Decentralizing Knowledge and Democratizing Cancer Supportive Care: Young Adult Cancer Survivors’ Experiences in Cancer-Related Social Media Activities

Background and Purpose: Young adult (YA) cancer patients are individuals who were diagnosed with cancer between the ages of 18 and 39. These survivors often face higher levels of social isolation and mental health issues due to their unique developmental stage and lack of age-appropriate psychosocial care and information. They rely heavily on online information and services, and social media is a crucial source of additional social support besides their family, friends and healthcare team. However, there is a lack of research exploring their own experiences in cancer-related social media activities. Therefore, this qualitative study aimed to gather a deeper understanding of YAs’ experiences using social media platforms for cancer-related activities.

Methods: This study utilized interpretive phenomenological analysis to analyze YA cancer survivors’ experiences. Purposeful sampling was employed to ensure the participants meet the eligibility criteria. Snowball sampling was also used when successfully recruiting any minority YA cancer survivors. Twelve YA cancer survivors participated in semi-structured interviews. Average length of the interview was 71 minutes.

Results: The study identified seven themes at three levels. YAs reported their engagement on cancer-related social media activities at individual/interpersonal, community, and societal levels. At the individual and interpersonal level, they used social media to manage their relationships with close network members, sought peer survivors to learn about their personal experiences, reading memes and posting cancer-related contents through different digital formats. At the community level, YAs participated in online cancer community events such as support groups and story sharing. They also engaged in building online communities through creating different online groups and sharing resources and opinions. Online cancer communities provided a safe space for them to learn cancer-related knowledge and express feelings and concerns. At the societal level, YAs actively participated in patient advocacy through reporting inappropriate online content and contributing content advocating for more representation of different cancer types and experiences. YAs’ engagement on social media highlights their participation in the process of decentralizing cancer-related knowledge through personal narratives and democratizing cancer supportive care through sharing resources at multiple levels as both beneficiaries and contributors.

Conclusions and Implications: The findings of this study help oncology social workers understand different needs and levels of social media engagement among YA cancer survivors. It informs multilevel and multi-component social media-based interventions to meet YAs’ complex needs and improve their quality of life. Furthermore, it empowers and engages them in the continuum of cancer survivorship care. This study also informs nonprofit organizations who host cancer support groups and online forums on ways to develop supportive online cancer communities. By promoting online supportive cancer communities, healthcare professionals can enhance the psychosocial well-being of YA cancer survivors and provide a supportive platform for patient advocacy. In conclusion, social media is an important resource for YA cancer survivors, and healthcare providers and nonprofit organizations should consider its potential to help meet their complex needs.