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Article

Systemic Lupus Erythematosus before and after COVID-19 Lockdown: How the Perception of Disease Changes through the Lenses of Narrative Medicine

1
Lupus Clinic, Reumatologia, Dipartimento di Scienze Cliniche, Internistiche, Anestesiologiche e Cardiovascolari, Sapienza Università di Roma, 00161 Roma, Italy
2
Faculty of Psychology, eCampus University, Novedrate, 22060 Como, Italy
*
Author to whom correspondence should be addressed.
Equally contributed.
Academic Editors: Saleh Naser and Pedram Sendi
Healthcare 2021, 9(6), 726; https://doi.org/10.3390/healthcare9060726
Received: 10 May 2021 / Revised: 6 June 2021 / Accepted: 9 June 2021 / Published: 12 June 2021
(This article belongs to the Special Issue Narrative in Health and Social Care)
Background: The COVID-19 pandemic contributes to the burden of living with different diseases, including Systemic Lupus Erythematosus (SLE). We described, from a narrative point of view, the experiences and perspectives of Italian SLE adults during the COVID-19 emergency, by distinguishing the illness experience before and after the lockdown. Methods: Fifteen patients were invited to participate. Illness narratives were collected between 22 and 29 March 2020 using a written modality to capture patients’ perspectives before and after the COVID-19 lockdown. We performed a two-fold analysis of collected data by distinguishing three narrative types and a qualitative analysis of content to identify the relevant themes and sub-themes reported. Results: Eight narratives included in the final analysis (mean length 436.9 words) have been written by eight females (mean age 43.3 ± 9.9 years, mean disease duration 13.1 ± 7.4 years). Six patients provided a quest narrative, one a chaos and the remaining one a restitution narrative. By text content analysis, we identified specific themes, temporally distinct before and after the lockdown. Before COVID-19, all the patients referred to a good control of disease, however the unexpected arrival of the COVID-19 emergency broke a balance, and patients perceived the loss of health status control, with anxiety and stress. Conclusions: We provided unique insight into the experiences of people with SLE at the time of COVID-19, underlining the perspective of patients in relation to the pandemic. View Full-Text
Keywords: Systemic Lupus Erythematosus; COVID-19; narrative medicine; patient’s perspective Systemic Lupus Erythematosus; COVID-19; narrative medicine; patient’s perspective
MDPI and ACS Style

Ceccarelli, F.; Covelli, V.; Olivieri, G.; Natalucci, F.; Conti, F. Systemic Lupus Erythematosus before and after COVID-19 Lockdown: How the Perception of Disease Changes through the Lenses of Narrative Medicine. Healthcare 2021, 9, 726. https://doi.org/10.3390/healthcare9060726

AMA Style

Ceccarelli F, Covelli V, Olivieri G, Natalucci F, Conti F. Systemic Lupus Erythematosus before and after COVID-19 Lockdown: How the Perception of Disease Changes through the Lenses of Narrative Medicine. Healthcare. 2021; 9(6):726. https://doi.org/10.3390/healthcare9060726

Chicago/Turabian Style

Ceccarelli, Fulvia, Venusia Covelli, Giulio Olivieri, Francesco Natalucci, and Fabrizio Conti. 2021. "Systemic Lupus Erythematosus before and after COVID-19 Lockdown: How the Perception of Disease Changes through the Lenses of Narrative Medicine" Healthcare 9, no. 6: 726. https://doi.org/10.3390/healthcare9060726

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