Uncertainty and support-seeking in US-based online diabetes forums

ABSTRACT

Uncertainty is a prevalent and influential experience for people managing chronic illness. People living with diabetes experience individual, relational, and illness-related uncertainty across the illness trajectory, yet scholars know little about the lived experience of diabetes uncertainty. To fill this gap, our study examined interpersonal exchanges in 22 US-based online forums geared toward people with diabetes. Our results revealed four sources of diabetes uncertainty: using tools, experiencing complications, negotiating multiple health issues, and affording care. This uncertainty prompted two mutually influential responses: worrying/fearing and controlling diabetes. Support-seeking emerged as a primary communicative goal for people with diabetes, as they managed uncertainty through navigating finances, choosing tools to manage the disease, establishing norms, and crowdsourcing care. The results have pragmatic value for informing diabetes self-management education.

KEYWORDS:

• diabetes
• grounded theory methods
• online forums
• support
• uncertainty

Acknowledgements

The authors are grateful for the contributions of graduate student Molly Farris and undergraduate students Gabi Singleton, Rachel Holderman, Lane Caspar, and Kirsten Anderson in data analyses.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 The overrepresentation of white samples is important to consider in this literature. Information about race was not available for several studies, but in publications that did include racial demographics (e.g. Middleton et al., 2012), the samples were over 70% white.