Restrictions in social participation of young adults with spina bifida

Author： Barf H. A. Post M. W. M. Verhoef M. Jennekens-Schinkel A. Gooskens R. H. J. M. Prevo A. J. H.

ISSN： 1464-5165

Source： Disability and Rehabilitation, Vol.31, Iss.11, 2009-05, pp. : 921-927

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Abstract

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.