Environmental and systems experiences of persons with spinal cord injury and their caregivers when transitioning from acute care to community living during the COVID-19 pandemic: a comparative case study

STUDY DESIGN: Comparative case study OBJECTIVES: To elevate the voices of and capture the lived environmental and systems experiences of persons with spinal cord injury (PWSCI) and their caregivers, in transitions from inpatient rehabilitation to the community. Also, to examine the perceived and actual availability and accessibility of services and programs for this group. SETTING: Inpatient rehabilitation unit and community in Calgary, Alberta, Canada METHODS: As a comparative case study, this research included multiple sources of data including brief demographic surveys, pre- and post-discharge semi-structured interviews, and conceptual mapping of services and programs for PWSCI and caregivers in Calgary, Canada (dyads). Three dyads (six participants) were recruited from an inpatient rehabilitation unit at an acute care facility, from October 2020 to January 2021. Interviews were analyzed using the Interpretative Phenomenological Analysis approach. RESULTS: Dyads described transition experiences from inpatient rehabilitation to community as uncertain and unsupported. Breakdowns in communication, COVID-19 restrictions, and challenges in navigating physical spaces and community services were identified by participants as concerns. Concept mapping of programs and services showed a gap in identification of available resources and a lack of services designed for both PWSCI and their caregivers together. CONCLUSIONS: Areas for innovation were identified that may improve discharge planning and community reintegration for dyads. There is an intensified need for PWSCI and caregiver engagement in decision-making, discharge planning and patient-centered care during the pandemic. Novel methods used may provide a framework for future SCI research in comparable settings.