Te Ngira Papers

Permanent URI for this collectionhttps://researchcommons.waikato.ac.nz/handle/10289/6536

Te Ngira Institute for Population Research is Aotearoa’s only dedicated population research centre. We carry out world-leading research in the areas of Indigenous demography and data sovereignty, temporary migration and Pacific health equity. Our research is widely used by decision-makers in Te Ao Māori, government agencies, communities, and the private sector to help inform choices and responses to the demographic, social and economic interactions that are shaping Aotearoa’s future.

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Protecting hapū data privacy: A Ngāti Tiipa case study of technology considerations
(Te Ngira Institute for Population Research, 2025-02-11) Clark, Vanessa; Teague, Vanessa
This brief is a part of a series, produced for the Tikanga in Technology (TiNT) research programme, that provides a hapū perspective on data sovereignty, data governance, and data privacy. In this brief we focus on the Ngāti Tiipa ‘layer cake’ technology approach and assess it against the values of the TiNT Māori Data Privacy Framework. This brief should be read in conjunction with TiNT Brief #3 The Māori Data Privacy Framework: How useful is it for hapū?
Hapū data sovereignty: Tips for getting started
(Te Ngira Institute for Population Research, 2025-02-11) Clark, Vanessa; Kukutai, Tahu; Kani, Heeni; Pēpi Tarapa-Dewes, Ella; Teague, Vanessa
This brief is a part of a series, produced for the Tikanga in Technology (TiNT) research programme, that provides a hapū perspective on data sovereignty, data governance, and data privacy. The purpose is to provide practical advice for individuals, whānau, marae and hapū who are embarking on their own hapū data sovereignty kaupapa, with a particular focus on whakapapa data.
The Māori Data Privacy Framework: How useful is it for hapū?
(Te Ngira Institute for Population Research, 2025-02-11) Clark, Vanessa; Kukutai, Tahu; Teague, Vanessa; Kani, Heeni; Pēpi Tarapa-Dewes, Ella
This brief is a part of a series, produced for the Tikanga in Technology (TiNT) research programme, that provides a hapū perspective on data sovereignty, data governance, and data privacy. In this brief we focus on the Māori Data Privacy Framework developed by the TiNT team and assess how useful it is for hapū. To do so, we draw on a case study with Ngāti Tiipa, one of the 33 iwi and hapū of the Waikato confederation (Kukutai, Whitehead & Kani, 2022). This brief should be read in conjunction with TiNT Brief #2 Protecting hapū data privacy: A Ngāti Tiipa case study of technology considerations.
Māori data sovereignty and privacy
(Te Ngira Institute for Population Research, 2023) Kukutai, Tahu; Cassim, Shemana; Clark, Vanessa; Jones, Nicholas; Mika, Jason; Morar, Rhianna; Muru-Lanning, Marama; Pouwhare, Robert; Teague, Vanessa; Tuffery Huria, Lynell; Watts, David; Sterling, Rogena
Privacy is a fundamental human right. One of its most important aspects is information privacy – providing individuals with control over the way in which their personal data is collected, used, disclosed and otherwise handled. Existing information privacy regulation neither recognises nor protects the collective privacy rights of Indigenous peoples. This paper explores Indigenous data privacy, and the challenges and opportunities, in the context of Aotearoa. It has two aims: to identify gaps in existing data privacy approaches with regards to Indigenous data, and to provide a foundation for progressing alternative privacy paradigms. We argue that while personal data protection is necessary, it is insufficient to meet the needs of Māori and Aotearoa more broadly. In so doing, we draw on three areas of research: Indigenous and Māori data sovereignty; data and information privacy, including collective privacy; and Māori and Indigenous privacy perspectives. We examine key features of the Aotearoa privacy context – including the Privacy Act 2020 (NZ) – and consider the implications of te Tiriti o Waitangi and tikanga Māori for alternative privacy approaches. Future options, including legal and extra-legal measures, are proposed.
Te Pūtahitanga: A Tiriti-led science-policy approach for Aotearoa New Zealand
(Ngā Pae o te Māramatanga, 2021-04-28) Kukutai, Tahu; McIntosh, T; Durie, M; Boulton, A; Foster, M; Hutchings, J; Mark-Shadbolt, M; Moewaka Barnes, H; Moko-Mead, TT; Paine, S-J; Pitama, S; Ruru, J
This paper examines the interface between science and policymaking and calls for a policy approach that is enabled by, and responsive to, Te Tiriti o Waitangi and Mātauranga Māori. For a science sector to have its greatest reach and impact for all citizens, it must demonstrate relevance, accessibility and inclusion. In Aotearoa, there has been concern about the exclusion of Māori and Pacific expertise from science advice and key decision-making roles. Te Tiriti offers a powerful framework for connecting systems and communities of knowledge in ways that are mutually beneficial and future focused.
Prevalence of gestational diabetes in the Waikato region of New Zealand
(Wiley, 2022) Chepulis, Lynne Merran; Morison, Brittany; Lawrenson, Ross; Paul, Ryan G.
Gestational diabetes mellitus (GDM) during pregnancy is associated with health complications for both mother and infant, but patient numbers in the Waikato District Health Board region of New Zealand have not been well characterised. This study reviewed the full 2018 cohort of Waikato District Health Board hospital births (n = 4970) to report on GDM prevalence by ethnicity and age. The overall prevalence of GDM was 5.7% and is more likely to affect Asian, Pacific and Māori women as well as those of advanced maternal age.
The COVID-19 domestic vaccine pass: Implications for Māori
(National Institute of Demographic and Economic Analysis, 2021-11-30) Kukutai, Tahu; Clark, Vanessa; Mika, Jason; Muru-Lanning, Marama; Pouwhare, Robert; Sterling, Rogena; Teague, Vanessa; Watts, David; Cassim, Shemana
The New Zealand government has introduced a COVID-19 domestic vaccine pass to be used in conjunction with the COVID-19 Protection Framework. The Framework is likely to be activated soon after Cabinet meets on 29 November 2021. The pass will be necessary to access places and events that require proof of vaccination under the Framework. This brief does not argue for or against the introduction of a domestic vaccine pass, but rather discusses key issues that it raises for Māori, and suggests actions to address them. We see four key issues: • the lack of Māori involvement, as a Tiriti partner, on either the design or implementation of the COVID-19 domestic vaccine pass; • disproportionate restriction on Māori mobility due to lower Māori vaccination rates; • privacy and data security concerns; • uneven implementation that could increase discrimination against Māori and other groups considered to pose a risk to others’ safety. To respond to these issues we recommend that the implementation of the pass be designed in partnership with Māori and comply with Māori data sovereignty requirements. As Tiriti partners, Māori should expect that the pass will keep their communities safe, while providing opportunities to enact manaakitanga in the matrix of care, and the mana to manage their own affairs.
Initial report of the 2018 Census external data quality panel
(Stats NZ, 2019) Bedford, Richard; Reid, Alison; Milne, Barry; Cormack, Donna; Cope, Ian; Cook, Len; Kukutai, Tahu; Lumley, Thomas
One in six New Zealand residents did not complete a questionnaire for the 2018 New Zealand Census of Population and Dwellings. This was largely due to operational failures that made it difficult for a significant number of individuals and households to access census questionnaires, and to fulfill their statutory duty to participate.
Barriers to diabetes self-management in a subset of New Zealand adults with Type 2 diabetes and poor glycaemic control
(Hindawi Ltd, 2021) Chepulis, Lynne Merran; Morison, Brittany; Cassim, Shemana; Norman, Kimberley; Keenan, Rawiri; Paul, Ryan G.; Lawrenson, Ross
Background. Despite the fact that there is an increasingly effective armoury of medications to treat diabetes, many people continue to have substantially elevated blood glucose levels. The purpose of this study was to explore what the barriers to diabetes management are in a cohort of people with diabetes and poor glycaemic control. Methods. Qualitative semistructured interviews were carried out with 10 people with diabetes who had known diabetes and a recent HbA1c of >11.3% (100 mmol/mol) to explore their experiences of barriers to diabetes self-management and glycaemic control. Results. Barriers to diabetes management were based around two key themes: biopsychosocial factors and knowledge about diabetes. Specifically, financial concerns, social stigma, medication side effects, and cognitive impairment due to hyperglycaemia were commonly reported as barriers to medication use. Other barriers included a lack of knowledge about their own condition, poor relationships with healthcare professionals, and a lack of relevant resources to support diet and weight loss. Conclusion. People with diabetes with poor glycaemic control experience many of the same barriers as those reported elsewhere, but also experience issues specifically related to their severe hyperglycaemia. Management of diabetes could be improved via the increased use of patient education and availability of locally relevant resources.
Will access to COVID-19 vaccine in Aotearoa be equitable for priority populations?
(New Zealand Medical Association, 2021) Whitehead, Jesse; Scott, Nina; Atatoa-Carr, Polly; Lawrenson, Ross
AIM: This research examines the equity implications of the geographic distribution of COVID-19 vaccine delivery locations in Aotearoa New Zealand under five potential scenarios: (1) stadium mega-clinics; (2) Community Based Assessment Centres; (3) GP clinics; (4) community pharmacies; and (5) schools. METHOD: We mapped the distribution of Aotearoa New Zealand’s population and the location of potential vaccine delivery facilities under each scenario. Geostatistical techniques identified population clusters for Māori, Pacific peoples and people aged 65 years and over. We calculated travel times between all potential facilities and each Statistical Area 1 in the country. Descriptive statistics indicate the size and proportion of populations that could face significant travel barriers when accessing COVID-19 vaccinations. RESULTS: Several areas with significant travel times to potential vaccine delivery sites were also communities identified as having an elevated risk of COVID-19 disease and severity. All potential scenarios for vaccine delivery, with the exception of schools, resulted in travel barriers for a substantial proportion of the population. Overall, these travel time barriers disproportionately burden Māori, older communities and people living in areas of high socioeconomic deprivation. CONCLUSION: The equitable delivery of COVID-19 vaccines is key to an elimination strategy. However, if current health services and facilities are used without well-designed and supported outreach services, then access to vaccination is likely to be inequitable.
“We’re trying to heal, you know?” A mixed methods analysis of the spatial equity of General Practitioner services in the Waikato District Health Board region
(New Zealand Demographic Society, 2020) Whitehead, Jesse; Pearson, Amber L.; Lawrenson, Ross; Atatoa-Carr, Polly
Inequitable access to health services can cause and exacerbate inequities in health outcomes and should therefore be monitored regularly to ensure that service distributions match population needs. Health service accessibility includes several factors and can be monitored using both quantitative and qualitative methods. We present an exploratory analysis of the spatial equity of general practice services in the Waikato District Health Board region using a mixed methods approach. Geographic Information Systems are used to assess the spatial accessibility of GP services, and in-depth qualitative interviews provide a better understanding of not only where inequities exist, but why they occur.
Psychosocial support needs of women with breast cancer in the Waikato region
(New Zealand Medical Association, 2019) del Mundo-Ramos, Elaine; Blackmore, Tania Louise; Chepulis, Lynne Merran; Lawrenson, Ross
Breast cancer is the most frequently diagnosed cancer among women and the third most common cancer in New Zealand. Despite improved survival rates, significant psychosocial distress is experienced by breast cancer patients. To address this, the Cancer Psychological and Social Support Service (CPSSS) provides supportive care to cancer patients and their families. We aimed to understand the characteristics and psychosocial support needs of women with breast cancer who were referred to the CPSSS at the Waikato District Health Board (WDHB). Breast cancer data from 2016 to 2018 was obtained from the Waikato Breast Cancer Register (WBCR) and compared to psychosocial support referrals from the CPSSS for the same period.
Ha ora: Improving access to early diagnosis of lung cancer for Maori and rural communities. Understanding patient experiences in General Practice
(University of Waikato, 2021) Lawrenson, Ross; Cassim, Shemana; Kidd, Jacquie; Rolleston, Anna; Hokowhitu, Brendan; Chepulis, Lynne Merran; Firth, Melissa; Aitken, Denise; Wong, Janice; Keenan, Rawiri
There were two main objectives for this report. The first was to identify the barriers to early diagnosis of lung cancer experienced by Māori lung cancer patients and whānau. Second was to co-design a multi-pronged intervention alongside rural Māori communities to improve early diagnosis of lung cancer for whānau in their localities. The team worked in the Waikato, Lakes, Bay of Plenty and Tairāwhiti districts of the Midland Region. Semi-structured interviews were carried out with 23 Māori lung cancer patients and whānau recruited through respiratory or cancer nurse specialists (CNSs) based at the hospitals of each district. Nine community hui (focus groups) and nine primary healthcare provider hui were carried out in five rural localities: Te Kuiti, Opōtiki, Te Kaha, Rotorua and Gisborne. Community hui included cancer patients, whānau, and other community members. Healthcare provider hui comprised staff members at the local primary healthcare centre, including General Practitioners and nurses. Study data were thematically analysed. Findings of the study highlight: 1. Barriers in primary care, including symptom ambiguity, accumulating costs, barriers and enablers relating to GP – patient relationships 2. Barriers in secondary care, including a lack of access to diagnostic tests, long waiting times, barriers and enablers relating to communication between HCPs and patients. 3. The importance of whānau as carers and advocates for Māori patients on their lung cancer journey. The interventions co-designed with each community included a Hā Ora website, a series of lung cancer awareness videos (entitled ‘wharo wharo wharo’), a kaiawhina training programme and a ‘pou pupuru oranga’ (cancer navigator). We suggest strategies that aim to improve early diagnosis of lung cancer for rural Māori communities. We welcome your feedback to us regarding these recommendations.
Final report of the 2018 Census External Data Quality Panel
(Stats NZ, 2020) Bedford, Richard; Reid, Alison; Milne, Barry; Cormack, Donna; Cope, Ian; Cook, Len; Kukutai, Tahu; Lumley, Thomas
At the time this report was submitted for publication in January 2020, Stats NZ was finalizing its release schedule for census products that allow users to produce their own tabulations and statistical analyses using census data (see Appendix 2 for a summary of release dates for 2018 Census products). In early 2020, Stats NZ will release 2018 Census data for use in the Data Lab, a distributed set of secure computer sites where users can access, with approval, microdata for research purposes. By March 2020, 2018 Census data will be in the Integrated Data Infrastructure (IDI) and available for use by approved researchers and policy analysts who wish to negotiate access to the IDI.
Family structure and change in early childhood and the wellbeing of tamariki Maori
(Population Association of New Zealand, 2020) Kukutai, Tahu; Prickett, Kate; Atatoa-Carr, Polly; Rata, Arama
Internationally there is growing evidence that family structure, and changes in structure, have an impact on children’s health and wellbeing and the intergenerational transmission of inequity. The effects, however, vary by socio-economic context and ethnicity. Using longitudinal data from Growing Up in New Zealand (n = 1349), we examine family structure and change for tamariki Māori during early childhood, and the potential impacts on their development and wellbeing. We find that a stable two-parent family is the primary experience for tamariki Māori, and sole parenthood is transitory. Diverse family trajectories appear to be linked to poorer cognitive and socio-emotional outcomes but are not the main driver. More important are maternal factors, notably age and education, and material hardship. Importantly, higher levels of cultural connectedness among tamariki Māori, which are associated with diverse family forms, seem to promote socio-emotional development. Our study provides further incentive for policy and programmes that centre equity and support access to the determinants of health for tamariki Māori.
Survivance as narrative identity: Voices from a Ngāti Tiipa oral history project
(2020) Kukutai, Tahu; Mahuika, Nepia; Kani, Heeni; Ewe, Denise; Kukutai, Karu Hura
For Indigenous peoples, and Mäori specifically, storytelling and oral history are crucial to the survival of our collective identities, culture and language. Retold across generations, our stories are often explicit and interwoven narratives of personal and collective memories. Drawing on Native American scholar Gerald Vizenor’s (2009) concept of “survivance stories”, this article explores a set of three oral history narratives of kaumätua from Ngäti Tiipa, one of the 33 iwi and hapü of the Waikato-Tainui confederation. Our analysis reveals how enduring connections to the river and land, the retention of whänau practices and the intergenerational transmission of tüpuna names have shaped contemporary expressions of Ngäti Tiipa identity and belonging. We explore how these testimonies reveal survivance as a repeated theme that has its own nuanced interpretation in individual and collective tribal oral stories.
Hā Ora: Reflecting on a Kaupapa Māori community engaged co-design approach to lung cancer research
(University of Toronto Libraries - UOTL, 2021) Kidd, Jacquie; Cassim, Shemana; Rolleston, Anna; Keenan, Rawiri; Lawrenson, Ross; Sheridan, Nicolette; Warbrick, Isaac; Ngaheu, Janette; Hokowhitu, Brendan
Co-designed research is gaining prominence within the health care space. Community engagement is a key premise of co-design and is also particularly vital when carrying out kaupapa Māori research. Kaupapa Māori describes a “by Māori, for Māori” approach to research in Aotearoa/New Zealand. This article discusses the research process of Hā Ora: a co-design project underpinned by a kaupapa Māori approach. The objective was to explore the barriers to early presentation and diagnosis of lung cancer, barriers identified by Māori. The team worked with four rural Māori communities, with whom we aimed to co-design local interventions that would promote earlier diagnosis of lung cancer. This article highlights and unpacks the complexities of carrying out community- engaged co-design with Māori who live in rural communities. In particular, we draw attention to the importance of flexibility and adaptability in the research process. We highlight issues pertaining to timelines and budgets, and also the intricacies of involving co-governance and advisory groups. Overall, through this article, we argue that health researchers need to prioritise working with and for participants, rather than on them, especially when working with Māori communities.
Hā Ora: secondary care barriers and enablers to early diagnosis of lung cancer for Māori communities.
(2021) Kidd, Jacquie; Cassim, Shemana; Rolleston, Anna; Chepulis, Lynne Merran; Hokowhitu, Brendan; Keenan, Rawiri; Wong, Janice; Firth, Melissa; Middleton, Karen; Aitken, Denise; Lawrenson, Ross
BACKGROUND: Lung Cancer is the leading cause of cancer deaths in Aotearoa New Zealand. Māori communities in particular have higher incidence and mortality rates from Lung Cancer. Diagnosis of lung cancer at an early stage can allow for curative treatment. This project aimed to document the barriers to early diagnosis and treatment of lung cancer in secondary care for Māori communities. METHODS: This project used a kaupapa Māori approach. Nine community hui (focus groups) and nine primary healthcare provider hui were carried out in five rural localities in the Midland region. Community hui included cancer patients, whānau (families), and other community members. Healthcare provider hui comprised staff members at the local primary healthcare centre, including General Practitioners and nurses. Hui data were thematically analysed. RESULTS: Barriers and enablers to early diagnosis of lung cancer were categorised into two broad themes: Specialist services and treatment, and whānau journey. The barriers and enablers that participants experienced in specialist services and treatment related to access to care, engagement with specialists, communication with specialist services and cultural values and respect, whereas barriers and enablers relating to the whānau journey focused on agency and the impact on whānau. CONCLUSIONS: The study highlighted the need to improve communication within and across healthcare services, the importance of understanding the cultural needs of patients and whānau and a health system strategy that meets these needs. Findings also demonstrated the resilience of Māori and the active efforts of whānau as carers to foster health literacy in future generations.
Māori, census 2018 and data sovereignty
(2019) Kukutai, Tahu
This webinar explores the issues with the 2018 Census data collection and examines what the implications could be for communities and funding. See below to read some relevant articles prior to the webinar. Our presenters also discuss iwi data sovereignty and data bias and the reasons why we should all pay more attention to the quality of the data we provide, use and collect.
Psychosocial support needs of women with breast cancer in the Waikato region of New Zealand
(WILEY, 2020) Blackmore, Tania Louise; del Mundo-Ramos, Elaine; Chepulis, Lynne Merran; Lao, Chunhuan; Burrett, Vanessa Mary; McCleery, Jenny; Campbell, Ian; Lawrenson, Ross
Breast cancer (BC) is the most frequently diagnosed cancer among women and the third most common cancer in New Zealand (NZ), with more than 3000 registrations and 600 deaths annually.¹ While survival from BC in NZ is better than many other cancers, Māori women—the indigenous peoples of NZ—have a higher mortality rate than NZ European women.² Therefore, for many NZ women, a BC diagnosis still threatens possible mortality, and frequently results in significant psychosocial distress. Indeed, around 20% to 50% of women with BC will develop anxiety or depression within 1 year of diagnosis.³

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