'People that suffer or have been through it know the answers': stakeholders' perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. DESIGN: We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. METHODS: We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. RESULTS: Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. CONCLUSION: Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.

Stakeholders' Perspectives on the Quality of End-of-Life Health Care Services for Chronic Obstructive Airways Disease: A Focus Group Study.

Introduction: Delivery of end-of-life care for severe chronic obstructive pulmonary disease (COPD) has been hampered by an unpredictable disease trajectory and poor integration of health care and social services. Objective: To critically explore the perspectives, values, and experiences of stakeholders in COPD end-of-life healthcare services in a large district in Aotearoa New Zealand. Design: Focus groups analysed utilising critical theory and Actor-Network Theory. Methods: Stakeholders in end-of-life COPD healthcare services were purposively sampled from a large healthcare network in Canterbury, Aotearoa New Zealand to participate in seven focus groups (bereaved carers, community-based health professionals, non-Maori, non-Pacific patients, and support people (two groups), Maori patients, supporters and health professionals, Pacific patients, support people and health professionals, and hospital-based health professionals). Participants discussed end-of-life care services for people with COPD. Transcripts were coded utilising descriptive and structural coding to develop themes related to provision of quality care. Participants were positioned as experts. We considered how the themes arising supported and disrupted the healthcare network for end-of-life COPD. Results: Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration. The absence of any of these five themes required for quality care led to power imbalances within healthcare systems. Power inequities created disconnection among stakeholders which then disrupted commitment, community, and collaboration. A dysfunctional healthcare network impeded compassion between stakeholders and did not support their competence, leading to lower quality care. All five themes were identified as essential to delivery of high-quality end-of-life care in COPD. Conclusion: Stakeholders' perspectives of end-of-life care for COPD identified of core features of a health system network that enabled or impeded the actions of stakeholders and allocation of resources to provide quality care.

Enzyme replacement in advanced pancreatic cancer: patient perceptions.

PURPOSE: Advanced pancreatic cancer has a universally poor survival rate. Patients frequently develop malabsorption that requires pancreatic enzyme replacement therapy (PERT). This study explores the experience of patient engagement with PERT and how the medication is taken and tolerated. METHODS: Participants with advanced pancreatic cancer requiring PERT were interviewed after referral to a specialist palliative care team. An inductive analysis was used to code the data. Theoretical sufficiency was reached after 12 participants. RESULTS: Four themes emerged from the interviews-patient context, health literacy, relationship to food and experience of taking the pancreatic enzymes. Respondents brought their own life experiences into the clinical encounter when told of the diagnosis. Patients had high levels of understanding and engagement with the diagnosis and treatment, understood the benefits of PERT in digestion and tolerated the medication well. CONCLUSIONS: Patients with metastatic pancreatic cancer understand the life-limiting nature of their illness. They want to participate in their healthcare decisions and are capable of complex medication titration when given good explanations and they experience benefits. PERT should be offered to these patients by a team of knowledgeable health professionals with good communication skills that can continue to support and review their needs.

Reported sources of health inequities in Indigenous Peoples with chronic kidney disease: a systematic review of quantitative studies.

BACKGROUND: To summarise the evidentiary basis related to causes of inequities in chronic kidney disease among Indigenous Peoples. METHODS: We conducted a Kaupapa Maori meta-synthesis evaluating the epidemiology of chronic kidney diseases in Indigenous Peoples. Systematic searching of MEDLINE, Google Scholar, OVID Nursing, CENTRAL and Embase was conducted to 31 December 2019. Eligible studies were quantitative analyses (case series, case-control, cross-sectional or cohort study) including the following Indigenous Peoples: Maori, Aboriginal and Torres Strait Islander, Métis, First Nations Peoples of Canada, First Nations Peoples of the United States of America, Native Hawaiian and Indigenous Peoples of Taiwan. In the first cycle of coding, a descriptive synthesis of the study research aims, methods and outcomes was used to categorise findings inductively based on similarity in meaning using the David R Williams framework headings and subheadings. In the second cycle of analysis, the numbers of studies contributing to each category were summarised by frequency analysis. Completeness of reporting related to health research involving Indigenous Peoples was evaluated using the CONSIDER checklist. RESULTS: Four thousand three hundred seventy-two unique study reports were screened and 180 studies proved eligible. The key finding was that epidemiological investigators most frequently reported biological processes of chronic kidney disease, particularly type 2 diabetes and cardiovascular disease as the principal causes of inequities in the burden of chronic kidney disease for colonised Indigenous Peoples. Social and basic causes of unequal health including the influences of economic, political and legal structures on chronic kidney disease burden were infrequently reported or absent in existing literature. CONCLUSIONS: In this systematic review with meta-synthesis, a Kaupapa Maori methodology and the David R Williams framework was used to evaluate reported causes of health differences in chronic kidney disease in Indigenous Peoples. Current epidemiological practice is focussed on biological processes and surface causes of inequity, with limited reporting of the basic and social causes of disparities such as racism, economic and political/legal structures and socioeconomic status as sources of inequities.

Reported Maori consumer experiences of health systems and programs in qualitative research: a systematic review with meta-synthesis.

BACKGROUND: Persistent inequities in health experiences and outcomes are observed for Maori compared to non-Maori in Aotearoa New Zealand. We conceptualised factors associated with Maori consumer experiences of health programs and services and characterise how the recommendations arising from qualitative research inform strategies to address inequities. METHODS: In this systematic review, electronic literature searching was conducted in February 2018. Qualitative studies reporting Maori consumer experiences of health services and programs in Aotearoa New Zealand were eligible. Maori consumer experiences of health services were mapped to the WHO Commission of Social Determinants of Health (CSDH) conceptual framework on health inequities as related to: (i) the socioeconomic and political context; (ii) socioeconomic positioning; or (iii) intermediary factors that increase exposure to health-compromising conditions. Recommendations to improve consumer experiences were mapped to the CSDH framework for tackling social determinants of health inequities as policy directions on: (i) unequal consequences of illness (individual interaction); (ii) risks of exposure to health-damaging factors (community); (iii) exposures to health-damaging factors (public policies); and (iv) mitigating effects of socioeconomic and political stratification (environment). RESULTS: Fifty-four studies were included. Maori consumer experiences mapped to social determinants of health inequities were most frequently related to direct interactions with health services and programs, particularly patient-clinician interactions (communication, relationships) and cultural competencies of clinicians and the system. Key recommendations by researchers mapped to potential strategies to address inequity were identified at all levels of the political, social and health system from individual interactions, community change, and broader public and system-level strategies. Recommendations were predominantly focused on actions to reduce risks of exposure to health-damaging factors including health literacy interventions, increased resources in cultural competencies and Maori capacity in health service development and workforce. CONCLUSIONS: Maori consumer experiences of health services and programs are an important informer of variables that impact health inequity. Strategies to tackle health inequities informed by Maori consumer experiences can be drawn from existing empirical research. Future qualitative exploration of how socioeconomic, political and public policies influence Maori consumer experiences of health services and programs could inform a broader range of structural policies to address health inequities.

Implementation and impact of indigenous health curricula: a systematic review.

CONTEXT: The effectiveness of cultural competency education in improving health practitioner proficiency and addressing health inequities for minoritised patient groups is uncertain. Identification of institutional factors that shape or constrain development of indigenous health curricula may provide insights into the impact of these factors on the broader cultural competency curricula. METHODS: We undertook a systematic review using actor-network theory to inform our interpretive synthesis of studies that reported indigenous health curricula evaluated within medical, nursing and allied health education. We searched the MEDLINE, OVID Nursing, Educational Resources Information Center (ERIC), PsycINFO, EMBASE, Web of Science and PubMed databases to December 2017 using exploded MeSH terms 'indigenous' and 'medical education' and 'educational professional' and 'health professional education'. We included studies involving undergraduate or postgraduate medical, nursing or allied health students or practitioners. Studies were eligible if they documented indigenous health learning outcomes, pedagogical practices and student evaluations. RESULTS: Twenty-three studies were eligible for the review. In an interpretive synthesis informed by actor-network theory, three themes emerged from the data: indigenous health as an emerging curriculum (drivers of institutional change, increasing indigenous capacity and leadership, and addressing deficit discourse); institutional resource allocation to indigenous health curricula (placement within the core curriculum, time allocation, and resources constraining pedagogy), and impact of the curriculum on learners (acceptability of the curriculum, learner knowledge, and learner behaviour). CONCLUSIONS: Systemic barriers acting on and within educational networks have limited the developmental capacity of indigenous health curricula, supported and sustained hidden curricula, and led to insufficient institutional investment to support a comprehensive curriculum. Future research in health professional education should explore these political and network intermediaries acting on cultural competence curricula and how they can be overcome to achieve cultural competency learning outcomes.

A cohort study comparing cardiovascular risk factors in rural Maori, urban Maori and non-Maori communities in New Zealand.

OBJECTIVES: To understand health disparities in cardiovascular disease (CVD) in the indigenous Maori of New Zealand, diagnosed and undiagnosed CVD risk factors were compared in rural Maori in an area remote from health services with urban Maori and non-Maori in a city well served with health services. DESIGN: Prospective cohort study. SETTING: Hauora Manawa is a cohort study of diagnosed and previously undiagnosed CVD, diabetes and risk factors, based on random selection from electoral rolls of the rural Wairoa District and Christchurch City, New Zealand. PARTICIPANTS: Screening clinics were attended by 252 rural Maori, 243 urban Maori and 256 urban non-Maori, aged 20-64 years. MAIN OUTCOME MEASURES: The study documented personal and family medical history, blood pressure, anthropometrics, fasting lipids, insulin, glucose, HbA1c and urate to identify risk factors in common and those that differ among the three communities. RESULTS: Mean age (SD) was 45.7 (11.5) versus 42.6 (11.2) versus 43.6 (11.5) years in rural Maori, urban Maori and non-Maori, respectively. Age-adjusted rates of diagnosed cardiac disease were not significantly different across the cohorts (7.5% vs 5.8% vs 2.8%, p=0.073). However, rural Maori had significantly higher levels of type-2 diabetes (10.7% vs 3.7% vs 2.4%, p<0.001), diagnosed hypertension (25.0% vs 14.9% vs 10.7%, p<0.001), treated dyslipidaemia (15.7% vs 7.1% vs 2.8%, p<0.001), current smoking (42.8% vs 30.5% vs 15.2%, p<0.001) and age-adjusted body mass index (30.7 (7.3) vs 29.1 (6.4) vs 26.1 (4.5) kg/m(2), p<0.001). Similarly high rates of previously undocumented elevated blood pressure (22.2% vs 23.5% vs 17.6%, p=0.235) and high cholesterol (42.1% vs 54.3% vs 42.2%, p=0.008) were observed across all cohorts. CONCLUSIONS: Supporting integrated rural healthcare to provide screening and management of CVD risk factors would reduce health disparities in this indigenous population.

Community screening for cardiovascular risk factors and levels of treatment in a rural Maori cohort.

OBJECTIVES: To document levels of cardiovascular disease (CVD), diagnosed and undiagnosed risk factors and clinical management of CVD risk in rural Maori. METHODS: Participants (aged 20-64 years), of Maori descent and self-report, were randomly sampled to be representative of age and gender profiles of the community. Screening clinics included health questionnaires, fasting blood samples, blood pressure and anthropometric measures. Data were obtained from participants' primary care physicians regarding prior diagnoses and current clinical management. New Zealand Cardiovascular Guidelines were used to identify new diagnoses at screening and Bestpractice electronic-decision support software used to estimate 5-year CVD risk. RESULTS: Mean age of participants (n=252) was 45.7 ± 0.7, 8% reported a history of cardiac disease, 43% were current smokers, 22% had a healthy BMI, 30% were overweight and 48% obese. Hypertension was previously diagnosed in 25%; an additional 22% were hypertensive at screening. Dyslipidaemia was previously diagnosed in 14% and an additional 43% were dyslipidaemic at screening. Type-2 diabetes was previously diagnosed in 11%. Glycaemic control was achieved in only 21% of those with type-2 diabetes. Blood pressure and cholesterol were above recommended targets in more than half of those with diagnosed CVD risk factors. CONCLUSIONS: High levels of diagnosed and undiagnosed CVD risk factors, especially hypertension, dyslipidaemia and diabetes were identified in this rural Maori community. IMPLICATIONS: There is a need for opportunistic screening and intensified management of CVD risk factors in this indigenous population group.

A review of work-force development literature for the Maori addiction treatment field in Aotearoa/New Zealand.

Maori, like Indigenous Australians and other indigenous people world-wide, are simultaneously over-represented among those presenting with addiction-related problems and under-represented within various health professions. Providing the opportunity for individuals and whanau (family/extended family) to work with ethnically matched health workers is likely to increase service accessibility and to improve treatment outcomes. In New Zealand, a number of initiatives have been instigated to increase the capacity of the Maori health work-force and reduce related barriers to treatment. This article provides an analysis of relevant literature and policy documents, and identifies five strategic imperatives currently informing work-force development in the Maori alcohol and other drug (AOD) and gambling treatment sector.