Type 1 diabetes (T1D) is a chronic, autoimmune disease that is generally diagnosed during childhood or adolescence (Diabetes Canada & Diabetes Québec, 2010). No or inadequate pancreatic insulin production results in elevated blood sugar levels, thus individuals require manual insulin delivery via syringe or an insulin pump (Diabetes Canada & Diabetes Québec, 2010).
Insulin pump therapy and continuous glucose monitoring (CGM) are evolving diabetes health technologies that can benefit youth living with T1D in terms of blood glucose management (Chase et al., 2010; Churchill, Ruppe, & Smaldone, 2009) as well as child/parent well being (Lukács et al., 2013; Mauras et al., 2012; Opipari-Arrigan et al., 2007; Pickup, Ford Holloway, & Samsi, 2015). Continuous glucose monitoring can also support diabetes management by enabling parents to identify glycemic trends (Pickup et al., 2015). These health technologies are expensive (Medical Advisory Secretariat, 2011).
Diabetes nurse educators have an instrumental role on the diabetes healthcare team delivering diabetes self-management education and support to diverse patient populations and their families (Martin & Lipman, 2013). Their role extends beyond the clinical context to also address socioeconomic dimensions of diabetes management and care (American Association of Diabetes Educators, 2016).
Ontario, Canada’s Assistive Devices Program (ADP) covers a proportion of insulin pump therapy expenses (e.g., 75%) for eligible youth and adults living with T1D, although families can still accrue out-of-pocket expenses (Government of Ontario, 2017). Moreover, the program does not cover the costs of CGM (Government of Ontario, 2017). Taken together, accessibility and cost burden may be a concern for some families, thus hindering some youths’ “capacity to benefit” (Culyer, 2001, p. 278) from these health technologies.
A mixed methods study is being conducted with Ontario families and diabetes nurse educators to assess:
- The impact of Ontario’s ADP for insulin pump therapy, relative to the health needs of youth living with T1D;
- The demand for insulin pump therapy and CGM, as well as how accessible these health technologies are; and,
- How families are impacted by the cost burden of T1D health technologies.
Dahlgren and Whitehead’s (1991) “The Main Determinants of Health” (p. 11) framework, and Lipsky’s (2010) “street-level bureaucracy” situate this sequential mixed-methods (Creswell, 2014) study. A survey is being piloted and administered to parents of youth living with T1D, followed by semi-structured interviews with diabetes nurse educators. Statistical analysis of the quantitative data will involve descriptive and inferential statistics (i.e., t test, ANOVA), as well as a sensitivity analysis of the costing data. Content analysis of the qualitative data will be conducted prior to triangulating the two data sources. The study’s theoretical underpinnings and preliminary findings will be presented.
Findings from this study could help inform governments’ decisions about future diabetes management and program funding in Ontario and across Canada. Opportunities for ADP improvement and innovation may also be identified. Moreover, this research will highlight the clinical and policy context of the diabetes nurse educator role, and thus may promote role clarity as well as help guide nurses’ clinical decision-making.
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