Our Need Knower Brent has Prader-Willi Syndrome - a chromosomal disorder characterised by hyperphagia, hypotonia, obesity and intellectual disability (with an astounding number of additional complications that affect physical and mental health). PWS has an average life expectancy of 30 years of age. Brent is 39 and an inspirational example of what it means to successfully manage PWS. Our solution will help Brent with his transition into assisted living as well as other people with PWS engage in exercise early and increase their very pessimistic life expectancies and prospects. Like many people with PWS, Brent is extremely schedule oriented. Changing habits is a long and laborious process, which was something we had to factor in. Similar to other individuals with intellectual disability, Brent also has a restricted social network. The restricted social network interacts profoundly with the propensity for people with PWS to develop depression and anxiety. Brent loves spending time with his family, especially his nieces and nephews, his work as a chef, the Melbourne Demons, fishing, and his cat Cosmo. Research on the prevention of both hyperphagia and hypotonia highlights the importance of routine and exercise.
Kate, Brent's mother, and a PWS trainer would like a way to make Brent's exercise to be more engaging and entertaining, with incentives and challenges that he can incorporate into his daily routine. However, after getting to know both Kate and Brent, we discovered that Kate's anxieties were stemming from Brent's impending transition into assisted living accommodation that could have implications for his physical and mental well being if his schedule is broken or he develops depression.
We adopted a human-centered design approach for the creation of our solution. The more we learned about Brent and Kate, the more we realised that Brent is the poster child of PWS, and doesn't manifest some of the challenging behaviours that other people with PWS manifest. This created an interesting tension: creating an application to motivate Brent to do exercise would look very different to an app encouraging other people with PWS with greater complications to engage in physical activity. Kate was concerned about Brent's transition into assisted living. She was concerned that the change in Brent's routine would cause him to lose his current motivation to exercise which would result in numerous complications, the most immediate being weight gain. This transition is a huge change with multiple physical and social implications. We wanted to ensure that Brent was engaged with exercise, but we also prioritised maintaining communication with his current care team, particularly Kate who wanted to remain abreast of Brent's health developments. Brent is concerned about owning a smartphone. In the past, Brent has had valuable items stolen by people taking advantage of him and his intellectual disability. Our solution, therefore, had to be an application to be used with his iPad when he is in the safety of his home. Our solution is an ARKit enabled app that collates important aspects of Brent's day-to-day life. Brent's schedule will appear here and be editable by his care team. The app will include a dashboard of health metrics for Brent's family and care team: how much exercise he is engaging in on a weekly basis, his blood sugar, and his weight. Another dashboard will be available to Brent that keeps track of his exercise goals and blood sugar. When Brent achieves his fitness, health and personal goals he is rewarded with a virtual "trophy". Brent has an incredible passion for fishing and sea life, he has also had to leave his beloved Cat Cosmo behind in his transition into assisted living accommodation. We have therefore created a virtual (AR) fishtank for Brent, upon achieving milestones Brent will receive a new exotic fish as a trophy to put in his tank. He can view and interact this tank at any time using AR in his new bedroom in the assisted living accommodation. Brent's family and care team are able to interact with his exotic fish trophies, weekly goals and achievements to provide Brent with the acknowledgment and support that he deserves and seeks. Trophies will be triggered when Brent achieves goals that his care team set in advance for him targeting physical activity and general well-being. His personal trainer is also enabled to trigger these trophies. Gathering data through wearables and IoT enabled devices will mitigate the risk of Brent fabricating his health data - he loves to please people and wouldn't ever want his family to worry about him so he often tells them what they want to hear about his health.