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Disabled children and adolescents may be outsiders in the community

A M Fägerskiöld1, G Glad Mattsson

  • 1Department of Medical and Health, Division of Nursing Science, Faculty of Health Sciences, Linköping University, Linköping, Sweden. astrid.fager@tele2.se

International Nursing Review
|November 6, 2010
PubMed

Insights

Children with neurogenic bladder and bowel dysfunction often feel like outsiders due to medical needs but find togetherness within their families and communities. Enhanced support for independence is crucial for their well-being.

Area of Science:

  • Pediatric healthcare
  • Quality of life studies
  • Neuroscience

Background:

  • Neurogenic bladder and bowel dysfunction commonly affects children with myelomeningocele and shunted hydrocephalus.
  • Improved medical care allows more affected children to reach adulthood.
  • Understanding their lived experiences is key to improving support systems.

Purpose of the Study:

  • To explore the daily lives of children and adolescents (10-18 years) with neurogenic bladder and bowel dysfunction.
  • To gain in-depth understanding of their lived experiences.

Main Methods:

  • Hermeneutic phenomenology approach used for in-depth experience investigation.
  • Qualitative interviews with thirteen participants.
  • Line-by-line coding to identify essential themes.

Main Results:

  • The primary theme identified was 'being an outsider,' stemming from themes of constraint and togetherness.
  • Constraint arose from medical needs (catheterization, bowel management, assistance), marking them as outsiders.
  • Participants experienced partial outsider status, balancing community inclusion and enjoying togetherness with family and peers, often unaware of their challenges.

Conclusions:

  • Support for independence is vital for these young people, with less emphasis on advanced techniques and personal assistants.
  • Collaboration between competent healthcare professionals and parents is essential for providing effective support.
  • The study highlights the need for tailored support to foster independence in adolescents with neurogenic bladder and bowel dysfunction.
Abstract

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