Dealing with uncertainty. A qualitative study on the illness’ experience in patients with long-COVID in Italy

Background and goals: An unknown proportion of people who had COVID-19 infection continue to experience symptoms such as fatigue, breathlessness, joint or muscle pain, difficulty sleeping, and brain fog. These symptoms have a significant impact on the quality of life. Long-COVID is a new multisystem disease still under investigation. This research aims to explore the illness experienced by patients suffering from Long-COVID in Italy. Research design and methods: Qualitative methodology with semi-structured interviews. Participants were recruited on the Facebook patient group between October 2021 and January 2022. Participants had been experiencing symptoms for at least three months following confirmed COVID-19 infection. Interviews were conducted by video call, recorded and transcribed with consent. The thematic analysis method has been chosen to infer data from textual material. Results: 17 interviews with women with Long-COVID have been analysed. The main themes include: a total change of life due to the symptomatology, loss of autonomy that affects social, family and professional life; social isolation, a sense of abandonment often increased by stigma, the difficulty of being believed and achieving diagnosis; difficulty in managing symptoms and accessing to care services; living with uncertainty caused by the lack of institutional, social, professional, familial and medical support. Conclusions: Intervention programs, both institutional and social-health policies should be developed for patients with Long-COVID. The impact of symptoms could be reduced by developing standards and protocols, and by ensuring access to care and to multi-disciplinary rehabilitation. Further development of knowledge on Long-COVID is essential.