Disabled children and adolescents may be outsiders in the community

Abstract

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.