Thin Line between Helpful and Not: Embodied Research on Internet Experiences Among Adolescent and Young Adult Cancer Patients

Background&Purpose. The visual stereotype of today’s adolescents and young adults (AYA) may be that of an iGeneration born with fast-moving fingers on mobile devices, swiping and scrolling in between selfies. However, the plethora of unfiltered content available from the Internet may help or harm still-developing youths. Such access, information, and imagery present unique challenges specific to AYA cancer patients, an understudied demographic relative to their pediatric and older adult counterparts, due to the added psychosocial stressors of transitioning from childhood to adulthood as they cope with life-threatening illness. This study validated and expanded upon the Delphi study, which examined AYAs’ user preferences for cancer information and support to inform product development. Specifically, this study examines AYA cancer patients’ experiences with Internet-based resources, such as social media, to elucidate how online platforms are experienced and how they may be optimized to improve cancer survivorship for this age-defined population.

Methods. Using Gale and colleagues’ framework method for qualitative multi-disciplinary health research, the investigator team of embodied researchers (AYA cancer patients-turned-researchers) conducted semi-structured, in-depth interviews with AYA cancer patients (n=10) diagnosed between ages 15-39 years. Our aim was to validate and expand upon findings from a preceding Delphi study to enhance credibility, whilst sharpening its focus on AYAs’ experiences with Internet-based resources. Interviews were audio recorded, transcribed, and coded using a thematic analysis approach within the framework method, a combined deductive-inductive approach to data analysis that leaves space to discover unexpected aspects of the participants’ experience of the phenomena. To generate themes, researchers identified commonalities and differences within the qualitative data, and indexed codes according to the agreed analytic framework. Furthermore, by fully engaging with personal reflexivity, bracketing, and analytic memos across data collection and analysis, the investigator team elucidated benefits and risks of embodied research.

Results. Findings impart evidence on AYA patients’ distinct needs at the time of cancer diagnosis, use of the Internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing Internet-based information and support. Data analysis revealed contrasting themes of personal empowerment and fear among participants’ descriptions of their personal engagement with the Internet for cancer resources. Empowering uses of the Internet included the potential for credible information, psychosocial support, and resource sharing. Descriptions of fear-inducing consequences of the Internet by AYA cancer patients included accounts of being prompted into excessive negative self-appraisals when using credible health information sites, potential for accepting misinformation during vulnerable periods, as well as secondary traumatic stress due to unwanted exposure to pain or dying.

Conclusions&Implications. In our growing context of telemedicine and Internet reliance, developers of online cancer content should prioritize the nuanced preferences of vulnerable AYA patients, as these efforts optimize Internet-driven connectivity. Future research must investigate a more socioeconomically diverse pool of participants to broaden our understanding of the practical challenges related to AYAs’ online experiences. Such findings could support policy initiatives and practice efforts aimed at democratizing cancer care to promote health equity.

Acknowledgment: Project funded by Teen Cancer America