Determinants of participating in life after spinal cord injury – advice for health professionals arising from an examination of shared narratives

Abstract

The proposed participation promotion framework is grounded in the narratives of the research group but needs to be tested before it can be endorsed for practice. Implications for Rehabilitation In order to promote participation in life after spinal cord injury rehabilitation professionals can help people with spinal cord injury to negotiate the world, build and maintain a support crew and access equipment and technology. Spinal cord injury rehabilitation professionals can encourage people with spinal cord injury to push themselves, be assertive and be flexible, as these attributes can assist participation in life after spinal cord injury. In the pursuit of participation goals, rehabilitation professionals must accept the individuality of each person with spinal cord injury, respect that they may or may not be willing to make tradeoffs to achieve participation goals and that they are on an ever changing life journey.

Social participation and personal autonomy of individuals with spinal cord injury

“…These findings are confirmed in the literature, which also points to a spirit of struggle, religious beliefs, involvement in various activities and in the labor market, voluntary and leisure activities, and asking for help (4,9,(12)(13) .…”

“…We found that the ultimate goal of rehabilitation is to recover and retain the highest possible level of autonomy of the individual in order to maximize their participation. The role and efficiency of rehabilitation in the autonomy of disabled individuals are highlighted, pointing out that the rehabilitation professional is concerned with maintaining the autonomy of these individuals by encouraging their participation in activities they value, ensuring that their personal, social and health needs are met, and cooperating to reduce the various limitations related to disease in social activities (6,11,13) .…”

“…Among the terminologies adopted to define autonomy, the term "independence" is commonly used, not only by the individual with SCI, but also by professionals and the community in general (13,(30)(31)(32) . Being independent means being able to deal with yourself without the help of others or being free from control and external restraints (7,(30)(31)(32) .…”

“…Favorable social and personal conditions are also considered facilitators to participation. It is the case of the individual with SCI who has caregivers or partners, has support from friends, co-workers and health professionals, has intimate ties with the family, has self-help equipment that enables interaction with the general public, and demonstrates possibility of returning to work or engaging in sports activities (12)(13)28,32) .…”

“…Autonomous actions usually occur through the constant adaptation of individual' s intentions to the opportunities and limitations encountered in their interaction with the world (10) . The term, commonly referred to as "independence" in the literature (9,13) , derives from a cluster of value and ideas which differ between persons, social groups and culture (7) . As occurs with participation, the deficiency caused by the injury may restrict the individual's autonomy (7) .…”