Dissertation - Open Access
Doctor of Philosophy (PhD)
cystic fibrosis, hermeneutic phenomenology, interpretive phenomenology, Martin Heidegger, The Dance of CF
Cystic fibrosis is one of the most difficult chronic diseases to manage long-term because of the numerous challenges faced on a day-to-day basis. Historically, these challenges have primarily been studied using quantitative methods given the desire to prolong life. However, simply increasing the quantity of life does not mean that quality of life will improve. It is entirely possible that new treatments may worsen perceived quality of life. What is missing from the current research is the person’s voice regarding the experience of living with cystic fibrosis, especially as they continue to age. The primary purpose of this study was to understand the experience of living with cystic fibrosis from the adult perspective. The method used for this study was hermeneutic phenomenology guided by Martin Heidegger’s philosophy. Participants were recruited from across the United States using an advertisement through Facebook© and Instagram©. Data was collected through semi-structured interviews with nine participants. The stories shared by the participants provide a deeply personal view of the experience of living with CF as an adult. The hermeneutic analysis of the narratives revealed one overarching theme and six themes. The participants’ experience can be thought of as a dance, The Dance of CF, which is the overarching theme. Six themes emerged from the overarching theme: 1) The Paradox of Control, 2) Living Deaths, 3) Dancing with Death, 4) Relearning to Dance, 5) Role of the Dance Partner, and 6) Following the Beat of Bureaucracy. This study has implications for nursing education, nursing practice, and health policy. Nursing education needs to integrate teaching hermeneutic interpretation to undergraduate and graduate students alike. Employing hermeneutic interpretation into practice will have positive impacts in the care of all patients by understanding the existential concerns while living with an illness. Finally, as health policy evolves, nurses need to advocate for changes in current policy. Nurses are uniquely positioned to understand the complexities and challenges facing those with CF. Thus, nurses can provide clear examples about the needs of the CF population directly to policy makers.
Library of Congress Subject Headings
Cystic fibrosis -- Patients.
Cystic fibrosis -- Psychological aspects.
Number of Pages
South Dakota State University
In Copyright - Educational Use Permitted
Varilek, Brandon M., "Giving Voice to Adults Living with Cystic Fibrosis: A Phenomenological Study" (2020). Electronic Theses and Dissertations. 3685.
Available for download on Saturday, February 19, 2022