The dance of cystic fibrosis: Experiences of living with cystic fibrosis as an adult.

Abstract

This study sought to understand the experience of living with cystic fibrosis (CF) as an adult. Cystic fibrosis is one of the most difficult chronic diseases to manage long term because of numerous challenges faced on a day-to-day basis. The majority of studies focus on improving symptom response to new treatment regimens with the hope of prolonging life. Yet few qualitative studies explore the experience of adults with CF. What is missing from the current literature are the voices of people living with CF, especially as they age. This study follows a hermeneutic phenomenology design guided by Martin Heidegger's philosophy. Semi-structured interviews were conducted with nine adults living with CF. Hermeneutic phenomenology guided the data interpretation. This manuscript follows COREQ reporting guidelines. Hermeneutic analysis revealed the overarching theme The Dance of Cystic Fibrosis which is supported by five themes: (a) the paradox of control, (b) living deaths, (c) dancing with death, (d) relearning to dance, and (e) role of the dance partner. The experience of living with CF as an adult is multidimensional and unique to each person. Despite the uniqueness, there is a shared experience that manifested as The Dance of Cystic Fibrosis. As life expectancy continues to increase for persons with CF, it is essential that researchers and healthcare professionals intentionally consider the life-prolonging effects of the treatment regimen alongside the persons' experience with those effects. Nurses at all levels of practice should be prepared to address the multifaceted experience of living with CF through thoughtful incorporation of open-ended questions. This allows patients to share their experience with nurses, augmenting their practice of delivering holistic care.