Primary Submission Category: Chronic disease
Gendered experiences of Long COVID: Voices of patients
Authors: Erica Rosser Christine Fei Angélica Lopez Hernandez Gloria Sun Heang-Lee Tan Rosemary Morgan
Presenting Author: Erica Rosser*
This qualitative study explores experiences of Long COVID among men and women of different racial and ethnic groups. Current studies indicate that women aged 40-60 are twice as likely to develop Long COVID, while after age 60 the risk level between men and women is similar. There has been a lot of uncertainty around Long COVID, with questions around whether it is real, who is experiencing it, and what care patients need. Despite this, there have been limited qualitative studies on patient experiences of Long COVID, particularly studies that explore gender, racial and ethnic differences.
We are conducting 80-90 semi-structured interviews with people who have been diagnosed with Long COVID from different racial and ethnic groups, with about 60% of the sample being women. Participants are being recruited from the Johns Hopkins Post-Acute COVID-19 Team Program, as well as through Johns Hopkins’ electronic medical record system. Recruitment is taking place between November 2022 to April 2023. We will use an intersectional gender lens to explore differences in patient experiences between men and women of different racial and ethnic groups.
Preliminary findings reveal that participants faced various challenges to seeking healthcare, including lacking a clear pathway to care, visiting multiple doctors, not being believed or listened to, and having to advocate for themselves. Participants’ socioeconomic status impacted their ability to navigate the health system, and some participants also faced gender and racial bias. Moreover, many participants experienced fear and anxiety, which profoundly impacted their mental health. In addition, Long COVID dramatically altered their lives, affecting their ability to work, socialize, and carry out daily activities. This led to financial stress, isolation, and a sense of loss and grief. These findings will be analyzed for gender, racial and ethnic differences, and will shed light on ways to promote equity in Long COVID care.