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?

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

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

PMMRC Key Issues for Māori – increasing rates increasing rates for all groups, especially Māori Source: NZHIS Maternal & Newborn Information 2000-2003 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

PMMRC Key issues for Māori – stillbirth roughly 70% of perinatal deaths are stillbirths increasing for all groups except European Source: NZHIS Maternal & Newborn Information, 2000-2003 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

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

PMMRC Key issues for Māori – causes cont’d quality of care? Perinatal Mortality Rates by DHB 200-2003 Source: Maternal & Newborn INformation 2002, 2003, 2006

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 1980-1999, 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

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

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

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

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

PMMRC Māori perspectives & issues – whānau ora