Living with Parkinson’s in England during and beyond COVID-19 restrictions: a longitudinal qualitative study

References

• Ahn, S., Springer, K., & Gibson, J. S. (2022). Social withdrawal in Parkinson’s disease: A scoping review. Geriatric Nursing, 48, 258–268. https://doi.org/10.1016/j.gerinurse.2022.10.010
   PubMed Web of Science ®Google Scholar
• Anghelescu, B. A. M., Bruno, V., Martino, D., & Roach, P. (2022). Effects of the COVID-19 pandemic on Parkinson’s disease: A single-centered qualitative study. The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques, 49(2), 171–183. https://doi.org/10.1017/cjn.2021.70
   PubMed Web of Science ®Google Scholar
• Baker, C., Kirk-Wade, E., Brown, J., Barberm, S. (2021). Coronavirus: A history of English lockdown laws. https://commonslibrary.parliament.uk/research-briefings/cbp-9068/
   Google Scholar
• Baschi, R., Luca, A., Nicoletti, A., Caccamo, M., Cicero, C. E., D’Agate, C., Di Giorgi, L., La Bianca, G., Lo Castro, T., Zappia, M., & Monastero, R. (2020). Changes in motor, cognitive, and behavioral symptoms in Parkinson’s disease and mild cognitive impairment during the COVID-19 lockdown. Frontiers in Psychiatry, 11, 590134. https://doi.org/10.3389/fpsyt.2020.590134
   PubMed Web of Science ®Google Scholar
• Brooks, S. K., Weston, D., & Greenberg, N. (2021). Social and psychological impact of the COVID-19 pandemic on people with Parkinson’s disease: A scoping review. Public Health, 199, 77–86. https://doi.org/10.1016/j.puhe.2021.08.014
   PubMed Web of Science ®Google Scholar
• Blakemore, R., Pascoe, M., Horne, K. L., Livingston, L., Young, B., Elias, B., Goulden, M., Grenfell, S., Myall, D. J., Pitcher, T. L., Dalrymple-Alford, J. C., Le Heron, C. J., Anderson, T. J., & MacAskill, M. (2021). Higher perceived stress and exacerbated motor symptoms in Parkinson’s disease during the COVID-19 lockdown in New Zealand. NZ Med J, 134(1538), 44–51.
   PubMed Web of Science ®Google Scholar
• Cavallieri, F., Sireci, F., Fioravanti, V., Toschi, G., Rispoli, V., Antonelli, F., Costantini, M., Ghirotto, L., & Valzania, F. (2021). Parkinson’s disease patients’ needs during the COVID-19 pandemic in a red zone: A framework analysis of open-ended survey questions. European Journal of Neurology, 28(10), 3254–3262. https://doi.org/10.1111/ene.14745
   PubMed Web of Science ®Google Scholar
• Cheong, J. L. Y., Goh, Z. H. K., Marras, C., Tanner, C. M., Kasten, M., & Noyce, A. J, Movement Disorders Society Epidemiology Study Group. (2020). The impact of COVID-19 on access to Parkinson’s disease medication. Movement Disorders: Official Journal of the Movement Disorder Society, 35(12), 2129–2133. https://doi.org/10.1002/mds.28293
   PubMed Web of Science ®Google Scholar
• Corbin, J., & Strauss, A. (1985). Managing chronic illness at home; three lines of work. Qualitative Sociology, 8(3), 224–247. https://doi.org/10.1007/BF00989485
   Google Scholar
• Corbin, J., & Strauss, A. (1988). Unending work and care. Managing chronic illness at home. Josey Bass Publishers.
   Google Scholar
• Dahodwala, N., Xie, M., Noll, E., Siderowf, A., & Mandell, D. S. (2009). Treatment disparities in Parkinson’s disease. Annals of Neurology, 66(2), 142–145. https://doi.org/10.1002/ana.21774
   PubMed Web of Science ®Google Scholar
• Dommershuijsen, L. J., Van der Heide, A., Van den Berg, E. M., Labrecque, J. A., Ikram, M. K., Ikram, M. A., Bloem, B. R., Helmich, R. C., & Darweesh, S. K. L. (2021). Mental health in people with Parkinson’s disease during the COVID-19 pandemic: Potential for targeted interventions? NPJ Parkinson’s Disease, 7(1), 95. https://doi.org/10.1038/s41531-021-00238-y
   PubMed Web of Science ®Google Scholar
• Eatough, V., & Smith, J. A. (2008). Interpretative phenomenological analysis. In C. Willig and W. Stainton Rogers (Eds), The SAGE Handbook og Qualitative Research in Psychology. Sage.
   Google Scholar
• Emery, A., & Anderman, L. H. (2020). Using interpretive phenomenological analysis to advance theory and research in educational psychology. Educational Psychologist, 55(4), 220–231. https://doi.org/10.1080/00461520.2020.1787170
   Web of Science ®Google Scholar
• Ernst, M., Folkerts, A.-K., Gollan, R., Lieker, E., Caro-Valenzuela, J., Adams, A., Cryns, N., Monsef, I., Dresen, A., Roheger, M., Eggers, C., Skoetz, N., & Kalbe, E. (2023). Physical exercise for people with Parkinson’s disease: A systematic review and network meta-analysis. The Cochrane Database of Systematic Reviews, 1(1), CD013856. https://doi.org/10.1002/14651858.CD013856.pub2
   PubMedGoogle Scholar
• Fabbri, M., Leung, C., Baille, G., Béreau, M., Brefel Courbon, C., Castelnovo, G., Carriere, N., Damier, P., Defebvre, L., Doe de Maindreville, A., Fluchere, F., Fuzzatti, M., Grabli, D., Maltete, D., Rousseau, V., Sommet A, A., Thalamas, C., Thiriez, C., Rascol, O., & Ory-Magne, F. (2021). A French survey on the lockdown consequences of COVID-19 pandemic in Parkinson’s disease. The ERCOPARK study. Parkinsonism & Related Disorders, 89, 128–133. https://doi.org/10.1016/j.parkreldis.2021.07.013
   PubMed Web of Science ®Google Scholar
• Farr, J., & Nizza, I. E. (2019). Longitudinal Interpretative Phenomenological Analysis (LIPA): A review of studies and methodological considerations. Qualitative Research in Psychology, 16(2), 199–217. https://doi.org/10.1080/14780887.2018.1540677
   Web of Science ®Google Scholar
• Kumar, M., & Dwivedi, S. (2020). Impact of coronavirus imposed lockdown on Indian population and their habits. International Journal of Science and Healthcare Research, 5(2), 88–97.
   Google Scholar
• Lamont, R. M., Morris, M. E., Woollacott, M. H., & Brauer, S. G. (2012). Community walking in people with Parkinson’s disease. Parkinson’s Disease, 2012, 856237–856238. https://doi.org/10.1155/2012/856237
   PubMed Web of Science ®Google Scholar
• Macleod, A. D., Grieve, J. W., & Counsell, C. E. (2016). A systematic review of loss of independence in Parkinson’s disease. Journal of Neurology, 263(1), 1–10. 10. 1007/s00415-015-7847-8 https://doi.org/10.1007/s00415-015-7847-8
   PubMed Web of Science ®Google Scholar
• Martini, S., Magistrelli, L., Vignaroli, F., Colombatto, F., Comi, C., & Cosentino, M. (2022). The effects of COVID-19-related restrictions on Parkinson’s disease patients in Italy: Results of a structured Survey. Journal of Clinical Medicine, 11(11), 3007. https://doi.org/10.3390/jcm11113007
   PubMed Web of Science ®Google Scholar
• Murray, C. D., & Wilde, D. J. (2020). Thinking about, doing and writing up research using interpretative phenomenological analysis. In C. Walshe & S. Brearley (Eds.), Handbook of theory and methods in applied health research: Questions, methods and choices. (pp. 140–166) Edward Elgar Publishing.
   Google Scholar
• Novick, G. (2008). Is there a bias against telephone interviews in qualitative research? Research in Nursing & Health, 31(4), 391–398. https://doi.org/10.1002/nur.20259
   PubMed Web of Science ®Google Scholar
• Oliveira de Carvalho, A., Filho, A. S. S., Murillo-Rodriguez, E., Rocha, N. B., Carta, M. G., & Machado, S. (2018). Physical exercise for Parkinson’s disease: Clinical and experimental evidence. Clinical Practice and Epidemiology in Mental Health : CP & EMH, 14(1), 89–98. https://doi.org/10.2174/1745017901814010089
   PubMedGoogle Scholar
• Papadopoulos, D. I., Donkov, I., Charitopoulos, K., & Bishara, S. (2020). The impact of lockdown measures on COVID-19: A worldwide comparison. MedRxiv, https://doi.org/10.1101/2020.05.22.20106476
   Google Scholar
• Parkinson’s UK. (2018). The incidence and prevalence of Parkinson’s in the UK. https://www.parkinsons.org.uk/sites/default/files/2018-01/CS2960%20Incidence%20and%20prevalence%20report%20branding%20summary%20report.pdf
   Google Scholar
• Parkinson’s UK. (2020). Parkinson’s and government definitions of vulnerability. https://www.parkinsons.org.uk/search#?cludoquery=government%20difinitions%20vulnerability&cludoCategory=Documents&cludopage=1&cludorefurl=https%3A//www.parkinsons.org.uk/&cludorefpt=Homepage%20%7C%20Parkinson's%20UK&cludoinputtype=standard
   Google Scholar
• Schirinzi, T., Cerroni, R., Di Lazzaro, G., Liguori, C., Scalise, S., Bovenzi, R., Conti, M., Garasto, E., Mercuri, N. B., Pierantozzi, M., Pisani, A., & Stefani, A. (2020). Self-reported needs of patients with Parkinson’s disease during COVID-19 emergency in Italy. Neurological Sciences : official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 41(6), 1373–1375. https://doi.org/10.1007/s10072-020-04442-1
   PubMed Web of Science ®Google Scholar
• Simpson, J., Eccles, F., & Doyle, C. (2020). The impact of coronavirus restrictions on people affected by Parkinson’s: The findings from a survey by Parkinson’s UK.
   Google Scholar
• Simpson, J., Zarotti, N., Varey, S., Anestis, E., Holland, C., Murray, C., & Eccles, F. J. (2022). ‘It’s a double whammy’: A qualitative study of illness uncertainty in individuals with Parkinson’s disease in the context of COVID-19. Chronic Illness, 18(4), 860–873. 17423953211043101. https://doi.org/10.1177/17423953211043101
   PubMed Web of Science ®Google Scholar
• Smith, J. A., & Osborn, M. (2008). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to methods (pp. 53–80). Sage.
   Google Scholar
• Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Sage.
   Google Scholar
• Soilemezi, D., Roberts, H. C., Navarta-Sánchez, M. V., Kunkel, D., Ewings, S., Reidy, C., & Portillo, M. C. (2023). Managing Parkinson’s during the COVID-19 pandemic: Perspectives from people living with Parkinson’s and health professionals. Journal of Clinical Nursing, 32(7-8), 1421–1432. https://doi.org/10.1111/jocn.16367
   PubMed Web of Science ®Google Scholar
• Song, J., Ahn, J. H., Choi, I., Mun, J. K., Cho, J. W., & Youn, J. (2020). The changes of exercise pattern and clinical symptoms in patients with Parkinson’s disease in the era of COVID-19 pandemic. Parkinsonism & Related Disorders, 80, 148–151. https://doi.org/10.1016/j.parkreldis.2020.09.034
   PubMed Web of Science ®Google Scholar
• Sweet, L. (2002). Telephone interviewing: Is it compatible with interpretive phenomenological research? Contemporary Nurse, 12(1), 58–63. https://doi.org/10.5172/conu.12.1.58
   PubMedGoogle Scholar
• Sylvie, G., Farré Coma, J., Ota, G., Aoife, L., Anna, S., Johanne, S., & Tiago, M. (2021). Co-designing an Integrated Care Network With People Living With Parkinson’s Disease: From Patients’ Narratives to Trajectory Analysis. Qualitative Health Research, 31(14), 2585–2601. https://doi.org/10.1177/10497323211042605
   PubMed Web of Science ®Google Scholar
• The Health Foundation. (2021). https://www.health.org.uk/publications/reports/assessing-the-impact-of-covid-19-on-the-clinically-extremely-vulnerable-population
   Google Scholar
• Topriceanu, C. C., Wong, A., Moon, J. C., Hughes, A. D., Bann, D., Chaturvedi, N., Patalay, P., Conti, G., & Captur, G. (2021). Evaluating access to health and care services during lockdown by the COVID-19 survey in five UK national longitudinal studies. BMJ Open, 11(3), e045813. https://doi.org/10.1136/bmjopen-2020-045813
   PubMed Web of Science ®Google Scholar
• van der Eijk, M., Nijhuis, F. A., Faber, M. J., & Bloem, B. R. (2013). Moving from physician-centered care towards patient-centered care for Parkinson’s disease patients. Parkinsonism & Related Disorders, 19(11), 923–927. https://doi.org/10.1016/j.parkreldis.2013.04.022
   PubMed Web of Science ®Google Scholar
• Wildman, J. M., Morris, S., Pollard, T., Gibson, K., & Moffatt, S. (2022). “I wouldn’t survive it, as simple as that”: Syndemic vulnerability among people living with chronic non-communicable disease during the COVID-19 pandemic. SSM. Qualitative Research in Health, 2, 100032. https://doi.org/10.1016/j.ssmqr.2021.100032
   PubMedGoogle Scholar