SiX

This research aims to leverage drawing as a non-verbal language to transcend the communication barriers faced by individuals with partial to complete locked-in syndrome (LIS). It will explore the possibility of using the human body as an interface, in accordance with its limitation in functionality, to facilitate social reconnection and emotional expression through drawing. This approach is grounded in the understanding that creative expression and communication are fundamental human needs and can significantly impact the well-being and quality of life of individuals with severe motor impairments.

Locked-in syndrome (LIS) is a neurological condition characterised by complete paralysis of nearly all voluntary muscles except for the eyes. Patients are cognitively aware but cannot move or communicate verbally, leading to significant challenges in expression and engagement with their environment. Despite their physical limitations, many retain full cognitive capabilities and desire to express themselves and interact meaningfully with the world.

This project’s main research questions are: How can digital drawing, under collaborative and immersive environments, contribute to a social connectivity between patients with partial to complete LIS, pairs, their families and caregivers? Can this model of non verbal communication facilitate empathy between stakeholders and improve their quality of life and happiness indicators?

The main goals of this research are to amplify the communicative abilities of partial to complete LIS patients and facilitate empathy and communication between peers by providing a deeper understanding of their experiences and emotions to those around them. This research aims to leverage drawing as a non-verbal language towards empathy, well-being and quality of life by transcending the communication barriers faced by individuals with partial to complete LIS. We will be exploring the possibility of using the human body as an interface, conditioned by patients’ severe motricity limitations, to facilitate social re-connectivity and emotional expression through drawing. Through the creation of an interface sensitive to capture and interpret the patient’s limited voluntary movements or eye gestures, we aim at social re-connectivity between patients, peers, families, caregivers and therapists by establishing immersive and collaborative spaces where stakeholders can interact.

When referring to communication, this study intends to go beyond research on spelling interfaces or communication boards for patients with partial to complete LIS. This research contributes to the state of the art by bridging gaps between art, design and assistive technology in collaborative environments, within the context of Motor Neural Diseases (MND) and, consequently, LIS condition patients. It challenges existing notions of communication, through digital drawing, as a method for perceiving and sensing the world around us and embodying our awareness of our presence and of the presence of others.

It explores new avenues for social re-connectivity through innovative use of the human body under immersive and collaborative environments.

Our approach is grounded in Co-Design and Participatory Design principles, implemented within a Human-centred and Creative mindset approach applied to Brain injury scopes.
This research methodology, involving mixed qualitative methods, will engage patients, families, caregivers, therapists, designers, artists and technologists in the design process. The collaborative effort aims to create a set of digital drawing tools that can be easily tailored by caregivers or therapists to the end-user’s needs and preferences, ensuring functionality and user satisfaction through an accessible, enriching, and emotionally rewarding experience. Iterative design and testing are critical components of this process, for continuous improvement and adaptation of the technology.

The direct involvement of the stakeholders in this process will ensure that the tool is technically viable and relevant to the users in terms of needs, experiences, and dignity.

The core team has vast experience in drawing, design for health, mixed qualitative methods and computational design, acquired over several years in research (scientific, pedagogical, and professional practice). Team members are part of international networks of research and have strong ties with national and international Health, Information and Communications technology Associations.

Expected results include the development of a set of digital drawing activities; guidelines and manual of procedures; prototypes that can be further applied in healthcare centres; an online collaborative platform; a white paper detailing the system architecture, hardware and software design infrastructure and an enhanced understanding into the capabilities and needs of LIS patients regarding social interaction.

Palavras-chave: drawing; design for health; extended reality; LIS.