Segregation--the perspectives of young patients and their parents

Abstract

Background: Segregation is used increasingly to prevent cross infection, yet little is known about service users' views regarding segregation and its perceived impact. The aim of this study was to elicit patients and carers' views and to involve them in the process of introducing segregation in a paediatric CF centre.

Method: Open-ended questionnaires were posted to all parents (n=192) and to patients over 10 years (n=101). A content analysis identified common themes. Inter-rater agreement about themes was high (83%).

Results: Parents (91%) and children (92%) supported segregated treatment. Parents appeared to be aware of the positive and negative aspects of segregation, and to engage in a balancing act that led them to conclude that segregation was a 'necessary evil'. Children appeared to be less analytical and were concerned mostly with boredom and isolation. Age, level of maturity, and hospital experience were perceived to be determinants of patient adaptation to segregation.

Conclusion: Segregation has considerable emotional, social, and practical implications for patients and families. Obtaining users' views increased our understanding of the psychosocial consequences of segregation and facilitated its implementation.