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

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


  • Chiara Moretti Dipartimento di Medicina e Chirurgia – Università di Parma
  • Concetta Collaro Department of Neurology, Hospital of Piacenza - AUSL PC, Piacenza, Italy
  • Cristina Terzoni Department of DPS, Hospital of Piacenza - AUSL PC, Piacenza, Italy
  • Gennaro Colucci Department of Radiological Functions, Hospital of Piacenza - AUSL PC, Piacenza, Italy
  • MariaRosa Copelli Department of Primary Care, Hospital of Piacenza - AUSL PC, Piacenza, Italy
  • Leopoldo Sarli Department of Medicine and Surgery, University of Parma, Parma, Italy
  • Giovanna Artioli Department of Medicine and Surgery, University of Parma, Parma, Italy


Long-COVID, Post-covid-19 syndrome, Post-Covid-19 Condition, medically unexplained syndromes, illness experience, uncertainty


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.


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How to Cite

Dealing with uncertainty. A qualitative study on the illness’ experience in patients with Long-COVID in Italy. Acta Biomed [Internet]. 2022 Dec. 16 [cited 2024 Jun. 17];93(6):e2022349. Available from:

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