Idiopathic Parkinson’s disease (iPD) is a common neurodegenerative disorder that increases with age, and in its advanced stages, is characterized by impairment of activities of daily living, symptom burden, and reduced quality of life (Fasano et al., 2019; Feigin et al., 2019). Given the rapidly growing incidence (Feigin et al., 2019), it is a logical consequence that the disease has been recently declared a public health issue with the aim of improving the care of iPD-patients (World Health Organization, 2022). This seems all the more important as iPD specialists are not confident about the quality of care their patients receive in hospital, leading to the recommendation that hospital staff and clinicians should be thoroughly educated about the disease, including management, potential complications and medications to avoid (Chou et al., 2011).

This knowledge contributes to the understanding that one of the pillars of high-quality healthcare is patient safety (World Health Organization, 2019). According to a white paper, patient safety is defined as the extent, determined from the patient’s perspective, to which individuals, professional groups, teams, organizations, associations and the healthcare system

Consequently, patients are assigned an essential role in defining and advancing patient safety (Schrappe, 2018; World Health Organization, 2021). Patients are thought to provide valuable insights into safety that complement existing measurement of patient safety and challenge common definitions of patient safety incidents that focus on physical risks (O’Hara et al., 2018). In this context, although there is a large number of studies dealing with safety aspects in patients with advanced iPD, they are mostly limited to side effects of available treatment options. However, evidence on patient safety in mixed populations with life-limiting conditions suggests that a patient-centered approach must consider safety issues beyond the physical domain to meet patient priorities in healthcare (Pedrosa Carrasco et al., 2021, 2022). These may include factors (e.g., risk behaviors in informal care, abuse, unsafe neighborhoods, natural disasters) that are not a function of healthcare itself, but which may be essential to consider in order to provide holistic care. This is all the more important given that a perception of compromised safety among patients is not only associated with pronounced psychological symptoms such as anxiety and depression (Vincent and Coulter, 2002), but in populations of severely ill patients has been shown to make the decision to present to hospital more likely (Henson et al., 2016; Robinson et al., 2018).

Nevertheless, despite the fundamental importance of patients themselves in establishing safety in the healthcare system, little is known about iPD-patients’ own perceptions of safety. A comprehensive understanding of this could yet be used to promote a differentiated and individualized approach to both safety assessment and the implementation of safety measures. This study set out to examine experiences of hospital patients with advanced iPD to ultimately gain knowledge on how to improve patient safety and, therefore, care for iPD-patients across the care continuum.

Two major conclusions can be drawn from our qualitative study: (i) the perception of safety in advanced iPD corresponds to a multidimensional construct, and based on this, (ii) a holistic and multi-professional approach in iPD care is indisputable to ensure safety.

Advanced iPD is associated with higher disability and mortality (Barer et al., 2022). Our research indicates that patients’ safety perception in advanced stages of the disease is compromised and confirms previous assumptions that patient safety toward the end of life is shaped by the care provided by healthcare staff and informal caregivers, but also by patient-related factors and external factors (Pedrosa Carrasco et al., 2021). We identified various enablers and barriers to patients’ perceptions of safety at physical, psychological, social, and spiritual levels.

Participants shared challenges in engendering safety, as well as safety-giving measures during their journey through the healthcare system. Undoubtedly, our study revealed that motor and non-motor symptoms associated with iPD, as well as uncertainty and worries about the future course of the degenerative disease, can lead to feelings of insecurity. It is not surprising, therefore, that therapeutic efforts were considered to be of great importance for the generation of safety. In this context, however, thorough education about medication, including potential side effects, could enhance a sense of safety and promote patient empowerment. That being said, healthcare which deviates from patient needs or grievances have led to a loss of safety among iPD-patients (Owen et al., 2022). This phenomenon does not seem to be unfounded, as iPD-patients are prone to inadequate prescribing and complications during hospitalizations (Gerlach et al., 2011; Mantri et al., 2019; Bakker et al., 2022; Richard et al., 2022). In our study, participants frequently described insufficient understanding of the disease and lack of expertise in terms of treatment specifics on the part of healthcare professionals as the cause of feeling unsafe. This underscores the usefulness of early collaboration among disciplines and facilitated short-term access to centers with movement disorder expertise for iPD-patients with specialized therapeutic approaches. In addition, in the community specially trained nurses could provide care coordination, patient navigation, and information to complement existing care structures (van Munster et al., 2022). Palliative care services may offer further support to promote safe care for patients with advanced iPD (Fleisher et al., 2020).

But even as private individuals outside the healthcare system, people with iPD often felt their safety threatened when they were exposed to social challenges in society. Even though social safety schemas are assumed to develop early in life, these perceptions are shaped by the actual situations people face (Slavich, 2020). In this respect, our study reflected that social self-schemas and world-schemas were of prominent importance in the experience of safety of people with iPD. Social overload and experienced or perceived stigmatization as a result of their condition were described as relevant safety barriers, leading to social withdrawal in many patients. In our study, these social safety schemas were closely interwoven with psychological aspects of safety. Psychological safety concerns result in a reduction in feeling comfortable being and expressing oneself, and sharing worries and failures without fear of embarrassment, ridicule, shame or retribution (Torralba et al., 2020). The study participants reported impaired general social functioning, but also narrated more specific insecurities in the family environment. For example, in line with earlier research revealing negative effects on couple and family relationships (Vatter et al., 2018; Perepezko et al., 2019), some participants feared being a burden to their family, reported disputes grounded in the disease and their insecurity about not being able to fulfil their partnership in the future.

In a North American study, higher spirituality was associated with less impairment of quality of life and less anxiety and depression in patients with Parkinson syndromes, suggesting a potential influence on feelings of safety (Prizer et al., 2020). Given that a minority of Germans perceive themselves as particularly spiritual or religious (Statista, 2017; YouGov, 2021), it was, however, not unusual that none of the participants reported spiritual or religious crises that led to feelings of insecurity. Nevertheless, for a few iPD-patients interviewed, faith and the idea of a divine plan gave them a sense of safety which might be explained by a protective effect against psychological distress (Bernard et al., 2017). Other research projects could revisit the influence on perceived safety in populations where religion and spirituality are more prominent in everyday life.

In summary, while the identified enablers and barriers to the safety of iPD-patients should be considered to ensure a holistic approach to care, our study also provides direct recommendations for healthcare professionals to promote patient safety. These include a sound knowledge of the disease and its treatment options, prescription of medical aids, as well as soft skills such as empathy, patient-centered communication, and teamwork. The basic prerequisite for understanding individual patient safety is, therefore, a thorough medical history that goes beyond the patient’s physical complaints to address unmet needs.

Our qualitative approach supported explorative investigation of a variety of aspects that contribute to and hinder perceptions of safety in patients with advanced iPD. Nevertheless, there are some important limitations. Recruitment under heterogeneous clinical conditions and exclusion of patients with advanced iPD with severe cognitive impairment may have introduced selection bias. Moreover, given that recruitment took place at a single site in Germany, views may not be representative of patients from other geographical regions. Further research outside Germany could identify country- and health system-specific characteristics of patient safety. In addition, our interview study provided a snapshot; a longitudinal study might yield more information about the variability or persistence of feelings of insecurity.

Our study shows that the perception of safety of people with iPD is subject to a holistic concept based on physical, psychological, social, and spiritual needs. In order to identify safety concerns and address safety issues, multidisciplinary approaches to the care of people with iPD should be adopted. This may include systematically assessing safety concerns and developing safety strategies for patients, taking into account individual characteristics and circumstances. The enablers and barriers identified by our research offer promising starting points for improving the quality of healthcare by informing safety-oriented practice. Nevertheless, complementary quantitative research projects are warranted to estimate the prevalence of individual safety concerns and thus their implications for the healthcare system, and to inform quality improvement initiatives by healthcare professionals and policy makers.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving humans were approved by Ethics Committee of the Medical Faculty of the Philipps University of Marburg. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

AP and DP conceptualized and planned the study. AP conducted the interviews and drafted the manuscript. AP and MvM were involved in the qualitative analysis of data. All authors provided critical comments on drafts of the manuscript and approved the final manuscript.

AP received funding through the Support Fund for Female Doctoral Candidates and Postdocs with Family Responsibilities of the Philipps-University Marburg. Open Access funding provided by the Open Acess Publishing Fund of Philipps-Universität Marburg with support of the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation).

DP received payments as a consultant for Boston Scientific and as a speaker at symposia sponsored by Boston Scientific, Zambon and AbbVie. DP’s institution, not DP personally, received funding from the German Federal Joint Committee (G-BA), the German Federal Ministry of Education and Research, the Horizon 2020 program of the European Commission, Boston Scientific, the Parkinson’s Foundation, the Dr. Reinfried Pohl Foundation, and the German Parkinson Association (dPV). LT reports grants, personal fees and non-financial support from Medtronic, Boston Scientific, St. Jude Medical, UCB Schwarz Pharma, Archimedes Pharma, TEVA Pharma, Lundbeck Pharma, Desitin Pharma, Abbvie; personal fees and non-financial support from SAPIENS; grants and personal fees from Bayer Healthcare; personal fees from Medas Pharma, TAD Pharma; personal fees and non-financial support from GlaxoSmithKline, Orion Pharma; grants from Zur Rose Pharma, outside the submitted work.

The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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