Lost and changed meaning in life of people with Long Covid: a qualitative study

References

• Abma, T. (1996). Responsief evalueren. [ Doctoral thesis, Erasmus universiteit Rotterdam].
   Google Scholar
• Atkinson, S., Bradby, H., Gadebusch-Bondio, M., Hallberg, A., Macnaugthon, J., & Söderfeldt, Y. (2021). Seeing the value of experiential knowledge through COVID-19. History and Philosophy of the Life Sciences, 43(3), 1–14. https://doi.org/10.1007/s40656-021-00438-y
   PubMed Web of Science ®Google Scholar
• Bambra, C., Lynch, J., & Smith, K. E. (2021). The Unequal Pandemic: COVID-19 and Health Inequalities. Policy Press. https://library.oapen.org/handle/20.500.12657/51451. Retrieved October 3, 2023.
   Google Scholar
• Baumeister, R. F. (1991). Meanings of life. Guilford Press.
   Google Scholar
• Beeris, C., Niemeijer, A., & Machielse, A. (2022). Count your life by smiles and tears: An integrative review on resilience and growing older. Gerontology and Geriatric Medicine, 8, 233372142211190. https://doi.org/10.1177/23337214221119050
   Web of Science ®Google Scholar
• Bigony, C. E., & Keitel, M. A. (2020). Meaning-making and chronic illness: Understanding through narratives. In M. A. Elizabeth (Ed.), Navigating life transitions for meaning (pp. 107–127). Elsevier. https://doi.org/10.1016/B978-0-12-818849-1.00007-2
   Google Scholar
• Brandstätter, M., Baumann, U., Borasio, G. D., & Fegg, M. J. (2012). Systematic review of meaning in life assessment instruments. Psycho‐Oncology, 21(10), 1034–1052. https://doi.org/10.1002/pon.2113
   PubMed Web of Science ®Google Scholar
• Burton, A., Aughterson, H., Fancourt, D., & Philip, K. E. J. (2022). Factors shaping the mental health and well-being of people experiencing persistent COVID-19 symptoms or ‘long COVID’: Qualitative study. British Journal of Psychiatry Open, 8(2), 1–8. https://doi.org/10.1192/bjo.2022.38
   Google Scholar
• Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182. https://doi.org/10.1111/1467-9566.ep11339939
   PubMedGoogle Scholar
• Bury, M. (2001). Illness narratives: Fact or fiction? Sociology of Health & Illness, 23(3), 263–285. https://doi.org/10.1111/1467-9566.00252
   Web of Science ®Google Scholar
• Callard, F., & Perego, E. (2021). How and why patients made long covid. Social Science & Medicine, 268, 113426. https://doi.org/10.1016/j.socscimed.2020.113426
   PubMed Web of Science ®Google Scholar
• Carel, H. (2012). Phenomenology as a resource for patients. Journal of Medicine and Philosophy, 37(2), 96–113. https://doi.org/10.1093/jmp/jhs008
   PubMed Web of Science ®Google Scholar
• Carel, H., & Kidd, I. J. (2014). Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy, 17(4), 529–540. https://doi.org/10.1007/s11019-014-9560-2
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. (2021). Post-COVID Conditions: Overview. https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html. Retrieved March 3, 2022.
   Google Scholar
• Charmaz, K. (2006). Measuring pursuits, marking self: Meaning construction in chronic illness. International Journal of Qualitative Studies on Health and Well-Being, 1(1), 27–37. https://doi.org/10.1080/17482620500534488
   Google Scholar
• Charmaz, K. (2014). Constructing grounded theory (2nd ed., Ser. Introducing qualitative methods). SAGE.
   Google Scholar
• Corbin, J., & Strauss, A. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). SAGE.
   Google Scholar
• Creswell, J. W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). SAGE.
   Google Scholar
• Derkx, P., Bos, P., Laceulle, H., & Machielse, A. (2020). Meaning in life and the experience of older people. International Journal of Ageing & Later Life, 14(1), 37–66. https://doi.org/10.3384/ijal.1652-8670.19467
   Google Scholar
• Devoto, S. A. (2023). Long COVID and chronic pain: Overlapping racial inequalities. Disability & Society, 38(3), 524–529. https://doi.org/10.1080/09687599.2022.2156848
   Web of Science ®Google Scholar
• De Wel, V. (2022). Mit Long Covid in den Finanziellen Ruin. Tagesschau. https://www.tagesschau.de/wirtschaft/verbraucher/wirtschaft-probleme-long-covid-101.html. Retrieved March 17, 2023.
   Google Scholar
• Ducharme, J. (2022). Long COVID experts and advocates say the government is ignoring ‘the greatest mass-disabling event in human history’. TIME Magazine. https://time.com/6213103/us-government-long-covid-response/. Retrieved September 20, 2022.
   Google Scholar
• Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I., Kjellgren, K., Lidén, E., Öhlén, J., Olsson, L., Rosén, H., Rydmark, M., & Sunnerhagen, K. S. (2011). Person-centered care - ready for prime time. European Journal of Cardiovascular Nursing, 10(4), 248–251. https://doi.org/10.1016/j.ejcnurse.2011.06.008
   PubMed Web of Science ®Google Scholar
• Faghy, M. A., Owen, R., Thomas, C., Yates, J., Ferraro, F. V., Skipper, L., Barley McMullen, S., Brown, D. A., Arena, R., & Ashton, R. E. M. (2022). Is long COVID the next global health crisis? Journal of Global Health, 12. https://doi.org/10.7189/jogh.12.03067
   PubMed Web of Science ®Google Scholar
• Feldman, D. B., & Snyder, C. R. (2005). Hope and the meaningful life: Theoretical and empirical associations between goal-directed thinking and life meaning. Journal of Social and Clinical Psychology, 24(3), 401–421. https://doi.org/10.1521/jscp.24.3.401.65616
   Web of Science ®Google Scholar
• Frank, A. W. (2013). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
   Google Scholar
• Frankl, V. E. (1966). Self-transcendence as a human phenomenon. Journal of Humanistic Psychology, 6(2), 97–106. https://doi.org/10.1177/002216786600600201
   Web of Science ®Google Scholar
• Fricker, M. (2011). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.
   Google Scholar
• Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. SAGE.
   Google Scholar
• Halasz, J. (2018). About the right to be ill. Medicine, Health Care and Philosophy, 21(1), 113–123. https://doi.org/10.1007/s11019-017-9790-1
   PubMed Web of Science ®Google Scholar
• Heller, O., Chun, Y., Shapira, S., Troen, A., Shlomo, Y., Acri, M., Marotta, P., Kulkarni, S., Kinnison, B., & Grinstein-Weiss, M. (2022). Prevalence of long-COVID among low-income and marginalized groups: Evidence from Israel. International Journal of Public Health, 67, 1605086. https://doi.org/10.3389/ijph.2022.1605086
   PubMed Web of Science ®Google Scholar
• Hupkens, S., Machielse, A., Goumans, M., & Derkx, P. (2018). Meaning in life of older persons: An integrative literature review. Nursing Ethics, 25(8), 973–991. https://doi.org/10.1177/0969733016680122
   PubMed Web of Science ®Google Scholar
• Hydén, L. (1997). Illness and narrative. Sociology of Health & Illness, 19(1), 48–69. https://doi.org/10.1111/j.1467-9566.1997.tb00015.x
   Web of Science ®Google Scholar
• Ireson, J., Taylor, A., Richardson, E., Greenfield, B., & Jones, G. (2022). Exploring invisibility and epistemic injustice in long covid—A citizen science qualitative analysis of patient stories from an online covid community. Health Expectations, 2022(4), 1–13. https://doi.org/10.1111/hex.13518
   Google Scholar
• Kuipers, E. (2022). Antwoorden op Kamervragen over aangenomen motie over long COVID. Rijksoverheid. https://www.rijksoverheid.nl/documenten/kamerstukken/2022/09/26/antwoorden-op-kamervragen-over-aangenomen-motie-inzake-long-covid. Retrieved March 17, 2023.
   Google Scholar
• Ladds, E., Rushforth, A., Wieringa, S., Taylor, S., Rayner, C., Husain, L., & Greenhalgh, T. (2020). Persistent symptoms after covid-19: Qualitative study of 114 “long covid” patients and draft quality principles for services. BMC Health Services Research, 20(1), 1–13. https://doi.org/10.1186/s12913-020-06001-y
   Web of Science ®Google Scholar
• Lavoix, H. (2021). Long COVID and the fifth wave - the hidden pandemic. Red Analysis. https://redanalysis.org/2021/11/22/long-covid-and-the-fifth-wave-the-hidden-pandemic/. Retrieved on March 17th, 2023.
   Google Scholar
• Linehan, C., Birkbeck, G., Araten-Bergman, T., Baumbusch, J., Beadle-Brown, J., Bigby, C., Bradley, V., Brown, M., Bredewold, F., Chirwa, M., Cui, J., Godoy Gimenez, M., Gomeiro, T., Kanova, Š., Kroll, T., Li, H., MacLachlan, M., Narayan, J., Nearchou, F., & Tideman, M.… Tossebro, J. (2022). COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers. HRB Open Research, 5, 5. https://doi.org/10.12688/hrbopenres.13497.1
   PubMedGoogle Scholar
• Martela, F., & Steger, M. F. (2016). The three meanings of meaning in life: Distinguishing coherence, purpose, and significance. The Journal of Positive Psychology, 11(5), 531–545. https://doi.org/10.1080/17439760.2015.1137623
   Web of Science ®Google Scholar
• Mascaro, N., & Rosen, D. H. (2005). Existential meaning’s role in the enhancement of hope and prevention of depressive symptoms. Journal of Personality, 73(4), 985–1014. https://doi.org/10.1111/j.1467-6494.2005.00336.x
   PubMed Web of Science ®Google Scholar
• Mascaro, N., & Rosen, D. H. (2006). The role of existential meaning as a buffer against stress. Journal of Humanistic Psychology, 46(2), 168–190. https://doi.org/10.1177/0022167805283779
   Web of Science ®Google Scholar
• McAdams, D. P. (2001). The psychology of life stories. Review of General Psychology, 5(2), 100–122. https://doi.org/10.1037/1089-2680.5.2.100
   Google Scholar
• McCone, C. 2022. We need answers to these four long covid questions. The Guardian. https://www.theguardian.com/world/commentisfree/2022/mar/30/long-covid-coronavirus-covid-pandemic-health. Retrieved May 8, 2022.
   Google Scholar
• Mills, J., Bonner, A., & Francis, K. (2006). The development of constructivist grounded theory. International Journal of Qualitative Methods, 5(1), 25–35. https://doi.org/10.1177/160940690600500103
   Google Scholar
• Mohajan, D., & Mohajan, H. K. (2022). Constructivist grounded theory: A new research approach in social science. Research and Advances in Education, 1(4), 8–16. https://doi.org/10.56397/RAE.2022.10.02
   Google Scholar
• Moretti, C., Collaro, C., Terzoni, C., Colucci, G., Copelli, M., Sarli, L., & Artioli, G. (2022). Dealing with uncertainty. A qualitative study on the illness’ experience in patients with long-COVID in Italy. Acta Bio Medica: Atenei Parmensis, 93(6), 1–12. https://doi.org/10.23750/abm.v93i6.14059
   Google Scholar
• Najafi Ghezeljeh, T., Yadavar Nikravesh, M., & Emami, A. (2014). Coronary heart disease patients transitioning to a normal life: Perspectives and stages identified through a grounded theory approach. Journal of Clinical Nursing, 23(3–4), 571–585. https://doi.org/10.1111/jocn.12272
   PubMed Web of Science ®Google Scholar
• Niemeijer, A. R. (2015). Exploring good care with surveillance technology in residential care for vulnerable people. VU University Press. https://hdl.handle.net/1871/52244
   Google Scholar
• Nurek, M., Rayner, C., Freyer, A., Taylor, S., Järte, L., MacDermott, N., & Delaney, B. C. (2021). Recommendations for the recognition, diagnosis, and management of long COVID: A Delphi study. British Journal of General Practice, 71(712), e815–e825. https://doi.org/10.3399/BJGP.2021.0265
   PubMed Web of Science ®Google Scholar
• Park, C. L. (2010). Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136(2), 257–301. https://doi.org/10.1037/a0018301
   PubMed Web of Science ®Google Scholar
• Park, C. L. (2016). Meaning making in the context of disasters. Journal of Clinical Psychology, 72(12), 1234–1246. https://doi.org/10.1002/jclp.22270
   PubMed Web of Science ®Google Scholar
• Patton, M. Q. (2015). Qualitative research & evaluation methods: Integrating theory and practice. SAGE.
   Google Scholar
• Raman, B., Bluemke, D. A., Lüscher, T. F., & Neubauer, S. (2022). Long COVID: Post-acute sequelae of COVID-19 with a cardiovascular focus. European Heart Journal, 43(11), 1157–1172. https://doi.org/10.1093/eurheartj/ehac031
   PubMed Web of Science ®Google Scholar
• Roth, P. H., & Gadebusch-Bondio, M. (2022). The contested meaning of “long COVID”–patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 292, 114619. https://doi.org/10.1016/j.socscimed.2021.114619
   PubMed Web of Science ®Google Scholar
• Rushforth, A., Ladds, E., Wieringa, S., Taylor, S., Husain, L., & Greenhalgh, T. (2021). Long covid – the illness narratives. Social Science & Medicine, 286, 114326. https://doi.org/10.1016/j.socscimed.2021.114326
   PubMed Web of Science ®Google Scholar
• Shabnam, S., Razieh, C., Dambha-Miller, H., Yates, T., Gillies, C., Chudasama, Y. V., Manish, P., Banerjee, A., Kawachi, I., Lacey, B., Morris, E. J. A., White, M., Zaccardi, F., Khunti, K., & Islam, N. (2023). Socioeconomic inequalities of long COVID: A retrospective population-based cohort study in the United Kingdom. Journal of the Royal Society of Medicine, 116(8), 263–273. https://doi.org/10.1177/01410768231168377
   PubMed Web of Science ®Google Scholar
• Siegelman, J. N. (2020). Reflections of a COVID-19 long hauler. JAMA, 324(20), 2031–2032. https://doi.org/10.1001/jama.2020.22130
   PubMed Web of Science ®Google Scholar
• Singh, S., & Estefan, A. (2018). Selecting a grounded theory approach for nursing research. Global Qualitative Nursing Research, 5, 1–9. https://doi.org/10.1177/2333393618799571
   Web of Science ®Google Scholar
• Smith, B. (2017). Generalizability in qualitative research: Misunderstandings, opportunities and recommendations for the sport and exercise sciences. Qualitative Research in Sport, Exercise & Health, 10(1), 137–149. https://doi.org/10.1080/2159676X.2017.1393221
   Web of Science ®Google Scholar
• Soriano, J. B., Murthy, S., Marshall, J. C., Relan, P., Diaz, J. V., & on behalf of the WHO Clinical Case Definition Working Group on Post-COVID-19 Condition. (2022). A clinical case definition of post-COVID-19 condition by a Delphi consensus. The Lancet Infectious Diseases, 22(4), e102–e107.
   PubMed Web of Science ®Google Scholar
• Stake, R. E. (1995). The art of case study research. SAGE.
   Google Scholar
• Taylor, A. K., Kingstone, T., Briggs, T. A., O’Donnell, C. A., Atherton, H., Blane, D. N., & Chew‐Graham, C. A. (2021). Reluctant pioneer: A qualitative study of doctors’ experiences as patients with long COVID. Health Expectations, 24(3), 833–842. https://doi.org/10.1111/hex.13223
   PubMed Web of Science ®Google Scholar
• Ten Have, H., & Gordijn, B. (2021). Vulnerability in light of the COVID-19 crisis. Medicine, Health Care and Philosophy, 24(2), 24(153–154. https://doi.org/10.1007/s11019-021-10013-8
   Web of Science ®Google Scholar
• Thyer, B. A. (2001). The handbook of social work research methods. SAGE.
   Google Scholar
• Todres, L., Galvin, K. T., & Holloway, I. M. (2009). The humanization of healthcare: A value framework for qualitative research. International Journal of Qualitative Studies on Health and Well-Being, 4(2), 68–77. https://doi.org/10.1080/17482620802646204
   Web of Science ®Google Scholar
• Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
   Web of Science ®Google Scholar
• Tronto, J. C. (1998). An ethic of care. Generations: Journal of the American Society on Aging, 22(3), 15–20.
   PubMed Web of Science ®Google Scholar
• Tronto, J. C. (2014). Care ethics. In M. T. Gibbons (Ed.), The encyclopedia of political thought (pp. 442–443). Wiley Blackwell.
   Google Scholar
• Universities of the Netherlands VSNU. (2018). Netherlands Code of Conduct for Research Integrity. https://www.universiteitenvannederland.nl/en_GB/research-integrity. Retrieved March 17, 2023.
   Google Scholar
• Vosman, F. (2018). Overleven als levensvorm. Zorgethiek als kritiek op het ideaal van het ‘geslaagde leven’. Universiteit voor Humanistiek.
   Google Scholar
• Wendell, S. (2013). The rejected body: Feminist philosophical reflections on disability. Routledge.
   Google Scholar
• Wong, P. T. P. (2012). The human quest for meaning: Theories, research, and applications. Routledge.
   Google Scholar
• World Health Organization. (2021). A Clinical Case Definition of Post COVID-19 Condition by a Delphi Consensus. https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1. Retrieved March 17, 2023.
   Google Scholar