While few studies have specifically explored the temporal aspects of performing activities in persons living with spinal cord injury and diseases, this case highlights that the availability of enough time is an issue that individuals with such health conditions - as well as caretakers and employers - must grapple with on a day-to-day basis. Living with many forms of SCD, including SB, is slow; more time to complete actions is necessary.
The years prior to this rehabilitation program were a period of dependence and unlearning of previously learned tasks, resulting in difficulties performing many activities such as transferring and self-care.
The efficiency of performing many of the activities of daily living is primarily a function of the type of injury, determined by the integrity of body structures, the degree of body functioning, as well as each individual’s set of contextual factors, both environmental (e.g. assistive devices social support) and personal (e.g. caretakers’ behaviours). At community integration level, these impacts on a person’s ability to complete or perform tasks in a timely manner can have a broader effect. An individual living with a spinal cord disease must adapt despite functional limitations to a society and world that often moves “too fast”:
The ICF includes categories that focus on performing single or multiple tasks as well as managing and carrying out a daily routine. In rehabilitation practice it may be valuable to consider these aspects of functioning and wherever possible identify body functions and structures, activity skill sets (e.g. time management) and personal and environmental factors that could increase both overall independence and activity efficiency.
In Stefan’s case, living with SB (as well as his traumatic SCI) meant multiple medical procedures and periods of rehabilitation, where he repeatedly was tasked with learning and relearning activities. In other words, for Stefan, a slower pace was the norm. The years prior to this rehabilitation program were a period of dependence and unlearning of previously learned tasks, resulting in difficulties performing many activities such as transferring and self-care.
Frequently, for those living with, caring for or working with persons with SCI, a degree of patience is required. For Stefan’s primary caretaker - his mother - her full days did not allow for the time for Stefan to perform many tasks, resulting in a discouraging attitude towards his undertaking activities independently. This cycle of dependency was a difficult situation for Stefan.
During the three week program, Stefan’s rehabilitation goals focused on increasing independence through both improved mobility and self-care. Based on his initial assessment, his health care team felt that addressing targets associated with these goals would have the biggest impact on his capacity for undertaking activities of daily living.
While Stefan made significant progress overall, his case nevertheless exemplified many of the time-related challenges of living with the effects of spinal cord injury and/or disease: environmental factors impede efficient movement; caretakers, in trying to economize their daily schedules, promote dependence. To further illustrate the impact of temporal limitations on participation, it still remained to be seen whether Stefan would be able to regularly return home from his vocational school. If his use of trains is too inefficient, it may be that he will need to either increase his independence in living away from home, or discontinue the course. Needless to say, this will be a challenge in Stefan’s near future.
Rehabilitative interventions based on training and developing ADL skills, counselling caretakers to promote independence and providing assistive devices that help to maximize efficiency are just some of the steps that can lead to increased independence and quality of life. Hopefully, some of the skills Stefan gained in this Rehab Cycle offer him greater opportunities with respect to both independent and efficient living.