Dealing with uncertainty. A qualitative study on the illness’ experience in patients with Long-COVID in Italy
Main Article Content
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.
(2) Groff D, Sun A, Sentongo AE, et al. Short-Term and Long-Term Rates of Postacute Sequelae of SARSCoV- Infection: A Systematic Review. JAMA Network Open. 2021;4(10):e2128568. doi: 10.1001/jamanetworkopen.2021.28568.
(3) World Health Organization. WHO Coronavirus (COVID-19) Dashboard. 2022 July 18; (https://covid19.who.int/).
(4) Philips S, Williams MA. Confronting Our Next National Health Disaster - Long-Haul Covid. N Engl J Med. 2021 Aug 12;385(7):577-579. doi: 10.1056/NEJMp2109285. Epub 2021 Jun 30.
(5) Nabavi N. Long covid: How to define it and how to manage it. BMJ. 2020 Sep 7;370:m3489, doi: 10.1136/bmj.m3489.
(6) Ortona E, Maloroni W. (2022), Long COVID: to investigate immunological mechanisms and sex/gender-related aspects as fundamental steps for tailored therapy. The European Respiratory Journal. 2022 Feb 3;59: 2102245, doi: 10.1183/13993003.02245-2021.doi: 10.1183/13993003.02245-2021.
(7) Onder G, Floridia M, Giuliano M, et al. Indicazioni ad interim sui principi di gestione del Long-COVID. Rapporto ISS COVID-19. 2021 Luglio 1;https://www.iss.it/documents/20126/0/Rapporto+ISS+COVID-19+15_2021.pdf/a97f5be0-983b-efaa-2638-3cafc8380296?t=1625124332301).
(8) Graham E, Clark J, Orban Z, et al. Persistent neurologic symptoms and cognitive dysfunction in non-hospitalized Covid-19 “long haulers”. Ann Clin Transl Neurol. 2021 May;8(5):1073- 1085. doi: 10.1002/acn3.51350. Epub 2021 Mar 30. PMID: 33755344; PMCID: PMC8108421.
(9) Callard F, Perego E. How and why patients made Long Covid. Soc Sci Med. 2021 Jan;268:113426, doi: 10.1016/j.socscimed.2020.113426. Epub 2020 Oct 7. PMID: 33199035; PMCID: PMC7539940.
(10) Maxwell E. Living with COVID19. A dynamic review of the evidence around ongoing COVID19 symptoms (often called Long COVID). National Institute for Health 2020 Sept 30;https://evidence.nihr.ac.uk/themedreview/living-withcovid19/ https://evidence.nihr.ac.uk/wp-content/uploads/2020/10/Living-with-COVIDThemed-Review.pdf.
(11) Kingstone T, Taylor A, O’Donnell C, et al. Finding the “right” GP: A qualitative study of the experiences of people with long-COVID. BJGP Open 2020; 4 (5): bjgpopen20X101143. DOI: 10.3399/bjgpopen20X10114.
(12) Pan L, Mu M, Yang P, et al. Clinical Characteristics of COVID-19 Patients With Digestive Symptoms in Hubei, China: A Descriptive, Cross-Sectional, Multicenter Study. Am J Gastroenterol. 2020 May;115(5):766-773. doi: 10.14309/ajg.0000000000000620. PMID: 32287140; PMCID: PMC7172492.
(13) Ray PR, Wangzhou A, Ghneim N, et al. A pharmacological interactome between COVID-19 patient samples and human sensory neurons reveals potential drivers of neurogenic pulmonary dysfunction. Brain Behav Immun. 2020 Oct;89:559-568. doi: 10.1016/j.bbi.2020.05.078. Epub 2020 Jun 1. PMID: 32497778; PMCID: PMC7263237.
(14) Wade D. Rehabilitation after COVID-19: an evidence-based approach. Clin Med (Lond). 2020 Jul 20;(4):359-365. doi: 10.7861/clinmed.2020-0353. Epub 2020 Jun 9. PMID: 32518105; PMCID: PMC7385804.
(15) Goel A, Gupta L. Social Media in the Times of COVID-19. J Clin Rheumatol. 2020 Jun 8;10.1097/RHU.0000000000001508. doi: 10.1097/RHU.0000000000001508.
(16) Venegas-Vera V, Colbert GB, Lerma EV. Positive and negative impact of social media in the COVID-19 era. Rev Cardiovasc Med. 2020 Dec 30;21(4):561-564. doi: 10.31083/j.rcm.2020.04.195. PMID: 33388000.
(17) Russell D, Spence NJ, Chase JAD, Schwartz T, Tumminello CM, Bouldin E. Support amid uncertainty: Long COVID illness experiences and the role of online communities. SSM - Qualitative Research in Health. 2022 Dec. Vol 2;100177. https://doi.org/10.1016/j.ssmqr.2022.100177.
(18) Rajan S, Khunti K, Alwan N, et al. In the wake of the pandemic: Preparing for Long COVID. Copenhagen (Denmark): European Observatory on Health Systems and Policies. 2021; PMID: 33877759.
(19) Vellone E, Sinapi N, Rastelli D. Fenomenologia e metodo fenomenologico: loro utilità per la conoscenza e la pratica infermieristica (Phenomenology and phenomenological method: their usefulness for nursing knowledge and practice). Prof Inferm. 2000 Oct-Dec;53(4):237-42. Italian. Erratum. Prof Inferm. 2001 Jan-Mar;54(1):61. PMID: 12424957.
(20) Van Manen M. Phenomenology in Its Original Sense. Qual Health Res. 2017 May 27;(6):810-825. doi: 10.1177/1049732317699381. Epub 2017 Apr 2. PMID: 28682720.
(21) Artioli G, Foà C, Taffurelli C. An integrated narrative nursing model: towards a new healthcare paradigm. Acta Biomed. 2016;87 (4): 13-22. PMID: 27874840.
(22) Green J, Thorogood N. Qualitative methods for health research. London: Sage. 2018.
(23) Cozzi D, Nigris D. Gesti di cura. Elementi di metodologia della ricerca etnografica e di analisi socioantropologica per il nursing. Milano: Colibrì. 1996.
(24) Sità C. Indagare l’esperienza. L'intervista fenomenologica nella ricerca educativa. Roma: Carocci Editore. 2012.
(25) Braun V, Clarke V. Using thematic analysis in psychology. Qualit Research in Psych. 2006;3 (2): 77-101. DOI: 10.1191/1478088706qp063oa.
(26) Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32-Item Checklist for Interviews and Focus Groups. Int. J. Qual. Health Care 2007, 19, 349–357. doi: 10.1093/intqhc/mzm042. Epub 2007 Sep 14. PMID: 17872937.
(27) Rushforth A, Ladds E, Wieringa S, Taylor S, Husain L, Greenhalgh T. Long Covid – The illness narratives. Social Science & Medicine. 2021 Oct;286:114326. doi: 10.1016/j.socscimed.2021.114326. Epub 2021 Aug 19.
(28) Roth PH, Gadebusch-Bondio M. The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence. Social Science & Medicine 2022;292,114619.
(29) Whooley O, Barker KK. Uncertain and under Quarantine: Toward a Sociology of Medical Ignorance. Journal of Health and Social Behavior. 2021;Vol 62(3) 271–285.
(30) Ladds E, Rushforth A, Wieringa S, et al. Persistent symptoms after Covid-19: qualitative study of 114 "long Covid" patients and draft quality principles for services. BMC Health Serv Res. 2020 Dec 20;20(1):1144. doi: 10.1186/s12913-020-06001-y. PMID: 33342437; PMCID: PMC7750006.
(31) Kingstone T, Taylor AK, O’Donnell CA, Atherton H, Blane DN, Chew-Graham CA. Finding the “right” GP: a qualitative study of the experiences of people with long-COVID. BJGP Open. 2020; DOI: 10.3399/bjgpopen20X101143
(32) Shelley J, Hudson J, Mackintosh KA, et al. I Live a Kind of Shadow Life: Individual Experiences of COVID-19 Recovery and the Impact on Physical Activity Levels. Int. J. Environ. 2021;18, 11417. https://doi.org/10.3390/ijerph182111417.
(33) Wang S, Quan L, Chavarro JE, et al. Associations of Depression, Anxiety,Worry, Perceived Stress, and Loneliness Prior to Infection With Risk of Post–COVID-19 Conditions. JAMA Psychiatry. 2022;79(11):1081-1091. doi: 10.1001/jamapsychiatry.2022.2640.
(34) Santiago‐Rodriguez EI, Maiorana A, Peluso MJ, et al. Characterizing the COVID‐19 Illness Experience to Inform the Study of Post‐acute Sequelae and Recovery. International Journal of Behavioral Medicine. 2022 Oct;29(5):610-623. doi: 10.1007/s12529-021-10045-7. Epub 2021 Dec 16.
(35) Macpherson K, Miller KCC, Nairn M. Experiences of living with long COVID and of accessing healthcare services: a qualitative systematic review. BMJ Open. 2022;12:e050979. doi:10.1136/bmjopen-2021-050979.
(36) Davidson SL, Menkes D. Long covid: reshaping conversations about medically unexplained symptoms. BMJ. 2021;374:n1859. doi: 10.1136/bmj.n1859.
(37) Horn M, Fovet T, Viva G, D’Hondt G, Ama A. Somatic symptom disorders and long COVID: A critical but overlooked topic. General Hospital Psychiatry. 2021 Sep–Oct; Vol 72, 149-150. doi: 10.1016/j.genhosppsych.2021.06.007.
(38) Barker KK. The fibromyalgia story. Medical Authority & Women’s Worlds of Pain, Temple University Press, Philadelphia. 2005.
(39) Barker KK (2010) The social construction of illness: medicalization and contested illness. In: Bird CE, Conrad P, Fremont AM, Timmermans S, editors. Handbook of medical sociology. Vanderbilt University Press, Nashville, 2010. pp 147–162.
(40) Dumit J. Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine. 2006;62(3), 577–590.
(41) Ware NC. Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome. Medical Anthropology Quarferly. 1992 Dec;6(4):347-361.
(42) Kempner, J. Not tonight: Migraine and the politics of gender and health. Chicago: University Of Chicago Press. 2014.
(43) Moretti C. A nervi tesi. Un’analisi antropologica della sindrome fibromialgica. Aracne Editrice. Roma. 2013.
(44) Moretti C. Il dolore illegittimo. Un’etnografia della sindrome fibromialgica. Edizioni ETS. Pisa. 2019.
(45) Samulowitz A, Gremyr I, Eriksson E, Hensing G. “Brave men” and “emotional women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Res Manag. 2018 Feb 25;2018:6358624. doi: 10.1155/2018/6358624.
(46) Colameco S, Becker LA, Simpson M. Sex bias in the assessment of patient complaints. J Fam Pract. 1983 Jun;16(6):1117-21.
(47) LIoyd EP, Paganini GA, Brike LT. Gender Stereotypes Explain Disparities in Pain Care and Inform Equitable Policies. Policy Insights from the Behavioral and Brain Sciences. 2020 Oct. 7(2): 198-204. https://doi.org/10.1177/2372732220942894.
(48) Kleinman A. Alcuni concetti e un modello per la comprensione dei sistemi medici intesi come sistemi culturali. In Quaranta I (editor), Antropologia medica. I testi fondamentali, Milano: Raffaello Cortina. 2006. p. 5-26.
(49) Pantelic M, Alwan N. The stigma is real for people living with long covid. The BMJ opinion. 2021 Mar 25;https://blogs.bmj.com/bmj/2021/03/25/marija-pantelic-and-nisreen-alwan-the-stigma-is-real-for-people-living-with-long-covid/.