Safety perception in patients with advanced idiopathic Parkinson’s disease – a qualitative study

Abstract

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.

Factors Associated with Preferred Place of Care and Death in Patients with Parkinson’s Disease: A Cross-Sectional Study

“…Contrarily, a lack of support at home could lead to a decision against home death, so that patients with extended family support are more likely to die at home [ 39 ]. Concerns about safety related to inadequate or lack of family support may be one of the underlying reasons [ 5 ], so that one may speculate about a need to furnish informal carers with targeted support, so as to prevent any interference with the patient’s wishes. Further research on the causal links is, however, warranted.…”

“…Additionally, it may be necessary to apprise patients without a personal care network about options available for formal home care until death, subject to their end-of-life wishes. Besides care provision, religious/spiritual affiliation was associated with a wish to die in the home environment, which may also be rooted in an increased level of trust in healthcare providers [ 40 ], self-management performance [ 41 ] and perceived security [ 5 ].…”

“…While hospital admissions may provide a sense of safety for some PwPD [ 5 ], there is an apparent discrepancy with statistics in other populations which show that most people wish to be cared for and die in the home environment [ 6, 7 ]. In addition, a meta-analysis has demonstrated a significant and growing association between a non-cancer diagnosis and a mismatch between preferred (pPOD) and actual place of death (POD) [ 8 ].…”