The aspect of time can have an impact on the lived experience of persons with spinal cord injury/disorder (SCI/SCD)  – on a person's independence in daily activities and participation in economic, social, and community life.

This is the story of Stefan, an adolescent born with spina bifida, a congenital condition affecting the central nervous system, who also incurred a traumatic cervical spinal cord injury (SCI). Stefan's case highlights how the aspect of time impacts his independence in daily activities and lived experience in general.

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.

Based on the results of the assessment conducted by the rehabilitation team as well as Stefan's own statements about his functioning, intervention targets and concrete goals to achieve during Stefan's participation in the three-week rehabilitation programme were identified.

While the nurse, physical therapist (PT) and occupational therapist (OT) were responsible for most of the interventions during Stefan’s three-week rehabilitation programme, a number of intervention targets were also addressed by the physician, psychologist and other health professionals.

Shortly before Stefan's three-week rehabilitation programme ended, a final assessment took place to see whether the goals Stefan and the rehabilitation team set at the beginning of the programme were achieved.

While few studies have specifically explored the temporal aspects of living with a spinal cord injury (SCI) or a spinal cord disease (SCD), this case of Stefan, a person living with spina bifida and additionally with a SCI, highlights that the factor of time is an issue that persons with SCI/SCD, as well as others around the person, must grapple with on a day-to-day basis.

1. World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: World Health Organization; 2001.
2. World Health Organization, World Bank. World report on disability (WRD). Geneva, Switzerland: WHO Press; 2011.
3. Bickenbach J, Officer A, Shakespeare T, von Groote P. Eds. International perspectives on spinal cord injury (IPSCI). Geneva, Switzerland: World Health Organization; 2013.
4. Kirshblum S, Anderson K, Krassioukov, Donovan W. Assessment and classification of traumatic spinal cord injury. In: Kirshblum S, Campagnolo DI. (eds.) Spinal cord medicine. Philadelphia, Pennsylvania (USA): Lippincott Williams & Wilkins; 2011. p. 85-105.
5. Linacre JM, Heinemann AW, Wright BD, Granger CV, Hamilton BB. The structure and stability of the Functional Independence Measure. Arch Phys Med Rehabil. 1994; 75: 127-132.
6. Catz A, Itzkovich M, Agranov E, Ring H ,Tamir A. SCIM  – spinal cord independence measure: A new disability scale for patients with spinal cord lesions. Spinal Cord. 1997; 35: 850-856.
7. Hall KM, Cohen ME, Wright J, Call M, Werner P. Characteristics of the Functional Independence Measure in traumatic spinal cord injury. Arch Phys Med Rehabil. 1999; 80: 1471-1476.
8. Miller W, Chan C. Spinal Cord Independence Measure (SCIM). [Internet] 1 February 2013. Available from: http://www.scireproject.com/outcome-measures-new/spinal-cord-independence-measure-scim. Accessed August 2016.
9. Fekete C, Eriks-Hoogland I, Baumberger M, Catz A, Itzkovich M, Lüthi H, Post MWM, von Elm E, Wyss A, Brinkhof MWG. Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III). Spinal Cord. 2013; 51(1): 40-47.
10. Mulcahey MJ, Calhoun CL, Sinko R, Kelly EH, Vogel LC. The spinal cord independence measure (SCIM)-III self report for youth. Spinal Cord. 2016; 54(3): 204-212.
11. Pagán R. Time allocation of disabled individuals. Soc Sci & Med. 2013; 84: 80-93.
12. Strazdins L, Welsh J, Korda R, Broom D, Paolucci F. 2016. Not all hours are equal: Could time be a social determinant of health? Sociol Health Illn. 2016; 38(1): 21-42.
13. Pentland W, Harvey AS, Smith T, Walker J. The impact of spinal cord injury on men’s time use. Spinal Cord. 1999; 37: 786-792.
14. Burns AS, St-Germain D, Connolly M, Delparte JJ, Guindon A, Hitzig SL, Craven BC. Phenomenological study of neurogenic bowel from the perspective of individuals living with spinal cord injury. Arch Phys Med Rehabil. 2015; 96(1): 49-55.
15. Gribble N, Parsons R, Donlau M, Falkmer T. Predictors of time to complete toileting for children with spina bifida. Austr Occup Ther J. 2013; 60: 343-349.
16. Schönherr MC, Groothoff JW, Mulder GA, Eisma WH. Vocational perspectives after spinal cord injury. Clinical Rehabilitation. 2005; 19(2): 200-208.
17. International Federation for Spina Bifida and Hydrocephalus (IF). Spina bifida - Factsheet. [Internet] Available from: http://www.ifglobal.org/en/spina-bifida. Accessed August 2016.
18. World Health Organization. International Classification of Diseases 11th revision (ICD-11) beta-browser. [Internet] Update March 2016. Available from: http://apps.who.int/classifications/icd11/browse/f/en. Accessed August 2016.
19. Schoenmakers M, Uiterwaal C, Gooskens R, Helders P. Determinants of functional independence and quality of life in children with spina bifida. Clin Rehabil. 2005; 19: 677-685.
20. Sirzai H, Dogu B, Demir S, Yilmaz F, Kuran B. Assessment on self-care, mobility and social function of children with spina bifida in Turkey. Neural Regen Res 2014; 9: 1234-1240.
21. Vermaes IP, Janssens JM, Mullaart RA, Vinck A, Gerris JR. Parents' personality and parenting stress in families of children with spina bifida. Child Care Health Dev. 2008; 34(5): 665-674.
22. Skär RN. Peer and adult relationships of adolescents with disabilities. J Adol. 2003; 26: 635-649.
23. Barf HA, Post MWM, Verhoef M, Jennekens-Schinkel AJ, Gooskens RHJM, Prevo AJ. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation. 2009; 31(11): 921-927.
24. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Dev Disabil Res Rev. 2010; 16(1): 40-46.
25. Ridosh M, Braun P, Roux G, Bellin M, Sawin K. Transition in young adults with spina bifida: A qualitative study. Child: Care, Health and Development. 2011; 37(6): 866-874.