Independent home use of Brain Painting improves quality of life of two artists in the locked-in state diagnosed with amyotrophic lateral sclerosis

Abstract

This study reports the use of Brain Painting, a BCI application for creative expression, which was implemented at the homes of two end-users in the locked-in state. Both are artists who had gradually lost the ability to paint after being diagnosed with amyotrophic lateral sclerosis. The usability of the BCI in expert-independent use was evaluated by the end-users. End-user HP painted in 152 sessions within 22 months (in total: 255 h), end-user JT in 158 sessions within 15 months (in total: 168 h). With an accuracy of 70–90%, BCI control was mostly moderate to high. Both end-users were highly satisfied with the BCI as an assistive device. Brain Painting re-enabled them to be creatively active in their home environment and thus improved their feelings of happiness, usefulness, self-esteem, well-being, and consequently quality of life, and supports social inclusion. This long-term evaluation study suggests that BCI is a valuable tool for people in the locked-in state.

Keywords:

• brain-computer interface
• independent home use
• locked-in syndrome
• amyotrophic lateral sclerosis
• usability
• user-centered design
• end-user
• creative expression

Acknowledgements

We thank our BCI end-users and their families, personal assistants, and caregivers for answering evaluation questions and for their patience with the BCI. This work is supported by the European ICT Programme Project FP7-288,566 (Backhome) and the Human Dynamics Centre (HDC) of the Faculty of Human Sciences of the University of Würzburg. This paper only reflects the authors’ views and funding agencies are not liable for any use that may be made of the information contained herein.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. We use the initials of both end-users with permission. Their names are anyway revealed through the copyright statement linked with their paintings. Both were repeatedly on German television and print media and are, thus, no longer anonymous.

2. In an Interview with Bayerischer Rundfunk (November 2013).

3. In an Interview with GIP in autumn 2013: http://www.gip-intensivpflege.de/brainpainting/.