(Scientific Session) “Long COVID” and Negative Impact on Self-image and Relationships: A Qualitative Study of Lived Experiences

Objective: To characterize the psychosocial impact that Post-Acute Covid-19 Syndrome (PACS) has on self-image and relationships, as reported by people with the condition.

Design: A qualitative study utilizing semi-structured interviews adapted from the McGill Illness Narratives Interview (MINI) and the Work Rehabilitation Questionnaire (WORQ). Interviews were coded and analyzed using grounded theory methodology.

Setting: Outpatient rehabilitation clinic in Chicago, November 2021-March 2022.

Participants: Eight English-speaking adults who met WHO Criteria for PACS and who agreed to participate.

Interventions: Not applicable.

Main Outcome Measures: Not applicable.

Results: When interviewed about their experience with PACS, most individuals reported a negative impact on their self-image and relationships and one reported that PACS had a positive impact on self-image and relationships. The negative psychosocial impact of PACS can be classified into three broad themes: (1) shame/embarrassment about PACS-related mental “slowness” or delayed recovery time; (2) avoidance of social situations because of difficulty with conversation due to word-finding trouble, memory loss, or “brain fog”; and (3) fear of not being believed by others regarding symptoms.

Conclusions: This research provides some insight into the psychosocial effects of PACS. The negative impact on self-image and relationships resulting from PACS can be burdensome and isolating. Furthermore, the diversity of the psychosocial experiences of people with PACS suggests that a multidisciplinary and individualized approach to care might be most valuable to address their issues.