday life and relationships. All parts of language can be affected; talking, listening, reading and writing, and this is caused when the stroke occurs in the language areas in the left hemisphere of the brain. Around one-third of stroke survivors will experience aphasia. Each year, 17,000 Australians are hospitalised with post-stroke aphasia.
A thesis worthy of attention
In addition to the neurological changes of a stroke, an individual might face changes in relationships, their ability to work, to drive, or to their role in society. The use of language – and communication more generally – is functionally complex and multifaceted; while we have ample evidence to demonstrate the effectiveness of speech pathology after a stroke, it can be difficult to capture evidence of change in everyday conversations.
La Trobe speech pathologist, Dr Marcella Carragher, chose a PhD thesis that explored designing various interventions to improve the conversational skills of individuals with aphasia. Within her PhD, Dr Carragher developed a novel approach that supported individuals with aphasia to practise telling a humorous or interesting story to a family member. The family member was a key part of the therapy – they learnt how to work with the individual with aphasia to co-construct the story.
It was this published work that would capture the attention of Professor Jane Marshall at City University of London, whose team had developed an interactive virtual world, something akin to a tropical island getaway. They called it Eva Park. We sat down with Dr Carragher, a member of La Trobe University’s Aphasia Lab, to explore this virtual reality platform.
A Whole New World
Because depression and social isolation are common in individuals who have post-stroke aphasia, Eva Park provides a safe space in which people with aphasia can meet with others experiencing the same condition. They can then receive therapy from the comfort of their own home, and explore a novel space in a novel way.
‘The island has a café, hair salon, restaurant, a retro disco, a hidden planetarium and its very own Tardis. Within Eva Park, participants can walk, run, fly or swim.’
Professor Marshall and her team wanted to expand the types of therapy available within Eva Park and were interested in the Interactive Storytelling Therapy designed by Dr Carragher. So began the collaborative work between La Trobe University’s Aphasia Lab and City University of London.
Error before trial
Initially, Eva Park was a proof-of-concept design that attempted to provide high intensity therapy within the game-like format of virtual reality. People with aphasia were heavily involved in the design of the virtual island as well as the equipment required to access the island, such as the modified keypad.
An initial trial of 20 participants found that those participants who spent time in Eva Park, as opposed to a control group who were subjected to conventional therapy after the expected UK waiting periods, demonstrated measurable improvements in the types of communication that we use routinely.
‘So that was a really positive first step. Now what they’re looking at is, can we use Eva Park not just to provide social stimulation, but to actually deliver different types of therapy?’
Optimising the user experience
With comprehensive feedback from the participants interacting in Eva Park’s earliest incarnations, the platform was refined and reprogrammed to optimise and tailor the experience for users undergoing therapy. Dr Carragher explained that the individuals with aphasia who were involved at this stage of development were providing reactions on aesthetics, virtual activities, ease of access and navigation, with each response or suggestion contributing to this new territory.
‘Can we develop – or can we create this interesting, stimulating place that people with aphasia will want to spend time in?
Essentially, it was a powerful collaboration between researchers and individuals with aphasia to co-design this virtual reality world that is now being put through its paces.
Let’s talk about talking
Engaging in a conversation requires a complex combination of language, speech, social and interpersonal skills – no matter how easily they seem to combine to represent a healthy mind. In a neurologically intact brain, the person thinks of the message they wish to convey, chooses the words to convey their meaning (sarcastic? ironic? amusing?), arranges these words into a sentence, selects the sounds for each word, and audibly delivers the message – all in the blink of an eye. It’s a reminder of how remarkable all of those synaptic pathways really are.
Is Eva Park the solution we’ve been waiting for?
We asked Dr Carragher if it’s too early to know whether or not Eva Park was appropriate for everyone with aphasia, given that the term ‘aphasia’ includes a broad range of sub-types and degrees of severity. The reality, she told us, was that we simply don’t know yet. Through Dr Carragher’s dedication to her work, a cautious realism persists. ‘It’s too early to say who this will work for.’
‘In the current stage, we are recruiting individuals with aphasia to test whether or not we see changes in communication after a period of receiving therapy in Eva Park.’
‘The next stage will be to refine our approach and identify which specific individuals will benefit from which therapy.’
Dr Carragher is frank about the level of attentiveness that the research has attracted. ‘There’s a lot of interest in what more generally can be described as discourse therapy’, she explains. This includes general conversation, producing an argument, giving an opinion, and telling a story or an anecdote.
The end of aphasia therapy as we know it?
So where does such a dramatic leap in technology-based therapy leave the actual speech therapists? Not too far away, it turns out – at least in the virtual sense – where they meet their clients in Eva Park itself. The appointment is arranged like a standard therapy session, and the person with aphasia will access the online platform in comfort. Within the current therapy regimen, participants receive a high-intensity program of therapy equivalent to four hours per week for a five-week duration.
‘So rather than the person having to travel to come into clinic, they can actually sit at home, access Eva Park, meet their therapist there, and work on the goals that they’ve agreed on.’
Within Eva Park, the therapist works with the individual with aphasia to ultimately help them to be able to tell interesting, funny stories or anecdotes. This storytelling approach could involve the therapist supporting the individual to find a specific word, teaching strategies to boost verbal and written communication skills, and to strategically use their residual language skills to maximum effect; say, to ultimately elicit laughter from the person they are telling the story to.
‘As a therapist, you’re always juggling, and you’re always having to be guided by the individual with aphasia. It’s their life and they’re often very good at telling you what their priorities are.’
A key component of the original Interactive Storytelling Therapy was the inclusion of someone close to the individual with aphasia, such as their partner. Speech pathologists already commonly find themselves in the position of using their counselling skills during a therapy session attended by the person with aphasia and their significant other. Given the importance of communication as a component of any relationship, a couple affected by aphasia might require the assistance of the speech therapist to improve mutual understanding, and perhaps even to find new ways of maintaining their relationship in these new circumstances.
But despite the virtual presence of the speech therapist in Eva Park, replicating the benefits of counselling initially proved too challenging. Involving a significant other during aphasia therapy allows the speech therapist to nurture that relationship beyond the practical elements. Accordingly, the Eva Park team made the necessary changes to allow users to benefit from the therapist’s full skill set.
‘Often when family members think of therapy, they have expectations that you’re only going to focus on the individual with aphasia. Interactive Storytelling Therapy involves the person with aphasia and someone close to them.’
‘This is because conversations, by definition, involve at least two people. [Storytelling] therapy is trying to influence and improve one form of conversation – i.e., where we tell anecdotes and stories; that is, why it is important to involve more than the individual with aphasia.’
Learning how to learn – again
The emotional consequences of aphasia are one of the biggest challenges for these individuals and their families.
‘It will have affected their life in terms of who they feel they are now, the role that they can contribute in their household, in work, in their community. They’re juggling with all of that as well, so aphasia is more than a language problem.’
Traditional therapy usually involves the individual with aphasia travelling to an outpatient clinic to receive therapy once they have been discharged from hospital.
Evidence suggests that existing high-intensity therapies yield greater improvements than less intense therapies: yet, high-intensity therapies often have higher dropout rates, possibly stemming from the costly and time consuming burden of attending clinic every day. Eva Park offers an entirely different experience – a high-intensity therapy without having to leave your house.
Eva Park – where you can spread your wings
The very first Eva Park study was able to demonstrate that, when compared with existing therapies, they had very little dropout. The study participants, already in the comfort of their own surrounds, were not required to plan a daily commute. That was traded up for a virtual visit to the hair salon, a drink at the tropical bar with other people receiving therapy for aphasia, or the simple pleasure of exploring someplace new. It also gets fantastical. Ever wanted to ride a turtle or learn to fly? Virtually, it’s all possible.
It’s this synopsis that makes for such a compelling narrative. Eva Park: the story of a communication disability typified by social isolation, emotional distress and the constant disruption of repetitive therapy; until, at long last, the march of technology combines with experience and expertise to develop a path of less resistance. The long road to recovery becomes a fast-track to accessible, evidence-based therapy at the right intensity. It’s more comfortable, convenient, social, interactive; less burdensome, draining, disruptive and isolating. Perhaps the future of aphasia therapy means you’ll only ever have to secure one Park.