Abstract
Purpose:
Some young adult cancer survivors (YACS; ages 18–39) struggle to incorporate their cancer experiences into their identities. Using stories, or narratives, is a new approach that could help YACS to integrate cancer and their identity. These stories offer opportunities to experience perspectives outside of oneself, which can build validation and self-compassion. However, little is known about whether stories about cancer (i.e., the threat itself) are beneficial.
Method:
YACS completed an online survey about their engagement with cancer storylines in entertainment media narratives (e.g., books, movies, and television shows). They also described their reactions to encountering these storylines in entertainment media.
Results:
Participants (n = 108) were primarily White. Participants who sought cancer storylines reported a more positive impact of cancer on their sense of purpose and identity. Among YACS who had completed treatment, cancer storylines were sought after treatment more than during treatment. In addition, compared with their peers, participants who identified as Black reported greater cancer storyline seeking both during and after treatment. Nearly half of participants (n = 45, 47.4%) described reactions to cancer-related storylines as positive or mixed, primarily owing to feelings of inspiration or validation.
Conclusion:
Consuming cancer storylines can offer some benefits for YACS, especially among those finished with treatment and those who identify as Black. However, not all YACS responded positively, so future research should investigate which YACS could benefit most from cancer-related storylines. Nonetheless, entertainment media narratives represent a novel approach to supporting YACS’ integration of cancer into their identity.
About one-third of young adult cancer survivors (YACS; ages 18–39) face psychological distress, anxiety, and depression; these outcomes may be caused by YACS’ difficulty in integrating the cancer experience into their identities.1–3 Many YACS reject the cancer survivor label, expressing a desire to leave cancer in the past.4,5 However, most YACS also acknowledge that cancer has changed their perspective, prompting the need to integrate cancer into their identity.6–9 How YACS navigate this process can have long-lasting effects; however, there is little consensus on which activities promote beneficial outcomes.10–12 Existing interventions have been few, with most focusing on short-term goal setting rather than identity incorporation.10,13,14 In addition, most are designed as multiday, in-person group sessions, and they are often characterized by low engagement and high attrition, suggesting that current tools to assist YACS are both inaccessible and do not resonate in meaningful ways.5,10,15 These resource and logistical issues suggest that new approaches to engaging YACS in identity integration are needed.
Consumption of stories, or narratives, is one such new approach. Narratives depict a main character who wants something but is challenged by another force.16,17 The story of how the main character attempts to overcome the opposing force becomes the plot, or storyline, consisting of a beginning, a middle, and an end.16,17 Turning to stories during a time of identity threat, like cancer, is common for a variety of reasons, such as a need to regain a sense of control or a need for validation.18–25 Through the story’s characters, individuals can experience different perspectives, prompting cognitive reappraisals of their own situations; these reappraisals can help individuals acknowledge difficult emotions and achieve greater self-compassion.23,24,26–31
Although experiencing an identity threat may cause people to turn to stories, it is unclear whether stories about that identity threat are helpful.19–21,23 Extant research with cancer survivors of all ages has found that creating written or video narratives about their individual cancer experiences can help survivors process the illness, especially once “survival mode” has passed.32–36 In addition, interpersonal storytelling about the cancer experience, especially among survivors, family caregivers and health care practitioners, can help individuals engage in sense-making.37–39
Yet, whether the benefits of creating stories extend to consuming them is unknown. Entertainment media narratives, such as television shows, movies, and books that are created for mass consumption, often contain storylines about cancer, and the effect of encountering these identity-threat-based storylines on YACS is unclear. Existing research has found that YACS are divided; some find cancer-based plots to be helpful while some find these plots to be distressing. 31 Though prior research has demonstrated that consuming narratives in which the main character is similar increased engagement with the story and message recall, especially among marginalized populations, YACS and others often report a lack of realism in cancer stories produced for a mass audience.31,40–44 Yet, entertainment media narratives have the advantage of being easily accessible and consumable whenever and wherever YACS are, which may overcome issues of access and resource limitations seen with existing interventions.
Because of these logistical advantages and their theoretical potential, we wanted to further investigate narrative consumption as a means by which to encourage cancer-related emotional processing. Our goal was to understand YACS’ experience with cancer storylines in entertainment media narratives. Thus, the present, exploratory study proposes the following research questions: How frequently do YACS report seeking out cancer storylines in entertainment media narratives (a) during and (b) after treatment? Does cancer-storyline seeking relate to the impact of cancer on sense of purpose and life goals among YACS? What are the demographic characteristics of YACS who seek out cancer storylines? How do YACS characterize their reactions to cancer storylines and (b) why?
Methods and Measures
This cross-sectional survey was part of a larger study to investigate YACS’ experience with entertainment media narratives. The Institutional Review Board of the University of North Carolina at Chapel Hill approved the study (IRB #22–2700).
Procedure
Participants were recruited through Meta’s social media platforms, an academic medical center research portal, and Prolific. Eligibility criteria included a diagnosis of any cancer between the ages of 15 and 39 and a current age between 18 and 39.
Recruitment via social media and the medical center portal happened concurrently in January 2023. A total of 379 people clicked on the study link. Aligned with best practices, tools such as reCAPTCHA filters, and open-ended responses were also embedded throughout the survey for participants recruited from both social media and the medical center portal; compensation was advertised as a raffle to win one of 80 gift cards worth $50.45–47 Response decreased dramatically after the first week, and we stopped recruitment on February 1, 2023, after receiving no new responses in the preceding few days. All responses that passed the bot screening (Supplementary Table S1) were compensated.
Prolific recruitment ran from February 7 to 24, 2023. Like Amazon’s MTurk, Prolific is an Internet-based, crowdsourced data collection platform. We chose Prolific because empirical research has suggested that Prolific’s data quality is higher than MTurk and Cloud Research, and we wanted to increase our sample size quickly within our budget constraints.48,49 Prolific users who were both between the ages of 18 and 39 and were listed within the cancer filter were invited to complete a short screener; screening potential participants in a separate screening survey to confirm their eligibility was a requirement of the Prolific platform. About 80% of those screened were eligible and invited to participate. All participants who completed the screener received $0.50; those who completed the full survey also received $5.00. The Prolific survey was identical to the one given to social media participants, apart from the fraud-deterrent questions.
Measures
In addition to information about their cancer diagnosis and treatment, participants reported the race and gender with which they most identified.
Cancer media consumption
Participants reported whether they had purposefully avoided cancer-related storylines in movies, television shows, or books during their cancer treatment. This was a single item, and response options ranged from strongly disagree, coded as 1, to strongly agree, coded as 5. Because the item was negatively worded, extra details were given to the participant to make responding easier. That is, the sentence “I purposefully
Higher scores on both items indicated greater cancer-storyline avoidance. However, given the additional wording provided to participants and to make the interpretability of the storyline items more intuitive, both items were recoded so that higher scores indicated greater seeking of cancer-related storylines.
Reactions to cancer media
Participants were also asked to describe their reaction to encountering a cancer-related storyline. This open-ended question asked, “In your own words, how did you respond when you watched a movie or TV show or read a book that featured a cancer storyline? Why?”
Impact of cancer on sense of purpose and identity
Finally, the impact of cancer on participants’ lives was assessed with nine items from the Impact of Cancer AYA (IOC-AYA).50,51 Items included “I feel that I can achieve my goals in life” and “Good things have come out of having had cancer.” Response options ranged from strongly disagree, coded as 1, to strongly agree, coded as 5. Higher scores reflected higher positive impact of cancer on participants’ lives (α = 0.86).
Data cleaning and analysis
Responses that failed the bot protocol were deleted (Supplementary Table S1). Two incomplete, duplicate Prolific responses were also removed.45–47
Quantitative responses were analyzed using SPSS 28. Paired samples and independent samples t-tests were used to answer the research questions. We also conducted sensitivity tests; only the unadjusted results are reported here because the effects held.
Qualitative data were analyzed using ATLAS.ti 23 and a theoretical thematic analysis approach.52,53 Prior to analysis, the research team developed a priori codes that aligned with information gathered in earlier semi-structured interviews with YACS on their use of entertainment media narratives. 31 Owing to this prior work and the wording of our present item, we developed five possible codes to describe the valence of participants’ reactions to entertainment media narratives: positive, negative, mixed, neutral, or absent. The mixed code was applied if the participant referenced both a positive and negative response; the neutral code indicated if the participant had no reaction to a cancer storyline; and the absent code was applied if the participant reported that they had not seen anything with a cancer storyline since diagnosis.
Then, two research team members, M.K.R.C. and C.Y., independently double coded each response according to the codebook. Initial intercoder agreement was high (Krippendorff’s α = 0.91), and disagreements between the two coders were resolved through discussion between those two team members.
Results
Most participants (n = 108) were recruited from Prolific (n = 68; 63.0%) and identified as White (n = 72; 62.1%; Table 1). Exactly half the sample identified as female (n = 54; 50%). On average, participants were nearly 4 years removed from the completion of treatment (Mmonths = 45.1, SDmonths = 56.5).
Differences in Demographics by Dichotomized Self-Reported Racial Identification
Note.
Statistically significant difference between the dichotomized race groups [Current age: t(67.75) = −5.8, p < 0.001; age at diagnosis t(106) = −2.0, p = 0.022].
Participants could check all that applied; total does not equal 100%.
Statistically significant difference between the dichotomized race groups (χ2 tests, ps < 0.05).
Statistically significant difference between the dichotomized race groups, t(106) = −4.2, p < 0.001.
There were demographic differences between participants by recruitment source. However, since nearly all participants who identified as Black or African American were recruited from social media (n = 28; 96.6%), we dichotomized participants by racial identification (i.e., those who self-identified as Black or African American and those who self-identified as another race). Table 1 details significant differences by racial identification.
Cancer storyline use during and after treatment (RQs 1–3)
Participants were generally ambivalent toward seeking cancer storylines in entertainment narratives, both during (M = 3.1, SD = 1.3) and after treatment (M = 3.3, SD = 1.2; see Table 2). However, participants who had completed treatment (n = 88) reported greater seeking of cancer storylines after treatment than during treatment, per a paired-samples t-test, t(87) = −2.7, p = 0.004, Hedges’ gav = 1.3. 54 Seeking cancer storylines both during and after treatment was positively related to a more positive impact of cancer on sense of purpose and identity (rduring = 0.289, p = 0.003; rafter = 0.326, p = 0.002).
Differences in Impact of Cancer and Cancer Storyline Seeking Behavior by Self-Reported Racial Identification
Note.
Controlling for age, gender, and months since treatment completion.
Ms and SDs reported are reverse coded.
Correlated with IOC, r = 0.289, p < 0.01.
Correlated with IOC, r = 0.326, p < 0.01.
The bolded values are significant at the p < .05 value.
In addition, compared with their peers, participants who identified as Black reported significantly greater cancer storyline seeking both during cancer treatment [t(104) = 4.0, p < 0.001, Hedges gs = 0.9] and after cancer treatment [t(86) = 5.1, p < 0.001, Hedges gs = 1.3].
Reactions to cancer storylines (RQ4)
The overall valence of reactions could be determined from only 89.6% of the open-ended responses (n = 95). Of those responses, most participants wrote about two sentences, although there was considerable variation in word count (M = 34.3, SD = 28.6; Min = 3, Max = 169).
In response to cancer-related storylines in entertainment media narratives, approximately one-third of participants reported a positive reaction (n = 32; 33.7%), while a little more than one-third of participants reported a negative reaction (n = 35; 36.8%). A handful of participants experienced a mixed (n = 13; 13.7%) or neutral reaction (n = 12; 12.6%), while a few had no reaction (n = 3; 3.6%).
Positive responses
Participants who described positive reactions to cancer-related storylines reported that they found inspiration within the narratives. For example, one participant (White, female, 34; Cervical cancer) wrote that she felt “more hope for myself and my future…” Participants also used words such as encouraged, optimistic, and motivated to describe their reactions (see Table 3). Another participant (Other race, male, 23; Testicular cancer) elaborated:
Example Quotes by Response Valence (n = 95)
“I really appreciated how it depicted the struggles and challenges of living with cancer, but also showed the strength and resilience of the human spirit. It was uplifting to see the characters find hope and love in the face of adversity, and it reminded me of my own journey. It was a powerful reminder that even in the darkest of times, there is always a reason to keep fighting and to find joy in life.”
In other words, participants found reminders of positive emotions within entertainment media narratives that depict cancer. These storylines served as reminders that life's joys were not only still accessible but they were also still worthwhile despite cancer.
Negative responses
Participants who reported a negative reaction to a cancer storyline described feelings of anger, fear, and sadness as they encountered reminders of their cancer experience. Participants described frustration with the way in which cancer was depicted. For example, one participant (White, female, 20; Thyroid cancer) wrote: “In TV and movies, once it’s [cancer] gone, boom, cured. No chronic illness or long-term effects, just gone. It’s so inaccurate and tone deaf.” Other participants described these storylines using phrases such as “unrealistic garbage” and “romanticized and misrepresented” (see Table 3).
Participants also described feelings of sadness from the reminder of their own experience; these feelings were amplified by the storyline’s consideration of cancer-related death. For example, one participant (White, female, 37, Cervical cancer) wrote, “When a character survives, I’m sad because I may not and when they die, I’m sad because that may be my fate.”
The storyline’s focus on mortality evoked fear and anxiety within our participants. Participants reported reactions such as panic attacks and nausea when encountering mentions of cancer, and many participants avoided the fear by avoiding the narrative. One participant (White, female, 39; Other cancer) wrote: “One time I started a movie without knowing there was a cancer patient in it. I turned it off immediately when I came across the cancer. I can’t face it yet.” In other words, participants who experienced only negative reactions saw the worst parts of their experiences through the cancer storylines.
Mixed responses
Participants who reported mixed reactions described an experience that combined both positive and negative reactions. Participants’ responses occurred either simultaneously or in sequential order. Notably, if the reactions occurred in sequential order, the negative feelings were always experienced first, then the positive feelings. For example, one participant (Asian/White, female, 24; Hodgkin’s lymphoma) wrote:
“At first, I hated it. I wanted to avoid watching something that reminded me of what I was experiencing. Then I started enjoying it. Watching someone else be angry made me feel validated. Hearing about the struggles with treatment made me feel less alone.”
Thus, like those who reported only negative responses, participants who reported a mixed response initially felt anger, fear, and sadness at the reminder of cancer. On the other hand, unlike participants who experienced only a positive reaction, participants who described a mixed response found the narrative’s ability to provide validation, not the narrative’s ability to inspire, to be the key benefit of a cancer storyline.
On the other hand, participants who experienced positive and negative responses simultaneously were able to hold the anger, fear, and sadness from their negative response alongside the hope found in their positive response. Both appeared on equal footing within participants’ responses (Table 3).
Discussion
In this cross-sectional survey, we found a positive association between YACS’ seeking of cancer-related storylines and impact of cancer on sense of purpose and identity. More than half of our participants described an overall positive or mixed reaction to cancer-related storylines in entertainment media narratives; however, a substantial minority reported only a negative reaction.
Our finding that seeking cancer-related storylines is associated with a positive impact of cancer among YACS is promising. The association between storyline-seeking and impact of cancer was stronger for stories sought after completing treatment, and participants who had finished their primary cancer treatment also reported greater seeking of cancer storylines in entertainment media narratives after finishing treatment, as opposed to during. Theoretically, our finding suggests that stories may be offering YACS an outlet to process and integrate their cancer experience into their identity during a period of increased emotional distress following completion of treatment.56–58 However, given the correlational nature of the data presented here, we must acknowledge the possibility that YACS may simply find it easier to engage with these cancer storylines once they are no longer experiencing cancer day-to-day (i.e., “survival mode”).
Participants who identified as Black or African American reported greater seeking of cancer-related storylines than their peers. The reason behind this association is unclear. A possible explanation is that our YACS who identified as Black are searching for information about their illness. Cancer survivors of all ages who identify as Black often report greater post-treatment information needs than their peers, including information about survivorship.59,60 The majority of our Black participants were early-term survivors (i.e., they had finished treatment between 0 and 36 months prior to the survey), which suggests support for this explanation. However, prior research has demonstrated that healthy Black women generally prefer to engage with cancer stories that feature characters who look like them, and the people depicted in cancer-related storylines are usually White.40–43,61,62 Furthermore, prior narrative effects research has produced mixed results of the effectiveness of demographic-matching media stimuli to the recipient.63–65 Given this, an alternative explanation is that YACS who identify as Black find stories that involve people who look differently less threatening; in other words, having some psychological distance may help these YACS better process their experience.43,61,62,66,67 Future research should investigate how—and more importantly why—these storylines may uniquely benefit YACS who identify as Black.
In their open-ended responses, nearly half of participants described a positive or mixed reaction to encountering a cancer storyline. Importantly, participants who experienced mixed responses always described the experience of a negative response turning into a positive one, rather than the other way around. This is an important finding, as previous work on cancer survivorship narratives has found that redemption narratives—that is negative episodes turning into positive ones—are indicative of better psychological health.33,68,69 In addition, these qualitative descriptions lend support to the positive association we found between cancer storyline seeking and positive impact of cancer on sense of purpose and identity. One explanation is that YACS may find validation through cancer-related storylines in entertainment media narratives, such as movies, television shows, and books. 31 Alternatively, these stories may provide an opportunity for YACS to revisit their cancer experience in a way that prompts emotional processing, which has been associated with increased resilience and posttraumatic growth.70–72 It is likely that this additional processing contributes to the restructuring of YACS’ own internal narratives about their cancer experience; encouraging individuals of all ages to restructure negative or challenging events is thought to be one of the key components of cognitive processing therapy, as well as narrative interventions for cancer survivors.32,33,35,69,73–75 These possibilities both support the premise that entertainment media use generally—and cancer storylines specifically—assist YACS in integrating the cancer experience into their identities and could be a future interventional tool for this population.
Notably, nearly 40% of participants reported only negative reactions, which suggests that consuming cancer-related storylines does not benefit all YACS, and, in some cases, may be harmful. Participants in our study wrote about feelings of anger, sadness, and fear because of cancer storylines, which echoes previous findings on how some narratives can be psychologically harmful.31,76,77 Future research should investigate who might not benefit from cancer storyline exposure.
Some limitations of this study must be taken into consideration. First, data were collected at a single time point, which precludes our ability to make assertions about causality, and the appropriateness of comparing correlational data has been debated. 78 In addition, our survey used a convenience sample and relied on self-reported data; self-selection biases and limited recall may have influenced the outcomes reported here, especially given that our sample looked different based on the recruitment source. Furthermore, there are still many unknowns regarding how these cancer-related storylines were—and could be—presented. For example, is there a preferred medium (e.g., movies versus books) among YACS? Should these narratives feature YAs with cancer, as opposed to older adults or children? The answers to these questions would offer nuance to the results presented here.
Despite these limitations, this study contributes to the growing literature on the benefits of entertainment media narratives in psychosocial oncology.31,72 Engaging YACS with movies, television shows, and books has benefits in relation to the impact of cancer on their sense of purpose and goals and identity. Future research should further explore these relationships, as well as how best to integrate this potential into clinical recommendations.
Authors’ Contributions
M.K.R.C.: conceptualization; formal analysis; funding acquisition; investigation; writing—original draft; writing—review and editing. A.J.L., F.D.C., M.L.C., C.B., and E.K.: conceptualization; validation; writing—original draft; and writing—review and editing. C.Y.: formal analysis; writing—original draft; and writing—review and editing.
Author Disclosure Statement
The authors have no conflicts of interest to report.
Footnotes
Funding Information
This work was supported in part by the Margaret Blanchard Dissertation Award and the Minnie S. and Eli A. Rubinstein Research Award, both granted by the Hussman School of Journalism and Media at the University of North Carolina Chapel Hill. The content is solely the responsibility of the author and does not represent the official views of the University of North Carolina.
References
Supplementary Material
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