Exploring Web-Based Twitter Conversations Surrounding National Healthcare Decisions Day and Advance Care Planning From a Sociocultural Perspective: Computational Mixed Methods Analysis

• Published in: JMIR formative research Vol. 6; no. 4; p. e35795
• Main Authors: Lattimer, Tahleen A, Tenzek, Kelly E, Ophir, Yotam, Sullivan, Suzanne S
• Format: Journal Article
• Language: English
• Published: Canada JMIR Publications 13.04.2022
• Subjects: Advance directives; Brain cancer; Culture; Death & dying; Health care; Mixed methods research; Original Paper; Physiology; Public health; Social networks; Stigma; Tagging; Vaccines; Verbal communication; United States > US; end of life; good death; National Healthcare Decisions Day; hashtag activism; Twitter; topic modeling; advance care planning; social media
• ISSN: 2561-326X; 2561-326X
• DOI: 10.2196/35795

Within the cultures and societies of the United States, topics related to death and dying continue to be taboo, and as a result, opportunities for presence and engagement during the end of life, which could lead to a good death, are avoided. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives so that they may express their goals of care if they become too sick to communicate their wishes. A major effort in the United States toward encouraging such challenging discussions is the annual celebration of the National Healthcare Decisions Day. This study aimed to explore ACP from a sociocultural perspective by using Twitter as a communication tool. All publicly available tweets published between August 1, 2020, and July 30, 2021 (N=9713) were collected and analyzed using the computational mixed methods Analysis of Topic Model Network approach. The results revealed that conversations driven primarily by laypersons (7107/7410, 95.91% of tweets originated from unverified accounts) surrounded the following three major themes: importance and promotion, surrounding language, and systemic issues. On the basis of the results, we argue that there is a need for awareness of the barriers that people may face when engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies (including Medicare reimbursements), and trust among health care professionals, in the United States. This is incredibly important for clinicians and scholars worldwide to be aware of as we strive to re-envision ACP, so that people are more comfortable engaging in ACP conversations. In terms of the content of tweets, we argue that there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and National Health Care Decision Day hashtags could be harnessed to serve as a connecting point among organizations, physicians, patients, and family members to lay the groundwork for the trajectory toward a good death.