A qualitative crossroads of rhythm and race: Black patients' experiences living with atrial fibrillation

Race-based disparities in atrial fibrillation (AF) outcomes are well-documented, but few studies have investigated individuals' experiences of living with the condition, particularly among Black individuals. We aimed to identify common themes and challenges experienced by individuals of Black race with AF. A tailored, qualitative script was developed to assess the perspectives of participants in focus groups. Virtual focus groups. Three focus groups of 4–6 participants (16 participants total) were recruited from the racial/ethnic minority participants in the Mobile Relational Agent to Enhance Atrial Fibrillation Self-care Trial. Focus group transcripts were inductively coded to identify common themes. Nearly all participants self-identified as Black race (n = 15, 93.8 %). Participants were mostly male (62.5 %) with mean age of 67 (range 40–78) years. Three themes were identified. First, participants described physical and mental burdens associated with having AF. Second, participants described AF as being a condition that is difficult to manage. Lastly, participants identified key tenets to support self-management of AF (self-education, community support, and patient-provider relationships). Participants reported AF is unpredictable and challenging to manage, and that social and community supports are essential. The social and behavioral themes identified in this qualitative research highlight the need for tailored clinical strategies for AF self-management which incorporate individuals' social contexts. National Clinical Trial number 04075994. •Black individuals with atrial fibrillation (AF) described physical and mental burdens from the disease.•Black individuals often characterize their AF as “unmanageable.”•Self-management requires education, community support, and provider support.