1. Māori perspectives and positions on perinatal data collection
Stephanie Palmer, (Ngāti Porou)
Director, Tūmana Research
Māori methodologies and how have you applied them in your research?
what is the role of Māori and non-Māori researchers in using Māori health research methodologies?
How can we further encourage the development and use of Māori methodologies within the research sector?

2. PMMRC Main Goal To reduce the number of preventable perinatal and maternal deaths

3. PMMRC Current directions and achievements
to establish a process and system for the collection of data on perinatal deaths
to develop and pilot Rapid Reporting Forms
to train DHB co-ordinators

4. PMMRC Key Issues for Māori – increasing rates
increasing rates for all groups, especially Māori
Source: NZHIS Maternal & Newborn Information
Research strategic plan
inspired by Whakatupuranga Rua Mano, commenced 1975 by Te Wananga o Raukaua
demonstrated it is possible to reclaim te reo me nga tikanga Māori
principal researcher is Ngāti Porou ki Haratanga ki Mataora
Te Āitanga ā Mate, Te Aowera, Te Whānau o Rakairoa
4-5th generation removed from Tairawhiti
majority taura here – come home for tangihanga/holidays
few speakers, kaumatua/kuia passing away
diverse backgrounds/values

5. PMMRC Key issues for Māori – stillbirth
roughly 70% of perinatal deaths are stillbirths
increasing for all groups except European
Source: NZHIS Maternal & Newborn Information,
Methods
kanohi kitea, hui, korero – gathering of information, knowledge
consolidation of vision/consensus/endorsement
Objectives
whānau/hapū/iwi involvement in research
practical application
rejuvenation of cultural base

6. PMMRC Key issues for Māori – causes
biological + social + cultural + environmental + behavioural + economic
integrated, multi-variate, lifespan models to explain relationships between variables
maternal age and socio-economic status are known risk factors for stillbirth in NZ
the vast majority of stillbirths amongst whānau who are most deprived

7. PMMRC Key issues for Māori – causes cont’d
quality of care?
Perinatal Mortality Rates by DHB
Source: Maternal & Newborn INformation 2002, 2003, 2006

8. PMMRC Key issues for Māori – causes cont’d
in 2001, 72% of perinatal deaths were due to “conditions originating in the perinatal period” and 22% were due to “congenital abnormalities” (MoH, 2005)
of 387 fetal deaths in 2001, 54% were “unexplained” (MoH, 2005)
between , the late fetal death rate fell by 49%
79% decrease in intrapartum deaths
70% decrease in congenital anomalities
no decrease in the number of deaths from unspecified conditions (Craig et al, 2004)
call for post-mortems to explain the unspecified deaths

9. PMMRC Likely benefits of participation for Māori
improved knowledge-base on the biological/physiological causes of perinatal mortality
fewer fetal deaths from “unspecified” (uninvestigated) causes
improvements in perinatal care
screening for previously “unspecified” causes
option to terminate?
more obstetric care - early intervention/treatment to prevent death (drugs, technology, monitoring)
expansion of the perinatal mortality data set with opportunities to explore relationships between social, biological, environmental factors

10. PMMRC Likely costs of participation for Māori
more data collection
pressure for consent to post-mortem
separation, photos, invasive techniques
tissue samples, tissue/gene studies
tissue storage/banking (for many years)
likelihood of further unspecified studies, sharing of data/tissues, deidentification
inadequacy of informed consent, consultation procedures
lack of confidence in monitoring, audit, recording, tracking, reporting and data collection systems
normalisation of a medicalised approach to life and death, the globalised identity
focus on the physiological causes of death instead of the experience of death
focus on individual rather than collective needs

11. PMMRC Likely costs of participation for Māori – cont’d
dismantling of core cultural experiences essential to the formation of identity
capacity to deal with birth and death, including miscarriage, stillbirth and the loss of a baby
transmission of whānau-centred rituals and rites
inability to protect ngā tāonga tuku iho - tikanga, whakapapa kōrero, kāwai tūpuna, the cultural capital of future generations
the tikanga around birth and death should be driven by whānau values and beliefs
a general disregard for cultural values - mana, tapu, mauri, whakapapa, whakawhanaungatanga
the continual fragmentation of te whare tangata
few opportunities to contribute to the repository of cultural knowledge, oppression of cultural identity and experience by dominant values and views
the pursuit of knowledge simply because know-how is valued more than know why
a know-why approach enables discussion and debate about the need for knowledge within the context of its implications for culture, human relationships and future generations

12. PMMRC Current initiatives for Māori
Pānui for Māori whānau
objectives of PMMRC
mātauranga Māori perspectives and positions
post-mortem techniques and procedures
opportunity to opt-out
as default position?
few have courage to sign out of process
will opt-out in otherways
Kaitiakitanga
establishment of a kaitiaki group
the protection and promotion of ngā tāonga tuku iho within PMMRC
mechanisms to retain ownership, authority, control and guardianship over Māori health resources – data, tissues and genes
involvement in decision-making about collection, analysis, storage, ownership, access, use and reporting
possible collaboration with established groups – eg cervical cancer registry

13. PMMRC Māori perspectives & issues – whānau ora