Seeking sufficient and appropriate care during the first year after spinal cord injury: a qualitative study

Abstract

Abstract Study design Longitudinal qualitative study, based on a constructivist grounded theory and transformative approach. Objectives This study investigated experiences of individuals with spinal cord injury (SCI) while navigating rehabilitation, resources for recovery, and community reintegration during the first year after injury. Setting An acute inpatient rehabilitation facility in the Midwest United States. Methods In-depth, semi-structured interviews were conducted with 20 individuals with newly-acquired SCI. Interviews were conducted approximately every other month for one year, beginning at acute inpatient rehabilitation. Data were analyzed and interpreted using a constructivist grounded theory approach and transformative paradigm, which examines power and social structures within and across institutions and gives voice to people at risk for marginalization. Results Participants experienced variable post-injury trajectories, with an average of four transitions within and across healthcare institutions in the first three months. Half of the cohort was discharged to a skilled nursing facility (SNF). Emergent themes included discharge (un)readiness; length of stay uncertainty and insurance impacts; challenges choosing a SNF including time-sensitive decisions; and early cessation of therapy in the SNF. Participants experienced resource navigation challenges such as communication/information access barriers and contending with many concerns at once. Conclusions The experiences of this cohort reveal significant challenges to attaining sufficient and appropriate rehabilitation. Acute inpatient rehabilitation is a critical aspect of recovery, but does not ensure sufficient intervention for maximization of functional skills and community reintegration. Innovative rehabilitation models need to be developed for positive impacts on successful transition to independent living in the community.