700 Section - International perspectives of people with lived experience of spinal cord injury rehabilitation

The quality of care received during post-acute rehabilitation is critical for people with spinal cord injuries and disorders (SCI/D) to return to community living and experience an optimal quality of life. Lengths of stay (LOS) and rehabilitation goals vary widely across nations, as do services, systems, and policies to support community living. This qualitative study investigated the perspectives of people with SCI/D regarding their rehabilitation experiences and preparation for community reintegration as part of an international study across five nations and healthcare systems. We sought to identify the shared and distinctive perspectives of people with SCI/D across nations and how they relate to rehabilitation length of stay and services.

Design:

Nine semi-structured focus groups involving 51 people with SCI/D were held by the research teams in Australia, Canada, the Netherlands, England, and United States.  The team of international collaborators developed a standardised focus group guide based on research literature and clinical experience.  Data were analysed using thematic analysis.  In each country, at least two investigators independently coded the transcripts, with a third investigator reconciling discrepancies. Each nation’s coding was triangulated with independent coders from Shirley Ryan Ability Lab. Country-specific themes were elicited and subsequentially compared and synthesised across nations to identify shared and divergent themes.

Results:

Identified themes related to experiences during inpatient rehabilitation, home and community reintegration, balancing loss and acceptance, managing accessibility barriers, strength of relationships, and ways that rehabilitation could have prepared them better for transition to community living. Participants described both positive and negative experiences with specific facilities, therapies, and professionals.

Conclusion:

Preparation for discharge and community living experiences varied widely, reflecting availability of person, rehabilitation, and community-level resources.  Findings provide unique world-wide insights into the organization of rehabilitation services which can inform international service provision.