Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis

摘要

Living with chronic illness can lead to a spiral of losses including social capital, mobility, physical health and self-worth. One method of coping with a long-term condition is normalcy: psychological bracketing of the illness as a means of coping, and may include the embodiment of treatment as part of the norm. This paper explores the concept of normalcy in young people with cystic fibrosis, disseminated through poetry. The theme of normalcy emerged in a study exploring the experiences of young 'expert patients' in partnership with their healthcare team. Observations of outpatient consultations between 10 young people with cystic fibrosis (CF), two carers and the CF team (n=11) and subsequent interviews were undertaken to explore perceptions of partnership. Once findings emerged from the original study these were recrafted into poems as an alternative means of dissemination. The poetry from 'what's in a norm?' reflects the young people's voices and the writer's interpretation of how normalcy has become embedded into their ways of being. Minimising the impact of CF in this sample was commonplace. Normalcy as a concept emerged strongly in young people with CF in this study. Almost exclusively young people viewed the range of treatments and symptoms as not significant. Further probing revealed a very different picture, one of heavy treatment burden and symptom management. Normalcy may serve as a positive means of coping with the burden of disease. Dissemination of research findings through poetry can enhance nurses' empathic understanding and provide holistic interpretation of events rather than just summative findings.