Young people living with cystic fibrosis: an insight into their subjective experience

Abstract

The aim of this article is to explore the experiences of young people living with cystic fibrosis and the impact of these experiences on their compliance to treatment regimen. Thirty-one young adults participated in semi-structured interviews which were transcribed and the data collected analysed using interpretative phenomenology. Emerging themes underlined just how complex it is to manage life with a chronic illness as demanding as cystic fibrosis. A strong emphasis emerged from the participants about their desire to integrate into society and to be seen to be normal and this was seen as in conflict with some aspects of their recommended ongoing treatment. The findings suggested that complete compliance is rare and is affected by a multitude of factors, set within the context of each individual's unique life experience. Healthcare professionals need to understand, not just the objective medical condition in delivering care, but they also need to develop an insight into the subjective experience of living with illnesses such as cystic fibrosis. Their central concern should not be to maximise compliance but rather to support the making of informed decisions about broader lifestyles and health behaviours.