Table 2

Characteristics of included studies

ReferenceStudy design (quality assessment, %)PlatformSocial media approachSocial media applicationEthical considerationsData collection
Data extraction toolSearching key termsNumber of posts/videos/articles
Salmi et al (2020)44 Qualitative study (85)TwitterAs a secondary data sourceTo engage stakeholders to understand their experiences or thoughts‘Non-Human Subjects Research’ determined by the Institution Review Board.Symplur#BTSM, #HPM772 tweets
Padmanabhan et al (2021)45 Cross-sectional study (85)TwitterAs a secondary data sourceTo engage stakeholders to understand their experiences or thoughts and and to investigate surveillance on the frequency, trend and features of public conversationExempt from ethical review determined by the Institution Review Board.Symplur Signals#palliativeCare182 661 tweets
Cutshall et al (2020)57 Qualitative methods (65)TwitterAs a secondary data sourceTo engage stakeholders to understand their experiences or thoughtsNot Human Subjects Research determined by the institutional review board.Manually collected#BTSM536 tweets
Taylor and Pagliari (2018)49 Qualitative study (80)TwitterAs a secondary data sourceTo engage stakeholders to understand their experiences or thoughtsEthics approval was provided by the Institutional Review Board. Written agreement was sought and obtained.Manually collected@GrangerKate550 tweets
Claudio et al (2018)50 Cross-sectional study (75)YouTube, Facebook and TwitterAs a secondary data sourceTo explore the quality and features of online resourcesExempt from ethical review determined by the institutional review board.Manually collected“palliative care” (YouTube), “#palliativecare”, “#pallcare”, and “#palcare” (Twitter)25 tweets, 25 Facebook, 10 videos
Mitchell et al (2017)58 Mix-method study (70)YouTubeAs a secondary data sourceTo explore the quality and features of online resourcesNot reportedManually collected‘Advance Care Directive’ OR ‘ACP’ OR ‘Advance Care Plan’42 videos
Nwosu et al (2015)15 Retrospective analysis (quantitative study) (83)TwitterAs a secondary data sourceTo investigate surveillance on the frequency, trend and features of public conversationNon-human subjects, therefore ethics committee approval was not deemed to be necessary.TopsyPro#hpm #hpmglobal #eolc #Hospice care Liverpool care pathway683 500 tweets
Zhao et al (2020)13 Quantitative study (64)TwitterAs a secondary data sourceTo investigate surveillance on the frequency, trend and features of public conversationNot reportedTwitter API“palliative care” and “palliative medicine” etc.371 880 tweets
Buis (2008)46 Qualitative content analysis (90)Yahoo!As a secondary data sourceTo explore the quality and features of online resourcesWas approved by a university institutional review board and adhered to guidelines for ethical research.Manually collectedhospice443 posts
Singh et al (2021)51 Qualitative content analysis (75)TwitterAs a secondary data sourceTo engage stakeholders to understand their experiences or thoughtsEthical approval was obtained from the institutional ethics committee. Consent was waived.Manually collected#pallicovid and #COVID-19, palliative care OR COVID-19 OR death OR dying33 online articles and blogs
Guidry and Benotsch (2019)52 Mix-method study (80)PinterestAs a secondary data sourceTo investigate surveillance on the frequency, trend and features of public conversationInstitutional review board approval was not required.Manually collectedChronic Pain502 pins
Patel et al (2022)53 Mixed-method study (75)TwitterAs a secondary data sourceTo investigate surveillance on the frequency, trend and features of public conversationInstitutional review board approval was not required.Twitter API“DNR”, “DNI”,“advance directives,” “ECMO,” “CPR,” “dialysis,” and “ventilation,” “advance directives” etc.202 585 tweets about LSIs and 67 162 tweets about ACP
Easwar et al (2022)54 Mixed-method study (74)TikTokAs a secondary data sourceTo explore the quality and features of online resourcesNot reportedManually collected‘palliative.’146 videos
Lattimer et al (2022)59 Mixed-method study (65)TwitterAs a secondary data sourceTo investigate surveillance on the frequency, trend and features of public conversationNot reportedTwitter API#nhdd, #advancecareplan, and #goalsofcare, healthcare decision day, advance care plan, goals of care.9713 tweets
Liu et al (2019)12 Review (73)YouTubeAs a secondary data sourceTo explore the quality and features of online resourcesInstitutional review board approval was not required.Manually collectedpalliative care84 videos
Wittenberg-Lyle et al (2014)55 Review (75)YouTubeAs a secondary data sourceTo explore the quality and features of online resourcesNot reportedManually collectedpain and cancer; pain and hospice; pain and PC palliative care43 videos
Levy et al (2019)47 Experimental study (82)PixstoriAs an information sharing platformTo deliver interventionWas approved by the institutional review board. Written consent and media waiver were obtained.Not applicableNot applicableNot applicable
Taubert et al (2018)48 Mixed-method design (88)YouTube, Facebook and TwitterAs an information sharing platformFor promotion, education and trainingNo ethics approval was required. Consent and agreement were obtained.Not applicableNot applicableNot applicable
Akard et al (2015)10 Survey (quantitative study) (79)FacebookAs an information sharing platformTo enhance recruitment opportunitiesWas approved by the institutional review board. Consent was obtained online.Not applicableNot applicableNot applicable
Biswas et al (2021)61 Cross-sectional study (75)Not reportedAs an information sharing platformTo enhance recruitment opportunitiesWas approved by the ethical review committee. Informed consent was obtained.Not applicableNot applicableNot applicable
Beringer et al (2017)60 Qualitative methodology (45)Self-built platformAs an information sharing platformFor promotion, education and trainingNot reportedNot applicableNot applicableNot applicable
  • API, application programming interface.