PDF(Pubmed)
Abstract：
BACKGROUND: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach.
METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications.
RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed.
CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.
METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications.
RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed.
CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.
摘要：
背景：具有实时内容和广泛用户网络的社交媒体为姑息和临终护理（PEoLC）研究人员提供了更多可能性，他们已经开始将其作为补充研究工具。这篇综述旨在确定社交媒体在PEoLC研究中的用途，并研究该研究方法提出的伦理考虑和数据收集方法。
方法：使用2022年12月之前发布的社交媒体搜索了9个在线数据库中的PEoLC研究。使用主题分析和叙事综合方法对社交媒体应用程序进行分类。
结果：纳入21项研究。16项研究使用社交媒体进行二次分析，5项研究使用社交媒体作为信息共享平台。与社交媒体研究相关的伦理考虑各不相同，而15项研究讨论了伦理考虑，只有6项研究获得伦理批准,5项研究确认参与者同意.在使用社交媒体数据的研究中，他们中的大多数人手动收集社交媒体数据，和其他研究依赖于Twitter应用程序编程接口或第三方分析工具。共有1520329个员额,收集并分析了2008年至2022年与PEoLC相关的325个视频和33篇文章。
结论：社交媒体已成为一种有前途的补充研究工具，在各种应用中具有可行性。然而,我们发现缺乏标准化的伦理处理和数据收集方法，这构成了持续的挑战。我们为希望在未来的PEoLC相关研究中使用社交媒体的研究人员提供了实用的建议，以弥合这些紧迫的差距。
方法：使用2022年12月之前发布的社交媒体搜索了9个在线数据库中的PEoLC研究。使用主题分析和叙事综合方法对社交媒体应用程序进行分类。
结果：纳入21项研究。16项研究使用社交媒体进行二次分析，5项研究使用社交媒体作为信息共享平台。与社交媒体研究相关的伦理考虑各不相同，而15项研究讨论了伦理考虑，只有6项研究获得伦理批准,5项研究确认参与者同意.在使用社交媒体数据的研究中，他们中的大多数人手动收集社交媒体数据，和其他研究依赖于Twitter应用程序编程接口或第三方分析工具。共有1520329个员额,收集并分析了2008年至2022年与PEoLC相关的325个视频和33篇文章。
结论：社交媒体已成为一种有前途的补充研究工具，在各种应用中具有可行性。然而,我们发现缺乏标准化的伦理处理和数据收集方法，这构成了持续的挑战。我们为希望在未来的PEoLC相关研究中使用社交媒体的研究人员提供了实用的建议，以弥合这些紧迫的差距。
