16 | Time-Related Aspects

Assessment

At the beginning of the rehabilitation programme a comprehensive assessment was conducted to identify Stefan’s and the rehabilitation team's perspective of his functioning status.

The results of the comprehensive assessment of Stefan's functioning, that included an interview with Stefan as well as diverse tests and examinations performed by individual rehabilitation team members, was summarised on the ICF Assessment Sheet and presented according to the components of the International Classification of Functioning, Disability and Health (ICF).1 While some of Stefan's statements during the interview were listed under “Patient Perspective” in the ICF Assessment Sheet, the rehabilitation team assessment results were presented under “Health Professional Perspective” in ICF terms without codes. See table 1.

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Table 1. ICF Assessment Sheet

For example, under the ICF component of body structures and functions Stefan's sensory problems were expressed in Stefan's statements “the sensitivity in my body decreases more and more, the lower the body location” and “I can’t sense any pressure when sitting”. This was supported by the rehabilitation team, who documented moderate to severe impairment in proprioceptive functions, touch functions and sensations related to muscles and movement functions.

Independence in Mobility and Self-care

Under the ICF component of activities and participation, Stefan's mobility problems were expressed in several statements:

I can’t transfer in and out of the car...When I fall out of the wheelchair I am unable to get back by myself.

Stefan during the initial interview

The rehabilitation team supported Stefan's statements about his mobility problems, and added that in addition to having severe difficulty in transferring himself, Stefan also had severe difficulty using public transportation.

One factor that contributed to Stefan's mobility limitations was his stiffened spine resulting from the surgeries to treat scoliosis. Another contributing factor was spasticity (increased muscle tone); this led to reduced mobility of Stefan's right elbow joint, that in turn, impacted on transferring and other mobility problems.

In addition to mobility problems, Stefan faced problems in self-care. He was unable to dress nor wash himself independently, requiring 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.

Stefan's low or lack of independence in some aspects of mobility and self-care is consistent with research that indicate that body function impairments in persons with spina bifida, especially in the lower extremities, are determinants of independence in mobility and self-care. Schoenmakers et al. found that mental status, contractures and muscle strength in the lower extremities of children with spina bifida were strong determinants of independence in mobility and self-care. Specifically, mental ability, good muscle strength, and no contractures were associated with independence in mobility and self-care. Muscle strength in the knee was also found to be significantly associated with independent transferring, stair-climbing, and moving around indoors and outdoors. Furthermore, independence in mobility seemed to contribute more to quality of life than independence in self-care.{cs16-fn19} These study results were supported by other study findings.{cs16-fn20}

Aspect of Time and Independence in Mobility and Self-care

The aspect of time played a major role in Stefan's independence in mobility and self-care, or lack thereof.

I am dependent on others for transferring from bed to wheelchair  – with more time I am able to transfer more independently.

Stefan during the initial interview

He himself stated that he was slow in performing tasks, such as shaving, moving around, and using public transportation, and that time management was a problem for him. The rehabilitation team concurred, adding that Stefan had moderate difficulty in handling stress and severe difficulty carrying out a daily routine.

A possible contributing factor may have also been Stefan learning difficulties (based on his own statements). This is consistent with the aforementioned research that identified mental status as a determinant of independence in mobility and self-care.

"Stefan's limited independence in mobility and time management problems had an impact on his performance of various daily activities as well as on his participation in major life situations."

Stefan's limited independence in mobility and time management problems had an impact on his performance of various daily activities as well as on his participation in major life situations. At the time of the case study, Stefan had planned to attend a one-year vocational preparatory course after finishing school. Since the course was offered in another city, his participation in the course was contingent upon Stefan's ability to independently use public transportation in a time-efficient manner.

Influence of Contextual Factors on Independence

Contextual factors, both environmental and personal factors, also influenced Stefan's independence in daily life.

Stefan owned two manual wheelchairs and a Swiss-TracTM (a motorised device for pulling the wheelchair). Despite living in a wheelchair-adapted house, he frequently experienced the physical environment as a barrier.

For the majority of his activities of daily living, Stefan received support from his family (primarily his mother). While this support was welcomed, it also had an unintended consequence  – Stefan gradually “unlearned” some of the skills necessary to perform activities such as transferring and self-care.

My mother does everything for me...she says: ‘You should do this on your own,’ but still goes ahead and helps me anyway.

Stefan

In terms of personal factors, the fact that Stefan attended regular school rather than a special school for persons with disability, his thirst for knowledge (particularly history), and his plan to participate in a one-year vocational preparatory course were all facilitators of his functioning. 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, were counterproductive to Stefan's efforts toward gaining independence.

The ICF Assessment Sheet provided an overview of Stefan's functioning that helped him and the rehabilitation team to identify his needs and to plan appropriate interventions.

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