Accepted for/Published in: JMIR Formative Research
Date Submitted: Dec 17, 2021
Date Accepted: Mar 15, 2022
Warning: This is an author submission that is not peer-reviewed or edited.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.
Advance care tweeting: A mixed-methods analysis of online conversations surrounding National Healthcare Decisions Day hashtags on Twitter
ABSTRACT
Background:
Within most Western societies, topics related to death and dying continue to be taboo, and opportunities for presence and engagement during end-of-life that could lead to a good death are avoided as a result. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives, so they may express their goals-of-care if they become too sick to communicate their wishes. One major effort in the United States towards encouraging such challenging discussions is the annual celebration of National Healthcare Decisions Day (NHDD).
Objective:
The present study explored ACP from a socio-cultural perspective, using Twitter as a communication tool.
Methods:
All publicly available tweets published between August 1st 2020 and July 30th 2021 (N = 9,713) were collected and analyzed using the computational, mixed-method Analysis of Topic Model Network (ANTMN) approach.
Results:
Results revealed conversations, driven primarily by laypersons (96% of tweets originated from unverified accounts) surrounded three major themes: importance and promotion, surrounding language, and finally, systemic issues.
Conclusions:
Based on the results, we argue there is a need for awareness of what barriers people may face in engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies, including Medicare reimbursements, and trust among health care professionals. This is incredibly important for clinicians and scholars to be aware of as we strive to re-envision ACP so that people are more comfortable engaging in ACP conversations. In terms of content of Tweets, we argue there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and NHDD hashtags could be harnessed to serve as a connecting point between organizations, physicians, patients and family members, to lay the groundwork for the trajectory towards a good death.
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Copyright
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