Article

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.

Langue : ANGLAIS