Engaging with Death Online

Social Media Perceptions of Legacy-Making: A Qualitative Analysis

“…17 Our approach to exploring attitudes surrounding digital legacy systems related to death and dying was informed by Forlizzi and colleagues (human-computer interaction). 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).…”

“…1,2 Recently, digital legacy systems have emerged that aim to preserve memories of loved ones. 6,7,9 At the same Do spend quality time with the individual and not be mesmerized with documenting as the individual will not be desired to be framed as he or she approaches end of life The attempt at capturing everything may cause harm and interfere with the natural grieving process; be cognizant of that Choose just select things to remember; too much and it can become overwhelming The recording of all parts of the individual's life will impede the natural process of life moving forward A balance exists between spending time and preserving memories; a disproportionate focus on the latter may lead to remorse Theme 3: recognize the equal benefits to all who memorialize…”

“…2 However, our findings are in contrast with some digital legacy systems that seek to immortalize the decedent, such as Eterni.me and Eter9. 6 Indeed, the theme of ''live for now to avoid prolonged suffering,'' suggests that the creation of an electronic shrine may have unintended side effects. 6,22 Thus, although legacy-making is a beneficial act, our findings suggest that it must be balanced or treated secondarily to the importance of being in the moment during the end-of-life experience.…”

“…2 Expanding upon the conceptual foundations of legacy-making, several initiatives have pioneered digital approaches in tandem with the growth of digital data. [6][7][8][9] However, limited evidence currently exists on the breadth and depth of what might be part of these systems and who ought to participate. With the advent of digital legacy-making, social media has become an apt platform to assess the nature of the illness experience.…”

From Personal Data to Digital Legacy: Exploring Conflicts in the Sharing, Security and Privacy of Post-mortem Data

“…[21,25,40]). These include specially-designed estate planning services, letters of instruction attached to an individual's last will and testament, software designed specifically for digital legacy management [15] and the use of password managers as a means of directly passing credentials [8]. It has been noted that there are distinctly opposed views in respect to how this ought to be done, particularly regarding preferences towards deletion or towards preservation [26], however in either case there has been little success in designing approaches that are both technologically feasible and sufficiently accessible for the general population to engage with the process.…”