Palliative Care TikTok: Describing the Landscape and Explaining Social Media Engagement

Abstract

Background:

Although palliative care programs are beneficial to patients and families, most of the public is unfamiliar with and underutilizes palliative services. TikTok, a fast-growing social media platform worldwide, allows users to share short live-recorded videos and could be used to educate the public about palliative care.

Objective:

This study characterized palliative care TikTok videos and determined characteristics associated with higher user engagement metrics (views, likes, comments, and shares).

Methods:

The investigators analyzed the content and engagement metrics of palliative care TikTok videos. Each video was coded for author type (health care professional, patient, caregiver, or other) and demographics, features, and themes. Negative binomial regression analyses identified whether author type and themes were associated with engagement statistics.

Results:

After screening 510 videos, 146 met criteria for analysis. The most prominent author types were health care professionals (55.5%), followed by patients (32.9%) and caregivers (7.5%). Authors were often female (71.2%) and played music (59.5%) while talking (45.9%). Themes were describing personal experiences (47.3%), educating (39.7%), addressing misconceptions (16.4%), responding to questions and comments (14.4%), and raising awareness (11.0%). Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001).

Conclusion:

TikTok provides an interactive platform for patients, professionals, and caregivers to share information and experiences about palliative care, making it potentially valuable for explaining palliative care to the public.

Introduction

Palliative care is on the rise in the United States; however, there are millions of Americans with serious illnesses who are not receiving palliative care but could benefit from it.^1,2 Although many Americans could benefit from the service, the majority of adults have never heard of palliative care and fear it due to a conflation with hospice care and death.³ Educating patient populations and the general public has been shown to work, with some exceptions. Researchers have found that online mediums such as webpages, multimedia, and video-based interventions have mixed efficacy in improving palliative care knowledge and attitudes among seriously ill patients.^4–7 Therefore, examining the dissemination of palliative care information is a necessary step toward ensuring that patients with serious illnesses receive the beneficial services.

Social media could provide an opportunity to impart useful information about palliative care. Platforms such as Facebook, Twitter, and YouTube have been used globally by palliative care health care professionals, researchers, and advocacy organizations to educate the public,⁸ but a new platform called TikTok is on the rise. Founded in 2016, TikTok is a fast-growing social media platform with over 1 billion active users in more than 150 countries and 130 million active users in the United States.^9,10 Users can create and upload short videos (less than or equal to three minutes) with music, special effects, captions, and hashtags (e.g., #palliative). They can view and interact with videos on TikTok's “For You” page, on which TikTok's algorithm populates videos based on levels of user engagement, or they can visit the “Discover page,” where users search for videos using keywords, audio file names, or hashtags.¹¹ Thus far, TikTok has served as a source for health care professionals, patients, and caregivers to consume and disseminate health information on many topics, including dermatology, diabetes, and COVID-19.^12–14

Palliative care social media studies have focused on retrospective analyses of Twitter, YouTube, and Facebook. Organizations have posted educational palliative care videos on YouTube, while Twitter and Facebook mainly allow clinicians, scientists, and organizations to network with one another.^15–18 However, to date, there have not been any studies investigating palliative care videos on TikTok. Given TikTok's growing popularity, widespread reach, and easily accessible videos, it is essential to explore its potential as a novel platform for the dissemination and consumption of palliative care education and support resources among its users.

The present study aimed to characterize palliative care TikTok videos. The secondary aim was to determine whether certain video characteristics were associated with higher levels of user engagement.

Methods

Data collection

From January 1, 2021 to January 4, 2021, the investigators screened TikTok videos that used the term “palliative.” Videos that did not refer to “palliative care” in the caption or verbally by the video author were determined to be unrelated to palliative care and were subsequently excluded. Videos were additionally excluded if they (1) solely focused on hospice care, end-of-life care, or palliative care for non-human animals; (2) were not in English; or (3) were deleted by the author before they could be coded.

Data collected for each video included social media engagement statistics such as the number of likes, comments, shares, and views, in addition to general video information such as the author's name, the date the video was posted, hashtags listed by the author, and the type of video. Other characteristics noted and recorded for each video included music, presentation of statistics, and number of individuals appearing on screen. Data were then collected on author characteristics, including gender, author type (health care professional, patient, caregiver, or other), type of health care professional (if applicable), and the actions performed by the author. Themes were identified before coding and each video was subsequently classified under one or more of those themes.

Statistical analyses

Analyses were performed in SPSS 28.0. Descriptive statistics were examined for all video features. As the variance was greater than the mean and overdispersion was present, negative binomial regression analyses were conducted to determine whether engagement metrics were predicted by (1) author type and (2) video themes. After conducting a goodness of fit test and omnibus test to confirm that the model fit the data well and was statistically significant, we examined each categorical predictor in the models simultaneously. Statistical significance was determined using an alpha level of 0.05.

Results

Descriptive characteristics

A total of 510 videos were screened, and 146 videos met eligibility criteria (Table 1). All eligible videos were found to have been posted between January 2020 and March 2021, with 72 videos being posted in the first quarter of 2021 and 74 videos being posted in all of 2020 (Fig. 1). Most videos were live recordings (95.2%), with one individual appearing on the screen (87.7%), usually talking (45.9%). The most common hashtag appearing in videos was #palliativecare.

FIG. 1.

Palliative care TikTok is an active and growing community.

Table 1.

Descriptive Statistics for Palliative Care TikTok Videos

Variable	n (%)
Video-level characteristics	146 (100.0)
Video author
Health care professional	81 (55.5)
Physician	59 (40.4)
Nurse	13 (8.9)
Unknown/other	9 (6.2)
Patient	48 (32.9)
Caregiver	11 (7.5)
Mother	10 (6.8)
Child	1 (0.7)
Other	6 (4.1)
Video author gender
Female	104 (71.2)
Male	41 (28.1)
Organization	1 (0.7)
Video type
Live recording	139 (95.2)
Slideshow	7 (4.8)
Screenshot	2 (1.4)
Video add-ons
Music played in background	87 (59.5)
Captions on screen	56 (38.4)
Number of people appearing in video
0 individuals	2 (1.4)
1 individual	128 (87.7)
≥2 individuals	8 (5.5)
Action performed by video author
Talking	67 (45.9)
Dancing	23 (15.8)
Lip syncing	13 (8.9)
Making expressions	10 (6.8)
Showing surroundings	6 (4.1)
Hashtags used	768 (100.0)
#palliativecare	98 (12.8)
#fyp	47 (6.2)
#hospice	29 (3.8)
#drtiktokker	21 (2.7)
#chronicillness	20 (2.6)
#nurse	18 (2.3)
#doctor	16 (2.1)
#foryou	15 (2.0)
#tiktokdoctor	11 (1.4)
#tiktokdocs	11 (1.4)

As shown in Table 1, most videos were uploaded by women. Health care professionals appeared most often in videos (55.5%), followed by patients (32.9%), and caregivers (7.5%). Among health care professionals, physicians (40.4%) and nurses (8.9%) posted most. Among caregivers, the vast majority (90.9%) were mothers.

The videos covered at least one of six broad themes: raising awareness, educating, addressing misconceptions, describing personal experiences, responding to questions and comments, and other (Table 2). The greatest number of videos included the “describing experiences” theme and “educating” theme.

Table 2.

Themes Featured in Palliative Care TikTok Videos

Theme	Criteria	Example quotes^a
Describing personal experiences n = 69 (47.3%)	The video portrays the experiences of palliative care health care professionals, patients, or caregivers.	People ask me if it's depressing being a palliative care doctor. It can be sad, but it's also rewarding. I began palliative a while back. We tried new things and switched up some of my prescriptions. Now my side effects are reasonably managed. It's still odd to think that I'm in my 20s and seeing palliative care. Jim has his palliative care team, and they're great for managing nausea and discomfort. He's vigorously beating his illness.
Educating n = 58 (39.7%)	The video seeks to inform about, provide facts about, and increase understanding of palliative care.	How do we define palliative care? It's comprehensive support for all forms of suffering. It's for any individuals with any type of illness that disrupts their quality of life. Palliative care supports emotional, physical, social, and spiritual functioning. Palliative care is life affirming. Death is normal, and it does not try to accelerate or delay it. Palliative care improves quality of life and might extend survival times.
Addressing misconceptions n = 24 (16.4%)	The video is intended to approach and disprove inaccurate conceptions about palliative care.	True or false, is palliative care only relevant to older adults? False. PC can help at all ages. I have seen many pediatric patients and middle-aged adults too. Many people believe palliative care is just about the end of life. It can be, but palliative care can also be used at times when a patient is dealing with challenging concerns or hopes to better control pain.
Responding to questions and comments n = 21 (14.4%)	The video is posted as a reply to another's user comment.	Comment: How do you start palliative care? Response: It was a lot easier than I expected. I just mentioned it to my heart doctor because a few of my other doctors had brought it up. Comment: Thanks Dr. Jones, I just wondered how does the emphasis of palliative care differ from end-of-life care? Response: Great question. Regrettably, many people still mix up palliative care and hospice. In actuality they are much different….”
Raising awareness n = 16 (11.0%)	The video aims to increase knowledge of the existence of palliative care.	Have you heard the WHO includes palliative care on its list of human rights to health? Nonetheless, the lack of awareness means that many eligible people will never get to use palliative care. Why does palliative care matter? Most people with a serious cancer diagnosis overestimate their chances of survival. Many do not know the goals of their treatments. Talking to palliative care can reduce distress among patients and families. Let's start a dialogue. Remember to share, comment, and like.

Note. Categories were not mutually exclusive. Additionally, 8.9% (13/146) of the videos had other themes beyond those listed.

In social media research, it is important to avoid quoting directly as this may negate community norms for privacy. All quotes have been disguised by paraphrasing and replacing non-essential information.

PC, palliative care; WHO, World Health Organization.

Negative binomial regression models

The results of the negative binomial regression models for both author type and themes associated with number of views, likes, comments, and shares are shown in Tables 3 and 4. Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos focused on describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001).

Table 3.

Negative Binomial Regression Using Palliative Care Video Author Type to Predict TikTok Social Media Engagement Metrics

Video author	Number of views		Number of likes		Number of comments		Number of shares
Video author	OR (95% CI)	p	OR (95% CI)	p	OR (95% CI)	p	OR (95% CI)	p
Health care professional	1.03 (0.41–2.59)	0.954	1.18 (0.44–3.15)	0.746	0.53 (0.19–1.50)	0.233	0.25 (0.08–0.74)	0.013
Patient	2.36 (0.91–6.17)	0.078	2.78 (1.01–7.66)	0.049	1.88 (0.65–5.45)	0.245	0.36 (0.12–1.07)	0.066
Caregiver	5.91 (1.80–19.48)	0.003	9.71 (2.88–32.69)	<0.001	1.93 (0.56–6.64)	0.296	0.40 (0.11–1.46)	0.165
Other	—	—	—	—	—	—	—	—

The bold values have p < .05.

Note. ORs indicate the odds relative to the reference category of other authors.

CI, confidence interval; OR, odds ratio.

Table 4.

Negative Binomial Regression Using Palliative Care Video Theme to Predict TikTok Social Media Engagement Metrics

Video theme	Number of views		Number of likes		Number of comments		Number of shares
Video theme	OR (95% CI)	p	OR (95% CI)	p	OR (95% CI)	p	OR (95% CI)	p
Describing personal experiences	3.30 (1.75–6.25)	<0.001	2.66 (1.44–4.93)	0.002	1.51 (0.83–2.72)	0.174	2.72 (1.39–5.32)	0.003
Educating	2.46 (1.34–4.63)	0.005	2.61 (1.43–4.78)	0.002	1.92 (1.11–3.31)	0.019	3.12 (1.64–5.92)	<0.001
Addressing misconceptions	2.64 (1.60–4.35)	<0.001	1.64 (0.98–2.75)	0.059	1.31 (0.76–2.25)	0.331	1.90 (1.14–3.18)	0.015
Responding to questions/comments	0.73 (0.44–1.21)	0.216	0.55 (0.33–0.92)	0.022	0.76 (0.45–1.28)	0.304	0.44 (0.26–0.76)	0.003
Raising awareness	0.48 (0.27–0.85)	0.011	0.51 (0.29–0.89)	0.018	0.70 (0.40–1.23)	0.210	0.54 (0.29–0.99)	0.045
Other	1.19 (0.48–2.90)	0.710	0.81 (0.33–1.96)	0.640	0.80 (0.33–1.97)	0.634	1.07 (0.39–2.94)	0.898

The bold values have p < .05.

Discussion

This investigation has implications for improving public awareness and understanding of palliative care via social media. Health care professionals, patients, and caregivers use palliative care TikTok (Table 1), and use of TikTok for palliative care health communication is on the rise (Fig. 1). We identified common themes in these videos (Table 2). Users engaged actively in viewing these videos. Caregiver videos were more likely to be viewed and liked, perhaps owing to personal connections between video authors and viewers, whereas videos by health care professionals were most likely to be shared, reflecting their authority and expertise. Several of the video themes had high levels of engagement, with those emphasizing discussing personal experiences or educating as most promising. Palliative care articles on Twitter, videos on YouTube, and activity on Facebook have had themes similar to “educating,” but none similar to “describing experiences”; additionally, users on these platforms have largely been comprised of only palliative care professionals and organizations to date.^16–18 These findings can assist palliative care clinicians, scientists, and patients in expanding their communication, health education, and patient advocacy to create and disseminate engaging video content using a novel, fast-growing social media platform.

Findings showed that users engaged actively with palliative care videos and indicate several strategies for increasing the likelihood that videos would be successfully disseminated. Analyses also described what typical palliative care TikTok videos are like, which may help guide health care professionals, patients, and caregivers to the idea of using this platform. Importantly, the identification of video qualities associated with increased user engagement can assist health care professionals, patients, and caregivers in creating TikTok videos that will reach a larger audience of those seeking information about palliative care using this platform.

Our results indicate that video authors should consider focusing on themes of educating and describing one's personal experience to increase user engagement. Based on normative trends, (1) record a live selfie-style video, rather than a formal slideshow, (2) find ways to incorporate music, (3) use captioning, (4) talk without worrying much about incorporating more complex elements such as dance, (5) present alone, and (6) help users to find the videos by using the hashtag #palliativecare. These basics will allow palliative care experts to share their knowledge with the public successfully, and seasoned TikTokkers can experiment with more novel techniques.

Limitations

This study has its limitations. Since we only included English-language videos in our analysis and some eligible videos were deleted by the authors before they were coded, our analysis was restricted to a particular cultural and historic context. Additionally, our analysis of user engagement likely reflects the activity of mostly younger users since TikTok primarily consists of users between the ages of 16 and 34.¹⁰ Finally, the present investigation was designed to summarize the landscape of palliative care TikTok, not evaluate the extent to which various videos improve knowledge. Future investigations could compare TikTok videos with more traditional academic videos in improving understanding of palliative care. Despite these limitations, to our knowledge, this was the first study that examined palliative care on TikTok and serves as the first step in exploring TikTok's potential as a platform for discussing palliative care among health care professionals, patients, caregivers, and the public.

Conclusion

Results of this study show an active and growing community on palliative care TikTok. Caregivers and health care professionals were able to engage users in learning about palliative care while videos that focused on describing personal experiences or educating fostered more social media engagement. TikTok is a novel and promising setting for disseminating information about palliative care to the general public.

Footnotes

Acknowledgments

All authors made substantial contributions to the design, analysis, and interpretation of the data. All authors were involved in drafting, revising, and final approval of the article and meet the specified authorship criteria.

Funding Information

This research was supported by the American Cancer Society (134579-RSG-20-058-01-PCSM).

Author Disclosure Statement

No competing financial interests exist.

References

Dumanovsky

, Augustin

, Rogers

, et al. The growth of palliative care in U.S. hospitals: A status report. J Palliat Med, 2016; 19(1):8–15; doi: 10.1089/jpm.2015.0351

Center to Advance Palliative Care. A state-by-state report card on access to palliative care in our nation's hospitals; 2019. http://reportcared.capc.org [Last accessed: July 21, 2022].

Trivedi

, Peterson

, Ellis

, et al. Awareness of palliative care among a nationally representative sample of U.S. adults. J Palliat Med, 2019; 22(12):1578–1582; doi: 10.1089/jpm.2018.0656

Hoerger

, Perry

, Gramling

, et al. Does educating patients about the Early Palliative Care Study increase preferences for outpatient palliative cancer care? Findings from Project EMPOWER. Health Psychol, 2017; 36(6):538–548; doi: 10.1037/hea0000489

Temel

, Greer

, Muzikansky

, et al. Early palliative care for patients with metastatic non−small-cell lung cancer. N Engl J Med, 2010; 363(8):733–742; doi: 10.1056/NEJMoa1000678

Perry

, Sartor

, Malhotra

, et al. Increasing readiness for early integrated palliative oncology care: Development and initial evaluation of the EMPOWER 2 intervention. J Pain Symptom Manage, 2021; 62(5):987–996; doi: 10.1016/j.jpainsymman.2021.03.027

Kamal

, Wolf

, Nicolla

, et al. Usability of PCforMe in patients with advanced cancer referred to outpatient palliative care: Results of a randomized, active-controlled pilot trial. J Pain Symptom Manage, 2019; 58(3):382–389; doi: 10.1016/j.jpainsymman.2019.05.007

Taubert

, Watts

, Boland

, et al. Palliative social media. BMJ Support Palliat Care, 2014; 4(1):13–18; doi: 10.1136/bmjspcare-2013-000584

Mohsin

TikTok statistics that you need to know in 2020. Oberlo. Available from: https://www.oberlo.com/blog/tiktok-statistics [Last accessed: July 21, 2022].

10.

Doyle

TikTok statistic-Updated July 2022: Wallaroo; 2022. Available from: https://wallaroomedia.com/blog/social-media/tiktok-statistics/ [Last accessed: July 21, 2022].

11.

Zhu

, Xu

, Zhang

, et al. How health communication via Tik Tok makes a difference: A content analysis of Tik Tok accounts run by Chinese Provincial Health Committees. Int J Environ Res Public Health, 2019; 17(1):192; doi: 10.3390/ijerph17010192

12.

Southwick

, Guntuku

, Klinger

, et al. Characterizing COVID-19 content posted to TikTok: Public sentiment and response during the first phase of the COVID-19 pandemic. J Adolesc Health, 2021; 69(2):234–241; doi: 10.1016/j.jadohealth.2021.05.010

13.

Kong

, Song

, Zhao

, et al. TikTok as a health information source: Assessment of the quality of information in diabetes-related videos. J Med Internet Res, 2021; 23(9):e30409; doi: 10.2196/30409

14.

Villa-Ruiz

, Kassamali

, Mazori

, et al. Overview of TikTok's most viewed dermatologic content and assessment of its reliability. J Am Acad Dermatol, 2021; 85(1):273–274; doi: 10.1016/j.jaad.2020.12.028.

15.

Claudio

, Dizon

, October

. Evaluating palliative care resources available to the public using the internet and social media. Am J Hosp Palliat Care, 2018; 35(9):1174–1180; doi: 10.1177/1049909118763800.

16.

Liu

, Cardenas

, Zhu

, et al. YouTube videos as a source of palliative care education: A review. J Palliat Med, 2019; 22(12):1568–1573; doi: 10.1089/jpm.2019.0047.

17.

Padmanabhan

, Ayyaswami

, Prabhu

, et al. The #PalliativeCare conversation on Twitter: An analysis of trends, content, and caregiver perspectives. J Pain Symptom Manage, 2021; 61(3):495.e1–503.e1; doi: 10.13039/501100001772.

18.

Nwosu

, Debattista

, Rooney

, et al. Social media and palliative medicine: A retrospective 2-year analysis of global Twitter data to evaluate the use of technology to communicate about issues at the end of life. BMJ Support Palliat Care, 2015; 5(2):207–212; doi: 10.1136/bmjspcare-2014-000701.