Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services
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Abstract
Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt.
Aim:
Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations.
Design:
Online survey of UK palliative/hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges.
Respondents:
Two hundred and seventy-seven services.
Results:
More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures.
Conclusions:
Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.
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SciScore for 10.1101/2020.10.28.20200725: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical approval was obtained from King’s College London Research Ethics committee (LRS-19/20-18541). Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable not detected. Table 2: Resources
Software and Algorithms Sentences Resources (20) Survey and data collection: REDCap was used to securely build and host the survey which aimed to understand how palliative care services responded to the COVID-19 pandemic, and comprised of closed- and free-text responses (full survey in supplementary file 1 and procedures for survey are provided in supplementary file 2). REDCapsuggested: (REDCap, RRID:SCR_003445)Free text … SciScore for 10.1101/2020.10.28.20200725: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical approval was obtained from King’s College London Research Ethics committee (LRS-19/20-18541). Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable not detected. Table 2: Resources
Software and Algorithms Sentences Resources (20) Survey and data collection: REDCap was used to securely build and host the survey which aimed to understand how palliative care services responded to the COVID-19 pandemic, and comprised of closed- and free-text responses (full survey in supplementary file 1 and procedures for survey are provided in supplementary file 2). REDCapsuggested: (REDCap, RRID:SCR_003445)Free text responses were analysed in NVivo (v12) using a thematic Framework approach. NVivosuggested: (NVivo, RRID:SCR_014802)Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Strengths, limitations, and future research: This survey received a high number of respondents from all palliative care settings: Hospice UK report approximately 200 hospice services across the UK; 168 (∼ 84%) responded to this survey. (53) The timely delivery of the survey enabled capture of changes across the peak of the first wave of COVID-19 in the UK. ACP is influenced and moderated by contextual and cultural-dependant factors. (54, 55) Whilst many of the findings of this paper may be applicable in these contexts, more research that explores international and cultural differences regarding ACP during COVID-19 is needed. Survey data was collected at a single time-point and so the processes through which challenges to ACP changed over time, and the longer-term impact, sustainability, and effectiveness of changes are not always clear.
Results from TrialIdentifier: We found the following clinical trial numbers in your paper:
Identifier Status Title ISRCTN16561225 NA NA Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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