Hapū Ora (pregnancy wellness): Māori research responses from conception, through pregnancy and ‘the first 1000 days’ – a call to action for us all

Figures & data

Table 1. Research summaries.

Kaupapa (study/work)	Description	Learnings
He Tapu Te Whare Tangata: The sacred house of humanity (Adcock et al. 2019, 2021; MacDonald et al. 2021).	Cluster RCT (MacDonald 2021) Māori-led research. Aim to increase cervical screening for under/never-screened Māori women. Intervention arm an HPV self-test and the control arm standard care (a cervical smear).	Māori women in the intervention arm were 2.8 times more likely to be screened than women in the control arm. HPV self-testing, potentially halving the number of under/never-screened Māori women and decreasing cervical morbidity and mortality. Findings are potentially generalisable to other under/never-screened indigenous populations. This study informed the change to the National Cervical Screening Programme anticipated July 2023*.
	Kaupapa Māori qualitative studies exploring the potential acceptability of HPV self-testing for never/under-screened Māori women by Kaupapa Māori mixed methods, involving hui (focus groups/interviews) and survey (Adcock 2019, 2021).	HPV self-testing is acceptable for never/under-screened Māori women. Three in four survey participants signalled that they would accept the self-test if offered it. Self-collected HPV tests remove barriers of whakamā (embarrassment/shyness), bodily autonomy (privacy, control over one’s body) and tapu (sacred/taboo) that Māori women report to experience with standard care. Recommendations made for a culturally competent HPV self-testing cervical cancer prevention programme.
Te Hā o Whānau – a culturally responsive framework of maternity care (Stevenson et al. 2020a, 2020b).	Kaupapa Māori qualitative study in which Māori women and their whānau told their stories following the loss of, or harm to their pēpi to investigate the impact of being transferred to either secondary or tertiary hospitals for care during and/or following birth (Stevenson 2020a).	Māori whanau experienced a lack of Tikanga manaakitanga, Tikanga rangatiratanga and Tikanga whakawhanaunga in maternal-pēpi health care. The absence of Tikanga Māori reflected on Māori feeling powerless compared to health practitioners, unconnected to the place and people, and absence of respect for cultural practices. The study informed the development of Te Hā o Whānau.
	Kaupapa Māori Te Hā o Whānau is a health care framework, developed to aid the maternal-infant health care system becoming a culturally responsive and accessible system to Māori and achieve better health outcomes for all (Stevenson 2020b).	The provision of Te Hā o Whānau will guide the delivery of culturally responsive care for whānau to achieve better maternal-infant health outcomes. Building new pathways inclusive to mātauranga Māori engenders the opportunity to create new, appropriate knowledge and practices to align Māori and Pākehā world views for best outcomes. Pilot currently occurring at Starship Hospital.
E Hine: Reducing Barriers to Care for Pregnant Māori Women under 20 Years and Their Infants (Lawton et al. 2013, 2016; Adcock et al. 2016, 2019b, 2021b; Cram et al. 2021; Dhunna et al. 2021; Stevenson et al. 2016).	E Hine: access to contraception for indigenous Māori teenage mothers focused on contraception access pre- and post-pregnancy Māori-led research. This analysis aimed to identify barriers and facilitators to accessing contraception (Lawton 2016).	There was a marked lack of seamless integrated contraceptive care and provisions for these women both pre-conception and post-partum. Barriers to appropriate contraception occur at systemic and clinical levels. Recommendations following this study included improved service models including immediate post-partum IUCD or implant insertion, and extension of midwifery competencies to include insertion of IUCDs and implants.
	Kaupapa Māori research E Hine: Young Māori women’s journeys through pregnancy, birth, and motherhood explored the longitudinal journeys of 15 of the young women, looking specifically at the transitions that occurred through their journeys during pregnancy, birthing and early motherhood drawing on a Foucauldian theoretical approach (Adcock 2019b).	Young Māori pregnant women and mothers are subject to Eurocentric medical, disciplinary, and colonial gazes –through exclusionary health, education, and social services, and public prejudices – that see them as abnormal and in need of regulation. Often with the support of their whānau, the participants challenged assumptions about teen mothers. They strove to be the best parents that they could be, often re-engaging with education and working hard to provide a positive future for themselves and their children. This study provides an opportunity to improve care for young mothers.
	Kaupapa Māori research E Hine: Young Māori mothers talk about welfare benefits examined the young women’s experiences of accessing welfare benefits through Work and Income when their infants were around two years old (Cram 2021).	Accessing welfare benefits was fraught for these women, with problems ranging from stigma and discrimination to a lack of consistency. The key findings of this study present an opportunity to make changes to Work and Income’s systems to ensure support is provided in a way that is culturally appropriate, easy to navigate, and equitable.
	Kaupapa Māori research E Hine: Talking about Māori teen pregnancy with government groups is a qualitative study that interviewed individuals from across six government agencies (Adcock 2016). It aimed to understand not only what support was available for young Māori mothers, but the attitudes of workers in these agencies, and the structural barriers and facilitators to equitable health care.	Interviews covered both individuals’ views on what their agency did to help young Māori mothers and structural issues. The research found an absence of resources, organization, and mention of Māori in both talk and policy. Recommendations were made to address the barriers in order to successfully deliver policies and initiatives that meet the needs of young Māori mothers and their infants.
	Kaupapa Māori research Lived Realities: Birthing experiences of Māori women under 20 years of age explored the birthing experiences of 16 Māori women (Stevenson 2016).	Four key themes emerged: some tikanga Māori are still practised; whānau support is crucial; system issues impact negatively on birth experiences; and adaptation to motherhood varies. Recommendations made included promoting positive communications between patient and providers, facilitating supportive whānau environments, and enhancing support services accessibility.
	Kaupapa Māori research: Developing a Kaupapa Māori Research project to understand health disparities experienced by young Māori women and their babies and describes consultation to seek agreement for research with young Māori mothers in two regions (Lawton 2013).	Endorsement was gained for strength-based research with young pregnant Māori women and their babies. The engagement processes, consultation and relationship building that were part of the community-led research practices in this study are described and offer information essential for the design of a protocol for an intervention based on whānau ora and can inform policy.
	Kaupapa Māori research ‘It feels real good having my own space’ – Young Māori Mother in the E Hine Study Talk About Housing explored the housing journeys of the 37 young women who remained in the study when their infants were 2–3 years old, using reflexive thematic analysis (Adcock 2021).	Three themes were developed. First, ‘Seeking spatial autonomy: The importance of finding one’s own space to parent’ relates to the importance placed, by the young women, on having their own space. Second, ‘Relational beings: The tensions of relational autonomy for young parents’ attends to the desire of the young women for spatial autonomy while still being embedded within support networks. Finally, ‘Material dilemmas: Aspiring to make a “home” during a housing crisis’ explores the material challenges faced by the young women. The paper calls for urgent action to implement Te Tiriti o Waitangi-compliant housing policy for young whānau – policy that respects their need for autonomy, protects their sense of agency, and allows them to raise their children in a place they can call home.
	Kaupapa Māori research An affront to her Mana: Young Māori mothers’ experiences of intimate partner violence (Dhunna 2021).	This study analysed six narrative interviews from E Hine. Their stories showed the various ways in which young Māori women resist violence, reclaim their Māori identities, and experience personal transformation during their motherhood journeys despite abuse. We find that whānau (extended family) is both a violence-perpetuating and immensely protective factor. Moreover, there are structural and institutional barriers to culturally safe service responsiveness for young Māori women. These come in the form of racism at the frontlines of government agencies, pervasive victim-blaming, and a lack of earnest decolonial structural change at the institutional level.
Severe Acute Maternal Morbidity (SAMM) (Lawton et al. 2010, 2014, 2018; Cram et al. 2018; Lepine et al. 2019; MacDonald et al. 2015, 2016, 2019; Furniss et al. 2018; Geller et al. 2018)	A retrospective audit of 29 cases (pregnant women admitted to a NZ Intensive Care Unit) to describe clinical, socio-demographic characteristics, pregnancy outcomes and preventability Māori-led research (Lawton 2010).	Of the cases 35% were deemed preventable. A recommendation was made for a prospective national severe acute maternal morbidity (SAMM) audit process to be introduced in Aotearoa as a quality of care measure.
	Retrospective audit of 98 SAMM cases in four DHBs during a 17-month period. Cases were reviewed by external multi-disciplinary panels using a validated model for assessing preventability Māori-led research (Lawton 2014)	Of the cases 38.8% were deemed potentially preventable and in a further 36.7% improvement in care was needed. Themes around substandard care related to delay in diagnosis and treatment for postpartum haemorrhage and septicaemia were identified. This study was subsequently expanded to a national New Zealand audit of all SAMM cases admitted to an Intensive Care Unit (ICU)/High Dependency Unit (HDU).
	National retrospective review of pregnant or postpartum women admitted to an ICU/HDU during pregnancy or recent postpartum. Outcomes were rates of SAMM and assessment of potential preventability Māori-led research (Lawton 2018; Lepine 2019; MacDonald 2020)	Multidisciplinary external anonymised review of SAMM (339 cases) showed that over a third of cases were potentially preventable, being due to substandard provider care with increased preventability rates for racial/ethnic minority women.
	Kaupapa Māori research involving nine women who had experienced a SAMM resulting in admission to ICU/HDU (Cram 2018). These unique experiences were captured and gave insight into the lived experiences of the women from their pregnancy to the hospital setting and adjustment to their normal lives again.	The study highlighted the struggles these women had to unexpectedly endure. It highlighted the importance of having whānau and partner support and the adaptations they make to accommodate for the pēpi and the mother. It showcased the discrepancies in information which is shared as most of the mothers heard about their experiences secondhand from their whānau members. These interviews indicate the importance of change at a system level which would include hospital protocols which allow partners to be accommodated on site to care for the baby while the mother is being cared for. The findings are also suggestive of the importance of an understandable explanation by the medical team of their SAMM event.
SAMM Kids (Lawton et al. 2020, 2021).	National retrospective cohort study examining cases of SAMM with an adverse fetal/neonatal outcome Māori-led research (Lawton 2020, 2021). Adverse fetal/neonatal outcomes of mothers who had a SAMM event.	Adverse fetal/neonatal outcome was potentially preventable in 55.3% of cases. Study identified opportunities to improve fetal/neonatal outcomes associated with SAMM.
He Tamariki Kokoti Tau: Families of Indigenous Infants Talk about Their Experiences of Preterm Birth and Neonatal Intensive Care (Adcock et al. 2021)	A cross-sectional interpretative phenomenological analysis of first interviews with 19 whānau participating in a Kaupapa Māori (by, with, for Māori) qualitative longitudinal study of preterm birth (Adcock 2021).	Four superordinate themes were identified. Preterm birth was an emotional roller coaster for whānau, with the birth imaginary and anticipated roles disrupted. Being close to their infants was a key priority for whānau. When health practitioners or hospital policies inhibited this, whānau were frustrated. Being familiar with the hospital environment, infant care, and being wrapped in wider whānau support were key for whānau coping.
He Tamariki Kokoti Tau – Tackling Preterm (Filoche et al. 2018; Edmonds et al. 2021).	A Māori-led research retrospective cohort study of preterm deliveries from 2010 to 2014 exploring neonatal outcomes and infant mortality in relation to the antenatal care pathway and risk factors for preterm delivery.	European women had significantly less risk of having an extremely preterm or very preterm pēpi. European women had a significantly lower rate of neonatal death or postnatal death. These results highlight to us that in the Aotearoa New Zealand maternity system there is a whiteness privilege.
He Korowai Manaaki (Adcock et al. 2019; Lawton et al. 2021).	A prospective study in Te Wairoa of an indigenous-led wraparound maternity care pathway. Informed by Kaupapa Māori research Aka Mātua (a strengths-based asset mapping approach) (Adcock 2019). The aim of this wraparound maternity care pathway is to improve maternal and child health outcomes and improve access to services.	Recruitment commenced in February 2018 and was completed in September 2019. Publication of results is anticipated early 2023.
	A Kuapapa Māori research cluster RCT involving eight primary care practices (Lawton 2021).	The intervention arm is an augmented maternity care pathway (He Korowai Manaaki) offering clinical care through additional paid health care appointments and improved access to social support (e.g. housing, transport). The control arm is usual care. Recruitment commenced in November 2018 and was completed in June 2020. Publication of results is anticipated in late 2023.
Whānau Manaaki: Methamphetamine – a strength-based community approach (Lawton et al. 2019)	Kuapapa Māori research qualitative study brings together experiences of wāhine and whānau along with that of key informants and stakeholders to fill in the knowledge gaps and map existing services and successful interventions.	Underway 2020–22, this study seeks to inform the co-design of intervention and policies to combat methamphetamine harm experienced by women and infants. Publication of results is anticipated late 2022.
A call for action that cannot go to voicemail: research activism to urgently improve indigenous perinatal health and wellbeing (Hickey et al. 2021).	Research activism to urgently improve indigenous perinatal health and wellbeing – an internal collaboration of indigenous researchers. This call-to-action article is designed as a statement to initiate action to support and resource indigenous-led perinatal health services.	This described action research leading change for indigenous perinatal outcomes, embedding indigenous governance, increasing indigenous in the workforce, and improving cultural capabilities which will require resourcing. Support from service providers, policymakers, health service funders, government, and the public to action indigenous-led health services and improve indigenous perinatal health and wellbeing is required.
The lives of women and babies matter: A call for action in Indigenous and First Nations women’s health and wellbeing (Lawton et al. 2021).	Special Issue of the International Journal of Gynecology and Obstetrics. Te Tātai Hauora o Hine researchers were part of the multidisciplinary guest editor team. The special issue included sixteen articles about strengths-based women’s health research, led and conducted by indigenous researchers	The issue highlights the voices of those usually not heard in research, in clinical care, and in health service design, to challenge the norms of women's health care provision and reject the silence and acceptance around indigenous disparities in death and morbidity. The issue called for the urgent transformation of systems and individual behaviours to achieve equitable outcomes for indigenous peoples.
IPVS Policy Statement addressing the burden of HPV disease for indigenous peoples (Lawton et al. 2020a).	International Papilloma Society (IPVS) Policy Statement addressing the burden of HPV disease for indigenous peoples. A call for action. This call for action was developed by the International Indigenous HPV Alliance (IIHpvA) co-chaired by B Lawton.	It states that ‘it is paramount that the HPV research and practice community supports culturally appropriate best practices in research and policy to reduce this burden of disease. This statement outlines the origins of this burden, the fundamental requirement to work with Indigenous peoples to reduce this burden, and makes recommendations for actions.’

*New Zealand Parliament. Health (National Cervical Screening Programme) Amendment Bill – Third Reading 2021. Available from: https://www.parliament.nz/en/pb/hansarddebates/rhr/combined/HansDeb_20210623_20210623_40.

Lepine SJ, Geller SE, Pledger M, Lawton B, MacDonald EJ. 2019. Severe maternal morbidity due to obstetric haemorrhage: potential preventability. Australian and New Zealand Journal of Obstetrics and Gynaecology. 60(2):212–217.

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Furniss M, Conroy M, Filoche S, MacDonald EJ, Geller SE, Lawton B. 2018 Jun. Information, support, and follow-up offered to women who experienced severe maternal morbidity. International Journal of Gynecology & Obstetrics. 141(3):384–388.

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Data availability statement

The data that support the findings of the studies reported here are not publicly available.