1. The Lived Experience of African American Persons with Cystic Fibrosis.
- Author
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Ladores, Sigrid, Woods, Brittany M, Pitts, Leslie N, Belay, Deyana, Washington, Lauren, and Bray, Leigh Ann
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PREVENTION of racism , *AFRICAN Americans , *X-linked genetic disorders , *MINORITIES , *RESEARCH methodology , *SOCIAL media , *CYSTIC fibrosis , *EXPERIENCE , *PATIENTS' attitudes , *ATTITUDES toward illness , *PHENOMENOLOGY , *QUALITATIVE research , *SOUND recordings , *RESEARCH funding , *HEALTH equity , *STATISTICAL sampling , *THEMATIC analysis , *RARE diseases - 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. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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