Birtwistle, J., Williamson, G., Relton, S.D. et al. (6 more authors) (2025) Community and hospital-based healthcare professionals perceptions of digital advance care planning for palliative and end-of-life care: a latent class analysis. Health and Social Care Delivery Research. ISSN: 2755-0060
Abstract
Introduction Numerous digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. In England, Electronic Palliative Care Coordination Systems have been developed for this purpose, often as a template stored as part of an electronic clinical record system. Despite Electronic Palliative Care Coordination Systems being central to the end-of-life care policy, there has been a lack of exploration of the perspectives of healthcare professionals who use Electronic Palliative Care Coordination Systems and are critical to their implementation.
Objective This study addresses this gap aiming to examine community and hospital-based healthcare professionals’ perceptions of Electronic Palliative Care Coordination Systems on advance care planning and the delivery of palliative care.
Design and methods A cross-sectional online survey.
Setting and participants The target sample comprised health professionals from the main professional groups supporting patients with chronic progressive illnesses in West Yorkshire and London. The survey included items adapted from the Normalisation MeAsure Development questionnaire implementation measure. Survey responses were analysed using descriptive statistics and latent class analysis. Free-text responses relating to alternative approaches to advance care planning documentation were analysed using a directed content analysis approach.
Results Five hundred and sixty-nine health professionals responded to the survey from West Yorkshire (n = 189; 33.2%) and London (n = 380; 66.8%). The largest proportion of respondents came from general practice teams (n = 254; 44.6%). There were prominent differences in responses, with respondents in London more likely to report being familiar with Electronic Palliative Care Coordination Systems. However, West Yorkshire respondents rated Electronic Palliative Care Coordination Systems more highly in terms of being a legitimate part of their role. Across professional groups, respondents from both hospice and care home teams were more likely to view Electronic Palliative Care Coordination Systems as being worthwhile. Commonly reported barriers to the use of Electronic Palliative Care Coordination Systems included not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.
Limitations There was a dominance of responses from participants based on primary care practices, which may reflect general practitioners being largely responsible for initiating an Electronic Palliative Care Coordination Systems record in one region of the survey (West Yorkshire). This survey is reliant on self-reported responses to items and may have also included respondents more engaged with or interested in Electronic Palliative Care Coordination Systems, representing a skewed positive perspective of the systems and how they are being used in practice.
Discussion Variation exists in the way in which Electronic Palliative Care Coordination Systems are perceived and used across both geographical regions surveyed and the professional groups involved in palliative care delivery. There continue to be challenges experienced by those using Electronic Palliative Care Coordination Systems, including not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.
Future work Future research to identify the preferences of health professionals and patients as potential users of Electronic Palliative Care Coordination Systems could guide the development of ergonomic systems that account for the multiple challenges (i.e. physical, cognitive and organisational aspects) involved in their implementation.
Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR129171.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2025 Birtwistle et al. This is an open access article under the terms of the Creative Commons Attribution License (CC-BY 4.0), which permits unrestricted use, distribution and reproduction in any medium, provided the original work is properly cited. |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) |
Funding Information: | Funder Grant number NIHR National Inst Health Research NIHR129171 |
Depositing User: | Symplectic Publications |
Date Deposited: | 24 Mar 2025 10:10 |
Last Modified: | 08 Aug 2025 10:54 |
Status: | Published online |
Publisher: | NIHR Journals Library |
Identification Number: | 10.3310/XCGE3294 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:224716 |