Children with myelomeningocele and independence in the toilet activity: A pilot study

Objective: Regarding adult life and independence the most common obstacles for young adults with myelomeningocele (MMC) are cognitive dysfunction and difficulties in performing toilet activities. A step-by-step method with goal setting for the training of self-care in toilet activities for children with MMC was evaluated. Method: Twenty-two children with MMC and bladder and bowel dysfunction (12 girls, 10 boys) aged 3-17.2 (m 9.1) were included. The toilet activities were observed at home jointly by an occupational therapist and urotherapist. Goal-setting procedures of self-training were promoted. Observation scores before and after intervention were compared, the goal setting being evaluated on a Goal Attainment Scale (GAS). Results: Fifteen children who trained in self-catheterization had a median observation score of 22 before and 37 after the training period (p = 0.002). Another seven trained in trans-rectal irrigation with a median score of 30 before and 49 after (p = 0.02). As a result of GAS all children improved, of whom 17 reached the goal or even more so than expected. Conclusions: In this pilot study mutual goal setting in a step-by-step training programme based on professional observation of the toilet activity at home showed a better outcome than traditionally performed training in a hospital setting or with traditional habilitation support.