A novel framework for Indigenous eye health care in New Zealand: Nga Mata o te Ariki.

CLINICAL RELEVANCE: Development of an Indigenous eye health framework could offer the opportunity for eye health professionals to enhance engagement with Indigenous populations. BACKGROUND: Indigenous populations globally experience disproportionately poorer eye health outcomes than non-Indigenous peoples. Incorporating Maori perspectives of eye care and pre-existing Indigenous models of health offers potential to enhance Maori experience and engagement with eye health services. This study seeks to develop and refine a practical framework for eye health care that incorporates nine established Indigenous health principles. METHODS: Qualitative methodology, guided by Indigenous Maori research principles, was used to evaluate interviews with five leading senior Maori academics surrounding the ongoing development and refinement of a Kaupapa Maori (Maori worldview centric) framework for eye care in Aotearoa New Zealand, created following Maori health consumer consultation. Interviews were semi-structured and analysed using reflexive thematic analysis. RESULTS: Seven key themes arose in relation to the development of a Kaupapa Maori framework for eye care in Aotearoa New Zealand: 1) vision is critical to Maori well-being, 2) cultural safety is important, 3) Maori health beliefs must be upheld, 4) achieving pae ora (healthy futures) is important, 5) key concepts and focus of the framework must be clear, 6) purakau (traditional Indigenous stories) are valuable resources in developing health frameworks and 7) embedding Matariki (fundamental Maori) principles is valuable. CONCLUSIONS: Using Kaupapa Maori principles allowed development and refinement of a framework that encourages clinicians to consider Indigenous health principles when engaging with Maori patients who seek eye care. Application of this framework may contribute to enhancing cultural safety and responsiveness of eye care for Maori.

Maori nurse practitioners: The intersection of patient safety and culturally safe care from an Indigenous lens.

BACKGROUND: Dynamic and complex health systems require innovative and adaptive solutions to support patient safety and achieve equitable health outcomes for Indigenous populations. Understanding the ways by which Indigenous (and specifically Maori) nurse practitioners (NPs) practice patient safety is key to enhancing Indigenous health outcomes in predominantly westernized healthcare systems. AIM: To describe Maori NPs perspectives on patient safety when caring for Maori and understand how Maori NPs deliver safe health care. METHODOLOGY: A group of five Maori NPs worked alongside a Maori nurse researcher to explore their perceptions of patient safety. Together, they held an online hui (focus group) in early 2024. Data were analysed collectively, informed by kaupapa Maori principles, using reflexive thematic analysis. RESULTS: Maori NP experiences, expressions and understandings of patient safety envelop cultural safety and have many facets that are specific to the needs of Maori populations. The three themes showed: (1) Te hanga a te mahi: the intersection of cultural and clinical expertise; (2) Matauranga tuku iho: the knowledge from within, where safe practice was strongly informed by traditional knowledge and cultural practice; (3) Te Ao hurihuri: walking in two worlds, where Maori NPs navigated the westernized health system's policies and practices while acting autonomously to advocate for and deliver culturally safe care. CONCLUSION: The Maori NP lens on patient safety is vital for promoting culturally responsive and effective health care. By recognizing the unique needs of Maori patients and families and incorporating cultural perspectives into practice, Maori NPs contribute to a more comprehensive and inclusive approach to patient safety that goes beyond westernized principles and practices. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data Sovereignty Model for Isolate Samples in Research.

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Maori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa Maori-consistent study, this paper reports on preliminary discussions with groups of Maori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants' discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kawanatanga (governorship) in shaping a multicultural data sovereignty model.

Introducing 'Ngaruroro', a New Model for Understanding Maori Wellbeing.

Indigenous peoples around the world are revitalising their ancestral beliefs, practices, and languages, including traditional understandings of health and wellbeing. In the Aotearoa (New Zealand) context, a number of ground-breaking Maori health- and wellbeing-related models have emerged, each with their own scope and applications. We sought in our qualitative studies to explore and identify several key sources of wellbeing for Maori individuals. Nine interviews were conducted with members of Maori communities to identify key themes of Maori wellbeing. We performed a Reflexive Thematic Analysis on these data and then conducted a further fifteen interviews to revise, refine, and reposition the previously generated themes. The Ngaruroro model describes wellbeing as the embodied and active process of being well in relation with one's (1) here tangata (social and familial ties), (2) te taiao (the environment), and (3) taonga tuku iho (cultural treasures) while doing what one can to make lifestyle choices that are conducive to the health of one's (4) tinana (body) and (5) wairua (spirit) while cultivating a balanced (6) ngakau (inner-system), fulfilling (7) matea (core needs) and exercising your (8) mana (authority). These themes illustrate that Maori wellbeing is dynamic, interconnected, and holistic.

A 'te ao Maori' disaster risk reduction framework.

An ongoing change in legislation means decision-makers in Aotearoa New Zealand need to incorporate 'matauranga' (Maori knowledge/knowledge system) in central and local government legislation and strategy. This paper develops a 'te ao Maori' (Maori worldview) disaster risk reduction (DRR) framework for non-Maori decision-makers to guide them through this process. This 'interface framework' will function as a Rosetta Stone between the 'two worlds'. It intends to help central and local officials trained in Western knowledge-based disciplines by translating standard DRR concepts into a te ao Maori DRR framework. It draws on previous work examining Maori DRR thinking to create a novel framework that can help these stakeholders when they are converting higher-level theoretical insights from matauranga Maori into more practical 'on the ground' applications. This type of interface is essential: while Indigenous knowledge's utility is increasingly recognised nationally and internationally, a gap remains between this acknowledgement and its practical and applied integration into emergency management legislation and strategy.

Harti Hauora Tamariki: randomised controlled trial protocol for an opportunistic, holistic and family centred approach to improving outcomes for hospitalised children and their families in Aotearoa, New Zealand.

Background: Health and wellbeing inequities between the Indigenous Maori and non-Maori populations in Aotearoa, New Zealand continue to be unresolved. Within this context, and of particular concern, hospitalisations for diseases of poverty are increasing for tamariki Maori (Maori children). To provide hospitalised tamariki Maori, and their whanau (families) comprehensive support, a wellbeing needs assessment; the Harti Hauora Tamariki Tool (The Harti tool) was developed. The purpose of this study is to determine how effective the Harti tool is at identifying wellbeing needs, ensuring the documentation of needs, enabling access to services and improving wellbeing outcomes for tamariki and their whanau. Methods: The study uses a Kaupapa Maori methodology with qualitative and quantitative methods. Qualitative methods include in-depth interviews with whanau. This paper presents an overview of a randomised, two parallel, controlled, single blinded, superiority trial for quantitative evaluation of the Harti programme, and hospital satisfaction with care survey. Participants will be Maori and non-Maori tamariki/children aged 0-4 years admitted acutely to the paediatric medical wards at Waikato Hospital, Hamilton, Aotearoa New Zealand. They will be randomised electronically into the intervention or usual care group. The intervention group will receive usual care in addition to the Harti programme, which includes a 24-section health needs assessment delivered by trained Maori navigators to whanau during the time they are in hospital. The primary endpoint is the relative risk of an acute hospital readmission in the 30 days following discharge for the intervention group patients compared with control group patients. Secondary outcomes include access and utilisation of preventative health services including: oral health care, general practice enrolment, immunisation, healthy home initiatives, smoking cessation and the Well Child Tamariki Ora universal health checks available free of charge for children in Aotearoa New Zealand. Discussion: Randomised controlled trials are a gold standard for measuring efficacy of complex multifaceted interventions and the results will provide high quality evidence for implementing the intervention nationwide. We expect that this study will provide valuable evidence for health services and policy makers who are considering how to improve the configuration of paediatric hospital services. Trial registration: The study is registered with the Australian New Zealand Clinical Trials Registry (ANZCTR), registration number: ACTRN12618001079235.

Working Together to Support Self-Determination for Tangata Kapo (Blind and Low Vision) Maori: An Exemplar.

This paper addresses the marginalisation of tangata kapo Maori (blind and low-vision Indigenous New Zealanders) in health- and vision-related research, despite New Zealand's commitments to international conventions. Utilising a purakau-based approach, it challenges existing colonial narratives and emphasises the importance of Maori perspectives. We advocate for Maori self-determination over research processes. This paper shares insights from a systematic review and the development of a declaration for engaging with tangata kapo Maori, reflecting the 3-year collaborative process. The Materials and Methods section details a Kaupapa Maori-grounded data collection, prioritising relationships and cultural practices. Feedback loops with participants and forums ensure accurate representation. In conclusion, the study underscores NZ government obligations and presents the "3Rs" framework-relationships, respect, and reciprocity-as essential for meaningful research engagements with tangata kapo Maori. The findings contribute valuable insights to guide future research practices, advocating for the inclusion and recognition of tangata kapo Maori rights in practice and research.

Review of Maori equity in surgical trainee selection.

BACKGROUND: The Royal Australasian College of Surgeons (RACS) aims to achieve Maori health equity and cultural safety within the surgical workforce. The RACS Maori Health Strategy and Action Plans encourage Surgical Education and Training (SET) selection criteria that recognizes and credit applicants who identify as Maori or demonstrate competence in Maori health issues. This study investigates the current SET selection criteria for Maori entering surgical specialties. METHODS: The selection criteria for each surgical speciality for the proposed 2024 intake were examined through a documentary analysis. Criteria were reviewed for applicability to Maori identification and/or cultural competency. RESULTS: Criteria related to Maori identification and/or cultural competency make up 6%, 2%, and 1.5% of Otolaryngology and Head and Neck, General, and Vascular Surgery total SET selection score respectively. Criteria related to Maori identification and/or cultural competency make up 9% and 0.1% of Orthopaedic and Plastics and Reconstructive Surgery ranking scores for interview eligibility respectively. Cardiothoracic Surgery, Paediatric Surgery, Neurosurgery and Urology specialties do not incorporate any criteria appertaining to Maori. Allocation of research-related points determined by authorship may disincentivize Maori trainees. CONCLUSIONS: Some surgical specialties fail to recognize or credit Maori identification and cultural competency in SET selection criteria. There is a need for regular auditing to ensure SET criteria align with the RACS aspirations for Maori health equity and cultural safety within the surgical workforce.

Tuakana-teina peer education programme to help Maori elders enhance wellbeing and social connectedness.

BACKGROUND: There are significant inequities between Maori (Indigenous people) and non-Maori in ageing outcomes. This study used a strengths-based approach based on the key cultural concept of mana motuhake (autonomy and self-actualisation) to develop a tuakana-teina (literally older sibling-younger sibling) peer education programme to assist kaumatua (elders) in addressing health and social needs. The purpose of this study was to test the impact on those receiving the programme. Three aims identify the impact on outcomes, resources received and the cost effectiveness of the programme. METHODS: Five Kaupapa Maori (research and services guided by Maori worldviews) iwi (tribe) and community providers implemented the project using a partnership approach. Tuakana (peer educators) had up to six conversations each with up to six teina (peer learners) and shared information related to social and health services. A pre- and post-test, clustered staggered design was the research design. Participants completed a baseline and post-programme assessment of health and mana motuhake measures consistent with Maori worldviews. Open-ended questions on the assessments, five focus groups, and four individual interviews were used for qualitative evaluation. FINDINGS: A total of 113 kaumatua were recruited, and 86 completed the programme. The analysis revealed improvements in health-related quality of life, needing more help with daily tasks, life satisfaction, paying bills and housing problems. Qualitative results supported impacts of the programme on mana motuhake and hauora (holistic health) through providing intangible and tangible resources. Cost-effectiveness analysis showed that the intervention is cost effective, with a cost per QALY of less than the conventional threshold of three times GDP per capita. CONCLUSIONS: A culturally-resonant, strengths-based programme developed through a participatory approach can significantly improve health and social outcomes in a cost-effective way. TRIAL REGISTRY: Clinical trial registry: Trial registration: (ACTRN12620000316909). Prospectively registered 06/03/2020, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379302&isClinicalTrial=False .

Measuring Maori Health, Wellbeing, and Disability in Aotearoa Using a Web-Based Survey Methodology.

High-quality evidence on the prevalence and impact of health, wellbeing, and disability among Maori, and other Indigenous peoples, is crucial for mitigating health inequities. Current surveys are predominantly centred within a biomedical paradigm, with the constructs mismatched with Indigenous worldviews. We aimed to develop and deploy an accessible and culturally grounded survey exploring Maori health, wellbeing, and disability using a Kaupapa Maori Research methodology. An extensive codesign process with Maori community partners interrogated all aspects of the design to ensure the process and outcomes met the needs of Maori. A large-scale, nationally representative survey of people of Maori descent was conducted. We used a multi-modal deployment approach that included online and alternate methods of completion. Our analysis included a novel dual-weighting system to ensure generalisability of results to the national Maori population. This achieved a survey of 7230 participants, a sample size comparable with government-administered surveys. The response rate was 11.1%, with 7.3% opting for alternate methods. A high completion rate of 93.4% was observed. This approach demonstrated a high level of engagement, resulting in an unprecedented collection of Maori health, wellbeing, and disability data. This highlights the importance of Indigenous codesign for ensuring accessible and culturally appropriate survey methods.

Enacting Mana Maori Motuhake during COVID-19 in Aotearoa (New Zealand): "We Weren't Waiting to Be Told What to Do".

Maori, the Indigenous people of Aotearoa (New Zealand), were at the centre of their country's internationally praised COVID-19 response. This paper, which presents the results of qualitative research conducted with 27 Maori health leaders exploring issues impacting the effective delivery of primary health care services to Maori, reports this response. Against a backdrop of dominant system services closing their doors or reducing capacity, iwi, hapu and ropu Maori ('tribal' collectives and Maori groups) immediately collectivised, to deliver culturally embedded, comprehensive COVID-19 responses that served the entire community. The results show how the exceptional and unprecedented circumstances of COVID-19 provided a unique opportunity for iwi, hapu and ropu Maori to authentically activate mana motuhake; self-determination and control over one's destiny. Underpinned by foundational principles of transformative Kaupapa Maori theory, Maori-led COVID-19 responses tangibly demonstrated the outcomes able to be achieved for everyone in Aotearoa when the wider, dominant system was forced to step aside, to be replaced instead with self-determining, collective, Indigenous leadership.

Culturally Safe Neonatal Care: Talking With Health Practitioners Identified as Champions by Indigenous Families.

The burden of health inequities borne by Indigenous peoples can be overwhelming, especially when mothers and newborns' lives are at stake and health services seem slow to invest in responsiveness. In Aotearoa (New Zealand), urgent action is required to eliminate persistent systemic inequities for Maori (Indigenous) whanau (family collectives that extend beyond the household). This Kaupapa Maori (by Maori, for Maori) qualitative study aimed to explore the views of health practitioners identified as champions by whanau of preterm Maori infants. Ten health practitioners were interviewed and asked about their involvement with the whanau, their role in explanations and communication, and their thoughts on whanau coping. Interview data were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: working together in partnership, a problem shared is a problem halved, and sacred space. Collaboration between health practitioners and with whanau was important to the champions and central to their goal of enabling whanau autonomy. This was built on a foundation of connectivity, relationships, and a full appreciation that childbirth is a sacred time that is potentially disrupted when an infant is born prematurely. The values- and relationship-based practices of these champions protected and uplifted whanau. They showed that health practitioners have important roles in both the elimination of inequities and the sustaining of Maori self-determination. This championship is an exemplar of what culturally safe care looks like in day-to-day practice with Maori and is a standard that other health practitioners should be held to.

A Kaupapa Maori conceptualization and efforts to address the needs of the growing precariat in Aotearoa New Zealand: A situated focus on Maori.

In Aotearoa New Zealand, the precariat is populated by at least one in six New Zealanders, with Maori (Indigenous peoples) being over-represented within this emerging social class. For Maori, this socio-economic positioning reflects a colonial legacy spanning 150 years of economic and cultural subjugation, and intergenerational experiences of material, cultural and psychological insecurities. Relating our Kaupapa Maori approach (Maori cultural values and principles underlining research initiatives) to the precariat, this article also draws insights from existing scholarship on social class in psychology and Assemblage Theory in the social sciences to extend present conceptualizations of the Maori precariat. In keeping with the praxis orientation central to our approach, we consider three exemplars of how our research into Maori precarity is mobilized in efforts to inform public deliberations and government policies regarding poverty reduction, humanizing the welfare system and promoting decent work. Note: Aotearoa New Zealand has been popularized within the everyday lexicon of New Zealanders as a political statement of Indigenous rights for Maori.

Nga whakaro hauora Maori o te karu: Maori thoughts and considerations surrounding eye health.

CLINICAL RELEVANCE: Research highlighting Indigenous patient perspectives is essential in the pursuit of understanding and addressing longstanding health inequities. BACKGROUND: Evidence indicates that disparities in ocular health outcomes between Maori and non-Maori are pervasive in the New Zealand health system. Evidence shows the cause of these inequities is often multifactorial; due to factors such as colonisation, ongoing marginalisation, racism, socioeconomic status, poverty and culturally unsafe practice between health professionals and Maori patients. METHODS: This project used kaupapa Maori methodology to identify the perceptions of Maori surrounding ocular healthcare within a Maori context in Aotearoa New Zealand. Three focus groups with Maori community members and three individual interviews with Maori eyecare practitioners were conducted. Participants discussed sub-topics relating to Maori health, ocular health consultations, ocular examination and access to ocular health services in Aotearoa New Zealand. Reflexive thematic analysis was undertaken using NVivo qualitative research software. RESULTS: Five key themes were derived from the data: (1) the importance of effective clinician-patient communication; (2) historical experiences of patients inform their health attitudes; (3) barriers to access are systemic; (4) Maori health is important to Maori and (5) Te Ao Maori, Tikanga and Tapu are significant cultural concepts for Maori. Overall, Maori patients recognise the value of ocular healthcare and the importance of acknowledging Maori models of health within services. CONCLUSION: The key issues Maori patients face within ocular health services resonate strongly with wider concepts intrinsically important to Maori. These are the right to cultural safety within clinical settings, the right to accurate and pertinent communication of information between clinician and patient and the respect of cultural beliefs and acknowledgement of power imbalances within the wider healthcare system. Participant discussions and suggestions raise possible pathways to begin addressing ocular ethnic disparities in healthcare delivery.

Re-orientating health and nursing care: a qualitative study on indigenous conceptualisations of wellbeing.

BACKGROUND: Health systems often fail to address the wellbeing needs of older Indigenous populations; this is attributed to a lack of knowledge of Indigenous health systems arising from a privileging of dominant western biomedical epistemologies. In Aotearoa/New Zealand, there is a dearth of nursing knowledge relating to Maori, which negatively impacts on the provision of holistic nursing care. This research explores insights and perspectives of older Maori adult's (pakeke) perceptions of wellbeing so nurses can provide culturally responsive care and support the wellbeing of Indigenous New Zealanders. METHODS: An Indigenous kaupapa Maori methodology underpinned and directed this research project. Audio-recorded interviews were conducted face to face in participants' homes, marae (meeting house) and workplaces. Pakeke over the age of 55 participated in in-depth interviews. A total of 10 pakeke were interviewed and narratives were thematically analysed in accordance with meanings derived from Maori worldviews. RESULTS: Wellbeing was attributed to the holistic interconnection and balancing of whanau (wider family), whanaungatanga (social connectedness), hinengaro (mental and emotional wellbeing), taha tinana (physical wellbeing) and wairua (spirituality). CONCLUSION: The findings offer unique insights into how wellbeing is constructed for pakeke; the results are unique but consistent with international accounts of older Indigenous peoples. Pakeke wellbeing can be supported by acknowledging existing cultural and spiritual beliefs and peer-support initiatives. Nursing models of care should prioritise Indigenous ways of knowing; this research offers nursing-focused recommendations to improve care.

Prioritizing indigenous health equity in health registers: an environmental scan of strategies for equitable ascertainment and quality data.

BACKGROUND: Cerebral palsy (CP) registers serve as instrumental tools to support development of care pathways, preventative strategies, and health gains. Such health gains, however, are not always universal, with Indigenous health inequities common. To support Indigenous health, health registers need complete, consistent, and high-quality data. The aim of this study was to identify perceived barriers to the ascertainment of Indigenous peoples on health registers and to collate strategies supporting comprehensive ascertainment and achievement of high-quality Indigenous data. METHODS: Environmental scanning methods were utilized within a Kaupapa Maori theoretical framework, which aims to produce research that is transformational and supportive of Indigenous health gain. Knowledge and insights were obtained from CP registers in countries with Indigenous populations and complemented by information from health registers in Aotearoa New Zealand (NZ). Data collection methods included an online survey and scan of organizational websites. Data extraction focused on general information about the register, barriers to ascertainment, and strategies to support ascertainment and high data quality. RESULTS: 52 registers were identified, 20 completed the survey and 19 included in the study (CP registers, n = 10, NZ health registers, n = 9). Web scan data were included for the other 32 registers (CP registers, n = 21, NZ health registers, n = 11). Indigenous health equity was identified in the visions and aims of only two health registers. Ethnicity data collection was identified in nearly three quarters of survey respondents and a limited number of organizational websites. Over half of survey respondents described system, health provider/service, or workforce barriers to ascertainment. Strategies were categorized into collaboration, health provider/service, workforce, and systems-levels. Indigenous-specific strategies were limited and focused on personal behaviour and access to registration. CONCLUSIONS: CP and other health registers can have a significant role in identifying and addressing Indigenous health inequities. However, this is not currently an overt priority for many registers in this study and few registers describe ascertainment and data quality strategies specific to Indigenous peoples. Significant opportunity exists for health registers to be accountable and to implement approaches to support Indigenous health equity, address structural determinants of inequities, and achieve health gain for all.

Indigenous health equity in health register ascertainment and data quality: a narrative review.

BACKGROUND: Health registers play an important role in monitoring distribution of disease and quality of care; however, benefit is limited if ascertainment (i.e., the process of finding and recruiting people on to a register) and data quality (i.e., the accuracy, completeness, reliability, relevance, and timeliness of data) are poor. Indigenous peoples experience significant health inequities globally, yet health data for, and about, Indigenous peoples is often of poor quality. This narrative review aimed to (i) identify perceived barriers for the ascertainment of Indigenous peoples on health registers, and (ii) collate strategies identified and used by health registers to support comprehensive ascertainment and high-quality data for Indigenous peoples. METHODS: A Kaupapa Maori theoretical framework was utilized to guide this work. Four electronic databases were systematically searched for original articles and screened for eligibility. Studies involving health registers with Indigenous population(s) identified were included if either ascertainment or data quality strategies were described. Data extraction focused on the reporting of research involving Indigenous peoples using the CONSIDER checklist domains, ascertainment, and data quality. RESULTS: Seventeen articles were included spanning publication between 1992 and 2020. Aspects of four of eight CONSIDER domains were identified to be included in the reporting of studies. Barriers to ascertainment were themed as relating to 'ethnicity data collection and quality', 'systems and structures', 'health services/health professionals', and 'perceptions of individual and community-level barriers'. Strategies to support ascertainment were categorized as 'collaboration', 'finding people', and 'recruitment processes'. Categorized strategies to support data quality were 'collaboration', 'ethnicity data collection and quality', 'systems-level strategies', and 'health service/health professional-level strategies'. CONCLUSIONS: Poor-quality data for Indigenous peoples in health registers prevents the achievement of health equity and exemplifies inaction in the face of need. When viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly relating to the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. Indigenous led research, meaningful collaboration, and a sharing of knowledge and experiences between health registers is recommended to enable research and health registers that support Indigenous self-determination and health equity.

Human Papillomavirus (HPV) Self-Sampling among Never-and Under-Screened Indigenous Maori, Pacific and Asian Women in Aotearoa New Zealand: A Feasibility Study.

In Aotearoa, New Zealand, the majority of cervical cancer cases occur in women who have never been screened or are under-screened. Wahine Maori, Pacific and Asian women have the lowest rate of cervical screening. Self-sampling for human papillomavirus (HPV-SS) has been shown to increase participation in cervical cancer screening. A whole-of-system approach, driven by evidence in the most effective delivery of HPV-SS, is required to mitigate further widening of the avoidable gap in cervical screening access and outcomes between groups of women in Aotearoa. This single-arm feasibility and acceptability study of HPV self-sampling invited never- and under-screened (≥5 years overdue) 30-69-year-old women from general practices in Auckland, Aotearoa. Eligible women were identified by data matching between the National Cervical Programme (NCSP) Register and practice data. Focus groups were additionally held with eligible wahine Maori, Asian and Pacific women to co-design new patient information materials. Questionnaires on HPV knowledge and post-test experience were offered to women. Our follow-up protocols included shared decision-making principles, and we committed to follow-up ≥90% of women who tested positive for HPV. Data matching identified 366 eligible never- and under-screened wahine Maori, Pacific and Asian women in participating practices. We were only able to contact 114 women, and 17, during the discussion, were found to be ineligible. Identifying and contacting women overdue for a cervical screen was resource-intensive, with a high rate of un-contactability despite multiple attempts. We found the best uptake of self-sampling was at focus groups. Of the total 84 HPV-SS tests, there were five positive results (6%), including one participant with HPV18 who was found to have a cervical Adenocarcinoma at colposcopy. In our feasibility study, self-sampling was acceptable and effective at detecting HPV and preventing cervical cancer in under-screened urban wahine Maori, Pacific and Asian women in Aotearoa. This is the first report of cervical Adenocarcinoma (Grade 1B) as a result of an HPV-18 positive self-sample in Aotearoa. We co-designed new patient information materials taking a health literacy and ethnicity-specific approach. This work provides policy-relevant information to the NCSP on the resources required to implement an effective HPV self-sampling programme to improve equity in national cervical cancer screening.

He Tamariki Kokoti Tau: Families of Indigenous Infants Talk about Their Experiences of Preterm Birth and Neonatal Intensive Care.

Maori (Indigenous peoples of Aotearoa New Zealand) bear an unequal burden of poor perinatal health outcomes, including preterm birth. An infant arriving preterm disrupts the birth imaginary of whanau (family collectives) and situates them in a foreign health environment that may not be culturally safe and nurturing. A cross-sectional interpretative phenomenological analysis of first interviews with 19 whanau participating in a Kaupapa Maori (by, with, for Maori) qualitative longitudinal study of preterm birth identified themes from their experiences and the meanings they attributed to them. Preterm birth was an emotional roller coaster, with the birth imaginary and anticipated roles disrupted as health practitioners took over the care of their infants. Whanau expressed the desire to be close to their infants, holding them, loving them, nurturing them, and emplacing them within whakapapa (genealogy, continual layering of foundations) networks. When health practitioners or hospital policies inhibited this intimacy by isolating, excluding, or discriminating, whanau were frustrated. Being familiar with hospital routines, staff, peers, infant cares, and being wrapped in wider whanau support were key for whanau coping. Whakawhanaungatanga (processes of establishing relationships) create safe spaces for whanau to be themselves. This quietens the 'storm' and returns whanau to a sense of calm, through the reclamation of their environment.

He Tapu Te Whare Tangata (sacred house of humanity): Under-screened Maori women talk about HPV self-testing cervical screening clinical pathways.

OBJECTIVE: To develop an in-depth understanding of HPV self-testing cervical screening clinical pathways for never-/under-screened Maori women. METHODS: Based on a community-based cluster randomized controlled trial in Aotearoa (New Zealand), a Kaupapa Maori (by Maori, for Maori) qualitative study enrolled Maori women who met the eligibility criteria of the HPV trial intervention (aged 25-69 years, no screen in >4 years). In total, 28 were recruited (22 had a negative test, six had a positive test and colposcopy). They were asked about their clinical pathway. RESULTS: The HPV self-test was seen as empowering and promoting bodily autonomy, although some women expressed fears or misconceptions about this new technology. While those with a negative test were relieved, for the six women who had a positive test, there were many fears, compounded by seeking out information on the Internet. When attending colposcopy, the importance of support and responsive care was emphasized. CONCLUSION: HPV self-testing has the potential to improve access to cervical screening and reduce inequities for Maori. Care must be taken in the delivery of screening and colposcopy results. Primary care and colposcopy services need to take special care with never-/under-screened Maori women to provide sensitive, responsive care, and mitigate trauma.