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

Abstract

BackgroundSocial 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.ObjectiveThe 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.MethodsWe 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.ResultsA 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.ConclusionsGiven 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.

Social media as a modern Emergency Broadcast System: A longitudinal qualitative study of social media during COVID-19 and its impacts on social connection and social distancing compliance

“…Nevertheless, similar to other studies on the longevity of support availability ( Mikal et al, 2019 , 2020a , 2020b ), our study showed that social media platforms were very useful immediately following the transition to staying at home, but became less useful over time. Relatively quickly—by weeks three and four—social media exchanges once viewed as motivational and community-building began to wear thin for some users.…”

“…In the first two weeks of widespread of COVID-19 in the United States (3/8/2020–3/22/2020), we recruited individuals to participate in a weekly survey on social media use. Individuals were recruited via snowball sampling with announcements posted to several Facebook groups used in prior research studies ( Mikal et al, 2016 , 2017 , 2019 , 2020a , 2020b ).…”

Persistent digital divide in health-related internet use among cancer survivors: findings from the Health Information National Trends Survey, 2003–2018

“…More research is needed to understand the evolution of this medium to gain a better understanding of how social media-type interventions can be used to target age-based diseases such as cancer and how social support is expressed via social media. Previous research has indicated that these platforms as a source of support for cancer may be too general and more emotionally oriented (as opposed to focused on resources/needs) [ 33 ]. Popular social media outlets such as Facebook may also provide information that needs to be appraised for quality to ensure that it is evidence based [ 34 , 35 ].…”

Features That Middle-aged and Older Cancer Survivors Want in Web-Based Healthy Lifestyle Interventions: Qualitative Descriptive Study

“…We also demonstrated and asked feedback on 3 web-based program features that were under consideration for a web-based program at that time: live web chat, Facebook discussion group, and Articulate Storyline interactive e-learning sessions. We chose these features because of their potential to facilitate engagement with a program, provision of social support, and easy access via multiple devices (smartphones and computers) [ 29 - 32 ]. Each feature was explained and demonstrated for focus group participants, followed by probing questions about the feature’s perceived effectiveness for delivering program content and promoting cancer survivors’ program participation.…”