Definitions of recovery and reintegration across the first year: A qualitative study of perspectives of persons with spinal cord injury and caregivers.

Study Design: Longitudinal, qualitative cohort study.

Objectives: To understand how people with newly acquired spinal cord injury (PWS) and their support person (SP) define recovery and successful community reintegration (CR) across the first 12 months post-injury (mpi) and their satisfaction with the rate of recovery and reintegration experienced.

Setting: Academic and Veterans hospitals in Midwest USA.

Methods: In-depth, semi-structured interviews were conducted in two cohorts of PWS and SP during the initial inpatient rehabilitation stay, at 6 mpi, and at 12 mpi. Recordings were transcribed; four authors independently undertook line-by-line coding. The team discussed codes to reach consensus and synthesize into broader themes within the International Classification of Function, Disability, and Health and Transformative frameworks.

Results: Data are reported on 23 PWS and 21 SP. PWS and SP are similar in defining recovery as gaining motor function and achieving independence. However, SP more frequently define recovery in terms of maintaining positivity and emotional recovery. At 12 mpi both groups shift to define recovery according to progress. Social roles, being active, and employment are persistent themes of how PWS and SP define successful CR. However, SP also frequently define successful CR as reestablishing identity and emotional adjustment. Veterans with SCI less frequently defined successful CR as employment.

Conclusions: This study is the first to reveal how PWS and SP define recovery and reintegration during the first 12 mpi. Given decreasing lengths of stay, this information can be used to tailor rehabilitation strategies during the critical first year of injury to optimize recovery.