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

Abstract

Māori (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 whānau (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 whānau participating in a Kaupapa Māori (by, with, for Māori) 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. Whānau 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, whānau were frustrated. Being familiar with hospital routines, staff, peers, infant cares, and being wrapped in wider whānau support were key for whānau coping. Whakawhanaungatanga (processes of establishing relationships) create safe spaces for whānau to be themselves. This quietens the ‘storm’ and returns whānau to a sense of calm, through the reclamation of their environment.

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research

“…A range of mechanisms across the life of the research project or program, from setting research priorities to ongoing communication to dissemination of results, were described. These included: membership of Indigenous and Tribal people on advisory groups, working groups, steering committees, and governance committees [ 7 , 9 , 10 , 11 , 13 , 14 , 15 , 16 , 23 , 25 , 27 , 30 , 32 , 33 , 34 , 37 ]; involvement of community Elders, other community leaders, and Tribal health centres [ 19 , 25 , 28 , 35 ]; formal and informal partnerships with Aboriginal Community-Controlled Health Organisations, Tribal health services and other community organisations [ 8 , 10 , 14 , 19 , 20 , 22 , 25 , 29 , 30 , 31 ]; hiring and training Indigenous research staff, especially from the relevant community/ies [ 7 , 9 , 10 , 13 , 16 , 18 , 23 , 35 ]; the use of community-based participatory research approaches, co-design, and consumer engagement and involvement [ 12 , 19 , 20 , 23 , 25 , 32 , 33 , 35 ]; and the involvement ...…”

“…In addition to approval by Human Research Ethics Committees and Institutional Review Boards, which are embedded within Western academic institutions, a range of other mechanisms for ensuring appropriate Indigenous and Tribal governance in research were described in the papers included in the Special Issue, such as: approval by a Tribal government, an Indigenous Ethics Committee (e.g., the Aboriginal Health and Medical Research Council’s ethics committee in New South Wales, Australia), or an Aboriginal Community Controlled Health Organisation [ 7 , 8 , 9 , 10 , 12 , 13 , 14 , 16 , 18 , 19 , 22 , 23 , 25 , 28 , 29 , 31 , 35 ]; the use of cultural reference groups and governance committees [ 11 , 13 , 16 , 19 , 23 , 25 , 27 , 33 , 34 ]; and having formal agreed Terms of Reference and/or Resolutions of Support [ 10 , 20 , 29 ].…”

“…An important element of research governance is ensuring the quality of the research, one aspect of which is using an appropriate research methodology. Several papers noted the use of culturally specific approaches, such as Kaupapa Māori research [ 32 , 34 ] and Indigenist research methods [ 8 , 10 , 13 , 16 ]. For example, Adcock and colleagues [ 34 ] used Kaupapa Māori research principles [ 5 , 47 ] to examine the experiences of preterm birth and neonatal intensive care for families of Māori infants.…”

“…Several papers noted the use of culturally specific approaches, such as Kaupapa Māori research [ 32 , 34 ] and Indigenist research methods [ 8 , 10 , 13 , 16 ]. For example, Adcock and colleagues [ 34 ] used Kaupapa Māori research principles [ 5 , 47 ] to examine the experiences of preterm birth and neonatal intensive care for families of Māori infants. Importantly, the research team sought information about both experiences and the cultural meanings ascribed to those experiences, which together can inform appropriate service transformation.…”

“…The resulting Special Issue includes 31 papers in total, with 21 from Australia [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ], 4 from the United States [ 28 , 29 , 30 , 31 ], 3 from Aotearoa/New Zealand [ 32 , 33 , 34 ], 1 from Canada [ 35 ], and 2 from authors in multiple countries [ 36 , 37 ]. This represents a substantial body of research on the health and wellbeing of Indigenous and Tribal peoples, possibly the largest collection ever published.…”