Living with a Machine: A Critical Focused Ethnography of Diabetes Practices in the Context of Insulin Pumps

Background: Insulin pump utilization has increased significantly over the past 30 years and despite extensive research on adapting to, living with, and managing diabetes, there is a paucity of research on the enactment of diabetes in the context of insulin pumps. Purpose: I aimed to explore diabetes enactment by individuals who live with Type 1 or Type 2 diabetes and use an insulin pump in Newfoundland and Labrador. Enactment comprises the iterative, interactive practices of problem-solving, decision-making, and sense-making in everyday diabetes management. Methods: Qualitative focused ethnography was the design, and I drew on the analytic strategies of Fairclough’s Dialectical-Relational critical discourse approach to determine dominant social discourses. Participant recruitment occurred via posters in clinics, pharmacies, the Diabetes Canada regional office and their Facebook page. Data Generation: I interviewed 15 participants twice to generate 30 interviews; I also contacted four participants for an additional short post interview follow-up. As per their request, two participants were accompanied by their spouses. I used a semi-structured interview protocol which evolved with concurrent data analysis. I recorded field notes and detailed reflections immediately following each participant encounter. I examined documents such as Diabetes Canada Clinical Practice Guidelines (2018), insulin pump brochures and manuals, and diabetes artifacts such as insulin pumps. I generated data from August 2018 to February 2020. Data Analysis: All interviews were transcribed verbatim, and I listened to interviews multiple times. Data analysis was managed in Quirkos©. I completed an inductive thematic analysis of data along with an analysis of discursive and social practices. I ensured rigour through verification strategies such as methodological congruency, maximum variation and theoretical sampling, concurrent data generation and analysis, multiple data sources, serial interviewing with participants, reflexive journaling, as well as regular debriefing with my supervisor and through co-supervising a BScN After-Degree Honors student who analyzed part of my dataset. Results/findings: Of the 15 participants, nine were female, six were male, most were married (n=12), and the average age was 47 years. The average length of time living with diabetes was 27 years (range 3 – 42 years). The average length of time using an insulin pump was 10 years (range: 2 weeks – 18 years). Four themes emerged. 1: The insulin pump is the best way forward for diabetes management. Participants acknowledged the pump as superior to injections and viewed returning to injections as a step backward in management. 2: Working like a pancreas: Maintaining homeostasis from the outside. Participants manipulated their pump and bodies to mimic the function of their pancreas. 3: The constancy of surveillance. Participants constantly monitored their blood glucose either subjectively through attention to body cues or objectively using technology and negotiated with others’ attempts to offer advice or to provide surveillance. 3: Living in predictable unpredictability where all participants prepared, to some degree, to mitigate fluctuations of blood glucose. As a result of hegemonic practices, influenced by neoliberal ideologies of self-management, participants discursively constructed themselves as ‘good’ self-managers. Implications: Diabetes enactment exists in networks involving multiple actors, of which the individual living with diabetes is one. Successful diabetes management continues to be measured by meeting glycemic targets; the dominant knowledge is biomedical. Participants utilized experiential knowledge but simultaneously evoked a sense of deviance. Diabetes management through a network lens broadens the view of self-management and subsequently self-management support. Nursing education, research, policy, and practice changes are needed to legitimize expert knowledge and promote a practice-network approach to diabetes management. Conclusion: Self-management and person-centered care need reconceptualizing as currently the emphasis remains on the dominance of biomedical assumptions in meeting diabetes management goals. Continued centering of the person leads to blame, shame, and stigma. Further evolution using a praxiographic approach, highlighting the existence of practice-networks, is warranted.

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