The realities of segregation through the eyes of adolescents with cystic fibrosis: a qualitative study and clinical research portfolio

Introduction: The segregation of patients with Cystic Fibrosis, purposefully keeping them apart from one another, has become common practice in order to reduce infections being passed from one CF patient to another. There is sufficient medical evidence to support these measures as an effective method of preventing early deterioration of the lungs, yet, there has been virtually no research exploring the psycho-social impact of such a policy. This study aimed to fill this void and become the first study to explore segregation from the perspectives of young people with cystic fibrosis. Method: A qualitative design was used and eight young people with Cystic Fibrosis, (aged 13-15) were interviewed at The Royal Hospital for Sick Children, NHS Greater Glasgow & Clyde. Following transcription, in-depth analysis using Interpretative Phenomenological Analysis was carried out. Results: Analysis of transcripts led to the identification of three super-ordinate themes; ‘Acceptance of Source’ which refers to participants overall acceptance of being in source isolation, after weighing up the pros and cons, ‘Personal Models of CF’ which refers to both medical and psycho-social perceptions of having CF, and ‘Normalisation’ emerged through descriptions of methods used to help to them feel normal and cope with CF. It is proposed that loss of any one of these factors may have a negative impact on adjustment. Conclusions: Support was found for the practice of segregation however this is not without a psycho-social cost (i.e. loss of opportunity to openly discuss their health with others and have their experiences validated). These young people also appeared to have heightened awareness of the wider impact of the policy upon their parents. Contact with CF others was recognised by these young people as valuable. Innovative solutions are urgently required to address these potential costs. In light of this, a number of clinical recommendations have been made and areas for future research have been outlined