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

Abstract

AbstractEffects 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.Points of interestThis article examines the individual experiences of confinement during the COVID-19 lockdown of persons diagnosed with Locked-in Syndrome in Spain and France.By the time the pandemic broke out, persons with Locked-in Syndrome had long led a largely locked-in life; we have called that familiarity with confinement, which somehow prepared them for coping with the COVID-19 lockdown.Despite the impact the lockdown had on the lives of persons with Locked-in Syndrome with regard to receiving care and sociability, it did not significantly change their perceptions of their overall situation.The pandemic aggravated the discrimination usually suffered by persons with disabilities, and highlighted that (as we also show) inclusion requires giving up the 'one size fits all' approach.Keywords: COVID-19confinementdisabilityLocked-in Syndromelived experienceinclusive healthcare AcknowledgmentsWe are grateful to all participants for their valuable contributions, as well as to ALIS, the French LIS Association, for its initiative to solicit and post the testimonies of its members during the initial COVID-19 lockdown. We thank in particular Véronique Blandin, the Association's director, for her help in completing the data concerning the French participants.Ethics statementThis research has been performed in accordance with the principles stated in the Declaration of Helsinki and obtained the ethical approval of the Ethics Committee of the Department of Anthropology, Philosophy and Social Work (DAFiTS), of the University of Tarragona (URV), Spain, where this research was conducted.Disclosure statementNo potential conflict of interest was reported by the author(s).Additional informationFundingThis work was supported by the Spanish Ministry of Science and Innovation under Grant PID2019-106723GB-I00.