Publication Date
4-18-2023
Keywords
COVID-19 pandemic, post-acute sequelae, PASC, long hauler, SARS CoV-2, patient-engaged research
Abstract
“Long COVID” — a term referring to COVID-19-associated symptoms and conditions (ie, sequelae) that remain or emerge after resolution of a SARS-CoV-2 infection — is a multifaceted condition about which little is known. As part of formalized patient-engaged research at a large Midwestern health system, patient stakeholders with long COVID (N = 5) wrote stories based on their lived experience, as this was their preferred format for detailing their experience with the condition. These patient stakeholders reviewed one another’s stories, identified relevant quotes, and provided opportunities for elaboration. Independently, a trained researcher extracted quotes from the stories, identified themes, and wove the quotes together to share the independent, yet similar, stories. Emergent themes were that of uncertainty about the symptomatology of long COVID and its effects on patients’ mental health, physical functioning, family unit, self-identity, and future outlook. Further patient-engaged research on understanding the lived experience of long COVID may serve to advance knowledge and treatment. Health care providers caring for those with long COVID can benefit from listening and validating the stories of individuals suffering from this condition.
Recommended Citation
Hecht LM, Adams R, Dutkiewicz D, Radloff D, Wales MN, Whitmer J, Murphy D, Santarossa S. “Healing can be a very jagged line”: reflections on life as a COVID-19 long hauler. J Patient Cent Res Rev. 2023;10:77-81. doi: 10.17294/2330-0698.2000
Included in
Infectious Disease Commons, Pathological Conditions, Signs and Symptoms Commons, Primary Care Commons
Submitted
July 18th, 2022
Accepted
December 13th, 2022
