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Indigenous children and young peoples live with an inequitable burden of acute rheumatic fever and rheumatic heart disease. In this Review, we focus on the epidemiological burden and lived experience of these conditions for Indigenous young peoples in Australia, New Zealand, and Canada. We outline the direct and indirect drivers of rheumatic heart disease risk and their mitigation. Specifically, we identify the opportunities and limitations of predominantly biomedical approaches to the primary, secondary, and tertiary prevention of disease among Indigenous peoples. We explain why these biomedical approaches must be coupled with decolonising approaches to address the underlying cause of disease. Initiatives underway to reduce acute rheumatic fever and rheumatic heart disease in Australia, New Zealand, and Canada are reviewed to identify how an Indigenous rights-based approach could contribute to elimination of rheumatic heart disease and global disease control goals.

INTRODUCTION Indigenous peoples’ rights include the right to self-determine one’s identity. For Māori, this includes self-assignment of ethnicity, and traditional identities such as Iwi (tribe). New Zealand’s Ministry of Health requires health services to collect ethnicity data using standard protocols. Iwi data are also collected by some health services; however, with no health-specific protocols, little is known about Iwi data collection and quality. The National Hauora Coalition (NHC) Primary Healthcare Organisation (PHO) sought to understand Iwi data collection across its network of primary care providers. AIM To understand Iwi data collection at the NHC PHO; specifically, is it being routinely collected, how is it being collected and what are the results? METHODS In 2017, NHC’s general practice clinics were invited to submit their enrolment forms, which capture ethnicity and potentially Iwi information, by e-mail to the audit team. Forms were reviewed to determine whether Iwi information was being collected and if so, what question was being used. Iwi numbers were collated from the annual data extract. RESULTS Thirty-three of a total of 35 clinics (94%) submitted their enrolment forms to the audit team. Nine of the 33 clinics (27%) sought Iwi name/s with a specific question on their enrolment form. Six different ‘Iwi’ questions were used by the nine clinics. The data extract revealed that the NHC had Iwi data for 13% (2672/20,814) of its Māori enrolments. Ngāpuhi were the largest Iwi group at the NHC. DISCUSSION This is the first study to describe the quantity and quality of Iwi data collection in NZ primary care. Standard procedures for collecting, recording and using Iwi data are being developed by the NHC PHO. These could inform national protocols to optimise the quality of Iwi data.

Objective: Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Māori and Pacific youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non‐adherence. This research explored Māori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements. Methods: Participants were Māori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Māori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach. Results: Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care. Conclusions and Public health implications: Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service‐delivery models should provide regular prophylaxis in an accessible manner through culturally‐safe, community‐based, age‐appropriate care.

Rheumatic heart disease (RHD) is a large, preventable, global public health burden. In New Zealand (NZ), acute rheumatic fever (ARF) and RHD rates are highest for Māori and Pacific children. This structured review explores the evidence for primary prevention interventions to diagnose and effectively treat group A Streptococcus (GAS) pharyngitis and skin infections to reduce rates of ARF and RHD. Medline, EMBASE and Scopus databases were searched as well as other electronic publications. Included were 50 publications from 1980 onwards. This review has identified that there is little available evidence for effective primary prevention strategies to reduce ARF rates in NZ. However, two primary intervention strategies that should be considered by communities at high-risk of ARF are: the use of school-based clinics to identify and treat GAS pharyngitis and GAS skin infections; and intramuscular benzathine penicillin G with lignocaine analgesia in children who present with a GAS positive throat.

Objectives Type 2 diabetes mellitus (T2DM) and periodontal disease are two highly prevalent, directly and independently associated long-term conditions that disproportionately impact Indigenous Māori in New Zealand (NZ). Although poorly understood, a number of social and biological mechanisms connect these conditions. This qualitative study explored experiences of T2DM and oral and dental (hereafter oral/dental) health; access to oral/dental health care; whether participants' experiences supported or challenged existing evidence; and sought suggestions for improving oral/dental health in a high-deprivation rural area of Northland, NZ. Methods Participants (n = 33) meeting the study criteria: self-identified Māori ethnicity, aged ≥ 18-years with glycated haemoglobin (HBA1c) >65 mmol/L were recruited via the local primary care clinic in September-December 2015; two left the study prior to data collection. During face-to-face semi-structured interviews, participants (n = 31) were asked How does diabetes affect your teeth? and When did you last access dental care? Kaupapa Māori (KM) theory and methodology provided an important decolonizing lens to critically analyse the fundamental causes of Indigenous health inequities. Results Independent analysis of qualitative data by three KM researchers identified four themes: access barriers to quality care; pathways to edentulism; the 'cost' of edentulism; and, unmet need. Results contributed towards informing Mana Tū-an evidence-based KM programme for diabetes in primary care-to be introduced in this and other communities from 2018. Conclusions Oral health is integral to diabetes management, and vice versa. Subsidized specialist referrals for oral-dental health care for Māori with T2DM could improve glycaemic control and diabetes outcomes and reduce diabetes-related complications among this population.

ObjectiveThe present research sought to better understand the barriers, facilitators, attitudes and beliefs that influence the way Māori and Samoan grandparents feed their grandchildren in a deprived urban neighbourhood in New Zealand.DesignThe research adopted a qualitative methodology that was consistent with a Kaupapa Māori research approach. Seven semi-structured interviews were conducted with grandparents to collect narrative data.SettingSampling occurred in one Auckland suburb. The suburb was selected because of its high level of socio-economic deprivation and ethnic diversity.SubjectsSeven grandparents participated in the study (five Māori and two Samoan). Each participant met the inclusion criteria (i.e. they had provided at least five meals per week over the previous three months to grandchildren aged less than 24 months). Marae (i.e. meeting houses and areas used by local Māori tribes/sub-tribes) and community organisations were used to recruit participants.ResultsA general inductive thematic analysis identified four key themes: (i) grandparents’ understanding of optimal feeding practices; (ii) economic and material factors; (iii) previous experiences and customary norms; and (iv) social support and societal pressure.ConclusionsThe study showed that grandparents’ complementary feeding practices in caring for infant grandchildren were influenced by upstream structural elements such as government policies related to welfare and pensions, employment, income and cultural knowledge. Frameworks that seek to achieve social justice and support cultural practices should be employed and promoted in the development of future policy and research in this area.

Background Although early detection and management of excess rates of gestational diabetes mellitus (GDM) among Indigenous women can substantially reduce maternal and offspring complications, current interventions seem ineffective for Indigenous women. While undertaking a qualitative study in a rural community in Northland, New Zealand about the complexities of living with diabetes, we observed a common emotional discourse about the burden of diabetic pregnancies. Given the significance of GDM and our commitment to give voice to Indigenous Māori women in ways that could potentially inform solutions, we aimed to explore the phenomenon of GDM among Māori women in a rural context marked by high area-deprivation. Method A qualitative and Kaupapa Māori methodology was utilised. A sub-sample of women (n = 10) from a broader study designed to improve type 2 diabetes mellitus (T2DM) who had experienced GDM or pre-existing diabetes during pregnancy and/or had been exposed to diabetes in utero were interviewed. Participants in the broader study were recruited via the local primary care clinic. Experiences of GDM, in relation to their current T2DM, was sought. Narrative data was analysed for themes. Results Intergenerational experiences informed perceptions that GDM was an inevitable heritable illness that “just runs in the family.” The cumulative effects of deprivation and living with GDM compounded the complexities of participant’ lives including perceptions of powerlessness and mental health deterioration. Missed opportunities for health services to detect and manage diabetes had ongoing health consequences for the women and their offspring. Positive relationships with healthcare providers facilitated management of GDM and helped women engage with self-management. Conclusion Māori women living with T2DM were clear that health providers had failed to intervene in ways that would have potentially slowed or prevented progression of GDM to T2DM. Participants revealed missed opportunities for appropriate diagnostic testing, treatment and health promotion programmes for GDM. Poor collaboration between health services and social services meant psychosocial issues were rarely addressed and the cycle of intergenerational poverty and disadvantage prevailed. These data highlight opportunities for extended case management to include whānau (family) engagement, input from social services, and evidence-based medicine and/or long-term management and prevention of T2DM. Electronic supplementary material The online version of this article (10.1186/s12884-018-2103-8) contains supplementary material, which is available to authorized users.

ABSTRACT BACKGROUND AND CONTEXTRheumatic fever inequitably affects Māori and Pacific children in New Zealand. School-based throat swabbing services, such as the South Auckland Mana Kidz programme, are a key element of rheumatic fever prevention interventions. ASSESSMENT OF THE PROBLEMCounties Manukau has the highest national rates of rheumatic fever (4.7 per 100,000 for first recorded rates). Given these disparities, Mana Kidz undertook an exploratory, community-based initiative to improve its service delivery for Pacific Peoples. RESULTSMana Kidz held a Pacific Leaders’ Fono (meeting) to discuss initiatives to improve rheumatic fever outcomes in South Auckland focused around challenges and solutions for addressing rheumatic fever, effective engagement strategies and leadership qualities needed to drive initiatives. Oral and written responses from 66 attendees were collected and thematically analysed. Four key themes were identified around challenges and solutions for rheumatic fever: social determinants of health; cultural responsiveness; health system challenges; and education, promotion and literacy. Three effective engagement strategies were identified: by Pacific for Pacific; developing a rheumatic fever campaign; improving health services. Three key leadership attributes were identified: culturally responsive leaders; having specific expertise and skills; youth-driven leadership. STRATEGIES FOR IMPROVEMENTMana Kidz has now created Pacific leadership roles in rheumatic fever governance groups, promotes Pacific workforce development and endorses Pacific-led initiatives and partnerships. LESSONSRecognising the value of critical reflection and the importance of good governance and collaborative, right-based partnerships in health services.

Aim: To explore kaumātua attitudes towards physician aid-in dying, to gain a clear understanding of how such attitudes may influence and shape their expectations of medical care at the end of life and to assist health professionals in Aotearoa/New Zealand to address the healthcare needs of older Māori near the end of life. Design: A kaupapa Māori consistent approach was undertaken. A systematic narrative technique was employed for the qualitative data analysis. Data were triangulated through independent data coding by three researchers (two of whom identified as Māori researchers), to ensure a robust and consistent method of analysis as well as adhering to a kaupapa Māori research approach. Setting/participants: Recruitment of participants was through kaumātua of Te Kupenga Hauora Māori (Māori leadership within the Faculty of Medical and Health Sciences), University of Auckland and local Auckland marae. Focus group or individual interviews (as per their preference) were undertaken with 20 Kaumātua from the Auckland region. Results: Five closely interrelated themes were identified from kaumātua narratives regarding physician aid-in dying. These were (1) attitudes and understandings of physician aid-in dying, (2) influence of power, (3) significance of kawa, (4) whānau relationships and the (5) significance of wairua. Conclusion: The study demonstrated that for these kaumātua, medical practices that hasten death such as physician aid-in dying are ‘not all just about the dying’. Tikanga and kawa are important processes and concepts to understand during death and dying, and whānau are central to such processes being respected by those involved in the dying process. These factors are so closely intertwined that they cannot be considered in separation of each other.