Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Abstract

Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely upon relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

Social Media Perceptions of Legacy-Making: A Qualitative Analysis

“…6,9,18 The goal was to identify emerging themes related to this topic from the social media data, as we and others have done. [6][7][8]11,19 We imported social media users' comments and replies into ATLAS.Ti (Version 8.4.24.0). Two authors (L.L.S.…”

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review

“…Table 2 shows the particular social media strategies used to enhance knowledge user engagement in research priority-setting exercises grouped by platform. Of studies using email as their primary social media platform [ 12 , 16 , 17 , 19 , 23 , 24 , 27 , 29 , 30 , 33 ] study teams emailed messages with embedded research prioritization survey links (including to researchers’ existing mailing lists) and integrated tell a friend tool in emails to prompt recipients to invite colleagues to participate. Facebook-specific methods to engage stakeholders included embedding survey links within Facebook posts, using the platform’s boosting feature (ie, paid advertisements), and hiring a Facebook advertising specialist.…”

“…Twitter-specific methods to engage participation included the use of hashtags within tweets and question-and-answer threads for prospective participants [ 5 , 14 , 15 , 17 - 19 , 25 , 31 ]. In addition, Salmi et al [ 27 ], hosted live chats on Twitter, in which host Twitter accounts tweet about predefined topics with questions during a set period, to which Twitter users respond via tweets and engage in discussions with each other. A web-based forum strategy led to the creation of a space where families and researchers could share ideas on the priority-setting research project [ 31 ].…”

“…Indirect metrics for campaign effectiveness were (1) audience reach (ie, extent to which the survey sample was characteristic of the target population [ 13 - 15 ], number of countries and local communities represented in the sample [ 12 , 21 ], and number of national associations and external organizations contacted [ 12 ]); (2) campaign interaction (ie, number of clicks and impressions on posts [ 14 , 15 , 18 , 23 , 25 , 27 ], frequency of post views [ 26 ], volume of comments left by target stakeholders [ 26 ], number of searches for campaign pages or downloads of resources [ 17 , 18 ], number of bespoke hashtag clicks or uses [ 25 , 27 ], and Google Analytics [ 18 ]); (3) participant satisfaction [ 17 , 28 , 31 ]; and (4) platform-specific methods (ie, number of website views or likes [ 12 , 14 , 15 , 17 - 19 , 21 , 29 ], number of registered participants in an email chain or total number of delivered emails [ 12 , 13 , 16 , 19 , 21 , 29 , 33 ], new followers and likes on Facebook pages [ 14 , 15 , 17 , 18 , 26 ], and Twitter followers gained [ 14 , 15 , 25 ]).…”

“…All included studies (23/23, 100%) successfully gathered research priorities from key stakeholders and knowledge users using social media–based participant recruitment. Cited benefits related to social media use were the capacity to elicit participation from many knowledge users [ 14 , 15 , 17 , 18 , 27 , 31 ], the speed at which research priorities were gathered, the sense of community developed [ 17 , 31 ], peer-support offered to patients and family members [ 17 , 26 , 28 , 31 ] by social media campaigns, and the capacity for dissemination of health-promoting resources from health care professionals to patients. A cited limitation of social media–based methods was that web-only methods may limit the participation of individuals with limited or no access to technology, limited leisure time to engage with social media, and lower socioeconomic status and of older age [ 12 - 15 , 17 ].…”