When More Time is Less

The environment around me moves so fast…it really has no concern for those with disabilities.

Stefan, an adolescent with spina bifida reflecting on time

The International Classification of Functioning, Disability and Health (ICF) describes disability as the dynamic interaction between impairments in body functions and body structures, limitations in activities and restrictions in participation with a health condition and a person’s contextual factors – both environmental and personal.1 Disability often leads to a level of dependency in daily living.

Read more: General Introduction

Stefan’s Story

I always have the feeling I’m being rushed by others, by my parents. But it’s all a matter of perspective, isn’t it. One could also say my family is living too fast.

Stefan

Stefan – a 17 year old - was born with spina bifida (SB), a developmental birth defect that can contribute to disability (see Case Study 13 for more on this condition). In addition to living with this condition, at the age of 15 –Stefan was unfortunate enough to also suffer a traumatic cervical spinal cord injury that would further complicate his disability.

Read more: Stefan’s Story

Stefan’s assessment integrated both the patient’s and health professionals’ perspectives; this would inform the goal-setting for the rehabilitation cycle. The according information is summarized in the ICF Assessment Sheet (Figure 1)

Figure 1: ICF Assessment Sheet
Figure 1: ICF Assessment Sheet

Impaired body structures and functions could be identified in relation to both SB and his traumatic spinal cord injury. Stefan felt his sensitivity decrease towards his lower extremities, and could often not sense pressure while sitting. His health care team tested decreased sensitivity likewise from a grade 2 (normal sensitivity) overall at C2 to grade 0 (absent sensitivity) below L4 in the ASIA Impairments Scale (AIS), and decreased muscle power and movement functions from the area around his cervical spine area (at C5, measured grade 5 = muscle able to exert, in examiner’s judgment, sufficient resistance to be considered normal if identifiable inhibiting factors were not present) down to the sacrum, with the majority of impairment below the level of L2 (from L3 to S1, grade 0 = total paralysis) and involving hip, knees, ankles, etc.

Read more: Assessment

For most interventions, Stefan’s nurse, physical and occupational therapist would be responsible (Figure 3). A number of issues would be addressed by his physician, in addition a psychologist would be consulted for psychological counseling and a music therapist targeted on Stefan’s resource of being musical.

Specific interventions to improve mobility were performed by both the physical and occupational therapists. These included manual therapy and muscle stretching to improve joint mobility; regular circuit training to improve muscle power functions especially in his arms with the aim of improving their supportive function; standing training to reduce the increased muscle tone functions; body balance training that would potentially work to increase his involuntary movement reaction functions and by extension his capacity to maintain a sitting position.

Read more: Assignment and Intervention

Evaluation

The program lasted for three weeks; shortly before it ended an evaluation of goal achievements took place. Overall, Stefan made some significant steps towards independence. Despite the fact that he achieved only the mobility cycle goal, there were still some improvements in the area of self-care after three weeks of interventions (Figure 5).

Improved mobility was critical to overall independence and being able to attend his vocational course. Following this rehabilitation program, he could perform transfers from bed to wheelchair with supervision or, at most, minimal assistance. While other transfers required more support, he was certainly improving his skills. With training he was also better able to independently use the hand bike and, following a small technical adaptation, could dock the SwissTrack (pulling machine for the wheelchair) independently to his wheelchair on his own.

Read more: Evaluation

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.
Read more: Discussion