Opportunities to Improve Long COVID Care: Implications from Semi-structured Interviews with Black Patients

Background Long coronavirus disease (COVID) is an emerging condition that could considerably burden healthcare systems. Prior qualitative studies characterize the experience of having long COVID, which is valuable for informing care strategies. However, evidence comes from predominantly White samples. This is a concern because underrepresentation of Black patients in research and intervention development contribute to racial inequities. Objective To facilitate racial equity in long COVID care, the purpose of this qualitative study was to inform the development of care strategies that are responsive to the experiences and perspectives of Black patients with long COVID in the United States of America. Methods Using convenience sampling, we conducted race-concordant, semi-structured, and open-ended interviews with Black adults (80% female, mean age = 39) who had long COVID. We transcribed and anonymized the recorded interviews. We analyzed the transcripts using inductive, thematic analysis. Theme development focused on who can help or hinder strategies for reducing health inequities, what should be done to change care policies or treatment strategies, and when are the critical timepoints for intervention. Results We developed four main themes. Participants reported challenges before and after COVID testing. Many participants contacted primary care physicians as a first step for long COVID treatment. However, not all respondents had positive experiences and at times felt dismissed. Without a qualifying diagnosis, participants could not obtain disability benefits, which negatively influenced their employment and increased financial hardship. Conclusions There are possible targets for improving long COVID care, from COVID testing through to long-term treatment plans. There is a need to increase long COVID awareness among physicians. Diagnosis and a standardized treatment plan could help patients avoid unnecessary healthcare utilization and obtain comprehensive support.