Psychosocial factors in teenagers and young adults with myelomeningocele and clean intermittent catheterization

Abstract

Objective. The aim was to analyse the psychosocial factors of teenagers and young adults with myelomeningocele with at least 5 years’ experience of clean intermittent catheterization (CIC). Material and methods. A qualitative interview technique with semi-structured questions was used in 22 participants aged 13–26 years (median 17) and issues addressed were information given to others, integrity, attitudes to other disabilities, friendship, partnership and sexuality. Results. The participants wanted to inform their peers about the disability but often did not have the courage. Ignorance of the principle of self-CIC among medical staff was confusing. Urinary incontinence after the introduction of the self-CIC regimen was not seen as a problem in comparison with other major disabilities. Half of the participants had peers that they could call a best friend. The subjects wanted more specific information regarding their own sexual function. Finding a partner and becoming a parent were strongly desired but considered problematic. Conclusions. The participants wished to acquire more knowledge about CIC as a bladder-emptying method from the medical staff and also to have the respect to perform self-CIC at examinations. This study did not find any negative psychosocial factors associated with CIC.

• Clean intermittent catheterization
• myelomeningocele
• psychosocial factors
• quality of life
• teenager