Universiteit Leiden

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Research project

Locked-in? Locked-out!

We study various aspects of the locked-in syndrome

Contact
Femke Nijboer

“Life is always beautiful,exciting and valuable”, answered Ursula Broermann, a woman with late-stage ALS and who was almost completely paralyzed, to a question from a journalist why she had chosen for artificial respiration.  The journalist assumed that people who are locked-in would want to die, but Ursula seemed happy to be alive.

The classical locked-in state is characterized by total immobility except for vertical eye movements or blinking. Incomplete (or residual) LIS permits remnants of voluntary motion and total (or complete) LIS consists of complete immobility including all eye movements combined with preserved consciousness.

This research lines looks at the locked-in syndrome from different angles. As health and medical psychologists we are interested to understand how people live with LIS and what factors contribute to successful coping. As neuropsychologists we want to understand if and how the brain changes due to LIS. But we are also interested in the relation between quality of life and the technologies that exist to support people with LIS (e.g. communication devices, wheelchairs) and society. How technology influence values such as independence and dignity? What role does assistive technology play in societal inclusion or exclusion?

We often find out that being lock-in, may also mean you are locked-out. So, we try to come up with innovative technologies to unlock people and strategies to include people in society.

Connection with other research

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