Previously submitted to: Journal of Medical Internet Research (no longer under consideration since Sep 10, 2024)
Date Submitted: Nov 18, 2023
Open Peer Review Period: Nov 17, 2023 - Jan 17, 2024
(closed for review but you can still tweet)
NOTE: This is an unreviewed Preprint
Warning: This is a unreviewed preprint (What is a preprint?). Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn (a note "no longer under consideration" will appear above).
Peer review me: Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period (in this case, a "Peer Review Me" button to sign up as reviewer is displayed above). All preprints currently open for review are listed here. Outside of the formal open peer-review period we encourage you to tweet about the preprint.
Citation: Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author).
Final version: If our system detects a final peer-reviewed "version of record" (VoR) published in any journal, a link to that VoR will appear below. Readers are then encourage to cite the VoR instead of this preprint.
Settings: If you are the author, you can login and change the preprint display settings, but the preprint URL/DOI is supposed to be stable and citable, so it should not be removed once posted.
Submit: To post your own preprint, simply submit to any JMIR journal, and choose the appropriate settings to expose your submitted version as preprint.
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Digital Communication at End-of-Life: Exploring Attitudes and Experiences Before and After the End of the COVID-19 Pandemic
ABSTRACT
Background:
End-of-life communication is a complex and sensitive topic that necessitates careful consideration. The advent of digital technology has transformed the landscape of end-of-life communication, offering new possibilities and challenges. From video calls to online memorials, technology has revolutionized how we approach death and dying. However, there is a limited understanding of the attitudes and experiences surrounding digital communication at the end of life, particularly between individuals and their loved ones as existing research mainly focuses on communication between patients and clinicians, overlooking the broader aspects of communication at end of life.
Objective:
This study aims to explore individuals' attitudes and experiences regarding digital communication during end-of-life situations through an interactive installation. The study also includes an examination of changes in people's perceptions and behaviors toward digital communication during times of dying before and towards the end of the COVID 19 pandemic [1]. The research aims to provide insights into the role of technology in facilitating meaningful connections, supporting the grieving process, and supporting end-of-life experiences.
Methods:
In this qualitative study, data on participants' sentiments regarding digital communication during end-of-life situations were collected through an interactive installation "Time Moving", mounted in the exhibit “Dying.exhibits” before (January 2020) and towards the end of the COVID-19 pandemic (January 2023), in Toronto, Canada as part of the DesignTO festival. DesignTO is an annual design festival held in Toronto, Canada organized by a non-profit arts organization dedicated to celebrating design's role in creating a better world [2]. Participants were encouraged to share their thoughts by writing responses on postcards in response to the question: "How do you feel about communicating digitally during times of dying?" Data analysis involved an inductive approach, with a sample size of 80 postcards gathered from 2020 and 51 postcards from 2023.
Results:
Participants had a range of perspectives on digital communication in end-of-life situations. Some found it helpful and appreciated the ability to connect virtually, especially when physical presence was not possible. Others expressed concerns about the performative nature and lack of emotional depth of digital interactions. The findings reveal the complex nature of acceptance, adoption, and the impact of digital communication on end-of-life experiences. There was, however, a pattern which suggests that the Covid-19 pandemic influenced a shift towards increased acceptance of digital communication as a practical option, accompanied by feelings of sadness and resignation. These findings contribute to our understanding of the evolving use and attitudes towards digital communication in end-of-life experiences.
Conclusions:
In conclusion, this study highlights the complex role of digital communication in end-of-life situations and its impact on the evolving nature of these experiences. The results highlight the need for sensitivity towards diverse perspectives in introducing or using digital communication at end of life. The study enhances our understanding of technology's influence on end-of-life communication, considering both the benefits and limitations.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.