The psychosocial impact of segregation in cystic fibrosis : a phenomenological study
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- © 2007 Kate Russo. All rights reserved. No part of this publication may be reproduced without the written permission of the copyright holder.
Background. Segregation, a procedure where people with Cystic Fibrosis (CF) are restricted or discouraged from social mixing, is used increasingly to prevent crossinfection in CF Centres. However, research is sparse about the impact of segregation, particularly the potential negative psychosocial impact, on young people with CF. Objectives. To gain an in-depth understanding about the experience of hospitalisation under segregation and its impact from the perspective of the young person with CF.
Method. In-depth interviews were conducted with 14 young people with CF aged 7 to 17 years at the end of their two-week admission for IV antibiotics. Interpretative Phenomenological Analysis (JP A) was used to analyse transcribed interviews.
Results. The young people could be categorised into two groups in terms of their experiential history of hospitalisation. Segregation was 'protective, and better than expected' for relatively 'inexperienced' participants; whereas it was deemed to be 'restrictive, and led to a difficult stay' by 'experienced' participants. Three common themes appeared to characterise the views of all participants regarding the issue of cross-infection: 'wanting to reduce the risk', 'the importance of contact with similar others' and 'difficult choices'. A range of coping strategies were discernible from the data with the main connecting theme regarding coping as 'being resilient'.
Discussion. The themes emanating from the data are discussed in terms of Lazarus and Folkman's Transactional Model of Stress and Coping and the concept of peer support. The results suggest that there may be four ways in which segregation impacts negatively upon young people with CF in terms of: (1) anxiety about bacterial infection, (2) loss of CF peers, (3) learning to cope with limited social contact during hospitalisation, and (4) fragmentation of the CF community. The findings are discussed in relation to existing research and in terms of their clinical implications.
- Postgraduate Medical Institute, The University of Hull
- Donnelly, Michael
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