Influence of making a video cancer narrative in adolescents and young adults on factors impacting self-efficacy
Article information
Abstract
Adolescent and young adult (AYA) oncology patients often struggle with self-management, leading to poor quality of life and disease outcomes. Interventions that influence self-management skills, particularly self-efficacy, are needed. A growing body of research has suggested engaging with digital narratives can influence health outcomes. This study explored the impacts of a digital narrative on health attitudes and intended health-related behaviors in AYA oncology patients. A mixed methods approach was used to determine if verbalizing content related to health and resiliency impacted AYAs’ self-reported intentions for future health self-management and perceptions of healthcare providers. Youth (N=24) aged 12-18 years created video narratives about their cancer experience and then completed a questionnaire with items addressing self-management and perceptions of medical providers. Narratives were scored for levels of healthcare-related content and linguistic qualities reflecting resilience. Associations between content scores and questionnaire responses were examined via regression. Discussion of one’s health was positively associated with intent to improve health behavior (t = 2.36, p < .05). One linguistic quality reflecting resilience, narrator connectedness, was positively associated with changes in perceptions of providers (t = 2.25, p < .05). Clinicians may consider encouraging digital storytelling as a tool for AYAs to facilitate the development of motivation to manage their health
Introduction
Adolescence and young adulthood are times for developing independence, forging peer relationships, and defining one’s goals and values. A cancer diagnosis disrupts this developmental process, leading to unique concerns for adolescent and young adult (AYA) patients. This delayed maturity, which combines aspects of neurocognitive and psychological development, plays a key role in selfmanagement, such that low levels of maturity may hinder the development of self-management behaviors (e.g., treatment adherence, distress coping, lifestyle changes; Herts et al., 2017; Kleinke & Classen, 2018; Psihogios et al., 2020; Williams et al., 2002). As a result, AYAs with cancer are at increased risk for low quality of life and long-term health complications (McCarthy et al., 2016; C. A. McLaughlin et al., 2019; Sodergren et al., 2018). Improving self-efficacy and related influencing factors can promote self-management and adherence, therefore mitigating long-term negative medical and psychosocial sequelae of cancer (Kleinke & Classen, 2018; Psihogios et al., 2020). Selfefficacy for disease management and factors associated with it are modifiable predictors of self-management behavior (Herts et al., 2017). Digital interventions are an increasingly popular way to target AYA health behavior (Devine et al., 2018). In particular, prior research highlights that when AYAs narrate videos of their cancer story, they reflect on factors associated with self-efficacy, namely beliefs about cancer and its impact, social support, and relationships with medical providers (Laing et al., 2017; M. McLaughlin et al., 2012; Pereira et al., 2020). Interventions, including digital ones, that improve self-management often target patient empowerment (including beliefs around self-efficacy) and peer support (Psihogios, Ahmed, et al., 2022; Psihogios, Lane-Fall, et al., 2022; Pugh et al., 2016; Valle et al., 2013). Improving these self-management influencers has been known to improve important health behaviors, such as medication adherence and physical activity (Foster & Fenlon, 2011; Herts et al., 2017; Pugh et al., 2016; Valle et al., 2013). Digital storytelling (narratives as told on film) has a growing body of literature that may support its utility as a tool to influence self-efficacy and related health management. This study aims to contribute to the literature specifically in the world of AYA oncology by analyzing AYA cancer narratives, created in the style of YouTube films, for thematic and linguistic content that might influence health management factors. We hope that this work will offer initial evidence for further work and related model development within the broader fields of health media and psychology.
Literature Review
The Importance of Self-Efficacy in Self-Management in AYA Oncology Patients
Adherence models find their origin within the theory of planned behavior (Ajzen, 1991), with the premise that improving factors related to patient attitudes towards their care leads to improvement in self-management (behaviors related to management of one’s illness) and thus adherence (Figure 1; Beals & Godoy, 2013). The definition of patient attitudes is broad and encompasses several areas including self-efficacy (a patient’s confidence in their ability to engage in behavior necessary for health improvement) and factors that influence it. Self-efficacy directly predicts selfmanagement outcomes (Austin et al., 2019). Thus, using interventions that target facilitators of self-efficacy for disease management in AYA oncology patients, such as positive perceptions of one’s cancer experience, social support, disclosure (talking to others about cancer), knowledge about care needs, and strong rapport with healthcare providers, is important (Austin et al., 2019; Herts et al., 2017; Miller et al., 2017).
Adherence Model
Researchers are beginning to investigate how digital narrative interventions for patients may be conceptualized to promote change in factors related to self-efficacy and thus improve patients’ self-management behaviors (Lucas et al., 2021).
The Influence of Relationships on Self-Efficacy in AYAs
Social relationships are widely accepted as a key factor in all aspects of AYA oncology care and is especially important for influencing self-efficacy and health outcomes (Herts et al., 2017; Tremolada et al., 2016). AYAs are strongly influenced by social encouragement and relationships with peers may motivate them to engage in healthy behavior during and after treatment (Jones et al., 2011). As relationships with peers change through treatment, health related social support AYAs receive may decrease, especially given AYAs may not have many peers who can model the health self-efficacy needed to manage their disease (Jones et al., 2011). When barriers to social engagement exist, barriers also exist to disease self-management behaviors that are critical for mitigating the risk of long-term negative health outcomes (Lee et al., 2019; Psihogios et al., 2020). However, increasingly over the last decade, AYAs have been receiving social support via social media (e.g., Twitter hashtags, online support groups, video diaries), including access to health information, peer support, and the broader AYA cancer community via popular platforms such as TikTok, Instagram, and YouTube (Eng et al., 2020; Perales et al., 2016). Lower perceived social support offline is associated with greater engagement in online platforms for survivors (M. McLaughlin et al., 2012), indicating that online support networks may supplement an AYA’s insufficient offline support as well as improve their access to important peer interactions involved in their maturation process (Jones et al., 2011; Nelson & Nelson, 2010; Williams et al., 2002)
Relationships with healthcare providers may also negatively impact self-efficacy and relatedly self-management. Compared to older patients, AYAs often perceive that their oncology clinicians do not include them in treatment planning and are less direct in their communication, leading to medical ambiguity about diagnoses, treatment options, and side effects (Kleinke & Classen, 2018; Pereira et al., 2020). Further, AYAs who perceive negative characteristics about clinicians (e.g., clinician is dismissive, dishonest, or impersonal), and who feel poor rapport (from lack of trust/emotional safety, fears of negative judgment, or providers breaching confidentiality) are less likely to communicate needs with clinicians, possibly limiting knowledge of their illness and in turn their ability to successfully manage symptoms (Austin et al., 2019; C. A. McLaughlin et al., 2019; Smith et al., 2020). Clinicians also report communication challenges with AYAs and a lack of trust in AYAs’ adherence to medical recommendations (Kleinke & Classen, 2018; Smith et al., 2020). Conversely, strong patient-clinician rapport allows AYAs to feel cared about, respected, and confident in expressing their needs and medical preferences, contributing to increased self-efficacy and adherence (Austin et al., 2019; Kleinke & Classen, 2018; C. A. McLaughlin et al., 2019; Phillips & Haase, 2018; Smith et al., 2020). While AYAs are not using social media to communicate with their clinicians directly, they are beginning to use it to learn about their conditions and empower themselves via increased knowledge and ability to communicate, and thus be more active in decision making during clinical visits (Benetoli et al., 2019). Despite the growing body of literature indicating that positive patient-clinician relationships is associated with greater self-efficacy and consequent adherence and disease self-management (Eton et al., 2017), few techniques exist to improve patient-clinician communication and strengthen these critical relationships.
The Role of Narratives and Digital Storytelling in AYAs
One promising strategy for improving AYA self-efficacy is engaging with digital video narratives that involve storytelling with classic elements including characters, conflict, and a resolution, to communicate a sequence of events. Although storytelling has been a common cultural practice for centuries, given current digital trends, a growing body of research has investigated digital storytelling as a therapeutic approach that promotes AYA personal growth and positive emotional and physical health behaviors, similar to how expressive writing paradigms were used in the past. A host of literature exists detailing the influence of patient stories in improving cancer patient education and thus health behavior due to the sense of shared experience storytellers and viewers feel (Lucas et al., 2021; Pérez et al., 2014; Saita & Acquati, 2019). AYAs are often reluctant to engage in traditional psychotherapeutic models that foster development of personal growth and/or medical adherence due to negative perceptions of clinicians, worry about others’ perceptions of their engagement in psychotherapy, challenges to beginning something new, and unwillingness to share emotional problems with clinicians (Eton et al., 2017). Innovative techniques to circumvent the perceived failings of these traditional methods of psychosocial intervention are warranted (Laing et al., 2017; Lau et al., 2020; C. A. McLaughlin et al., 2019).
AYAs who told their cancer narrative through digital media reported increased self-esteem and self-efficacy compared to AYAs who received standard psychosocial care only (Laing et al., 2017; Saita & Acquati, 2019). AYAs who made therapeutic music videos while undergoing stem cell transplantation perceived greater support from family and peers compared to controls (Robb et al., 2014). Young people endorse engaging with digital stories as an enjoyable experience that decreases the social isolation associated with their illness (Laing et al., 2017; Pereira, 2017; Pereira et al., 2020; Robb et al., 2014). Further, AYAs experience improvements in predictors of self-efficacy, namely resilience, positive perceptions of cancer’s impacts, and quality of social and clinician relationships when they make video narratives (Kuntz et al., 2019; Laing et al., 2017; Pereira, 2017; Pereira et al., 2020). AYAs who narrate their cancer stories find meaning through their illness, demonstrating a reframing of negative experiences throughout their story’s entirety (Kuntz et al., 2019; Laing et al., 2017; Pereira et al., 2017, 2020; Robb et al., 2014). This reframing and contextualization of cancer within one’s life is a form of resilience that has also been stated by AYAs after making digital stories (Pereira, 2017). Previous work on linguistic content of written narratives indicates narrators who tell stories in a coherent, detailed, and personal manner have lower distress and therefore greater resilient qualities than narrators who tell incoherent, impersonal stories (Tausczik & Pennebaker, 2010). When AYAs create digital cancer narratives using linguistic content indicative of greater resilience, they see greater benefits from narrating their stories, just as with written narratives (Pereira, 2017).
Within digital stories, AYAs reflect on losing and gaining friends, observing emotional reactions and coping of their family members, and experiencing frustration with clinicians (Pereira et al., 2020). Given that social support, including positive relationships with clinicians, is associated with self-efficacy for self-management (Austin et al., 2019; Herts et al., 2017; C. A. McLaughlin et al., 2019), making digital narratives presents an opportunity to reflect upon and improve perceptions of these relationships and increase willingness to engage in self-care (Kleinke & Classen, 2018; Psihogios et al., 2020). Taken together, it follows that the opportunity to reflect upon one’s cancer history through engagement with a digital story may allow AYAs to cultivate positive perceptions of their cancer experience and relationship changes that may serve to increase self-efficacy, leading to better management of their own health. We therefore propose a model (Figure 2) of possible causal pathways by which making digital stories may improve self-efficacy in AYAs with cancer.
Conceptual model of causal pathways
Current Study
Although studies in AYA oncology have examined strategies to enhance meaning-making and positive perceptions of cancer, few studies have linked these reflective processes and the resulting resilience that AYAs may develop to health self-management and the factors that predict self-management (Austin et al., 2019; Miller et al., 2017). Given that digital storytelling in general is a method easily used and increasingly preferred to writing and other online methods of narrative expression by the current generation of youth and young adults (Montag et al., 2021; Odgers & Jensen, 2020), studying novel aspects of health-related digital media may have important ramifications for digital storytelling as a clinical tool for AYAs in the future. For example, one method of analysis used in narrative and clinical health literature, the Linguistic Inquiry and Word Count program (LIWC; Tausczik & Pennebaker, 2010), may have novel applications in the digital health world. Therefore, the present study used a laboratory-style mixed methods approach to examine specific thematic and linguistic content of video narratives made by AYAs with cancer to identify if narrative content had an impact on AYAs’ views of their providers and their intentions for future health self-management. It was hypothesized that AYAs who were more reflective about specific health content and who demonstrated resilient linguistic qualities within their narrative would see a greater impact on their likelihood to change relationships with providers and desire to improve self-management of health behaviors. These analyses, therefore, may identify signals that inform future analyses to further study the model of potential causal pathways of creation of a video narrative on improvement of self-efficacy, and ultimately enhancement of self-management, as proposed in Figure 2.
Methods
This study was approved by the New York Medical College IRB as the lead site for this study (Protocol L11,676). Approval to recruit was also obtained at Children’s Hospital of Philadelphia, Children’s Hospital of Orange County, and Stanford Children’s Hospital. The authors have not pre-registered this research with an analysis plan.
Participants & Recruitment
Participants were recruited from four pediatric academic medical centers as part of a larger study that included healthy teen controls in addition to patients in- and off-treatment of AYA cancer (Pereira, 2017). For the purpose of this analysis, participants were included if they were on active treatment for a cancer diagnosis received between the ages of 11 to 18 years, had not graduated from high school, and were able to speak and understand English. Participants with substantial cognitive impairment due to treatment, as measured by the Cognitive-Log (Novack, 2004), were excluded.
Participants were primarily recruited by study staff (the first author, a doctoral level pediatric psychologist with experience in digital storytelling (DS) research in health psychology, and psychology undergraduate research assistants trained to administer the procedure outlined below) at each of the medical centers via face-to-face interactions, word of mouth, or phone calls. Study staff who collected data did not have prior relationships to participants. All participants received a $10 gift card for participating.
Procedure
Following informed assent/consent and brief cognitive assessment to determine ability to participate, participants completed demographics and measures as detailed below. After these assessments, participants were provided with a prompt asking them to tell the story of their cancer experience on film (beginning with diagnosis and ending with where they were at the time of the recording). Staff answered any questions participants had about the storytelling process, and then left the room, allowing participants to privately create their narrative with a camcorder. Participants were able to choose how they were represented on camera, with the option to remain hidden from view or allowing their face or body to be on camera. Video lengths varied from approximately 2 to 30 minutes with an average of 11 minutes. The rationale for the lack of time restriction was to ensure participants would feel free to tell their story with as few or as many words as they believed were appropriate. Finally, participants completed a post-video impressions questionnaire, described below, and were debriefed. The audio content of each video narrative was then transcribed and analyzed for thematic and linguistic content. To protect participant privacy and confidentiality and potential risk (e.g., cyberbullying) related to posting the video online, participants were not given a copy of their recorded narrative. However, participants were encouraged after debriefing to create another video on their own if they wished.
Measures
Analyses of Narratives
Audio content of each narrative was first transcribed, then scored using a thematic codebook and a linguistic analysis program (LIWC, see below). Each transcript was given scores indicating levels of each theme and linguistic quality within the narrative, with higher scores indicating greater presence of the theme or quality.
Thematic Coding. Transcripts were scored by the first author and two research assistants to measure thematic content of the narratives. A codebook was developed prior to data collection to highlight themes frequently discussed by AYAs in the context of narratives about their experiences with cancer (see cited works for further information around codebook development; (Pereira et al., 2017, 2020). Themes included topics around healthcare, social roles, identity development, academic/occupational functioning, and emotional distress. Each theme was scored on a scale of 0-3 according to the depth and complexity with which a participant discussed it. Higher scores indicated increased reflection on the theme. Codes relevant to this set of analyses and descriptions of code meanings can be found in Table 1. Interrater reliability was (82% and discrepancies amongst the three coders were discussed throughout the coding process to ensure full final agreement.
Codebook Themes Used in Analyses
Resilient Qualities of the Narratives. Transcripts were also scored using the Linguistic Inquiry and Word Count program (LIWC; Tausczik & Pennebaker, 2010) for linguistic content related to resiliency. LIWC is a wellknown and validated program for linguistic analysis of narratives, including cancer narratives (Ma et al., 2017; Verberne et al., 2019). Narrators who tell their stories in a detailed, coherent, and personal (i.e., about themselves) experience less distress and increased resilience compared to those who tell brief, incoherent stories that do not center around themselves (Tausczik & Pennebaker, 2010). Thus, narratives received scores in each of four categories: narrator connectedness, narrative complexity, temporal coherence, and causal coherence. See Table 2 for details on these constructs. For each category, a higher score generated by LIWC indicated a greater level of that resilient quality within the narrative.
Linguistic resilient qualities of the narrative
Demographic Questionnaire
A demographic questionnaire assessed for illness details (e.g., diagnosis, treatment modalities) and social media history (number of social media accounts), including participants’ exposure to cancer narratives and if they considered making or had made their own narrative. One item asked how often participants expressed their feelings about cancer. These items were rated on a scale of 1-5, with higher scores indicating higher familiarity with digital cancer narratives and more frequent emotional expression about their cancer experience.
Delis-Kaplan Executive Function System (D-KEFS)
Participants’ verbal fluency was assessed using D-KEFS (Delis et al., 2001) so that verbal skills could be controlled for given the large age range among study participants. D-KEFS Verbal Fluency subscale is a reliable (in our study, Cronbach’s α=.80) and valid measure to assess verbal skills and is commonly used in pediatric oncology patients (Gendron et al., 2020).
Post-Video Impressions Questionnaire (PVIQ)
After recording, participants completed a PVIQ (Pereira, 2017) detailing their experiences making the film and perceived benefits of doing so. Each of the 28 items in this measure were rated on a 5-point Likert scale to indicate level of agreement (Strong Disagree to Strongly Agree) with each statement. Items assessed participants’ perceptions of the impacts of making a video about them and on others, including perceptions of how family/peers and healthcare professionals might react if they watched the video. One item measured change in participants’ view of their healthcare team (“Making this video changed the way I think about my relationships with my healthcare team”), with higher scores indicating greater belief that making a video would change a participant’s view of their providers. Another item measured willingness to care for themselves following making a video (“After making this video I plan on taking better care of myself”); higher scores indicated greater belief that making a video would motivate a participant to improve their self-management. Internal reliability of the full self-report questionnaire was high in the current sample (Cronbach’s α=.90). However, for the purpose of this analyses, only a small subset of items was used.
Analyses Plan
Utilizing a multi-methods data set led to a two-step data analysis process. See Figure 3 for a conceptual model outlining this process. First, qualitative data (transcripts of the video testimonials) were analyzed using the two coding systems as described above (thematic and linguistic content). Next, four sets of regression analyses were conducted to examine whether health-related thematic content scores or linguistic resilient qualities scores were associated with each of the two PVIQ items that explored impacts of making one’s video narrative on the participants’ (1) view of their healthcare providers and (2) desire to improve self-management of health behaviors. Additionally, post hoc analyses were conducted to examine the influences of developmentally important aspects of AYA life (specifically social roles and identity development scores within the thematic codebook) on the PVIQ items.
Process map of analyses plan
In each of these analyses, the scores representing developmental influences on linguistics and level of agreement with a provider-related statement were controlled for to limit the impacts of potentially confounding variables on results. Specifically, analyses controlled for participants’ verbal skills (as measured by the DKEFS verbal fluency measure) and their level of agreement with the statement that a medical provider may watch their narrative and therefore seek to change their care of AYA patients. A p value of <.05 was set as the significance level for all analyses.
Results
Recruitment resulted in 24 participants who met criteria with an even split between male and female genders. One participant was recruited but did not participate due to severe side effects of chemotherapy. Half of the patients (n = 12) were Hispanic with representation across multiple ethnicities including participants identifying as mixed race (n = 2). Just more than half of the participants had been diagnosed with a hematologic cancer (Leukemia or Lymphoma, n = 15), 7 patients had been diagnosed with a solid tumor, and 2 patients had been diagnosed with a Central Nervous System (CNS) cancer. The average age at diagnosis was 14 years old and the average age of the participant filming was 15 years old with a range of 12 to 18 years old (See Table 3).
Participant demographics (N=24)
On average, participants reported a relatively high frequency level sharing emotions about cancer (3.8/5) and moderate to low familiarity/experience with digital cancer narratives made by themselves or other AYA oncology patients (1.8/5 and 1.5/5, respectively). Thus, the research team felt the quality of the digital narratives shared would be true to the participants’ experiences and not influenced by outside sources. It was determined data saturation was met following previous analysis showing consistent themes and no new codes emerging during this analysis (Pereira et al., 2020)
Main Analyses
Views of providers
A significant relationship was found between narrator connectedness (β = .63, t = 2.25, p < .05) and change in AYAs’ view of their relationship with their health providers. This result suggests that the more a patient’s narrative focused on themselves, the more their views of relationships with providers changed. No significant relationships were found between healthcare content scores and impacts of making a video on provider relationships. However, a negative relationship was approaching significance between diagnosis process scores and impact on provider relationships (β = -.46, t = -1.95, p = .07). This negative association suggests that the less an AYA discussed their diagnosis process, the more their view of their medical team changed. See Table 4 for complete results.
Main and posthoc analyses for impacts of narrative content on aspects of health management
Desire to improve self-management of health behaviors
Resilient qualities did not significantly predict the degree to which participants considered taking better care of themselves after making a video. One significant relationship was found between healthcare content within a narrative and desire to take better care of oneself. AYAs whose narratives scored higher on the view of health theme were more likely to indicate a desire to take better care of themselves on the PVIQ (β = .79, t = 2.36, p < .05).
Posthoc Analyses
No significant relationships were found between developmentally important aspects of AYA life (social roles and identity development) and changes in view of relationships with providers. However, AYAs whose narratives scored higher on the social roles theme were significantly more likely to report a higher desire to take better care of themselves (β = .52, t = 2.25, p < .05).
Discussion
The only significant topic discussed in AYAs’ digital narratives that predicted health related outcomes, as measured by the PVIQ, was discussing the view of one’s health. The more in depth an AYA reflected on their health, the more likely they were to consider taking better care of themselves. This association is a logical conclusion if patients understood themselves to need better self-care at the end of their film. Analyses exploring resilient linguistic content of the narrative that is suggestive of healthy coping and/or high amounts of personal reflection in narrators, found that the more a narrator focused on their own cancer story (as opposed to the experiences of close others), the more likely they were to see changes in their view of their healthcare team. Interestingly, a negative relationship was seen between discussing the diagnosis process and view of one’s healthcare team, suggesting patients were more likely to consider having a different view of their healthcare team when they discussed their diagnosis process with less depth. Previous thematic coding of these narratives found AYAs discussed frustration with their medical team, specifically around the diagnosis process, which resulted in feelings of being misunderstood (Pereira et al., 2020). A primary goal of research on storytelling in healthcare settings is to use narratives as a clinical tool to improve patient emotional and health related quality of life outcomes (De Vecchi et al., 2016; Gucciardi et al., 2016; Johnson & Alderson, 2008). Thus, addressing an area potentially fraught with frustration towards one’s healthcare team would be a highly desirable psychotherapeutic activity when seeking patient-provider relationship improvements--if it can be followed by provision of appropriate emotional support including education around patient self-advocacy. Given AYAs’ proclivity towards media-based storytelling, updating the expressive writing paradigm to an intervention that incorporates media may be a possible way to encourage participation in a group of patients who have a difficult time engaging in traditional psychotherapeutic methods (Laing et al., 2017; Lau et al., 2020; C. A. McLaughlin et al., 2019; Montag et al., 2021).
Post hoc analyses found that more in-depth discussion around social roles resulted in greater impact on desire to improve self-management of health behaviors. This result is consistent with previous literature cited suggesting that social relationships play a crucial role in coping with the effects of cancer treatment and influence overall HRQOL in AYA oncology patients (Barakat et al., 2016; Jones et al., 2011; Pereira et al., 2020). As with other narrative based interventions, the ability to reflect on life experiences can highlight one’s personal needs and allow for identification of positive aspects of one’s life (Laing et al., 2017; McAdams, 2018; Peckham et al., 2016; Zamora et al., 2017). Although AYAs with cancer often experience altered psychosocial development trajectories compared to healthy peers, the ability to reflect on one’s struggles and personal growth, such as through digital narratives, may facilitate maturation (Anthony et al., 2019; Zamora et al., 2017). This reflection may promote the self-efficacy and personal autonomy necessary for transition from pediatric to adult healthcare (Reed-Knight et al., 2014). These results demonstrate that because AYAs may be considering important aspects of their life on film, they may thus be motivated to seek appropriate medical care and focus on treatment/recovery. As previously noted, online methods of socialization are easier to access for AYAs in cancer treatment and there exists a potential of positive support opportunities with social media is used effectively. It has already been shown that video-based patient education materials that highlight shared patient characteristics impact medical care positively, but increasing our understanding of why specific aspects of DS are so enticing to youth and how to use DS and other forms of media based narratives effectively to influence health is also important to consider (Pérez et al., 2014).
Implications
Analyses suggested there are a number of different factors in DS that can influence an AYA oncology patient’s relationship with their health. Previous literature around narrative expression and digital story telling have suggested narratives can be used as an adjunct to traditional psychotherapy (De Vecchi et al., 2016; Johnson & Alderson, 2008). Thus, it appears digital storytelling may be another form of expression that can be used by clinicians to influence factors related to self-management. The ability to talk in depth about one’s own health as well as considerations around their relationships with close others appear to be wake-up calls for AYA oncology patients to better care for themselves. Interestingly, many storytelling interventions for disease self-management are group-based and occur over multiple sessions and may therefore be prohibitively costly and challenging to implement (Gucciardi et al., 2016). Creation of digital narratives is a novel and timely strategy that can help AYAs with cancer manage their health while potentially connecting with peers, and therefore improve their overall physical and mental well-being. Health communication researchers are already tapping into targeted patient narratives to teach patients and influence specific desired health behaviors (Gucciardi et al., 2016; Pérez et al., 2014), utilizing DS to influence broader healthcare perceptions may be a next step. Relatedly, this study begins to provide evidence for the conceptual model proposed (Figure 2) and supports a need for further research to see how this model may be utilized by researchers and clinicians alike. Lastly, in the age of digital health, AYAs are already drawn to social media and digital interventions as a generation that has grown up using technology for social connection and learning (Barakat et al., 2016; Nelson & Nelson, 2010). When combined with the pre-existing need for isolation during cancer treatment and the distancing needs that arose from the COVID pandemic, digital storytelling may be a much-needed resource for AYAs with limited opportunities to express themselves to others. Psychosocial clinicians may consider encouraging technologically - and/or creatively inclined AYAs to develop digital narratives to connect with others, cope with distress, and therefore enhance motivation for self-care.
Study Limitations
This study has several strengths including the use of an accessible storytelling medium; however, results should be considered in light of some limitations. Participants who volunteered for the study may have been more self-aware than patients who chose not to participate, therefore limiting the generalizability of this technique in patients with less insight. The study design also followed a more “laboratory-style” setting to control for the safety of participants, which further limits generalizability to an online setting. Other characteristics of the study participant or related to the testing environment (e.g., filming in a hospital room vs. an exam room) may have also impacted content and thus outcomes. While the study was well powered for the analyses, the overall sample size was small and may have impacted ability to detect significant associations between variables of interest (e.g., impact of discussing the diagnosis process on view of relationships with providers, current emotional functioning). The design did not include longitudinal assessment of future behavior and beliefs. Without true pre- and post-video measures, as well as follow-up measures several months post-video, it remains unclear the degree to which AYAs’ attitudes change as a result of making a video narrative. Future research may consider coding health variables differently by focusing on length of time or frequency of mention of thematic content to determine if in-depth discussion is a necessary component of video narratives in order to influence AYA health variables. Future research may also consider focusing DS towards specific health related discussions (rather than a general overview of one’s cancer experience) or other developmentally significant topics (such as relationships, one’s new identity as a cancer patient, etc.) to bring about health related behavior/attitude change.
Future Directions
This research explores the utility of DS as a clinical intervention in AYA Oncology patients. The application of a bench (Social Psychology) to beside (Clinical Psychology) model in an area of media psychology, highlights the opportunities of technology usage in the clinical arena. Using a prompt very similar to those used in expressive writing paradigms, our study adapted this model to videos to reflect the experience AYAs have making films for virtual platforms such as YouTube or Tiktok. Our work, as well as the work of others, have preliminarily shown the promise of using online and/or digital methods of storytelling as having clinical utility in areas related to social conflict and skills development, personal reflection and post traumatic growth, improved attitudes about medical experiences and engagement in medical care, ability to receive increased access to peer support, among other topics (Boniel-Nissim & Barak, 2013; De Vecchi et al., 2016; Gucciardi et al., 2016; Johnson & Alderson, 2008; Laing et al., 2017; Ma et al., 2017; M. McLaughlin et al., 2012; Miura & Yamashita, 2007; Pereira et al., 2017; Pérez et al., 2014; Robb et al., 2014; Saita & Acquati, 2019; Song et al., 2012; Tosone et al., 2005; Zamora et al., 2017). However, as pointed out by Odgers and Jensen (2020), while there is promising work to suggest AYAs can benefit from engaging with social media and story-based peer support online, how to increase positive interactions of digital usage in this group is still largely missing from the literature. Additionally, few formal clinical trials exist to support this method of intervention over others. Thus, following a similar model to Pennebaker and his expressive-writing colleagues, will benefit moving DS into the forefront of possibility as a clinical intervention. Relatedly, studying how this medium is effective via social media will be particularly beneficial to both bench and beside researchers looking to understand potentially unique active ingredients involved in digital storytelling including but not limited to the complex relationship of sharing widely for the public vs. a variety of privacy control settings given the clear importance of social functioning in our findings.
For AYAs in particular, social components of DS online appear to be important. The current work, therefore, echoes other researchers in calling for research examining what aspects of this media are particularly salient to AYAs (Montag et al., 2021). This is especially true when studying the shared experience aspects readily available to AYA oncology patients in the online setting (as opposed to the stark and isolating hospital experience) as this will support more effective development of clinical tools. While there has been work identifying telling and viewing personal stories with a positive, redemptive arc lead to a number of personal gains for the narrator, literature is also emerging to suggest that similar qualities for those engaging with narratives impact others behavior—including health promotion (Fitzgerald, Green, et al., 2020; Fitzgerald, Paravati, et al., 2020; McAdams & Guo, 2015). Digital stories also offer the opportunity for AYAs to gather information via online peer support about illness and treatment that they may not have previously been comfortable receiving from an oncology clinician (Phillips & Haase, 2018; Saita & Acquati, 2019; Smith et al., 2020). These findings are particularly important given online peer-based outlets appear to be a primary resource of information for AYA oncology patients. Finding a way to capitalize on this informational function of digital stories for creators and viewers in an emotionally safe and medically accurate way, may provide important opportunities for AYA patients to express themselves, connect with others, and learn about their illness in the process (Perales et al., 2016; Radovic et al., 2018). Thus, research that builds on the potential of a DS intervention to influence medical outcomes (e.g. specific aspects of self-efficacy, specific areas of medical care, etc.) in an isolated group looking to connect peers will also be beneficial.
Conclusions
AYA oncology patients are often described as difficult to treat due to a number of age specific factors, including physiological differences, psychosocial issues, and difficulty with adherence (Kleinke & Classen, 2018; Perez et al., 2020; Psihogios et al., 2020; Rytting et al., 2017). Interventions focusing on increasing one’s ability for self-efficacy may hold promise in improving self-management and health outcomes. The present study suggests there are different factors in DS that can influence an AYA oncology patient’s relationship with their health and contributes to a number of fields (digital health, health communication, health psychology, etc.). Utilizing novel digital interventions that appeal to AYAs and offer opportunities to address their unique developmental and psychosocial needs offers an important and increasingly evidence based modality of intervention (Devine et al., 2018; Psihogios, Lane-Fall, et al., 2022). Therefore, if research is conducted to understand the role and dissect the active ingredients of DS, clinicians may be able to harness DS as a tool to improve AYAs’ self-management of their illness and overall quality of life.