Abstract
BackgroundStudies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience.MethodsWe identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes.ResultsOverall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth.DiscussionWe observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation.ConclusionOur findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy.
Highlights
IntroductionIn 2016 there were an estimated 15.5 million cancer survivors and that number is expected to double by 2050 due to improvements in screening and treatment.[1, 2]
In 2016 there were an estimated 15.5 million cancer survivors and that number is expected to double by 2050 due to improvements in screening and treatment.[1, 2]As a point of departure, a keystone report on cancer survivorship by the Institute of Medicine outlined a variety of issues facing cancer survivors and recommendations on how to address those issues.[1]
We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018
Summary
In 2016 there were an estimated 15.5 million cancer survivors and that number is expected to double by 2050 due to improvements in screening and treatment.[1, 2]. Research has lagged in exploring, let alone addressing, the complex care needs of this growing population. In part, this gap can be attributed to the focus on treatment and prevention in cancer research, which does not accommodate the ambiguous sick role of the cancer survivor,[7,8] who has completed treatment and for whom prevention is framed in terms of recurrence. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience
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