Journey mapping long COVID: Agency and social support for long-hauling

Long COVID, also known as Post COVID-19 condition, is defined by the WHO as the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation. Despite many studies examining the causes and mechanisms of this disease, fewer studies have sought to understand the experience of those suffering from long COVID, or “long-haulers,” This study contributes to the understanding of long-haulers (N = 14) by examining the role of agency and social support in shaping their journeys with long COVID. Drawing on a combination of interviews, questionnaires, and video diaries over a three-month period, journey mapping was used to document the participants' experiences, including symptoms, coping strategies, and lifestyle changes. Analysis of these journey maps resulted in a framework with four clusters demonstrating the importance of social support and patient agency shaping participants’ Long COVID trajectory; the study contributes valuable insights into the daily lives and challenges individuals face with long COVID, informing the development of targeted support programs.