Disabled children and adolescents may be outsiders in the community.

BACKGROUND: Most children with neurogenic bladder and bowel dysfunctions suffer from myelomeningocele and shunted hydrocephalus. Fewer such births and better treatment have led to more children reaching adulthood. Increased knowledge about their lived experiences can direct support to help them. AIM: The study aims to investigate how children and adolescents aged between 10 and 18 years old with neurogenic bladder and bowel dysfunction live their everyday life. METHODS: Hermeneutic phenomenology was appropriate to investigate the participants' experiences in depth. Thirteen qualitative interviews were analysed by coding line-by-line in order to find the essence and themes that underpin their responses. FINDINGS: The major theme being an outsider in the community, was built upon the themes, constraint and togetherness. Constraint was caused by their need for regular clean intermittent catheterization, bowel movement, aids and assistance from others, which identified a participant as being an outsider. They were only partially outsiders because they were inside the community and they enjoyed togetherness in their everyday life from their families, peers and other significant people. They appeared to be rather unaware of their problems. LIMITATIONS: The wide range of participants' ages was a limitation, as these young people develop a great deal between these ages; in order to guarantee confidentiality, the participants were too few to divide into groups. CONCLUSIONS: These young people would be helped if supported more towards independence by people inside their circle. Today, support is usually given by personal assistants and by the use of advanced techniques. Less support is given for development towards independence. Competent health-care professionals working together with the parents should have the opportunity to provide such valuable support.

Night-time diuresis pattern in children with and without primary monosymptomatic nocturnal enuresis.

INTRODUCTION: Night-time polyuria as the dominating pathophysiological mechanism for primary monosymptomatic nocturnal enuresis (PMNE) has been put in question with nocturnal detrusor overactivity and high arousal thresholds as alternatives. An earlier finding of night-time polyuria in 12% of healthy non-enuretic schoolchildren underscores that excessive night-time diuresis per se is unlikely the major cause of PMNE. OBJECTIVE: The objective of this study was to compare the night-time diuresis pattern in children with and without PMNE and to evaluate the role of night-time polyuria in provoking enuretic episodes in children with PMNE. STUDY DESIGN: Night-time diuresis pattern was recorded in 27 children with PMNE, aged 6-15 years, and 29 non-enuretic children, aged 6-13 years. Using a portable ultrasound recorder, the bladder volume was estimated at 15-min intervals for at least three nights with the child sleeping in its own bed at home. The volume of enuretic episodes was controlled using preweighed diapers. All voids were registered by time and volume. Diuresis during night time was estimated from the slope of regression lines fitted to ultrasound recording points. Mean night-time diuresis was calculated from total urine production during the night and time interval from the last void before bedtime to the first morning void. RESULTS: Night-time bladder filling pattern was recorded from 189 nights, giving 149 interpretable patterns for analysis (77 children with PMNE and 72 dry children). The night-time diuresis pattern was similar for children with or without PMNE, showing large variability between different nights of the same child. Most nights displayed a smooth bladder filling at constant low rate, whereas other nights showed an early phase with high diuresis followed by a longer period of low diuresis with no difference between the two groups. DISCUSSION: Night-time diuresis has been non-invasively monitored in children while asleep in their own beds at home. The pattern of night-time diuresis varies considerably between different nights of the same child, with no obvious differences in any diuresis parameters between children with or without PMNE. CONCLUSION: Non-enuretic children have similar diuresis pattern and maximal night-time diuresis values as children with PMNE, making it unlikely that PMNE is caused by night-time polyuria per se (Summary figure). Delayed maturation of sleep mechanisms such as decreased arousability or sleep inhibition of the micturition reflex is more likely to be the main etiology for enuresis.