New challenges faced by carers during their child's hospital admission under segregation

Kate Russo, Michael Donnelly, Alastair Reid

Research output: Chapter in Book/Report/Conference proceedingConference contribution

Abstract

Introduction
This paper presents the results of a qualitative study of CF family carers at the Belfast Paediatric CF Centre. The aim of this study was to describe the carer experience of their child’s admission to hospital under segregated care arrangements, and to highlight the meaning of segregation and cross infection from the carer perspective.

Method
Carers of children with CF who were admitted for two week IV antibiotic treatment during the study period were eligible to participate in this qualitative study. A consecutive series of eligible carers were approached in order of admission and within the time constraints of KR who was present two days each week. Recruitment of carers ended when no new themes emerged. Ten carers, 9 mothers and 1 couple, were interviewed about their experiences (mean age of child: 11.8 years; range: 1-17 years). Interpretative Phenomenological Analysis (IPA) was used to analyse and interpret the interview data.

Results and discussion
Balancing demands and dilemmas was the main contextual theme or experience of being a carer of a child with CF, and particularly so during admission to hospital. Many decisions were required every day that resulted in ‘double binds’ comprising uncertainty and stress. Three secondary themes captured the essence of carers’ experiences specifically related to segregation: managing risk and uncertainty; the burden of admission; and getting through each day. These themes will be described with examples illustrating the challenges faced by carers during their child’s hospitalisation, and the impact of segregation upon carers.
Original languageEnglish
Title of host publicationJournal of Cystic Fibrosis
Subtitle of host publicationProceedings of the 31st European Cystic Fibrosis Conference, Prague
Volume7
EditionSupplement 1
Publication statusPublished - 2008

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