Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment

Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media.

The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers.

We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site.

A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces.

Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange.