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.

Dependency pertaining to disability is often characterized 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. However, it is important to consider that the degree of dependency, or from a positive standpoint – independence – in a given activity relates not only to the extent a person can perform activities without personal or technical assistance, but also the time available and necessary to perform them. The ICF addresses temporal aspects of functioning – both implicitly and explicitly – across a number of categories.

Box 1 | Time consumption reflected in the ICF

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, organizing time, space and materials for a task, pacing task performance, and carrying out, completing, and sustaining a task. Inclusions: undertaking a simple or complex task; undertaking a single task independently or in a group.

d220 Undertaking multiple tasks

Carrying out simple or complex and coordinated actions as components of multiple, integrated and complex tasks in sequence or simultaneously. Inclusions: undertaking multiple tasks; completing multiple tasks; undertaking multiple tasks independently and in a group

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. Inclusions: managing and completing the daily routine; managing one’s own activity level

d2301 Managing daily routine

Carrying out simple or complex and coordinated actions in order to plan and manage the requirements of day-to-day procedures or duties.

d2302 Completing the daily routine

Carrying out simple or complex and coordinated actions in order to complete the requirements of day-to-day procedures or duties.

d2303 Managing one’s own activity level

Carrying out actions and behaviours to arrange the requirements in energy and time day-to-day procedures or duties.

d240 Handling stress and other psychological demands

Carrying out simple or complex and coordinated actions to manage and control the psychological demands required to carry out tasks demanding significant responsibilities and involving stress, distraction, or crises, such as driving a vehicle during heavy traffic or taking care of many children. Inclusions: handling responsibilities; handling stress and crisis.

Spinal Cord Disorders and Dependency

Spinal cord disorders (SCD) such as spina bifida (SB), relate to impairments in body structures and body functions from which some have been identified as determinants for limitations in activities, and restrictions in participation.2 Influenced by non-supportive or hindering environmental factors, SB may lead to disability and consequently to increased dependency in daily living.

There are a number of underlying factors that may influence an SCD patient’s level of dependency, including impairments in muscle power functions, mobility of joint functions and mental functions.2 In a study by Andren and Grimby the dependency of 31 persons living with SB or cerebral palsy in a range of activities were evaluated across a period of 5 years. Activities that required substantial or total assistance included climbing stairs, washing, cleaning, bathing, dressing and transferring.3 In their 5-year assessment, Andren and Grimby found that over 80% of persons with disability have modified independence in outdoor mobility.

Measuring Independence

To measure independence, a number of different instruments are available.

The Functional Independence Measure (FIM)4 is one example of a measure of independence in a person living with a disability. Independence is assessed and measured within the areas of self-care, sphincter control, transfers, locomotion, communication, and social cognition that are graded in a seven-point score from complete independence to total assistance.

The Spinal Cord Independence Measure (SCIM)5 is another metric that assesses a person with SCD’s functioning in the areas of self-care, mobility, respiration and sphincter management. Other measures applicable in children and adolescents include: Pediatric Evaluation of Disability Inventory (PEDI)6, Functional Independence Measure for Children (WeeFIM)7, and the Instrumental Activity Measure (IAM)8.

In general terms, less available time may increase dependency, productivity (both in the private sphere and professionally), quality of life and overall life satisfaction, with time restrictions affecting

  • the person living with the disability
  • caretakers
  • employers

While few studies have addressed time in relation to disability in persons with SCD directly, it seems likely that temporal limitations could greatly restrict participation in life situations. Although a person with SCD may still be technically independent, if certain actions and undertakings require too much time investment, he or she may face limits in what is possible – through employment, mobility and/or activities.

For parents of children with disabilities, significant psychological stresses that include physical health complaints, depression and anxiety have been documented.9 In children with SB, the need for assistance and the extra time required for many basic activities including mobility and bowel/bladder dysfunction constitute “ongoing stressors” for parents and present participation restrictions for the children.10

For employers, many restrictions can be mitigated through assistive devices, the type of work and increased social services and environmental access.11 It is clear that a majority of persons living with SCD are able to work: in one cross sectional study of 165 adults living with SCD for more than 20 years, 65% were employed at some point in that time period and 35% had work at the time of the study.12

Addressing issues of time in rehabilitation

Independence and lack of time is an ever-present theme in the lives of persons living with SCD and reflected in their experience of living with a disability:

Everything just takes much longer, one becomes slower and that is what everyone tells you will be the case - the doctors, the therapists: a person with spina bifida is just “slow

Gaby, living with spina bifida (from Case Study 15)

Everything one does is so time-consuming; and if you don’t have the time, or the people around you don’t have the time...

Helen, living with Guillane-Barre Syndrome (from Case Study 3)

To achieve and maintain the highest level of independence, taking into account available time for a given activity, it is logical that addressing and improving those factors that cause time constraints would help to increase a person with SCI’s overall independence. Increases in efficiency could occur through:

  • Reducing impairments in body functions and/or body structures to increase functional capacity and/or capability in activities
  • and reducing the time required for activities by
  • optimizing procedures, e.g. developing and adapting compensation strategies
  • improving overall time management
  • optimizing the social and physical environment (e.g. increasing the abilities of personal care providers and provision and optimization of assistive devices; addressing the attitude of the persons in the immediate environment towards the need for more time)

It is important to note that the final category - environmental optimization - may often also involve interventions focusing on parents and/or caretakers. In a review of secondary conditions related to SB, limited parental expectations and overprotection were found to result in reduced participation and increased dependence, respectively.13 Family counselling and support and child skill training were important interventions aiming to minimize such effects and promote independence.

This case study aims to illustrate some of the challenges of being independent in carrying out a daily routine in a young man living with spina bifida by focusing on issues of time and the activities of daily living.