Background Parkinson’s disease (PD) is a common life-limiting neurodegenerative condition. As far as we are aware, no study to date has looked holistically at how palliative and end of life care is delivered for patients with PD in the UK from the perspective of healthcare professionals. To address this knowledge gap, a focus group of experts in the fields of palliative care and Parkinson’s disease was held to determine the current landscape of care and areas where care could be improved.
Methods An exploratory qualitative focus group took place online in December 2020 with twelve clinicians comprising physicians, nurses and a pharmacist from a range of speciality backgrounds and geographical areas. The focus group was recorded and transcribed verbatim. Analysis was conducted using an iterative approach based on inductive coding by two independent reviewers to categorise the data into themes and sub-themes.
Results Four major themes were identified: i) Patient centred care - clinicians felt that lack of personalised care meant that assessment and management of symptoms was sub-optimal ii) Navigating advance care plans - clinicians expressed difficulty in initiating and engaging in ACP discussions, as well as facilitating patient adaptability iii) Uncertainty - uncertainty of both the clinician and the patient was felt to be a barrier to the delivery of quality care iv) Strengthening care across different settings – clinicians stressed the importance of strengthening support in community and primary care settings, with the role of a coordinating keyworker being advocated
Conclusion Meaningful relationships between patients and healthcare professionals, as well as services and settings, are the foundation of providing high quality care. New ways of delivering care due to the COVID-19 pandemic have been continued, such as video consultations. This focus group provided a rich discussion and has been used as springboard to develop a Delphi study to develop gold standards in palliative care for patients with PD.
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