Gotheridge, Hannah and Simpson, Jane and Eccles, Fiona and Murray, Craig (2026) Understanding the experience of living with Parkinson's during and in the aftermath of the COVID-19 pandemic. PhD thesis, Lancaster University.
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Abstract
Background and aim. Parkinson’s is a chronic neurodegenerative condition that requires formal and informal support. However, the COVID-19 pandemic, first reported in the UK in early 2020, disrupted access to this support, causing concern about the acute and long-term implications on the health and wellbeing of people with Parkinson’s. It is now important to understand the experience of living with Parkinson’s during and in the aftermath if the pandemic. Methods. A mixed methods approach was adopted. Four studies were conducted: i) a systematic review of the factors associated with the worsened wellbeing of people with Parkinson’s during the pandemic, ii) a quantitative (hierarchical regression and moderation) analysis investigating the role of social engagement with friends and family in the wellbeing of people with Parkinson’s during the pandemic, iii) an interpretative phenomenological analysis of Parkinson’s-related healthcare experiences of people with Parkinson’s in Northern Ireland before, during and after the pandemic, and iv) a dual perspective (people with Parkinson’s and healthcare professionals) thematic analysis of experiences with telemedicine across the UK before, during and in the aftermath of the pandemic. Results. In the psychological wellbeing review, psychological wellbeing outcomes during the pandemic were the most consistently associated with symptom-related variables and physical activity. Building on an identified gap in the investigation of psychosocial predictors of wellbeing, its prediction by social engagement with i) family and ii) friends was investigated. Regression analysis suggested these distinct constructs were independently and positively associated with wellbeing. However, the findings of a moderation analysis suggested that social engagement with family did not buffer against the negative impact on wellbeing of motor symptom worsening, and that social engagement with friends exacerbated the impact on wellbeing. In the qualitative NI study, consistent with the insufficient investigation of psychosocial variables in quantitative research, participants felt that healthcare in NI was overly focused on the physical aspects of the condition.Moreover, in addition to longstanding resource limitations shaping participants’ healthcare expectations, people with Parkinson’s took active self-management roles in pursuing healthcare services to better meet their healthcare needs. Finally, in the fourth study, the increased adoption of telemedicine services during the pandemic was felt, both by people with Parkinson’s and healthcare professionals, to improve the quality, flexibility and financial efficiency of services. Despite its perceived advantages, the use of telemedicine was suggested to limit the accuracy and/or depth of healthcare professionals’ appraisals of the health and wellbeing of people with Parkinson’s. Moreover, concerns were raised about the ability of people with Parkinson’s to exercise preference over the mediums through which their healthcare was accessed (e.g., telemedicine, in-person). Conclusion. The COVID-19 pandemic was associated with poorer psychological (and physical) wellbeing in people with Parkinson’s. From the perspective of service users, notable gaps were identified in the understanding and treatment of Parkinson’s in UK healthcare services. The successful alignment of health and social care services with the post-COVID needs of people with Parkinson’s is challenged by systemic issues. Key challenges include the dominance of biomedical conceptualisations of Parkinson’s, difficulty establishing successful multidisciplinary teams, and widespread resource limitations.