Understandings of disease among Pacific peoples with diabetes and end-stage renal disease in New Zealand.

BACKGROUND: Compared with New Zealand Europeans, Pacific peoples in New Zealand develop type 2 diabetes at a higher rate and a younger age, and have 3.8 times higher incidence of end-stage renal disease (ESRD). OBJECTIVE: To investigate contextual factors that shape understandings of disease for Pacific peoples with diabetes and ESRD. METHODS: Focussed ethnography. In-depth interviews were conducted with 16 Pacific people on haemodialysis for diabetic ESRD, in Auckland, New Zealand. Study participants aged between 30 and 69 years old were of Samoan, Cook Islander, Tongan, Niuean or Tokelauan ethnicity. Thematic analysis was used to code and identify themes. RESULTS: Participants were embedded in a multigenerational legacy of diabetes. The limited diabetes-related education of earlier generations influenced how future generations behaved and understood diabetes. Perceptions were compounded by additional factors including the invisibility of early-stage diabetes; misunderstandings of health risks during communication with health providers; and misunderstandings of multiple conditions' symptoms and management. Participants had limited engagement with health services until their diagnosis of ESRD acted as a trigger to change this behaviour. However, this trigger was not effective in itself-rather, it was in combination with relevant education delivered in a way that made sense to participants, given their current understandings. CONCLUSIONS: Illness representations drive choices and behaviours with respect to self-management of diabetes and engagement with health services. Diabetes is often present in multiple generations of Pacific people; therefore, illness representations are developed and shared within a family. Changing illness representations requires engagement with the individual within a family context.

Patients' engagement in primary care: powerlessness and compounding jeopardy. A qualitative study.

BACKGROUND: Primary health care does not adequately respond to populations known to have high needs such as those with compounding jeopardy from chronic conditions, poverty, minority status and age; as such populations report powerlessness. OBJECTIVE: To explore what poor older adults with chronic conditions who mostly belong to ethnic minority groups say they want from clinicians. SETTING AND PARTICIPANTS: Participants were older adults whose chronic conditions were severe enough to require hospital admission more than twice in the previous 12 months. All participants lived in poor localities in Auckland, New Zealand's largest city. METHODS: Forty-two in-depth interviews were conducted and analysed using qualitative description. RESULTS: An outward acceptance of health care belied an underlying dissatisfaction with low engagement. Participants did not feel heard and wanted information conveyed in a way that indicated clinicians understood them in the context of their lives. Powerlessness, anger, frustration and non-concordance were frequent responses. DISCUSSION AND CONCLUSIONS: Despite socio-cultural and disease-related complexity, patients pursue the (unrealised) ideal of an engaged therapeutic relationship with an understanding clinician. Powerlessness means that the onus is upon the health system and the clinician to engage. Engagement means building a relationship on the basis of social, cultural and clinical knowledge and demonstrating a shift in the way clinicians choose to think and interact in patient care. Respectful listening and questioning can deepen clinicians' awareness of patients' most important concerns. Enabling patients to direct the consultation is a way to integrate clinician expertise with what patients need and value.

Helplessness, self blame and faith may impact on self management in COPD: a qualitative study.

AIMS: To explore how patients with COPD experience helplessness. METHODS: In-depth interviews with 29 patients with moderate to very severe COPD. Data were analysed using a general inductive approach. RESULTS: All patients focused on acute symptoms and expressed feelings of helplessness in the management of their condition; little attention was paid to longer-term strategies. For one group of patients, mostly European, self blame appeared to intensify feelings of helplessness. For a second group, mostly Pacific, a focus on faith in God, Church and family provided a more positive affect and existed alongside helplessness. CONCLUSIONS: Clinicians seeking to support patients to include longer term strategies in their self management will need to coach patients to experiences of short-term success, and be aware of the ways that patients experience and interpret their helplessness. Clinicians need to address self blame, and recognise patients' priorities of faith and family.

Self-management action and motivation of Pacific adults in New Zealand with end-stage renal disease.

AIMS: To explore actions and motivations for self-management practices of Pacific adults following diagnosis of end stage renal disease (ESRD). METHODS: Focused 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. RESULTS: All 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. CONCLUSION: The 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.

Understanding 'context' in the self-management of type 2 diabetes with comorbidities: A systematic review and realist evaluation.

OBJECTIVE: To identify contextual factors that affect self-management of diabetes with comorbidities, and to evaluate in what way these factors affect self-management effectiveness. METHODS: A systematic review of literature considered English language articles published within Medline, PsycINFO, Pubmed, CINAHL Plus, and Scopus databases that focussed on individuals' experiences of type 2 diabetes from primary intervention or observational studies. A realist evaluation approach was used to analyse themes identified within the literature. Context-mechanism-outcome theories were constructed to identify underlying contextual factors and to construct a model illustrating diabetes self-management effectiveness. RESULTS: Of 1519 articles identified, 30 met inclusion criteria. Adherence was found to be the common mechanism that (within given contexts) determined self-management effectiveness. Limited financial resources were identified as the key context. Our model makes explicit a structural weaknesses of diabetes self-management. CONCLUSIONS: Coping with diabetes in the context of people's lives requires attention to issues that are often outside the remit of the person with diabetes, the health care team, and the health system within which self-management is located. Realist evaluations illuminate programme mechanisms and fine-tune context. They aid initial understandings of how an intervention or programme is thought to work, in order to influence and (re)design (new) programmes.

Population health in New Zealand 2000-2013: From determinants of health to targets.

OBJECTIVE: To determine how 'population health' has been understood in practice and policy and has influenced health system restructuring in New Zealand since 2000. METHODS: Interviews in 2007-2008 with managers, clinicians, government policy advisors and academics were undertaken to explore the relationships between population health, determinants of health, and health system restructuring. This was augmented by a review of major government health policies from 2009 to 2013 to establish which notions of population health were reflected. RESULTS: Population health shifted from a broad notion of health determinants to focus on a small number of quantifiable health targets driven by financial incentives. Meantime, an emphasis on 'quality and safety' impeded population health activities. District Health Board programmes to identify high risk individuals, by disease or hospital service utilisation, diverted attention from broader population health outcomes. District Health Boards were not held accountable for integrating a population health approach in service planning and did not initiate or lead intersectoral work. Community consultation was limited. Primary Health Organisations, although mandated to address population health, typically aligned with the small-business model of general practice making service integration difficult to achieve. In policy, 'population health' dropped from favour in the mid-2000s, although many documents, outside the health sector, carried forward these values. CONCLUSION: A progressively narrower focus on a small number of health targets and on organisational processes undermined earlier policy intentions and health system restructuring that sought to improve broader population health outcomes.