Life and living: Co-designing real and virtual spaces for survivors of severe Acquired Brain Injury (sABI)

摘要

Survivors of severe Acquired Brain Injury (sABI) are often not afforded a fair chance of recovery. They can be considered as `hopeless' cases and a drain on the health system. In addition, many of them are misdiagnosed: between 40% and 60% of persons diagnosed as being in a permanent vegetative state (PVS) are, indeed, conscious, often in a minimally conscious state (MCS). Although research has shown that, especially given the right support, there is virtually no limit to their recovery, they often do not recover to the level they could and within a reasonable timeframe because they are afforded a minimalistic treatment by the health system: food, water and medication. The An Saol Foundation was established in Ireland in 2017, with the mission of connecting recent research with current practices of rehabilitation. The aim of a three-year pilot by the An Saol Foundation, supported by the Irish Health Service Executive (HSE) is the co-design and implementation of living spaces for survivors of sABI and their families. The aim is to create an ecosystem of supports to enable the survivors of sABI and their families to live life to the full, using the latest technologies and engaging as fully as possible in community and cultural activities, to encourage a sense of liveness and co-presence, as well as to support all efforts at physical and communicative rehabilitation and engagement in the context of the whole community. An Saol has partnered with SMARTlab to develop a shared life lab for young people with sABI, to be co-located in a fully equipped SMART VR First lab providing the latest virtual and augmented reality training tools, soft robotics and haptic tools, and cobotics (companion robots for assisted living) so that survivors of young people with sABI can not only heal but can also experience a rich set of activities, sports, music and creative expression in the virtual world, and can train over time to co-create new content for these healing modalities for use by others. We have selected a co-researcher with sABI to co-design all aspects of this project with us. Pádraig Schäler has already taken part in an experiment to fly a drone to map rough terrain by remote, and has worn a VR headset to help test the weight and possible customization we will need to make as the project progresses. A team is building around Padraig, with experts in sensorial perception and sonic design, eye gaze and brain controlled multimodal interfaces, VR, AR, drones and robotics sharing their expertise around this Alpha user and co-inventor.