“Am I Alone in This?” Understanding the Communication and Psychosocial Needs of Young Adult Cancer Survivors in An Online Support Community
Background and Purpose: Almost 70,000 adolescents and young adults (AYAs) are diagnosed with cancer yearly in the U.S. While survival rates have improved for children and older adults, survival rates for AYAs have not improved in decades. Research shows that psychosocial and practical needs of this group are typically not being met. Innovative ways to inform and support AYAs are needed. The increased usage of online cancer support groups as a resource for health-related information and support has sparked numerous discussions about the role of online support in healthcare. However, little is known about the role of social-networking groups focused on supporting AYAs with cancer. This study reports findings from a content analysis designed to explore: (1) the communication goals occurring in the online AYA community, and (2) the use of online social networks to meet AYAs psychosocial needs.
Methods: Content analysis was used to examine the communication goals and psychosocial needs occurring within a random sample of posts of an online AYA oncology support community, Planet Cancer. Members of the interdisciplinary research team (social work and communications) read and coded text from 350 posts composed of 33,040 words. The coding guide was developed based upon the AYA oncology literature and multiple research team meetings to review the data. Initial coding consisted of open reading of several complete threads and research team discussions. Four coders then read and examined the text for the most prevalent communication and psychosocial codes that occurred in the data.
Results: Five first-level codes emerged most frequently from the data: exchanging support (47.91%), coping (24.94%), describing experiences (10.81%), enacting identity (9.1%), and communicating membership in the group (7.37%). The data revealed that these young adults utilized the online support community to assist in making healthcare decisions, to reformulate identity as a young adult with cancer, to connect and find support and to understand the medical and psychosocial outcomes of cancer.
Conclusion and Implications: Findings suggest that young adults with cancer negotiate a changing and sometimes isolated sense of identity, struggle to meet expectations of self and others, and try to create a new life after cancer that involves recovery from the trauma of diagnosis and treatment. The informational support in the online community reportedly had a substantial impact on off-line decision making in treatment, supportive care, and even relational decisions (e.g., how to handle unsupportive friends and family). These findings point to the unique needs of the AYA cancer community and are important because they offer a foundational understanding of what members of the AYA cancer community are discussing online. In addition, they offer initial guidance about how social workers and other healthcare providers can meet the needs of young adults affected by cancer. Young adults would likely benefit from specialized resources to help them with early and late phases of their cancer experiences, specifically managing identity disclosure and relationships. Social workers have a critical role to play in developing and delivering these interventions.