Abstract
Introduction
The perioperative journey for People with Parkinson's is a high-risk period. The current lack of unified guidance often leads to inconsistent care and unmet patient needs, despite advancements in Parkinson's disease (PD) diagnosis and long-term management. To address this gap, this qualitative study aimed to explore the lived experiences of people with Parkinson's undergoing surgery to inform our clinical guidelines for perioperative PD care that are currently under development.
Methods
Four patients, recruited from the Parkinson’s UK Patient Network, participated in the study. They had undergone various surgical procedures, including deep brain stimulator insertion, hip replacements, and emergency angioplasty. Data were collected through two individual interviews and one focus group involving two patients. Looppanel's research analysis tool was utilised to identify and analyse dominant themes from the transcribed data.
Results
Four dominant themes emerged from the patient narratives. First, medication autonomy was critical; patients emphasised the necessity of timely, self-managed medication to prevent freezing, rigidity, and distress. Second, pervasive knowledge gaps among staff regarding PD symptoms and management were evident, often resulting in traumatic experiences for patients. Third, inadequate discharge planning was frequently reported, with participants discharged without essential provisions for physiotherapy, specialist follow-up, or community support. Fourth, strong, empathetic communication was deemed vital for a positive patient experience, both within multidisciplinary teams for high-quality care and between clinicians, patients, and their advocates to facilitate shared decision-making and patient-centred management.
Conclusion
Perioperative care for people with Parkinson's must be tailored, informed, and continuous. Key recommendations include supporting time-critical medication routines in hospitals, training staff to understand the nuanced manifestations of PD, and structuring discharge as the beginning of a supported recovery rather than the end of care. We hope these patient-led insights will directly influence and significantly improve the future care of people with Parkinson's.