I’m thrilled to spread news today that my dissertation committee approved my project. I now am ready to share more of the study details and story of how we got here. I will note up front, however, that I am still waiting on approval from the ethical review board at my home university before I can officially begin with data collection and participant recruitment and all that fun stuff!
Hence, my research is approved, sort of.
Before sharing the details of the project, I’d like to explain a part of the process which has haunted me a little bit. I got a bit over eager when I first put all the pieces together for my first proposal defense. I even conducted some of the research activities under the impression that it was feasible since it was helping me develop the project. I was wrong about that. I was gently scolded by my committee and then reprimanded by the IRB! To those community members who I have worked with on dissertation-related projects, I will be able to contact you again regarding this after the proposal is approved by the ethical review board!
Now, on to the project details!
Across social media platforms, persons with diabetes engage in discourses on the condition of diabetes. Topics discussed range from basic illness symptomology and treatment to taboo intrapersonal tips on how to have sex while wearing an insulin pump. Among these topics is representation. Persons with diabetes discuss stereotypes and stigmas attached to the diagnosis. For example, some may cast doubt on the connection between diabetes and overeating, while others may promote a representation of the diabetic athlete unhindered by their disease. Some seek normalcy through shared experience with peers in online fora. Diabetes online communities (DOCs), of which there are several spanning a variety of social media platforms, have been documented as sites of cultural and peer support exchange. While some research has been done to understand benefits and consequences of participation in DOCs at an individual level1, none has examined it as a location of representation discourse. Counter-narrative social media movements like #IWishPeopleKnewDiabetes, #InsulinForAll, and #WeAreNotWaiting are active forums for both individual and collective cyber-activism. Though the condition of diabetes has been depoliticized through individualization in media, healthcare, and academy, discourses taking place on social media suggest that the diabetes lived-experience is political. It is vital that methods which capture the sociocultural context unfolding across diabetes online communities are used to examine this. Again, however, very little research has yet to take this approach. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces.
The framework for this study will employ the philosophies of two methodological approaches, namely participatory action research (PAR) and netnography. PAR emphasizes community collaboration, action-oriented participation, shared ownership throughout the research process, and social change-making2 and netnography emphasizes researcher immersion, cultural exploration, thick description through field notes and interviews, and iterative data analysis of online groups3. These two frameworks will provide a cultural, action-oriented lens through which to examine DOCs as cultural sites. Both frameworks require the use of reflexive methods to guide research design and analysis4 and offer opportunities for researchers to focus on collective and connective apparatuses of mobilization and social change, rather than individualistic outcomes and changes5. Lastly, the flexibility of these approaches allows for overlapping research activities that inform each other. The netnography is member checked by PAR collaborators, and the PAR collaborator meeting discussion and content are informed by the netnography.
At this point, I am sharing for the sake of releasing this information up front. I will continue to post about the progress of this project and list any engagement opportunities moving forward.