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.
These results were rated as an AIS C impairment (Incomplete: Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3). Furthermore, Stefan had a degree of bladder and bowel incontinence where he could hold neither once full. As a result of the surgeries needed to treat his scoliosis, he also had a stiffened spine, limiting his overall mobility. The mobility of his right elbow joint was also limited as a consequence of increased muscle tone.
He could neither dress nor wash himself independently and required assistance (most often provided by his mother) for eating, toileting and looking after his health.
Regarding activities and participation, problematic tasks for Stefan included independent transferring from bed to wheelchair, into and out of the car, and getting back into his wheelchair, utilizing transportation, and moving around with assistive devices. Regarding self-care, several limitations could be identified: he could neither dress nor wash himself independently and required assistance (most often provided by his mother) for eating, toileting and looking after his health (e.g. controlling for bed sores or other skin conditions).
Additionally to these movement related limitations, he had some learning difficulties - not uncommon among persons living with SB - but a further area requiring a significant time investment. Central to Stefan’s limitations in activities were his slow pace in performing tasks in combination with poor time management. As a consequence, his health care team felt Stefan had difficulties in handling stress and carrying out a daily routine.
Clearly, limitations in most of these activities could impact the efficiency with which Stefan could act. While in general Stefan could act independently with respect to many activities, the relation between the time required and the time available, for example, to perform self-care such as shaving, or to move about and utilize modes of public transport, had a qualitative impact on his functioning and in turn, on his daily routine.
Regarding his educational perspective, Stefan was able to attend and would soon complete his school education. He hoped soon to attend a one-year vocational course some distance away in another city. However, this was contingent upon his ability to return home on the weekends. And this required his independent and efficient use of public transportation.
Due to his near constant assistance, Stefan slowly unlearned some of the skills necessary in performing activities of daily living, including transferring and self-care.
As mentioned, he was an avid and talented pan-pipe player and enjoyed reading, swimming, music and computers.
Among contextual factors (both environmental and personal), Stefan owned two manual wheelchairs and a SwissTrack (motorized pulling machine for the wheelchair), he lived at home in a wheelchair-adapted house but the physical environment was frequently experienced as a barrier. For the majority of his activities of daily living, and he was supported by his family (primarily his mother). While this support was welcome, it had an unintended consequence: due to his near constant assistance, Stefan slowly unlearned some of the skills necessary in performing activities of daily living, including transferring and self-care.
My mother does everything for me...and at the same time says, ‘You should do this on your own.’. Still, she goes ahead and helps me anyway -
Stefan attended regular school and a thirst for knowledge (particularly history), and his intention to undertake the year long vocational course were all considered to influence his functioning positively. In contrast, poor self-esteem (Stefan described himself as a “loner” and “lazy”) and a fear of falling in combination with an aversion to speed didn’t contribute to his independence at this time-point.
The ICF Categorical Profile (Figure 2) illustrates Stefan’s level of functioning at the time of assessment. Based on this assessment, goals have been defined: A Service Program Goal was established for increasing independence in his daily routine.
A fear of falling in combination with an aversion to speed didn't contribute to his independence.
Two Cycle Goals were defined for improving mobility and improving self-care. The health care team felt that gains in these areas would have an overall impact of a more efficient use of the available time in the activities of daily living (as well as decreasing dependence on others for a range of participation domains).
To improve mobility, intervention targets included joint mobility, muscle power, muscle tone, as well as a range of activities: changing body positions, maintaining a sitting position, transferring, fine hand use, moving the wheelchair and using transportation. To address the goal of self-care, bladder/bowel function, washing, toileting, dressing, eating and looking after one’s health were defined as intervention targets. To optimize the use of the available time for performing the latter activities, both the adaptation of assistive devices and learning better compensation strategies would be necessary.
Figure 2: ICF Categorical Profile: *ICF Qualifier range from 0 = no problem to 4 = complete problem in the components of body functions (b), body structures (s), activity and participation (d) and from -4 = complete barrier to +4 = complete facilitator in the environmental factors. In personal factors, the sign + and - indicates to what extent a determined pf has a positive or negative influence on the individual’s functioning. °C1,2,3 mark the relation to Cycle goals 1,2,3; SG is related to Service Program Goal, G related to the Global goal