The objective of this qualitative study was to investigate the perceptions, the feelings and the unmet needs of Parkinson’s Disease (PD) patients who experienced a two-month lockdown in a “red zone” in the northern part of Italy during the COVID-19 outbreak. A descriptive design utilising a cross-sectional online survey with open-ended questions enquired about the person’s feelings concerning the risk of contracting coronavirus, how their physical activity had changed, and their needs related to Parkinson’s disease which had not been meet during the pandemic period, as compared to previous periods. Demographic data were analysed using descriptive frequencies, while the open-ended questions were analysed using thematic framework analysis. The study included 103 participants [male/female: 63/40 (61.17 vs 38.83%)]. Framework analysis lead identification of four main themes: (i) fearing the risk of contracting coronavirus, (ii) reduction of physical activity, (iii) perception of the risk of not being able to access outpatient clinics or support services, and (iv) suffering from reduction in socialisation.
The perceptions of unmet needs appeared to be higher than the experience, particularly for the reduction of physical activity and interrupted contacts with neurologists and other specialists. This study highlights how perceptions and actual experience shape the meaning of living with PD during the pandemic. Worthy of note is the divergence between perceptions and real impact of some aspects of the COVID-19 outbreak.
DOI: 10.1111/ene.14745