People with a clinical diagnosis of Parkinson’s disease (PD) experience more frequent and prolonged hospitalizations than their age-matched peers (Aminoff et al., 2011; Chou et al., 2011; Hobson et al., 2012; Kowal et al., 2013; Shahgholi et al., 2017; Su et al., 2018). Most hospitalizations occur in general wards and result from a comorbid disorder or health crisis, such as respiratory and urinary tract infections, cardiovascular diseases, falls, and fractures (Woodford and Walker, 2005; Braga et al., 2014; Lubomski et al., 2015; Gil-Prieto et al., 2016; Okunoye et al., 2020; Réa-Neto et al., 2021). It is well documented that during hospitalizations, person with PD (PwP) is at a higher risk of complications, including falls, medication errors, development of delirium and psychosis, and overall decline of their pre-existing motor and non-motor symptoms of PD (Derry et al., 2010; Gerlach et al., 2013; Lubomski et al., 2015; Skelly et al., 2017; Magnuszewski et al., 2022). Improved medication adherence during hospital stays, e-alerts to PD specialists upon admission, development of the Parkinson’s Foundation Aware in Care Hospital Kit, and recommendations for ward certification programs are among the calls for action and quality improvement interventions that have targeted hospital outcomes for PD (Azmi et al., 2019, 2020; Hobson et al., 2019; Aslam et al., 2020; Nance et al., 2020; Parkinson’s Foundation Hospital Safety Kits, 2003). However, to date, only a few studies have reported significant decreases in the length of hospital stay or complications during hospitalization for PD (Skelly et al., 2014; Azmi et al., 2020).

In the context of inpatient hospitalization for older adults and those with chronic and serious medical conditions, patient-centered care (PCC) has revealed benefits in intermediate and distal outcomes, and almost all studies have found positive relationships between PCC approaches and patient satisfaction (Counsell et al., 2000; Wolf et al., 2008; Rocco et al., 2011; Rathert et al., 2013). PCC places patients at the center of the healthcare decision-making process and recognizes the importance of their individual preferences and goals (Berwick, 2009; Institute of Medicine, 2014). Growing awareness of PCC delivery has resulted in the establishment of specialized multidisciplinary teams as the gold standard of outpatient care for PD, as well as the increasing application of palliative care, a traditionally team-based model of care, for the management of the physical, emotional, and spiritual needs of PwPs (Eggers et al., 2018; Connor et al., 2019; Vlaanderen et al., 2019; Bhidayasiri et al., 2020; Kluger et al., 2020; Rajan et al., 2020; Lennaerts-Kats et al., 2022).

Presently, the voices of PwPs and their care partners (CPs) regarding their experiences during hospitalization are not well represented in the literature, and most research on PCC for PD has focused on outpatient care. Studies that qualitatively investigated hospitalization for PD primarily highlighted medication mismanagement, struggles with postoperative confusion, and deterioration of motor symptoms; however, they minimally captured patient-reported needs or experiences of CPs during hospitalization (Barber et al., 2001; Buetow et al., 2009; Gerlach et al., 2012; Carney Anderson and Fagerlund, 2013; Read et al., 2019).

By applying open–ended questions qualitative methods gather detailed and nuanced accounts of participants’ experiences, perceptions, and behavior. Compared to quantitative methods, which are intended to achieve the breadth of understanding of a topic, qualitative methods dive deep into individual experiences and the context surrounding them (Patton, 2002).

Unlike quantitative research, which emphasizes data generalization by employing sample size calculation and randomization, qualitative methods place primary emphasis on saturation, which means collecting the information until no new substantive insight emerges (Francis et al., 2010). To achieve saturation, researchers often use purposeful sampling by recruiting individuals who are especially knowledgeable about or experienced with a phenomenon of interest, available and willing to participate, and can communicate experiences and opinions in an articulate, expressive, and reflective manner (Guest et al., 2006). This approach can collect robust and meaningful data per participant, and thus fewer participants within the sample are needed to achieve saturation or “information power” of the sample (Malterud et al., 2016). The choice for qualitative data analysis is dictated by qualitative study methods and the research question. Since open–ended surveys, focus groups, and one on one interviews create information-rich and nuanced datasets, thematic analysis is commonly applied to this qualitative method. This involves creating codes (labels) to organize and describe the data, and then actively synthesizing the data by framing, interpreting, and/or connecting data elements to construct the themes (Kiger and Varpio, 2020). The advantage of thematic analysis is that it offers researchers flexibility concerning the type of research questions it can address, however, it also implies a systematic and iterative process that requires careful attention and interpretation of the data, and then a rigorous approach to identifying and validating themes (Braun and Clarke, 2006, 2012; Kiger and Varpio, 2020).

To expand the scope of patient-centered PD care from outpatient to inpatient settings, we employed qualitative research to gather and analyze valuable self-reported experiences of PwPs and CPs regarding hospitalization.

Our study used an innovative approach to define care needs of PwPs and CPs in the inpatient setting. By gathering first-hand experiences from direct stakeholders, we used qualitative and patient-centered methods to define the challenges and opportunities for improving hospitalization for PD. Thematic analysis revealed unique needs of PwPs and CPs while in the hospital, including the desire for individualized treatment plans and approaches, and the impact of the PD diagnosis on the perception of care during hospitalization.

Consistent with previous literature, the timely provision of PD medications was a key factor in the experience of and satisfaction with care for participants (Barber et al., 2001; Burroughs et al., 2007; Gerlach et al., 2011). In a systematic review examining the prevalence of adverse events related to medication errors, 31% of PwPs expressed dissatisfaction in the way their PD was managed (Gerlach et al., 2011). A more recent study focusing on motor outcomes identified medication errors as the most important factor in motor deterioration during hospitalization (Gerlach et al., 2013). Owing to challenges with medications in the hospital, most participants in our study proceeded with or desired medication self–management. Studies in other patient populations demonstrated the benefits of carefully applying validated medication self–administration protocols during hospitalization and after discharge (Manias et al., 2006; Vanwesemael et al., 2018a,b). The potential benefits and barriers to PD medication self-administration have been explored in outpatient settings; however, no study to date has assessed attitudes toward inpatient medication self-management in the PD population (Tuijt et al., 2020; Armstrong et al., 2021). Strategic and evidence-based medication self-management protocols for PwPs in the early stages or with support of CPs could empower PwPs and CPs and alleviate the workload on hospital staff.

Participants highlighted an important opportunity to improve PCC through individualized assessment of fall risk and flexibility in fall prevention protocols. To our knowledge, the study of falls and fall prevention protocols in hospitalized PwPs does not exist, even though gait and balance deficits were found in 41% of hospitalized PD patients, and prospective studies documented falls in up to 70% of PwPs (Wood et al., 2002; Bernhard et al., 2018). In older adults, a multidisciplinary and patient-centered approach to the development and implementation of hospital fall prevention protocols has been beneficial and could serve as a roadmap for similar quality improvement initiatives for PwPs (Covinsky et al., 2011; Hempel et al., 2013; Matarese et al., 2015). Participants in our study also strongly advocated for safe mobilization and early assessment by rehabilitation therapists during their hospital stay because of their fear or the reality of worsening PD motor symptoms due to immobility. Although there is a lack of literature on the safety and feasibility of early mobilization for hospitalized PwPs on general wards, studies show the benefits of early mobilization after surgery in PD (Macaulay et al., 2010; Schroeder et al., 2015). Walking during hospitalization is effective for older adults, promoting mobility, shortening hospital stays, and increasing likelihood of discharge to home (Hastings et al., 2018). Interventions to encourage mobility in this population show promise in preventing hospital-associated functional decline and maintaining prehospitalization mobility (Wassar Kirk et al., 2018; Cohen et al., 2019; Resnick and Boltz, 2019). Reported barriers to physical activity during hospitalization include insufficient staffing to assist with or encourage mobility, illness symptoms, fear of falls, and a discouraging hospital environment (Brown et al., 2007; Boltz et al., 2011; Koenders et al., 2020). Our study participants alluded to similar barriers to mobilization during their hospital stays. In addition to further research on fall prevention protocols for hospitalized PwPs, identifying patients with low fall risk and encouraging safe ambulation could be the first step to translate the well-established benefits of sustained mobility from outpatient to inpatient care for PD and to empower PwPs and CPs during hospitalization (Ellis et al., 2021).

In our study, nearly two-thirds of participants lived with the PD diagnosis for more than 6 years, and 84% experienced unplanned hospitalizations, emphasizing the complexity of care in the mid- and later stages of PD. The participants’ descriptions of challenges with navigating the hospital environment, including but not limited to tremor preventing the ease of intravenous cannulation placement, difficulty picking up and swallowing food that was served, and using hospital equipment like nurse call buttons, were not anticipated by the researchers when this study was designed. These PD-related challenges point to the hidden impact of hospitalization on one’s sense of independence. In addition, many CPs mentioned worsening of cognitive function or the development of delirium in PwPs while hospitalized. Our study methods precluded us from identifying specific practices implemented for delirium prevention; however, participants in multiple focus groups mentioned poor sleep protection for PwP during hospitalization. This was similar for CPs, who left the hospital feeling exhausted from reportedly sitting in uncomfortable chairs, monitoring and speaking for their PwP, and continuing to care for their partners once discharged home. Patients diagnosed with PD are fivefold more likely to be treated for delirium than patients from the general population, which may be related to non-motor symptoms in PD, such as dementia, cognitive impairment, and sleep disturbances (Figueroa-Ramos et al., 2009; Stavitsky et al., 2012; Lubomski et al., 2015). Since hospitalization places older adults and PwPs alike at risk for new or worsening disability and reduces likelihood of recovery, several successful interventions have been employed to modify hospital environment and improve patient experience and outcomes (Covinsky et al., 2011; Cohen et al., 2019; Resnick and Boltz, 2019; de Foubert et al., 2021). The hospital environment has a significant impact on patient satisfaction with care, and thus, it could be beneficial to develop and adopt customized hospital accommodations for PwPs to optimize outcomes and decrease risk of complications (Skelly et al., 2014; Rapport et al., 2019).

When patients with chronic conditions are admitted to the hospital, they are expected to switch from being the leader of their own care to being a passive consumer who resumes self-management only upon discharge. Consequently, during hospitalization, the combined stress of acute and chronic illness, set against the background of ongoing pressure to advocate for their unique needs, may be all-consuming for PwPs and CPs. Yet, this can be easily overlooked by HCTs as they are focused on medical management of the acute condition that caused hospitalization. In our study, PwPs and CPs sought active acknowledgement of PD diagnosis by their HCT and adjustment of the hospital communications, protocols or even environment, all of which underscore the impact of PD diagnosis on their perceptions of and experiences with inpatient care. Chronic care advocates argue that hospitals will continue to play a key role in chronic disease care, despite how many acute hospitalizations can be avoided, as most chronic conditions are characterized by acute exacerbations requiring admission (Hernandez et al., 2009; De Regge et al., 2017). Innovative care delivery models, such as the Chronic Care Model, recognize the importance of better preparing hospitals for a role in chronic illness management and demonstrate positive outcomes associated with specialized knowledge of PD among inpatient HCTs (Skelly et al., 2015; Siu et al., 2017). Thus, key findings from our study support acknowledging and accommodating the intersectional needs between the chronic condition of PD and the acute reason for hospitalization of the PwP.

The strength of our study is the use of purposeful sampling, a technique widely used in qualitative research, to identify and select information-rich cases for the most effective use of limited resources (Patton, 2002). Purposive sampling allowed us to identify and select individuals in different stages of PD and ensure that we would capture maximum variation of hospitalization experiences. Qualitative analysis can reveal themes in the data that otherwise may be difficult to identify using quantitative approaches. Focus groups, as a qualitative method, carried an additional strength by creating information—rich data. Focus groups allowed people to discuss the relevant topics with other PwPs and CPs using their own language, to build upon each other’s accounts and promoted “memory synergy,” bringing forth a “collective memory” of varied perspectives on similar experiences during hospitalization (Kamberelis and Dimitriadis, 2013). One of the limitations of our study is that we were unable to recruit CPs who experienced planned hospitalizations with their PwP, and, as a result, this perspective was not represented in our focus groups. Our sample was largely white, despite having intentionally expanded our recruitment efforts to include PwPs and CPs from diverse demographic backgrounds. Racial and ethnic differences in diagnosis, care experiences, and treatment utilization with PD are well known (Ben-Joseph et al., 2020). Therefore, the findings from this study likely cannot be generalized to the overall PD population and must be further validated in people with varied racial, ethnic, socioeconomic, and clinical backgrounds. Because the focus groups occurred months after their hospital stays, participants’ reports were subject to recall bias, and their nonclinical knowledge may have restricted their abilities to identify all factors impacting their hospitalizations. Despite the fact that some of the focus group participants were hospitalized during the COVID-19 pandemic, the discussion did not elucidate robust comments to draw any conclusions about the effect of the COVID-19 pandemic on their experience with hospital care. Despite these limitations, this study provided a novel opportunity for PwPs and CPs to describe their own realities of their hospitalization experiences.

Our study adds to the canon of literature on hospital care for PD. Still, several concepts brought forth by this study warrant further exploration. There is an opportunity to further investigate the role and impact of advocacy by PwPs and CPs on healthcare delivery, as well as explore methodology to capture the real-time experiences of PwPs and CPs during hospitalization, as has been accomplished in other medical conditions (Gualandi et al., 2021). Additionally, the methods and findings of this study serve as good starting points for understanding the hospital experiences of those with atypical parkinsonian syndromes, including progressive supranuclear palsy and multiple system atrophy, given the complexity of symptoms, rapid disease progression, profound lack of awareness of these rarer neurodegenerative diagnoses within the medical community, and the current dearth of research on hospital care for atypical parkinsonism (Dayal et al., 2017; O’shea et al., 2023).

Our qualitative study draws attention to the significant impact a PD diagnosis can have on planned and unplanned hospital stays, even when the reason for care is not directly related to PD. It highlights the plethora of unique needs PwPs and their CPs have during hospitalization. Findings from this study can be used to inform patient-centered interventions aimed at improving the experience with hospital care for PD, including tools that help PwPs prepare for and advocate during hospitalization as well as ensuring flexibility, as appropriate, within hospital protocols. Empowering PwPs and CPs to communicate their questions, concerns, goals, and needs, both generally and regarding PD, with HCT in the hospital setting, thus applying the principles of PCC, could lead to the care they desire and set them up for higher likelihood of positive outcomes following hospitalization.

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 the Office of Human Research Ethics the University of North Carolina at Chapel Hill. The studies were conducted in accordance with the local legislation and institutional requirements. The ethics committee/institutional review board waived the requirement of written informed consent for participation from the participants or the participants’ legal guardians/next of kin because the research was deemed to have no more than minimal risk of harm to subjects and involves no procedures for which written consent is normally required outside of the research context (e.g., many phone or mail surveys, “man in the street” interviews, etc.).

NB: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Software, Visualization, Writing – original draft, Supervision, Validation. JS: Conceptualization, Data curation, Funding acquisition, Investigation, Project administration, Resources, Methodology, Writing – original draft. SG: Data curation, Methodology, Software, Writing – review & editing, Formal analysis, Validation. PM: Conceptualization, Data curation, Methodology, Writing – review & editing, Supervision.

The study was supported by Parkinson’s Foundation Community Outreach Resource Education grant PF-CORE-2008 and Parkinson’s Foundation Center of Excellence Award PF-COE-929858.