Survivorship Online: Using Social Media to Promote Engagement Among Young Adult Cancer Patients

Theoretical Background and research questions/hypothesis: Nearly 70,000 young adults between the ages of 15 and 39 are diagnosed with cancer each year. Unlike every other segment of the cancer population, the survival rate for young adults with cancer has not increased since 1975. This population is difficult to engage in health-related information campaigns and clinical trials. Also, it faces a variety of long-term effects, including insurance coverage issues, physical or neurocognitive effects from the original diagnosis and harsh treatments, and secondary malignancies.

Methods and Results (informing the conceptual analysis): This study seeks to find ways to better engage young adults who are dealing with cancer to increase active participation in the health and survivorship process. Using snowball sampling methods, 16 young adults who had completed treatment for cancer within the past 12 months were recruited to participate in open interviews regarding their experience. Data were then analyzed using the three-step coding methods developed by Glaser and Strauss (1967) to tease out prominent themes present in the participants’ responses. The results of this project showed that young adults felt isolated and out of place in the cancer community, particular in healthcare settings. Furthermore, participants reported that their cancer diagnosis had led to isolation from family and friends. Every participant used online resources to research their diagnosis, find ways to cope with treatment and survivorship issues, and connect with other young adults who had been diagnosed with cancer. Further coding revealed that their online communities provided benefits that far exceeded the ability to commiserate with peers.

Conclusions: By actively participating in an online community, the young adults addressed in this study were able to address cancer on their own terms and take control of a situation in which they often had very little efficacy. By subverting common cancer metaphors, using humor to cope with difficult situations, and building a collective repository of tips and guides outside of the mainstream medical community, participants felt they were able to partly define their health situation. Also, the young adults interviewed expressed a strong desire to share the expertise they had gained throughout the treatment process and a responsibility to help other young adults more newly diagnosed with cancer. However, participants bemoaned the difficulty of connecting with other cancer patients and the time commitment and inflexible nature of many existing cancer support programs.

Implications for research and/or practice: This project shows the enormous potential for increasing the engagement of young adults facing long-term health issues using social media. By providing a space for patients to engage online, health centers give individuals an unprecedented amount of control over their disease experience. Using the extended parallel processing model (Witte, 1992), this study shows that enhancing online outlets for expression and community building by health facilities could increase perceptions of efficacy among young adult patients facing long term health issues and result in greater involvement from this hard to reach population.  Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory; strategies for qualitative research. Chicago: Aldine Pub. Co. Witte, K. (1992). Putting the fear back into fear appeal: The extended parallel process model. Communication Monographs, 59, 329-349.