Living with and breaking a cycle of illness: A secondary qualitative data analysis of women’s experiences with long COVID

Abstract

Long COVID is an emerging condition, with early evidence suggesting it impacts women at a greater rate than men. As we seek to understand long COVID, it is important to consider the holistic impacts of this condition. Therefore, a qualitative perspective was used to explore the experience of those living with long COVID. Eight people from Scotland, who presented as women and Caucasian, participated in this study. A thematic analysis, from a phenomenological perspective, was conducted on data collected during two semi-structured focus groups. Five central themes emerged including: (1) a prolonged, varied, and debilitating illness; (2) barriers to care; (3) predominantly negative experiences of care; (4) fighting to carry the burden; and (5) looking to the future. These themes are linked through an explanatory theory describing a cycle of illness, the work required to break the cycle, and participant’s aims to regain their health and advocate for their condition. The thematic results are consistent with two prior qualitative studies on long COVID, creating a relatively consistent picture of individuals’ experiences during the pandemic. Additionally, the developed theory shares commonalities with individuals living with chronic illness, providing further insight into participants’ experiences.