Everything around me moves so fast…people with disabilities are not taken into consideration.
Stefan, an adolescent with spina bifida reflecting on the aspect of 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, restrictions in participation, and both environmental and personal factors.11 Although not specifically addressed in this description, disability can lead to a level of dependency in daily living.
Dependency pertaining to disability is often characterised by the reliance on a person (e.g. personal assistant) or technical equipment (e.g. assistive device) in order to perform tasks autonomously and/or participate in life situations. The role of environmental factors, such as physical barriers, has also been mentioned in the context of dependency.23 The degree of dependency, or from a positive standpoint – independence – in a given activity not only relates to the extent a person can perform activities without personal or technical assistance, but also the time available and necessary to perform them. Temporal (time) aspects of functioning are implicitly and explicitly addressed across a number of categories in the ICF.
Box 1 | Aspect of Time As Reflected in the ICF
The following are examples of ICF categories (in verbatim)1 in which the aspect of time is reflected:
- b1642 Time management: Mental functions of ordering events in chronological sequence, allocating amounts of time to events and activities.
- d210 Undertaking a single task: Carrying out simple or complex and coordinated actions related to the mental and physical components of a single task, such as initiating a task, organising time, space and materials for a task, pacing task performance, and carrying out, completing, and sustaining a task.
- d220 Undertaking multiple tasks: Carrying out simple or complex and coordinated actions as components of multiple, integrated and complex tasks in sequence or simultaneously.
- d230 Carrying out daily routine: Carrying out simple or complex and coordinated actions in order to plan, manage and complete the requirements of day-to-day procedures or duties, such as budgeting time and making plans for separate activities throughout the day.
- d850 Remunerative employment: Engaging in all aspects of work, as an occupation, trade, profession or other form of employment, for payment, as an employee, full or part-time, or self-employed, such as seeking employment and getting a job, doing the required tasks of the job, attending work on time as required, supervising other workers or being supervised, and performing required tasks alone or in groups.
Assessing Independence of Persons with SCI/SCD
A number of instruments are available to assess independence (dependency) of persons with disability in various areas of functioning.
The Functional Independence Measure (FIM)® is one example of an instrument that was designed to measure independence in a person living with any disability (not specifically for persons with SCI or SCD).454 In FIM, independence is assessed using 18 items in the areas of self-care, sphincter control of bladder and bowel, transfers, locomotion, communication, and social cognition. The 18 items are graded according to a seven-point scale with a score of 7 indicating complete independence to a score of 1 indicating total assistance (or complete dependency). Although only the score of 7 refers to the timeliness of completing an activity, FIM scoring is considered a reflection of “burden of care” i.e. the amount of time and energy provided by another person or the amount of time the person needs when using assistive devices to do an activity.4
Despite the fact that FIM is widely accepted and employed in rehabilitation, there are some limitations to using it in the spinal cord injury/spinal cord disorder (SCI/SCD) population.467
""Despite the fact that FIM is widely accepted and employed in rehabilitation, there are some limitations to using it in the SCI/SCD population.""
An instrument that has been developed to assess the independence of persons with SCI or SCD is the Spinal Cord Independence Measure (SCIM).67
{BOX 2 ZEIGT SICH NICHT RICHTIG. SOLLTE HIER ANFANGEN. BITTE KORRIGIEREN. BESTEN DANK.}
Box 2 | Spinal Cord Independence Measure (SCIM)
- Self-care – 6 items: Feeding, Bathing the upper and lower body, Dressing the upper and lower body, and Grooming
- Respiration and Sphincter Management – 4 items: Respiration, Sphincter management bladder, Sphincter management bowel, and Use of toilet
- Mobility (room and toilet) – 3 items: Mobility in bed and action to prevent pressure sores, Transfers bed-wheelchair, and Transfers wheelchair-toilet-tub
- Mobility (indoors and outdoors, on even surface) – 6 items: Mobility indoors, Mobility for moderate distances (10-100 metres), Mobility outdoors (more than 100 metres), Stair management, Transfers wheelchair-car, and Transfers ground-wheelchair
{BOX 2 SOLL HIER ENDEN}
Assessing Independence of Children/Youth with SCI/SCD
Despite the lack of scientific literature on the specific use of SCIM-III in children and youth, SCIM-III is seen as highly relevant for this age group as well.10.678 However, for optimal use in children and youth, the items and response options required modifications. Based on formal cognitive testing and a Delphi study using SCIM-III-SR, Mulcahey et al. found that the items and the response options had to be reworded to adapt to the language children and youth are able to read and understand. Some items also required a bit more explanation. For example, the item "Bladder management. Please think about the way you empty your bladder" was reworded to say "Do you need help with urination, or how you pee?". Instead of "Use of indwelling catheter" one response option was reworded as "I have a tube (foley) inside of me all the time that lets me urinate (pee)". Consequently, Mulcahey et al. developed a paediatric version of SCIM-III-SR (SCIM-III-SR-Y).10
""...for optimal use in children and youth, the items and response options [of SCIM-III-SR]...had to be reworded to adapt to the language children and youth are able to read and understand.""
Again, like the other versions of SCIM, SCIM-III-SR-Y does not contain any references to the amount of time a person needs to complete an activity.68910
Time Issues and SCI/SCD
While few studies have addressed issues of time in relation to the functioning of persons with disability, the available research indicates that persons with disability require more time to complete daily activities as compared to those without disability. Persons with disability spend more time on household duties, sleeping, personal care, medical treatment, etc. In a study conducted by Strazdins et al. persons with disability were more likely to report feeling rushed and having insufficient time for completing activities.1112
""...the inability to meet time demands of a job is seen as a possible hindrance for persons with disability to participate in the workforce...providing assistance that optimises the time spent on everyday activities...ultimately increase the labour market participation of persons with disability.""
Furthermore, the inability to meet time demands of a job is seen as a possible hindrance for persons with disability to participate in the workforce. However, it has been suggested that providing assistance that optimises the time spent on everyday activities such as household duties, can increase the time available for work and ultimately increase the labour market participation of persons with disability.1112 .
These findings are consistent with results of scarce research investigating time issues related specifically to persons with SCI/SCD.
In one study that was found, Pentland et al. reported that the 312 men with SCI living in the community who they included in the study spent considerably more time (on average 78 minutes/day versus 40 minutes/day in the non-SCI group) on personal care activities e.g. washing, dressing, medical care, than men without SCI, and 20% more time on leisure activities, predominately with communication or media-related activities, than those without SCI.13 In another study conducted by Burns et al., participants with SCI reported being frustrated that the increased time requirements for bowel management (compared with before the injury) took time from other activities and placed restrictions on their daily schedule.14 This is supported by the findings of Gribble et al. who investigated the predictors of toileting time of children with spina bifida.15
With regard to time-related issues and work participation, Pentland et al. found that study participants with SCI spent on average 2.7 less hours or 53% less time in paid work than those without SCI.13. In another study Schönherr et al. revealed that 47% of the employed study participants reported working under time pressure, and 21% wanted more job modifications, specifically more freedom with personal time management.{cs16-fn16}
Extensive time requirements to complete daily activities can also impact on social participation.
It looks awkward when you’re using the bathroom for 45 minutes in someone’s house.
Participant of Burns et al. study on reluctance to leave home for socialising14
In the case of children/youth, extensive time requirements for example for bowel or bladder management15 could mean that the child/young person experiences restrictions in socialising at the playground or learning in a classroom with other pupils.
In short, persons with disability, including those with SCI/SCD, require more time to complete everyday activities. This, in turn, can result in restricting participation in various life situations.
Time Issues and Independence – A Case Study
Although an association is not always clearly shown (see information above on SCIM-III and SCIM-III-SR-Y), independence and time issues are ever-present themes in the lives of persons with SCI/SCD. This is evident in the case of Stefan, a young man living with spina bifida.
This case study of Stefan illustrates how time issues confounded the challenges he faced in his effort to increase his independence in daily activities.