Neurological update: the palliative care landscape for atypical parkinsonian syndromes

O’Shea, Noreen; Lyons, Shane; Higgins, Stephen P.; O’Dowd, Seán

doi:10.1007/s00415-023-11574-9

Cited by 4 publications

(1 citation statement)

References 105 publications

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“…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 ).…”

Section: Discussionmentioning

confidence: 99%

More than medications: a patient-centered assessment of Parkinson’s disease care needs during hospitalization

Shurer,

Golden,

Mihas

et al. 2023

Front. Aging Neurosci.

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BackgroundParkinson’s disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population.ObjectivesThis qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting.MethodsFocus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis.ResultsA total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD.ConclusionPD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes.

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Section: Discussionmentioning

confidence: 99%