[Experiences of people with Long COVID in their medical accompaniment and in the social environment]

Abstract

Background: Permanent health impairments after a COVID-19 infection can lead to a lack of social participation and pronounced emotional stress. The aim of this study was to find out how Long COVID affects the social activities of those affected and understand the role that medical support and the immediate social environment play in this.

Methods: Between January and May 2022, 25 participants with long COVID were interviewed about their health situation, their perception of health care in Germany, and their social and professional context. The interviews, which were mainly conducted online, were analyzed for content, and the results were assessed using lifeworld-theoretical approaches.

Results: The participants reported a variety of health symptoms such as fatigue, shortness of breath, and cognitive impairments. The majority of respondents had a pessimistic attitude toward a timely recovery. Most participants perceived the medical support for long COVID as inadequate. Long waiting times for specialist appointments and the lack of acceptance of the health impairment by some doctors lead to an increase in existing uncertainties. Long COVID also had a major impact on respondents' social life. Many participants referred to a burdensome decline in the number of meetings with family and friends. Many respondents avoided physical contact with friends and family members due to a high level of fear of infection. Some participants explained that they separated themselves from people in their environment because they did not take their precarious situation seriously. However, an important resource was the close circle of family and friends from whom the majority of the interviewees received support.

Discussion: While other research studies particularly emphasize the comprehensive psychological and emotional consequences of long COVID, such as identity conflicts, existential angst, or depression, the present study shows that a lack of understanding from medical professionals as well as heavily delayed treatment leave the interviewees in a state of emotional void.

Conclusions: The findings show a considerable need for support among people with health impairments after a COVID-19 infection. Empathic and empirically based counseling and support by general practitioners as well as improvement of access to rehabilitative services can provide substantial support for people with long COVID.

Keywords: GP support; Gesundheitsversorgung in Deutschland; Hausärztliche Begleitung; Health care in Germany; Long COVID; Qualitative Forschung; Qualitative research; Social participation; Soziale Teilhabe.