Te Rito o te Harakeke: Whānau Collective Resilience in the Context of Preterm Birth

As the centre of whānau (family collectives), pēpi (infants) and tamariki (children) Māori embody the mana (status) of their tūpuna (ancestors) and the moemoeā (dreams) of their whānau for the future. Yet, persistent perinatal inequities unsettle the fabric of whānau wellbeing. The birth imaginary of whānau is disrupted when a pēpi arrives early (before 37 weeks gestation). This event often situates whānau in a neonatal intensive care unit — a medicalised and culturally unsafe environment — that can set an unsteady trajectory for whānau as they care for their pēpi in the hospital and beyond.

This Kaupapa Māori (by Māori, for Māori) longitudinal research study aimed to identify opportunities for transformative change for health systems and services to be culturally safe for whānau with preterm pēpi. It draws on 85 qualitative interviews conducted with 16 whānau between 2017–2020, following their journeys from the birth of their preterm pēpi until first birthday. The methodology involved journeying with whānau over time, embracing relationality. Accordingly, relationships with participants were a fundamental part of the research. Interviews gained insight from mums, dads, aunts, nannies, great nannies, an uncle, and a friend. Interpretative phenomenological analysis was utilised to develop themes across the data set that related to the experiences of the whānau and the meanings they attributed to them.

Along their preterm care pathways, whānau had to navigate inconsistencies, limited resources, racism, ageism, and hospital systems not designed to cater to whānau as collective units. They demonstrated how collective resilience is enacted by whānau and can be supported by health practitioner champions who prioritise whanaungatanga (connectivity) and become ‘like whānau’ through practices of aroha (love) that uphold the mana of whānau. While whānau expressed hopes for their pēpi making progress and going home, the reality of going home was also challenging. Whānau had to navigate unfamiliar services and felt the need to be vigilant to keep their pēpi safe and well. At the first birthdays of their pēpi, whānau reflected on their journeys. They expressed aroha for their pēpi, taking immense joy in them and pride for what they had been achieving, despite their abrupt arrival into Te Ao Mārama (the physical world). Whānau also shared their hopes for the year ahead, aspiring to regain more of a sense of normal in their lives and holding firm in their tino-rangatiratanga (autonomy, self-determination, sovereignty).

This research sheds light on the lived realities of whānau as they journey along preterm care pathways from birth to one year. Whānau shared generously about their experiences and feelings. The findings show the importance of whānau receiving culturally safe care to enable them to acclimatise to their new ‘normal’ trajectory — as Māori, as whānau collectives. The embrace of the collective is incredibly important for humanising an otherwise dehumanising and highly medicalised and discriminatory journey. Collective resilience on preterm care pathways is a resistance to the isolating, traumatic, and inhospitable aspects of the current maternal-infant health system. Health system champions who recognise whānau expertise and promote whānau tino-rangatiratanga make a world of difference. Health services should listen to these whānau and consider how care provision can be optimised to better support preterm pēpi and their whānau.