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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Nov 27, 2018
Open Peer Review Period: Dec 4, 2018 - Jan 29, 2019
Date Accepted: Jul 21, 2019
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

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

Mikal JP, Grande SW, Beckstrand M

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

J Med Internet Res 2019;21(10):e12880

DOI: 10.2196/12880

PMID: 31651404

PMCID: 6914235

Organizing Facebook data into quantifiable social support metrics: A coding scheme to evaluate support exchanges among breast cancer patients

  • Jude P Mikal; 
  • Stuart W. Grande; 
  • Michael Beckstrand

ABSTRACT

Background:

Social media has emerged as the epicenter for exchanging health-related information, resources and emotional support. Yet 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.

Objective:

To develop a fuller understanding of social support exchange by examining 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.

Methods:

We conduct 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’ posts related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socio-emotional support requests broadcast by patients on the site.

Results:

A novel ground-up coding schema applied to complex and unwieldy Facebook data successfully identified social support exchange behaviors and differentiated levels of support provided, support requested, valence of support, and potential expectations of support requested. Iterative design and analysis led to a novel coding schema informed by 21,000 lines of data, a priori literature review, and observed social support exchanges. Schema framed operational definitions of what support means and forms each type of support can take in social media spaces.

Conclusions:

Differentiating social support exchange within Facebook posts provided compelling insight on ways social support in online spaces can be used to buffer against stress and act as a bridge to support networks following cancer diagnosis. In addition, our aim is to provide a template for researchers trying to bracket support exchange via social media.


 Citation

Please cite as:

Mikal JP, Grande SW, Beckstrand M

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

J Med Internet Res 2019;21(10):e12880

DOI: 10.2196/12880

PMID: 31651404

PMCID: 6914235

Per the author's request the PDF is not available.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.