Discussion
For Stefan, before participating in the three-week inpatient rehabilitation programme his daily life was underscored by dependency and difficulties in performing everyday activities, such as transferring from the wheelchair to another place and back, and self-care. This was partly due to his slowness in completing these activities. At the end of the rehabilitation programme, Stefan was able to perform some activities better and a bit faster. However, he continued to struggle with time issues and dependency.
Time Factor and Participation in Major Life Situations
Stefan's experience with dependency and the time factor is not an isolated case.""
Stefan's experience with dependency and the time factor is not an isolated case. A few studies found that persons living with SCI/SCD need more time to perform everyday activities. This, in turn, can limit the person' participation in major life situations, such as work, school or social life.131415 In Stefan's case, the time factor had a major impact on his ability to use public transportation. This, in turn, was considered a limiting factor toward Stefan's plans to participate in a vocational preparatory course that took place in a location far from his home.
Independence and Time Factor
Stefan's dependency on assistance for indoor and outdoor mobility and to perform self-care activities contributed to the excessive amount of time he needed to complete these activities. This is consistent with the study by Gribble et al. who found that children and youth with spina bifida who were independent in toileting spent less time to complete toileting activities.15 . They also found that independence had an impact on time spent but not the other way around. Given this, it would be essential that children and youth gain as much independence in toileting and other daily activities as early as possible.15
""...it would be essential that children and youth gain as much independence in toileting and other daily activities as early as possible.""
This finding is contrary to Pentland et al., who found no predictive relationship between independence and time spent on leisure activities, productive activities, self-care, and sleep.13 Note, however, that independence in this study was assessed using the Functional Independence Measure45, an assessment instrument that has shown to have limitations in its use with persons with SCI/SCD.467 Moreover, the differences in the findings may have also reflected the differences in the study populations in Pentland et al. (adult males with SCI) versus in Gribble et al. (children and youth with spina bifida).
Time Factor and Family Life
The amount of time a child or young person with spina bifida (like Stefan) needs to complete daily activities can pose many challenges for the family as well. The need for assistance and the time the child needs for basic activities can restrict family life and result in stress and conflicts among family members.{cs16-fn21} While teenagers without disabilities generally become more independent as they transition into adulthood, teenagers with spina bifida often need continued care from parents. Providing teenage children with assistance in performing physical activities, such as involved in self-care, also becomes increasingly more difficult as the child gets physically bigger and heavier. In addition, conflicts can arise when parents limit the teenager's possibilities for gaining independence.{cs16-fn22}{cs16-n23}{cs16-fn24}{cs16-fn25}
""The amount of time a child or young person with spina bifida (like Stefan) needs to complete daily activities can pose many challenges for the family as well.""
In Stefan's case, the primary caretaker was his mother. She tended to perform the activities that Stefan should have been doing himself, since her full schedule of daily activities allowed her limited time to wait until Stefan carried out everyday tasks. The consequence was a cycle of dependency and a feeling of dissatisfaction for both Stefan and his mother.
Implications for Rehabilitation and Care
The case of Stefan illustrates the time-related challenges of living with SCI/SCD and the quest for increased independence, including the dynamic interaction between the time factor in performing daily routine and independence. Stefan's case also highlighted the importance of optimising the time necessary for completing daily activities in order to achieve the highest possible level of independence. Efforts toward optimising the time allocation for an activity could include but not limited to:
- reducing impairments in body functions and/or body structures e.g. reducing spasticity or increasing muscle power to support transferring skills
- optimising procedures, e.g. developing and adapting compensation strategies
- enhance the social environment and support of others e.g. instructing parents and caregivers to empower the person with disability to perform activities independently as early and as often as possible, whereby allowing the person to take the necessary time required to complete the activities
- optimising the physical environment e.g. clarifying and employing appropriate assistive devices
Although Stefan only achieved one of three goals at the end of the rehabilitation programme i.e. improved mobility, his participation in the three-week inpatient programme brought him one step closer toward his ultimate goal of gaining independence in daily routine.