Restrictions in social participation of young adults with spina bifida

Disabil Rehabil. 2009;31(11):921-7. doi: 10.1080/09638280802358282.


Purpose: To determine participation restrictions of young adults with spina bifida (SB) in relation to health condition and activity limitations.

Method: A total of 179 persons aged 16-25 years and born with SB participated in a cross-sectional study. The main outcome on four domains of participation (independent living, employment, education and partner relationships) was assessed using a structured questionnaire.

Results: At the mean age of 21 years only 16% were living independently, more than one-third of the participants went to special secondary education, 53% of those who finished education did not have a regular job and 71% did not have a partner. Health condition variables (type of SB, hydrocephalus and level of lesion) and to a lesser extent activity limitations (wheelchair dependence and incontinence) were significant determinants for having participation restrictions. Perceived hindrances in participation included long-distance transportation (19-36%), accessibility (10-42%), physical impairments (22-40%), emotional barriers (20-32%) and financial limits (3-17%). More severe SB, defined as hydrocephalus, high level of lesion and wheelchair dependence, was related with more experienced hindrances due to long-distance transportation accessibility of buildings.

Conclusions: Many young adults with spina bifida experience participation restrictions. Severity of SB was negatively related to participation. Social integration should be a major focus in the professional guidance of youngsters with physical disabilities.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living*
  • Adolescent
  • Chi-Square Distribution
  • Cross-Sectional Studies
  • Educational Status
  • Employment / statistics & numerical data
  • Female
  • Humans
  • Interpersonal Relations
  • Male
  • Social Behavior*
  • Spinal Dysraphism / physiopathology*
  • Surveys and Questionnaires
  • Young Adult