Abstract
Over a half million children are living with cancer in the United States. Social media platforms offer unique opportunities for cancer communication by public health organizations as well as health care providers, scientists, patients, and caregivers. Given the dearth of research on childhood cancer communication, the present study aimed to examine the nature of tweets on the social media platform X (formerly Twitter) that used the hashtag #childhoodcancer, the types of these tweets that attracted the most retweets, the types of users tweeting about childhood cancer (e.g., individuals, health care professionals), and the nature of tweets made by the different types of users. We performed a content analysis of tweets we captured on X via NCapture in October and December 2022. Of the 3217 tweets captured, we randomly sampled 1000 eligible tweets and manually double-coded them. Interrater agreement was 83% (κ = 0.75). Results revealed six themes in the tweets, including fundraising (21.2%), advocacy (20.2%), motivational (17.5%), educational (15.3%), science (12.8%), and shout-outs (12.1%). Motivational, advocacy, and science tweets attracted more retweets than fundraising tweets and shout-outs (p < 0.001). Individuals (i.e., patients, caregivers, and advocates tweeting on their own behalf) and nonprofit organizations made a majority of the tweets at 41.5% and 38.6%, respectively, followed by health care professionals (8.7%), academic and/or medical centers (4.2%), and for-profit companies (3.5%). Childhood cancer communication on X is dominated by individuals doing advocacy and fundraising. X may provide important opportunities for public health messaging and science communication about childhood cancer.
Introduction
In 2024, an estimated 15,100 children and adolescents will be diagnosed with cancer in the United States, joining over 500,000 living with childhood cancer (Siegel et al., 2023). Due to advances in treatment and participation in clinical trials, 85% of children and adolescents with cancer now survive 5 years or more compared with 58% in the mid-1970s. 1 Cancer in children is markedly different than cancer in adults in terms of incidence, causes, treatment, and survival. Moreover, the acute and long-term physical and psychosocial effects of being treated for a childhood cancer are profound and distinct,2,3 often prompting individuals to seek support and information from various sources, including social media platforms.
Social media platforms, such as X (formerly Twitter), offer a digital space for individuals to connect, access information and resources, share experiences, and raise awareness around health issues, 4 including cancer. 5 X has estimated 360 million active users worldwide, with the largest number of users in the United States at 105 million. 6 Users post short micro-blogs or tweets to share information, express opinions, or engage with others. Within the context of cancer, studies examining who uses X and other social media platforms have mostly been confined to adults with cancer who are seeking or sharing information, 7 family members of those with cancer looking for support, 8 oncology providers for medical education, 9 and advocacy groups for fundraising or educational dissemination. 10 Less known is the role of social media, specifically X, within the context of childhood cancer. Two studies using sentiment analysis of tweets about childhood cancer found generally positive sentiment 11 and that the content of tweets centered around increasing awareness, personal experiences, research, policy, and treatment. 12 Little is known though, about what type of content gets the most dissemination and who is tweeting the different types of content, as tweets are not likely coming from patients because X requires users to be at least 13 years.
Examining the childhood cancer-related content on X and by whom has the potential to offer important insights into concerns and topics that could inform research agendas, health policy decisions, or the development of interventions to address unmet needs of this population. More broadly, understanding the childhood cancer discourse may offer insights into the evolving dynamics of digital activism and support in cancer at other developmental stages. To better understand the digital discourse about childhood cancer, we examined (1) the nature of tweets about childhood cancer from those using the most popular hashtag on the subject, #childhoodcancer, 11 (2) the types of childhood cancer tweets that get the most dissemination as defined by retweets, (3) the types of users tweeting about childhood cancer (e.g., individuals, health care professionals), and (4) the nature of tweets by the different types of users.
Materials and Methods
We performed a conventional content analysis of publicly posted tweets that used the hashtag #childhoodcancer. We used the NCapture add-on for Chrome (QSR International, Melbourne, Australia) to extract tweets made between October and December 2022. Of the 3217 tweets captured, we randomly sampled 1000 eligible tweets as in previous studies. 13 We excluded and replaced tweets that were not in English or were duplicates, advertisements, or pornography, or from accounts that became private, deleted, or suspended during the coding process. Human subjects review was not necessary because we analyzed publicly available data, which does not meet the definition of human subject research.
Analytic plan
The investigative team-built codebooks for themes upon review of a subset of 50 tweets. The team then coded four training sets of 25 tweets, which led to additional refinements of the codebook. Once the codebook was finalized, two coders (C.C., A.N.) independently coded all 1000 tweets such that all tweets were double coded. Coders met to discuss discrepancies to reach consensus, and if consensus could not be reached, the discrepancies were presented to the investigative team for discussion. Consensus was reached for 100% of tweets. The type of user was single coded into the following: individual users, health care professionals, research or medical centers, nonprofit organization or for-profit company.
Interrater agreement among coders was 83% (κ = 0.75). We calculated the frequency of each tweet category and user types, and then we examined the types of tweets made by each user type. Finally, we compared tweet categories in number of retweets using a Kruskal–Wallis test with paired comparisons to determine which type of tweets was most disseminated. Analyses were conducted using SPSS.
Results
A total of 3217 tweets were captured in the sampling window. The 1000 tweets that were randomly selected and met criteria were made by 454 unique accounts. A total of six themes emerged, with nine tweets being classified as “other” because they were unrelated to the six themes, and they did not reflect a cohesive theme (Table 1). The theme that reflected the highest proportion of tweets (21.2%, n = 212) was “fundraising,” which were tweets that solicited donations (financial or otherwise), promoted fundraising events, or thanked donors for their donations to childhood cancer-related causes. The theme with the next highest proportion of tweets (20.2%, n = 202) was “advocacy,” which included any tweets that spread awareness about childhood cancer, including the sharing of statistics about cancer prevalence, advocating for policy or other types of action relating to childhood cancer, promoting awareness-raising events, or celebrating a month devoted to raising awareness (e.g., childhood cancer month). The theme that reflected the next highest proportion of tweets (17.5%, n = 175) was “motivational,” which included tweets that were meant to support, motivate, encourage, or empathize with people affected by childhood cancer. The next theme reflected 15.3% of tweets (n = 153) and was deemed “educational,” which included tweets that disseminated public-, patient-, and/or caregiver-facing education, information, tips/strategies, and/or support groups and other resources for patients and parents. Finally, the two themes with the fewest tweets were “‘science’ (12.8%, n = 128) and shout outs” (12.1%, n = 121). “Science” tweets were those that shared research papers, content, or advertising from a scientific conference, scientific findings, or information about scientific training opportunities. “Shout outs” were defined as tweets in which the user thanked, congratulated, and/or honored individuals, health care professionals, or organizations for their efforts in supporting the cause of childhood cancer.
Tweet Categories, Retweets, and Examples of Tweets
Tweets were paraphrased to prevent them from being searchable.
User Types of #ChildhoodCancer Tweets (n = 454 Unique Users)
#ChildhoodCancer Tweet Type by User Type a
excluding those in “other” category.
Retweets
After omitting the “other” tweets, the Kruskal–Wallis test comparing theme categories on retweets received was significant, Χ2 (5, N = 988) = 28.88, p < 0.001; see Table 1). Pairwise comparisons revealed that motivational tweets got significantly more retweets than both shoutouts (p < .001) and fundraising tweets (p = 0.002); advocacy tweets got significantly more retweets than both fundraising tweets (p = 0.013) and shoutouts (p = 0.004); and science-related tweets got more retweets than fundraising tweets (p < 0.001), educational tweets (p < 0.001), and shoutouts (p < 0.001).
Users
Individual users (i.e., people tweeting in their personal capacity) made the largest proportion of tweets (41.5%, n = 415), the majority of which were motivational (32.8%, n = 126) and advocacy (31%, n = 119), followed by fundraising (19.3%, n = 74), shout-outs (7%, n = 27), educational (5.5%, n = 21), science (3.1%, n = 12), and other (1.3%, n = 5; Table 2.; Table 3.). The next largest proportion of tweets (38.6%, n = 386 of tweets) were made by nonprofit organizations (e.g., American Childhood Cancer Organization, Free Bird, CanKids KidsCan). Among those, 27.2% (n = 105) were fundraising, 26.6% (n = 103) were educational materials, 15.5% (n = 60) were shout-outs, 13.4% (n = 52) were advocacy, 11.3% (n = 44) were science-related, 5% (n = 21) were motivational, and 0.2% (n = 1) were other. Health care professionals made 8.7% (n = 87) of the tweets, the majority of which (39%, n = 34) were science-related, followed by shout-outs (22.9%, n = 20), advocacy (13.7%, n = 12), motivational (11.5%, n = 10), educational (6.9%, n = 6), fundraising (4.6%, n = 4), and other (1.1%, n = 1). Medical and/or academic research centers made 4.2% (n = 42) of tweets, many of which were educational (26.2%, n = 11), followed by science (23.8%, n = 10), fundraising (16.7%, n = 7), shout-outs (14.3%, n = 6), advocacy (11.2%, n = 5), motivational (4.7%, n = 2), and other (2.3%, n = 1). The next largest proportion of tweets (3.5%, n = 35) were made by for-profit companies (e.g., CURE Today, Cancer Care Parcel), of which 34.3% (n = 12) were fundraising, 20% (n = 7) were educational, 20% (n = 7) were science, 14.2% (n = 5) were advocacy, 8.6% (n = 3) were motivational, and 2.8% (n = 1) were shout-outs. Only 19 tweets (1.9%) were from governmental agencies, and the majority of those were science-related (73.7%, n = 14), with the remainder being shout-outs (21%, n = 4) and advocacy (5.2%, n = 1). Finally, the smallest proportion of tweets was from scientific journals (0.5%, n = 5), and all of them were science-related (100%, n = 5). A small number of tweets were from accounts classified as other or unknown (1.1%, n = 11), and 27.2% (n = 3) were fundraising, 18.1% (n = 2) were advocacy, 18.1% (n = 2) were shout-outs, 9% (n = 1) were motivational, 9% (n = 1) were educational, 9% (n = 1) were science-related, and 9% (n = 1) were other.
Discussion
This study is one of the few to examine the content of tweets, the dissemination of retweets, and the types of users tweeting about childhood cancer. Our findings from a random sample of 1000 tweets from October to December 2022 show the most prevalent tweets about childhood cancer overall focused on fundraising, followed by advocacy and motivational support, with specific topics varying by user. Individuals tweeting in their personal capacity made up the largest proportion of tweets, followed by non-profit agencies and health care professionals. Interestingly, motivational, advocacy, and science-related tweets were retweeted more often than fundraising and shout-out tweets, providing important information about the dissemination potential of childhood cancer communication on X. These findings offer unique insight into the digital discourse about childhood cancer and potential areas for future research, clinical practice, and health policy.
Our findings regarding the most prevalent type of tweets align with a recently published sentiment analysis study of pediatric cancer tweets, conducted during the COVID-9 pandemic, that found raising awareness, sharing personal stories, and disseminating research findings or federal policy related to childhood cancer were the most prevalent tweets (Lau, et al., 2024). However, our findings add to this knowledge by examining the type of tweets by user. The most common theme among individual users was motivational (32.8%), followed by advocacy (31%). Not surprising, health care professionals primarily focused on science-related tweets (39%), while nonprofit organizations tweets were related to fundraising (27.2%) and education (26.6%). This information can be used by childhood cancer researchers, health policy stakeholders, and clinicians to understand the type of content to be expected by different X users. For example, individual users tend to focus on motivational tweets that are generally aimed at seeking or providing support, which may reflect an unmet need in this group—an important area for future research and clinician awareness. Furthermore, our findings that health care professionals' tweets are mostly science-related may offer insights into using X for science communication to reach a wider audience of childhood cancer health care professionals and the public. Public health organizations have widely adopted social media platforms, including X, for communicating health campaigns. 14 However, it is unclear how health care professionals and organizations utilize social media platforms to disseminate information or promote awareness of childhood cancer. 15 While not surprising that nonprofit organizations tend to focus on fundraising and educational tweets, advocacy tweets only accounted for 13.4% of nonprofit organizations overall tweets. Childhood Cancer Awareness month is September, which may be when they focused their efforts on raising awareness about childhood cancer.
Limitations of this work include the lack of demographic information on X users and that many tweets about childhood cancer may not have used the hashtag #childhoodcancer. Further, the tweets were pulled between October and December, which may not represent any possible seasonal variation in discussions on this topic. Also, we did not allow tweets to be coded in more than one category; thus, percentages of some themes may be underestimated. Finally, the hashtag #childhoodcancer turned up in 3217 tweets in this 2-month period which is low relative to a study that used the X API to extract childhood cancer tweets and produced over 6500 per month. 12 Direct access to the X API at the time of that study retrieved 100% of tweets using a specific hashtag, whereas NCapture only retrieves a proportion of those tweets.
Examining the digital discourse about childhood cancer in real time can be used in novel ways by different stakeholders to better understand prevailing issues being discussed and/or potential opportunities for public health campaigns and dissemination strategies.
Footnotes
Authors’ Contributions
S.P. and K.B. produced the study idea, supervised coding, and drafted the article. S.P. performed the data analyses. C.C., J.F., C.P., and A.N. coded the data and provided substantive input on the article.
Author Disclosures Statement
No competing financial interests exist.
Funding Information
S.P. is supported by K24HL124366.
