Title: Assistant Professor
University: Tarleton State University
Email: khinson@tarleton.edu
Twitter: KLHinson
Website: http://professorklhinson.wixsite.com/klhinson
Description of Work:
Currently, I’m involved in a collaborative endeavor with a colleague (Dr. Ben Sword) at my university that examines how narrative shapes agency in illness related social media groups in Facebook. Facebook is an ongoing, evolving collection of data and I think that over time researchers in many fields will be looking to see what they can glean from such a rich data source from which researchers, especially those interested in health and medicine, can learn much about how individuals, illness, wellness, and social media intersect/collide/intertwine.
Symposium Submission:
Agency, Power and Facebook Support Group Narratives
The purpose of this project is to examine the role of narrative in social media (specifically Facebook) as it pertains to establishing patient agency and potentially redefining many of the labels and constructions surrounding chronic illness. This study examines five illness related Facebook groups associated with life threatening blood clotting events such as a pulmonary embolism (PE), deep vein thrombosis (DVT) or both, a venous thrombolytic event (VTE) over a 12 month period beginning July 2016 and ending in June 2017. This long period of study provides ample data to explore and identify how such groups facilitate defining/redefining PE/DVT/VTE survivorship. In addition to the ethnographic data gained through observation of these 5 groups, interviews were scheduled with 6 individuals across all 5 groups and a survey was completed by 126 people also from across all 5 groups.
Such in-depth analysis of interactions occurring through social media support groups reveals a number of important insights regarding the role of social media in shaping the crafting of patient narrative. Narrative does more than serve as an avenue for ‘venting’ and seeking emotional support. Narrative also provides agency, identity, and legitimacy to those who are marginalized or those whose voices have been repressed by societal conventions or constructions. Members share their individual stories, symptoms, and treatment regimens in an effort to understand, to gain knowledge, and therefore have power over the illness rather than the illness controlling them. As a result of their individual involvement in an illness related social media group, participants have the potential for transformative agency to affect the quality of health care and a change in institutional practices that promote people being actively involved in the decision making processes involving their care rather than maintaining a role of passivity and quiescence (BèHague et al., 2008, p. 491).
Narratives created through social media use associated with individual care certainly warrant further exploration. A significant amount of research has already been devoted to the role of social media in the shaping of social constructions of illness and disability. Scholars have chosen to devote time and resources to the study of social media based on the awareness that advancements in technology allow individuals to more readily interact, to more quickly discover information and to more quickly disseminate knowledge (Park et al., 2009; Pi et al., 2013; Yu et al., 2009; Griffiths et al., 2012; Bagayogo et al., 2014; Merolli et al., 2013; Weiss et al., 2013; Potts, 2014). However, while the institutional power of the medical professional has been, and perhaps continues to be, the primary force in shaping modern ideas about illness and disability, patient narratives created through and shared through social media support groups may challenge the physician as ‘expert’ and may even privilege the narrative in/of the support group because it is lived experience.