Exploring well-being services from the perspective of people with SCI: A scoping review of qualitative research

Abstract

Objective Well-being after spinal cord injury is affected by a range of factors, many of which are within the influence of rehabilitation services. Although improving well-being is a key aim of rehabilitation, the literature does not provide a clear path to service providers who seek to improve well-being. This study aimed to inform service design by identifying the experience and perspective of people with SCI about interventions targeting their well-being. Method The scoping review of qualitative literature used thematic analysis to identify and categorize themes related to service activities, valued aspects, limitations and perceived outcomes. Results Thirty-eight studies were selected, related to a range of service types. Most studies did not adopt a well-being conceptual framework to design and evaluate the services. People with SCI particularly valued being treated with dignity, positive expectations, increased autonomy and peer support. Improvements to well-being were reported, including many years post-SCI. However, people with SCI reported limited opportunities to engage in such services. Conclusions Rehabilitation services can improve well-being across the lifetime of people with SCI, but gaps in service provision are reported. The review identified valued aspects of services that may inform service design, including staff approach and positive expectations, having own skills and worth valued, peer support and interaction, autonomy in valued occupations, and long-term opportunities for gains.

Keywords

• well-being
• quality of life
• spinal cord injury
• rehabilitation
• intervention
• qualitative scoping review