Exploring the Lived Experiences of Individuals with Spinal Cord Injury During the COVID-19 Pandemic

Abstract

The global spread of severe acute respiratory syndrome coronavirus 2019 (COVID-19) has affected over 100 countries and has led to the tragic loss of life, overwhelmed health care systems, and has severely impacted the global economy. Individuals with disabilities are one of the “largest minorities” and face unique vulnerabilities and challenges during a pandemic, including income support, mental health, social isolation, and access to healthcare and information. Specifically, individuals living with spinal cord injury (SCI) are particularly vulnerable during the COVID-19 pandemic as they often face adverse impacts on their health, emotional well-being, community participation, and life expectancy. They often require increased caregiver support and may have a compromised immune system, potentially increasing the risk of developing COVID-19. We are at a critical juncture in research where information about the impact of COVID-19 for individuals living with SCI is essential. The objective of this study was to investigate the lived experience of individuals with SCI during the COVID-19 pandemic in Ontario, Canada. An exploratory design with a qualitative descriptive approach was used to address the study objective. Nine semi-structured interviews were conducted. The following themes were identified: (1) Who will care for me? Caregiver concerns in the time of COVID-19; (2) ‘Caught between a rock and a hard place’ – Challenges taking care of my physical being during quarantine; (3) On the inside looking out – Stuck at home in isolation; (4) Protecting my body – Maintaining enhanced hygiene; (5) Will a doctor be there for me? Access to healthcare and use of telemedicine; and (6) Reading between the lines – Fighting COVID-19 misinformation. This study contributes to a greater understanding of the challenges faced by individuals living with SCI and provides insight on how to better support and respond to the specific and unique needs of individuals with SCI and their families during a national emergency or pandemic situation.