Evaluating the online response to a guide to support people who are caring for dying friends and family, the ‘Deathbed Etiquette: an analysis of Twitter and newspaper comments

Background The guide to Deathbed Etiquette was created in 2019 by The Centre for the Art of Dying Well (@artofdyingwell) to support those at the bedside of a loved one who is dying. Updated guidance was developed in 2020 in response to the COVID-19 pandemic. During the COVID19 pandemic, many people (healthcare professionals and lay) have discussed the guide online; however, the nature of these discussions has not been examined. Aims To evaluate the online response to the Deathbed Etiquette guide. Methods We conducted a retrospective 2-year analysis of social media and newspaper comments, which referenced the Deathbed Etiquette guide. We conducted a sentiment analysis of three UK online newspaper comments about the guide. On Twitter, we analysed sentiment and frequency of tweets using the #deathbedetiquette hashtag; we also explored the relationship of this data with tweets from the @Artofdying Twitter account. Results 104 Tweets included the #deathbedetiquette hashtag (with 272 retweets and 432 likes). Three peaks in tweet intensity corresponded with promotional activity from the @Artofdyingwell account. These dates were July 2019 (Deathbed etiquette launch), August 2019 (Attention from Catholic Church and media) and April 2020 (relaunch of COVID19 guide). Sentiment on Twitter was positive with no negative tweets. The newspaper sentiment analysis demonstrated how the public voiced both supportive and negative comments about the guide. For example, some people did not like the term etiquette or the directive structure of the guide. They also disliked what they considered to be the depressing subject matter. Conclusion Online discussion about the Deathbed Etiquette was varied. Our data demonstrates the potential to use social media and online comments to gain understanding about palliative care interventions. Future work can examine the content of these discussions in greater depth and include other social networks, newspapers and digital formats.