Social Network Analysis of Online Support Communities for Adolescent and Young Adult Cancer Survivors

Author: Carlos Artuto Perez Aldana, MS (2022)

Primary advisor: Tiffany Champagne-Langabeer, PhD

Committee members: Susan Fenton, PhD; Sahiti Myneni, PhD;

PhD thesis, The University of Texas School of Biomedical Informatics at Houston.

ABSTRACT

There are an estimated 633,000 adolescent and young adult (AYA) cancer survivors in the U.S. and nearly 89,500 AYAs are diagnosed with cancer every year. Cancer creates developmental and life stage disruptions, which result in multiple survivorship challenges, particularly among AYAs. Despite the advances made in cancer oncology and survivorship care, AYA cancer survivors continue to face diverse and unique psychosocial needs. Research suggests that online support communities have the potential to positively impact psychosocial care by providing AYA cancer survivors with access to social support which can help them successfully transition from treatment back to normal life as well as improve their well-being. In addition, online support communities have become important sources of social support, particularly peer support, offering an opportunity for AYA cancer survivors to exchange support and overcome psychosocial challenges. However, despite an increasing use of online support communities by cancer survivors in general, there is limited evidence providing insights into how online social support can be leveraged by AYA cancer survivors to bridge existing gaps in their psychosocial care. This study provides a deeper understanding of online support exchange by examining the structures of support networks of online interactions among AYA cancer survivors. It applies an informatics approach that combines content analysis, computerized text analysis, and social network analysis. The results show that AYA cancer survivors are mostly exchanging emotional support but also exchange informational and esteem support in similar proportions. In addition, this study expands current understanding of how AYA cancer survivors are using language to exchange support online. Furthermore, the structural characteristics of support networks reveal they are characterized by low densities and average degrees. Moreover, subcommunities of network support developed among AYA cancer survivors, in spite oflow levels of cohesion and clustering between them. Additionally, support networks show that AYA cancer survivors who exchange informational or esteem support are also likely to exchange emotional support. Lastly, the novel data-driven insights gathered by applying an informatics approach may inform the future design and implementation of online support interventions that aim to address the unmet psychosocial needs of AYA cancer survivors.