Objective: To determine the specific challenges and opportunities people with Parkinson’s disease (PWP) experienced before and after receiving the Covid-19 vaccine.

Background: The Covid-19 pandemic caused significant disruption to daily life with the closure of many in-person services, the development of virtual meeting platforms, and social isolation. In addition, PWP noted increased loneliness and worsening clinical outcomes during the pandemic [1].

Method: PWP were recruited from a tertiary center in MA, USA (Oct 2021-Nov 2021). Eligible individuals were fully vaccinated against Covid-19 (defined at the time as at least two doses) and met the Movement Disorder Society consensus criteria for clinically definite or probable Parkinson’s disease [2]. Thirteen subjects participated in semi-structured recorded telephone interviews centered on the subject’s experiences during the Covid-19 pandemic. The interviews were transcribed and coded by two independent coders. Themes were deduced, and enrollment stopped after theme saturation.

Results: We formulated three primary themes from the transcriptions. First, trust was a critical element in choosing the source(s) of information about Covid-19. This observation held despite the variability in the source of information. Second, normalization of the change occurred implicitly. There was a discordance between the PWP’s perception of change during the Covid-19 pandemic and their actual lived experiences. Many PWP reported no significant change in their daily activities, but when these aspects were assessed, there were many changes compared to the pre-pandemic situation (e.g., less engagement in physical therapy). Finally, social intimacy remained reduced even after complete vaccination, as some PWP continued restricting social circles and limited direct physical contact with friends and acquaintances.

Conclusion: This thematic analysis identified three critical themes from the lived experiences of PWP during the Covid-19 pandemic: trust, implicit normalization, and decreased social intimacy. First, this study reinforces published data on the critical role of trust in information dissemination [3]. Second, it suggests neurologists must play an active role in elucidating the normalized Covid-19 imposed restrictions on quality of life as PWP may not be aware of the impact. Finally, as the Covid-19 pandemic evolves, we need to monitor its social effects and implications.

References: 1.Subramanian I. (2020). Virtual Parkinson’s Disease support groups in the COVID-19 era: social connection in the time of social distancing. Mov Disord Clin Pract. 7:739–40. doi: 10.1002/mdc312994
2.Postuma, R., Berg, D., Stern, M., Poewe, W., Olanow, C., Oertel, W., et al. (2015). MDS clinical diagnostic criteria for Parkinson’s disease. Movement disorders : official journal of the Movement Disorder Society, 30(12), 1591-1601. http://dx.doi.org/10.1002/mds.26424
3.Maykrantz S., Gong T., Petrolino A., Nobiling B., Houghton J. (2021). How Trust in Information Sources Influences Preventative Measures Compliance during the COVID-19 Pandemic. International Journal of Environmental Research and Public Health, 18(11), 5867. https://doi.org/10.3390/ijerph18115867.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/challenges-and-opportunities-people-with-parkinsons-disease-experienced-pre-and-post-covid-19-vaccination/