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.

Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership

“…Another key goal of rehabilitation after SCI is to enable them to achieve a satisfactory quality of life. [4][5][6][7][8] A spinal cord injury research strategy for Australia and New Zealand has recently been developed. Its aims are to facilitate collaborative and multicentre research; ensure consistency among sites in terms of patient selection, treatment and evaluation; and, in turn, enhance neuroprotection and functional recovery, reduce the impact of secondary complications and underpin clinical best practice and policy to improve health, participation and quality of life.…”

“…9 Thus, there is a need to move research outside hospitals and include the importance of resilience, family sustainability, depression and motivation in how well these people cope with day-to-day living and maintain their health, well-being and quality of life in the long term. 6,7,10 A Swedish needs-assessment project, combining the PSP methodology and workshops, has therefore been under way in 2021-22. The overall aim of the project is to identify needs and key questions to enhance life for people living with SCI in Sweden, as perceived by these individuals themselves and their relatives, as well as health professionals and personal care assistants 1 working with people living with SCI.…”

Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership

“…However, a rapid review conducted in 2015 stressed research considerations pertaining to perspectives on quality of life among people living with SCI [ 9 ]. Thus, there is a need to move research outside hospitals and include the importance of resilience, family sustainability, depression and motivation in how well these people cope with day-to-day living and maintain their health, well-being and quality of life in the long term [ 6 , 7 , 10 ]. It is not likely that every country or region should have their own research agenda, but with different health care and social security systems, one must investigate priorities in other places also.…”

“…Rather, rehabilitation must focus on people living with SCI, and providing support to enhance their lives. Another key goal of rehabilitation after SCI is to enable them to achieve a satisfactory quality of life [4][5][6][7][8].…”

Needs to be met to enhance life for people with SCI

“…Historically, the main focus in the treatment of SCI was to ensure survival. However, the advent of improved instruments, techniques and methods to assure spinal stability, obtain reductions, maintain alignment, etc., [6] has brought about a rehabilitative focus which has been evolving in the past decades in Sweden and in many other countries, enabling people living with SCI to have a satisfactory quality of life [4,5,[7][8][9].…”