Imagine you’re exploring a vast ocean, sailing toward the horizon with the wind in your hair. You feel a sense of excitement and freedom, but also a nagging worry about the unknown dangers that may lurk beneath the waves. This feeling of exhilaration mixed with caution is similar to the safety perception experienced by patients with advanced idiopathic Parkinson’s disease (iPD). In a recent qualitative study, researchers delved into the minds of these patients to understand how they view their own safety as their illness progresses. What they discovered was a complex interplay of factors influencing safety perception in iPD patients. These factors included the relationship to the disease, level of informedness, self-perception, utilization of support and care structures, healthcare professionals and structures, treatment, social interaction, social security, spirituality, and environment. By uncovering these enablers and barriers to establishing safety, this study sheds light on the importance of taking a holistic and multidisciplinary approach to assessing and improving patient safety in iPD. Clinicians and policy makers can now use these insights to navigate the turbulent waters of patient care and create strategies that address the unique safety concerns faced by individuals with advanced iPD. So grab your compass and dive into the research to learn more about this fascinating topic!

BackgroundA fundamental cornerstone of quality of healthcare is patient safety, which many people with life-limiting illnesses feel is being compromised. Perceptions of impaired safety are associated with the occurrence of psychological distress and healthcare utilization. However, little is known about how people with idiopathic Parkinson’s disease (iPD) perceive their own safety toward the end of life. The aim of our study was therefore to investigate factors that influence the perception of safety of patients with advanced iPD.MethodsWe conducted semi-structured interviews with a purposeful sample of 21 patients with advanced iPD. Participants were recruited at the neurology department of a tertiary care hospital in Germany between August 2021 and June 2022. Data were analyzed using reflexive thematic analysis.ResultsiPD-patients reported relevant impairment of their safety. While most participants expressed safety concerns based on the manifestation of disease, our analysis identified enablers and barriers to establishing safety in patients with advanced iPD, in 10 additional domains: relationship to the disease, informedness, self-perception, utilization of support and care structures, healthcare professionals and structures, treatment, social interaction, social security, spirituality, and environment.ConclusionThis study provides new insights into safety perceptions of patients with advanced iPD, which extend well beyond the physical realm. The findings suggest that clinicians and policy makers should consider a holistic and multidisciplinary approach to assessing and improving patients’ safety taking into account the enablers and barriers identified in this study.

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