Towards understanding self-management and Pacific peoples with diabetes and end-stage renal failure: A mixed methods study

Abstract

Pacific peoples have higher rates of type 2 diabetes (diabetes) compared to other ethnic groups in New Zealand; one in three Pacific adults aged ≥ 45 years have diabetes. Rates of end-stage renal disease (ESRD) are also high among Pacific peoples for whom diabetes is the leading cause of ESRD. Progression from diabetes to ESRD can often be avoided or deferred. This does, however, require constant self-management by individuals and family, and many Pacific peoples are not well-engaged in self-management. This study sought to identify factors that influence opportunities for Pacific peoples with type 2 diabetes to engage in selfmanagement of their illness. This study was underpinned by critical realism in which context is key to understanding what influences self-management and why. A realist evaluation of self-management literature underscored how factors that influence effective engagement in diabetes self-management are socially derived and often outside the remit of the person with diabetes, the health care team, and the health system within which self-management is located. A sequential mixed method research design employed quantitative and qualitative methods. The retrospective cohort study using administrative data, used descriptive statistics and Cox model survival analysis to assess differences between Pacific ethnicities and associations with risk determinants. A total of 17,616 Pacific people with diabetes were followed up to 9 years (mean 8.2, SD 1.83); 2,785 (15.8%) developed ESRD and 1,463 (8.2%) died without known ESRD. Risk of ESRD varied significantly by ethnicity, along with health service use and engagement. A focussed ethnography of 16 Pacific people on haemodialysis for diabetic ESRD, across two in-centre haemodialysis units within a large district health board explored their understandings and lived reality of diabetes. Participants were between 30 to 69 years old and of Samoan, Cook Islander, Tongan, Niuean or Tokelauan ethnicity. In-depth interviews revealed family is a primary context for understandings of disease across multiple generations; understandings shaped how individuals perceived benefits attached to engaging in effective self-management activities and patient-provider communication. The devastating impact of ESRD diagnosis in combination with more personalised education (knowledge), led participants to actively self-manage and make more informed health care decisions. Diabetes and ESRD are increasingly being seen in multiple generations amongst Pacific populations. This study demonstrates that knowledge of disease is key to effective selfmanagement; an essential contributor to improving Pacific family health outcomes and future legacies of diabetes. Critical points of engagement necessary to delay or prevent onset and progression do lie within the scope of prevention strategies. Health providers do have a role to play in the development of strategies and opportunities that improve Pacific health outcomes through active engagement. If low engagement between patients and the health system is itself a risk factor for ESRD, this should be as actively managed as any other changeable risk factors such as glucose or blood pressure. The findings from this study also have implications broader than the field of diabetes. They contribute to the growing body of information for Pacific peoples' health and access to health care, and allow for comparative analysis and interpretation of diabetes-related complications, now, and into the future. The contribution of new knowledge can offer new insights for opportunities that could delay or prevent disease progression in other chronic diseases and populations.