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.

Keywords: Family Centred Care (FCC); Family Integrated Care (FiCare); Kaupapa Māori Research; NICU; cultural competence or cultural safety; family collectives; indigenous health and well-being; maternal care; perinatal care; preterm or premature birth; whānau.