Page 5 - Symposium Flip Book_4.14.21

Giving Voice to Adults Living with Cystic Fibrosis: A

Phenomenological Study

Dr. Brandon Varilek

Background: 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 sought to understand the experience of living with cystic fibrosis (CF) as
an adult.
Design: This study follows a hermeneutic phenomenology design guided by Martin Heidegger's philosophy.
Methods: Semi-structured interviews were conducted with nine adults living with CF. Hermeneutic
phenomenology guided the data interpretation. This manuscript follows COREQ reporting guidelines.
Results: 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, (e) role of the dance partner, and (f) following the beat of bureaucracy.
Conclusions: 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.
Relevance to clinical practice: 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.

The speaker declares no actual or perceived conflicts of interest.