Social media, palliative care, and the Coronavirus (covid-19) pandemic.

by Professor Bridget Johnston, Florence Nightingale Foundation Clinical Professor of Nursing, University of Glasgow and Ms Maria Drummond, PhD Student at University of Glasgow and District Nurse.

The importance of delivering effective palliative care in the Coronavirus (covid-19) pandemic is essential. In Scotland, we realised that clinicians working in palliative and end-of-life care during the covid-19 pandemic were at a crossroads. There was a need to stay up to date with evidence to support clinical decision-making, but it was difficult with increasing workloads to access and critique the emerging literature. Bridget, a clinical academic, leads a nurse led palliative and end-of-life care research team at the University of Glasgow. We decided, in conjunction with palliative care colleagues in Scotland, and alongside the development of rapid Scottish focussed palliative care clinical guidelines for covid-19 [1] to set up the ScotPalCovid twitter page (@Scotpalcovid) [2] and blog [3] at the end of March 2020. The purpose was to collate, review and disseminate evidence rapidly related to palliative, end of life and covid-19 issues.

Since we set up our social media accounts, we have 437 followers on twitter and our blog has been viewed over 2000 times around the world. At the time of writing, our top three visitor locations are the UK (1164 views), North America (458 views) and Australia (95 views). However, we have even reached places like Bahrain, Slovenia, and South Africa.

Our first month (April) was spent reviewing the evidence on the use of syringe drivers, anticipatory care planning, hospital visiting, dyspnoea and fatigue management related to covid-19. Since May we have prioritised keeping the reviews up-to-date and running the twitter page. In addition, Professor Johnston has joined the group at the Centre For Evidence Based Medicine at the University of Oxford where we have a palliative care group looking at evidence and doing rapid reviews on covid-19 palliative care issues [4]. 


In terms of keeping the palliative care community up to date with evidence, we do daily literature searches to get the latest research-based evidence. We also have Google Alerts set up for non-academic covid-19 articles related to palliative and end of life care. From this, we have been able to monitor what kind of issues are reaching the public. The aim is by sharing these articles we can help clinicians anticipate the types of questions patients and their families might have. Interestingly, the topics covered in non-academic literature initially came collectively in waves. At the beginning of lockdown, the focus was on equipment and ICU provision, then it moved to anticipatory care planning, then the fear/reality of dying alone, then hospices and finally care homes. Understandably, the care home issue has not gone away since the first research and anecdotal articles appeared.

It does appear that in the current body of literature the voices of nurses are missing. Much of the clinical literature has been written by and for medical doctors. We take this opportunity to celebrate nurses working tirelessly in the face of covid-19. A post on social media a few weeks ago that was disseminated widely (9200 likes), made clear the most important piece of equipment in the ICU during the current pandemic was not the ventilator but the nurse [5]. Nurses, particularly on the frontline, can see what is working, as well as things that can be done differently to provide more effective and efficient care, and offer suggestions for improvement. Nurses are also in teaching roles, as well as, participating in and leading on research. Most importantly nurses are in NHS, and social care leadership and senior management roles, providing important leadership in the response to covid-19.

In addition, there is also a dearth of high-quality qualitative research, yet, there is a strong desire for it. The posts on our twitter feed that consistently get the most interaction are the reflective, experiential articles. Our jobs are transforming and evolving at rapid speed, while we are collectively mourning the lives of tens of thousands of people. Our plea would be if we are to experience any subsequent waves from covid-19, or other pandemics, we need to get our experiences out there. Research led by nurses would allow us to share our lived experiences, to make sense of what has happened and help us to prepare for what may lie ahead.

References/links
1. https://www.palliativecareguidelines.scot.nhs.uk/covid-19-guidance.aspx
2. https://twitter.com/scotpalcovid?lang=en
3. https://scotpalcovid.wordpress.com
4. https://www.cebm.net/oxford-covid-19-evidence-service/
5. https://twitter.com/emergmeddr/status/1247472978218160128?lang=en


Professor Bridget Johnston (Bridget.Johnston@glasgow.ac.uk) @BridgetJohnst

Ms Maria Drummond @mdrumm88

@Scotpalcovid

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