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Segregation--the perspectives of young patients and their parents

Kate Russo1, Michael Donnelly, Alastair J M Reid

  • 1Royal Belfast Hospital for Sick Children, UK. kate.russo@royalhospitals.n-i.nhs.uk

Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society
|February 2, 2006
PubMed

Insights

Parents and children with cystic fibrosis (CF) support segregated treatment, viewing it as a "necessary evil." Understanding patient and carer perspectives is crucial for implementing segregation effectively.

Area of Science:

  • Pediatric Pulmonology
  • Infectious Disease Control
  • Patient-Centered Care

Background:

  • Increasing use of segregation to prevent cross-infection in healthcare settings.
  • Limited understanding of patient and carer perspectives on segregation's impact.
  • Need to involve service users in implementing segregation strategies.

Purpose of the Study:

  • To gather patient and carer views on segregation in a pediatric cystic fibrosis (CF) center.
  • To understand the perceived impact of segregation on service users.
  • To facilitate the implementation of segregation by incorporating user feedback.

Main Methods:

  • Distribution of open-ended questionnaires to parents (n=192) and patients over 10 years old (n=101).
  • Content analysis to identify common themes in responses.
  • High inter-rater agreement (83%) ensuring reliability of theme identification.

Main Results:

  • Overwhelming support for segregated treatment from both parents (91%) and children (92%).
  • Parents recognized segregation as a 'necessary evil,' balancing pros and cons.
  • Children focused on boredom and isolation; age, maturity, and experience influenced adaptation.

Conclusions:

  • Segregation significantly impacts patients and families emotionally, socially, and practically.
  • Incorporating user views enhances understanding of psychosocial consequences.
  • Eliciting patient and carer perspectives aids successful segregation implementation.
Abstract

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