The Lived Experience of African American Persons with Cystic Fibrosis

Abstract

Background: Cystic fibrosis (CF) is a rare genetic disease affecting approximately 30,000 people in the United States (US). African American persons with CF are even rarer, comprising approximately 5% of this population. Purpose: The purpose of this study was to explore the lived experiences of African American persons with CF to identify potential disparities in health care. Methods: Descriptive phenomenology was used to explore lived experiences of African American persons with CF over age 18 recruited from CF Foundation-accredited Centers in the US, CF-specific social media, and via snowball sampling. Study data was obtained through telephone interviews that were audio-recorded, transcribed verbatim, and analyzed using Colaizzi's method of thematic analysis. Results: Six men and six women (ages 23–45) completed the study. Interviews revealed three themes: (1) Accepting a Diagnosis of CF; (2) Desiring a Normal Life while Living with an Invisible Disease; and 3) A Slippery Slope of Subtle Racism. Each theme had 2–3 subthemes. Conclusions: It is critical to explore the unique challenges faced by African American persons with CF in order to develop interventions that improve their daily lives and create better futures. Implications for Practice: Findings highlight the unique challenges faced by underrepresented groups with CF and the need to address health inequities to improve care delivery.

Transcending Limitations: A Phenomenological Exploration of How Hygge Practices Enrich the Lived Experiences of Adults with Cystic Fibrosis

“…Despite strategic recruitment efforts, we faced difficulties recruiting male and minority individuals with CF who practice hygge. It is important to note that more than 90% of individuals diagnosed with CF are of Eastern European Caucasian descent (Stephenson et al, 2017); however, including racial and ethnically diverse participants would strengthen the study's generalizability (Ladores et al, 2023). Additionally, most participants' socioeconomic status (estimated by education attainment and employment status) was above average, which limits the understanding of the usefulness of hygge as a coping mechanism for individuals of lower socioeconomic status.…”