The lockdown of the locked-in: experiences of persons with Locked-in Syndrome during COVID-19 pandemic

Abstract

Effects of COVID-19 lockdown for people with disabilities have been examined in the social and health sciences regarding both access to health and caregiving services, and their personal experiences. This article adds to such scholarship by investigating the lived experience of the lockdown in persons diagnosed with Locked-in Syndrome (LIS) by drawing on testimonies of confinement provided between March and June 2020 by members of the French Locked-in Syndrome Association (ALIS), and responses to a qualitative questionnaire during the same period by Spanish participants of our research project. Thematic analysis was performed; through inductive coding, five major themes were identified. By the time the pandemic broke out, some persons with LIS had long led a largely locked-in life. Studying their experience will allow us promote awareness of the resources needed to ensure the rights of people with disabilities and improve their quality of life and wellbeing.