Abstract
AimsTo explore actions and motivations for self-management practices of Pacific adults following diagnosis of end stage renal disease (ESRD).MethodsFocused ethnography using in-depth interviews with 16 Pacific people on haemodialysis for diabetic ESRD, in Auckland, New Zealand. Study participants were of Samoan, Cook Islander, Tongan, Niuean, or Tokelauan ethnicity and aged between 30 to 69 years old. Thematic analysis was used to code and identify emergent themes.ResultsAll participants assumed active responsibility for their self-management following their diagnosis of ESRD. They reported positive differences in their current self-management behaviours, compared to pre-ESRD diagnosis. In the face of their terminal diagnosis, participant’s motivations to self-manage their health were fuelled by hope; the hope to live long enough to change their family legacy of diabetes and ESRD. To achieve this, there was a dependency upon family members as a resource for self-management support. Yet at the same time, family members also had health concerns (including diabetes), and several participants themselves were carers for sick or elderly family members.ConclusionThe growing number of members (within family units) progressing from moderate to late-stage diabetes raises concerns about the sustainability of future family support in Pacific families in New Zealand with histories of diabetes, ESRD, and other chronic diseases. While the burden upon informal carers (family) has been well documented throughout the past few decades, the dynamics of bi-directional carer support between (two or more) sick family members and their families have had less exposure. This has potentially significant implications for Pacific peoples in New Zealand, considering the increases in diabetes prevalence within their families.
Highlights
Self-management is generally understood as the overall process of an individual’s engagement in their management of one or more chronic diseases [1, 2]
In New Zealand, Pacific peoples have higher rates of diabetes [6] and end stage renal disease (ESRD) [7] compared to other ethnicities, and both diseases are increasingly being seen in multiple successive generations amongst this population
Recent statistics report the incidence of renal replacement therapy (RRT)—including haemo- and peritoneal dialysis, and transplant) in New Zealand is equivalent to 128 per million of population, a proportion that is similar to Australia (124 pmp) who have a population of approximately 24.6 million
Summary
Self-management is generally understood as the overall process of an individual’s engagement in their management of one or more chronic diseases [1, 2]. An individual’s behaviour can influence ineffective self-management [3], where behaviour—as an outcome determined by context–shapes how an individual with diabetes acts and copes [4]. In New Zealand, Pacific peoples have higher rates of diabetes [6] and ESRD [7] compared to other ethnicities, and both diseases are increasingly being seen in multiple successive generations amongst this population. [8] Diabetes is the leading cause of ESRD, with diabetic nephropathy (diabetic kidney disease) the leading cause of ESRD in 72% of Pacific, compared to Māori (68%), Asian (43%), and New Zealand European/Other (36%) [7]. Pacific RRT rates are significantly higher (471 pmp) compared to New Zealand European (71 pmp), where over the past 5 years RRT for Pacific populations have increased by 14% compared to New Zealand European (3%).[7]
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