Qualitative analysis of COVID-19 experiences with testing and vaccination among people with systemic lupus erythematosus in the USA

Introduction People with systemic lupus erythematosus (SLE) have faced unique challenges during the COVID-19 pandemic. This study examines these experiences and identifies barriers and facilitators related to COVID-19 testing and vaccination among people with SLE. Methods Participants were 25 SLE patients seeking care in two large medical centers in the US South recruited between October 2022 and April 2023. Fifteen one-on-one interviews were conducted; three were with dyads and one was with a group of four people. Sessions were recorded using Zoom Video Communications, which were transcribed and analyzed according to the guidelines of thematic analysis with NVivo 12. Results Emerging themes were examined using the social-ecological framework and organized around the impact of COVID-19 and barriers and facilitators of testing and vaccination. Factors that facilitated testing included availability and convenience of home testing; barriers were unclear directions for home tests and lack of accuracy of tests, and lack of clarity about when to get tested. Fear of side effects was cited as a major barrier to vaccination. Healthcare communication about vaccine benefits, particularly in the context of being immunocompromised, were motivating factors. Conclusion Interventions may be implemented at multiple levels to address barriers to COVID-19 testing and vaccination among SLE patients. Clear and comprehensive guidelines for those with SLE, as well as efforts to enhance structural competency among providers, including a greater understanding of COVID-19 experiences in the context of SLE, may support protective behaviors in this patient population. Key Points • Accurate and up-to-date information from healthcare providers and other trusted sources that is tailored for SLE patients can facilitate testing and vaccination in response to novel infectious disease. • Many SLE patients displayed resilience and drew from sources of support in response to unique challenges during the COVID-19 pandemic.