He Tamariki Kokoti Tau: Whānau of preterm Māori infants (pēpi) reflect on their journeys from birth to first birthday
ABSTRACT
An infant arriving early disrupts the birth imaginary of whānau (family collectives) and situates them in unfamiliar health environments that may not be culturally safe. Regaining a sense of familiarity enables whānau to cope with their unexpected preterm trajectory. He Tamariki Kokoti Tau: Babies Born Prematurely was the first Kaupapa Māori prospective qualitative longitudinal study to explore these trajectories, walking alongside whānau from birth to first birthday. This interpretative phenomenological analysis explores the final ‘first birthday’ interviews with 16 whānau. Concerns that had been raw in early days of neonatal intensive care carried over – frustrating whānau yet strengthening their resolve to support each other. Whānau described how they enacted resilience together, with their whānau collective including health practitioner champions who became ‘like whānau’ by virtue of their culturally responsive care. While pēpi (infants) continued to experience health issues, whānau felt hopeful for the year ahead. They expressed love, joy, and pride for their pēpi as the centre of their whānau. Whānau are experts of their pēpi, and healthcare champions who recognise this and promote whānau tino-rangatiratanga (autonomy) make a world of difference. Health services can learn from these whānau, about how to better support preterm care pathways for Māori.
Background
Unuhia te rito o te harakeke, kei hea te kōmako e kō? Ui mai ki ahau, ‘He aha te mea nui o te Ao?’ Māku e kī atu, ‘He tangata, he tangata, he tangata!’
Pēpi (infants), as the centre of Māori whānau (kinship collectives), embody the mana (status) of their ancestors and the moemoeā (dreams) of their whānau (Pere 1997; Gabel 2013; Pihama et al. 2019). Pēpi are crucial strands in the taura whiri (plaited rope) that ensures the vitality and sustainability of whānau, hapū (subtribe) and Iwi (tribe) through shared whakapapa (genealogy) and ties to whenua (land) (Pere 1989). In the above whakatauākī (proverb), the pēpi is te rito, the new growth, that must be safeguarded by parent and ancestor leaves if the harakeke (flax) is to flourish. The kōmako (bellbird), that would have nowhere to perch if not for te rito, is viewed here as the immense potential contained within taonga tuku iho (gifts passed down through generations); for example, te reo Māori (Māori language), pūrākau (stories), Mātauranga Māori (Māori knowledges), and whenua (land) (Mead 2003). The message is clear that nurturing and protecting the well-being of pēpi is imperative if the potential of ancestral gifts is to be realised for them, so that Māori ways of being, knowing and doing are sustained (Pihama et al. 2019).
The arrival of a new pēpi is a much-anticipated event for whānau and it is normal for pēpi and their parents to be looked after by their relations (Pere 1989; Gabel 2013; Moewaka Barnes et al. 2013; Mikaere 2017). Mead (p. 166) calls this caring, kinship network ‘the basic building block of the whole social system’ (Mead 2003). It is whānau that welcomes a new pēpi to Te Ao Mārama (the physical world) through cultural practices that include karakia (chanting), oriori (lullabies), and karanga (calling forth). Whenua ki te whenua, the gathering of the whenua (placenta) for its return to the whenua (land), also connects pēpi to Papatūānuku (their primordial Earth Mother) and their other human and non-human ancestors (Mead 2003; Moewaka Barnes et al. 2013; Mikaere 2017). While whānau collectives have persisted as a way Māori organise their social world (Smith 1996), whānau are by no means homogenous (Smith 1995). Social, economic, and cultural circumstances impact upon the lives of whānau, as do unanticipated events that necessitate whānau engaging with a health care system that is notoriously inhospitable (Cram et al. 2019; Palmer et al. 2019; McBride-Henry et al. 2020), and where being Pākehā (New Zealand European) is privileged (Waitangi Tribunal 2019; Edmonds et al. 2021; Waitangi Tribunal 2021; Dawson et al. 2022).
Each year around 1200 Māori pēpi arrive too soon (before 37 weeks gestation) [9]. Their preterm birth is a disruption in the lives of whānau who were anticipating a ‘normal’ birthing experience (Thompson 2009; Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010; Stevenson 2018). This disruption may include an emergency delivery and the transfer of mother and pēpi to a tertiary hospital so that the pēpi can be cared for in a neonatal intensive care unit (NICU), where parents hand over care for their pēpi to health practitioners (Thompson 2009; Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010; Stevenson et al. 2020; Adcock et al. 2021). Whether or not mother and pēpi are transferred and dislocated from their support networks and home or are cared for locally, the unfamiliar environment of the NICU and hospital can be intimidating and stressful (Thompson 2009; Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010; Stevenson et al. 2020; Adcock et al. 2021). Positive communication by health practitioners and whānau collective support are key to well-being when experiencing the trauma of an adverse perinatal event (Thompson 2009; Stevenson 2018). Regaining a sense of familiarity, expertise, a new normal, enables whānau to cope with their unexpected preterm trajectory, a reclamation of their environment (Adcock et al. 2021).
An ultimate disruption, to whānau and whakapapa, is when a preterm pēpi dies, a trauma that Māori whānau experience at disproportionate rates (PMMRC 2021). This trauma is compounded when care is not culturally responsive (Stevenson 2018). Follow-up after bereavement can be an issue due to lack of funding and where whānau have been transferred from another town/city/region (Coombs et al. 2017). When a pēpi survives, the transition home for NICU graduates (pēpi discharged from NICU) can be hard (Thompson 2009). This transition is documented in international literature as being complex. Parents can experience acute stress disorder and post-traumatic stress disorder, even two–three years after birth (Åhlund et al. 2009). This could be moderated by better communication, support systems, and resourcing (Garfield et al. 2014; Franck et al. 2017; Berman et al. 2019; Hannan et al. 2020; Hebballi et al. 2021). For example, neonatal home care, or home visits (Dellenmark-Blom and Wigert 2014; dos Santos et al. 2014; Hannan et al. 2020).
When looking back, families in international studies have reflected on previous challenges and expressed worries about ongoing or potential future health issues (Jackson et al. 2003; Dellenmark-Blom and Wigert 2014; Sheeran et al. 2015; Ireland et al. 2019; Baraldi et al. 2020). Preterm pēpi are more likely to experience harm or disability that may last a lifetime (March of Dimes et al. 2012; Chang et al. 2013). This can be compounded by the reality that, for many of these families, hospital readmissions are frequent causing more stress, especially when inequities in access are experienced (Hannan et al. 2020). However, being home can also gradually encourage feelings of resilience, confidence, autonomy and connection for parents of NICU graduates (Jackson et al. 2003; Dellenmark-Blom and Wigert 2014; Sheeran et al. 2015; Ireland et al. 2019). Stevenson (2018) found that when Māori whānau are finally able to take their pēpi home to their places of belonging following an adverse perinatal event, there is a sense of relief and reclaiming their whānau autonomy.
More research on transitions home and longitudinal explorations of preterm birth with Māori whānau is needed in Aotearoa to inform health service delivery (Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010; Simmonds 2014). He Tamariki Kokoti Tau (babies born prematurely) was the first Kaupapa Māori prospective qualitative longitudinal research study to explore these trajectories, walking alongside whānau of preterm Māori pēpi from the birth of their precious taonga (gift) to first birthday (Adcock et al. 2021). This paper presents an interpretative phenomenological analysis of the final ‘first birthday’ interviews with 16 whānau collectives, exploring how they have processed their previous year’s experiences as well as their hopes for the future.
Methodology
Aim of He Tamariki Kokoti Tau
To give voice to the experiences, views, and attributions of parents and whānau of preterm Māori pēpi (and their health practitioners), to inform service transformation.
Kaupapa Māori research
Kaupapa Māori Research challenges the status quo of blaming Māori for health inequities, and prioritises the aspirations of Māori whānau, hapū, and Iwi (Smith 1997; Smith 2021). It does this through the privileging of Māori ontologies, epistemologies, axiologies, and methodologies that are relational (Smith 1997; Henry and Pene 2001; Smith 2021).
Being Kaupapa Māori Research, this study was developed with guidance from a Kāhui Kaumātua (Council of Elders) and Rōpū Māmā (Mothers with lived experience of preterm birth advisory group), who helped ensure the research was undertaken in a culturally and contextually appropriate way. All four investigators/authors are Māori (AA is an early career Māori researcher and doctoral student; FC, LE, and BL are senior Māori researchers/clinicians who supervise and mentor AA). These collaborations enabled the centring of Māori ways of being, knowing, doing, and relating that prioritise whānau and whanaungatanga (relationship building, kinship).
To invoke the whakatauākī at the beginning of this paper (Royal 2007) – whānau are collective and interdependent units. This is normal and should be normalised through system transformation. Hence, this study sought to involve whānau collectives, the people who wrapped support around the preterm pēpi and their parents, including those who may not be kin.
Ethics
The Health and Disability Ethics Committee (17/NTB/7) and participating district health boards (DHBs) approved the study and all participants consented.
Participants
All parents, whānau, and health practitioners (recommended by whānau) of preterm Māori pēpi (born 24+0–36+6 weeks gestation) admitted to NICU in four DHBs (Counties Manukau, Waikato, Capital & Coast, Southern) were eligible to participate. Whānau were first approached by a health practitioner for their permission for a researcher to contact them.
Nineteen whānau collectives (19 mothers, 9 fathers, 13 non-parent whānau) of 21 preterm Māori pēpi (including two sets of twins) were recruited. Recruitment processes and findings from the first interviews have been reported elsewhere (Adcock et al. 2021).
Sixteen whānau collectives of 18 pēpi (84% of the whānau collectives) remained in the study longitudinally, completing 3–6 interviews over approximately 12 months. Sadly, one whānau experienced the death of a preterm pēpi in the postneonatal period. Another whānau lost a pēpi (just prior to what is considered a periviable gestation) in the 12 months following the birth of their preterm pēpi. Fifteen mothers, three fathers, three grandmothers, and one great grandmother took part in the final ‘first birthday’ interviews for the 16 whānau collectives. provides brief information about pēpi and whānau using pseudonyms.
Table 1. Pēpi and whānau information.
Interviews
Engagement with whānau followed Māori rituals of encounter that strengthened whanaungatanga (Cram 2001). The ‘first birthday’ interviews were conducted at times and locations suitable for each whānau. Interviews were conversational, with whānau asked about: their journey, explanations they had been given, feelings and coping, and system responsiveness. Interviews were usually audio-recorded and transcribed, or extensive hand-written notes were made (e.g. because of background noise). Whānau were invited to review and provide feedback on their information.
Analysis
This paper presents an interpretative phenomenological analysis (IPA) of the first birthday interviews with whānau. IPA is concerned with how people make sense of their lives, particularly when experiencing a phenomenon – often a significant or important event (Smith et al. 2009). It draws on phenomenology (experience), hermeneutics (interpretation), and idiography (the particular) to understand the complexity and nuance of lived experience and relatedness (Smith et al. 2009), making it compatible with Kaupapa Māori Research (Jones et al. 2013; Stevenson et al. 2020). Interview data were read and reread, with descriptive and increasingly more interpretative notes made. Emergent themes were created, chunked and re-ordered, and then organised into superordinate and subordinate themes (Smith et al. 2009).
Results
The results are organised into five superordinate themes, taken from participant quotes, each with three subthemes (). In the first superordinate theme, ‘Going back downhill again’: Caring for NICU graduates, we discuss the ups and downs of life after NICU and how whānau respond to adversity with strength and vigilance. The second superordinate theme, ‘Probably “cause … we’re Māori’: Being ‘othered’ by health services, explores how whānau carry the burden of negative neonatal health service experiences long after they leave. In the third superordinate theme, ‘We were just like, never mind’: Overly complicated processes, whānau recall frustration with bureaucratic processes for accessing support while their pēpi were in NICU. The fourth superordinate theme, ‘I’ll ask my sister’: Whanaungatanga, emphasises the importance of supportive and meaningful relationships for whānau of preterm pēpi inside the NICU and beyond. Finally, in the fifth superordinate theme, ‘No point dwelling on it’: Celebration, reflection, and looking forward, whānau simultaneously celebrate the present while reflecting on their journeys with pride and looking forward with love and joy for what is to come. Whānau narratives are used to illustrate each subordinate theme.
Table 2. Superordinate themes and subordinate themes.
‘Going back downhill again’: Caring for NICU graduates
After going home, all pēpi experienced ongoing health issues throughout their first year of life. Predominantly these related to respiratory systems, from asthma to chronic lung disease, and hospitalisations for bronchiolitis. Some pēpi had gastrointestinal issues, from difficulty digesting certain foods to necrotising enterocolitis. Many pēpi had surgery, or were awaiting surgery, for their vision, hearing, hernias, and/or talipes. For some, organs like the heart, kidneys, or liver were being monitored. Stress from ongoing health concerns was exacerbated for whānau when decisions needed to be made around where they lived and their work and study priorities, and financial security.
Whānau vigilance
Whānau often described the health of their pēpi over that first year as a roller coaster, with pēpi frequently requiring hospital care for acute or chronic issues. Whānau adjusted to the sometimes-complex needs of their pēpi, becoming experts in their care and what their ‘normal’ looked like. They remained vigilant, identifying issues quickly when anything seemed abnormal or off. The following Pīwaiwaka whānau narrative exemplifies the attention paid by whānau to changes that were then quickly acted upon.
Mother: I just noticed his breathing rate was a lot heavier than usual, so I called Healthline again and we sat on the phone together and counted his breaths and stuff. And they said, ‘Look, that's not really really alarmingly high, but it’s higher than normal, so take him in [to A&E] and have him seen just for your own peace of mind.’ I think it was about 11.00pm, which seems to be the when things break, go bad time. But they admitted us, and we were in for two days and then straight back out again, straight back to being perfectly healthy… There’s been one more [admission] since then though. About two weeks after that. Every three weeks he seems to perk up and get better and then he’s going back downhill again with the same sort of symptoms as before – the heavy breathing, the raspy breath.
Prioritised pēpi, tired parents
While whānau coped with caring for their pēpi with increased health needs, this often took a toll on their own health and well-being. Whānau talked about not having time to be sick themselves, or, really, to rest and recover. They would forgo their own medical needs. They talked about the stress, worry, concern, and feelings of helplessness when their pēpi were unwell. Toutouwai whānau Mother, for example, talked about not eating or drinking from stress when her pēpi was in hospital.
Mother: When I feel more stressed about [pēpi], like I don’t eat, I don’t drink or anything. I was more stressed on his health [when he was in hospital], so my mother brought food and everything up to me and made me eat right in front of her. Because she knows I don’t eat or anything when he's sick ‘cause I worry about him, ‘cause if he doesn’t eat I don’t eat.
Fears left unabated
After experiencing preterm birth, mothers worried that they might deliver early again. For some whānau, it was fear for their preterm pēpi and ongoing health conditions that caused concern, especially if they had not been given answers or information in a way they understood. Tākapu whānau Mother, who was pregnant again, wondered if something was wrong with her body and how that might impact her next pēpi.
Mother: [Midwife] said something like, they probably won't be able to do anything that could help the situation because, you know, it's already happening so they can’t really change it. But it would be nice to know what's actually going on ‘cause this is like my second pregnancy and already my first one I had quite a bit of complications. And then just wondering whether it’s gonna be the same throughout this pregnancy, because then that scares me for every pregnancy I’ll have really.
‘Probably ‘cause … we’re Māori’: Being ‘othered’ by health services
Whānau revisited experiences of racism, ageism, judgement about their living situation and perceived care for their pēpi, and other microaggressions and isolation by health service staff that had tainted their preterm care pathways. A participant (Kākāriki whānau Mother), who experienced the death of a pēpi, described these microaggressions as making her feel ‘ugly’ – adding to her grief. Whānau highlighted how the resulting feelings of powerlessness, inadequacy, and being othered can settle with whānau and follow them into the future.
Treated differently
Some whānau talked about situations where they were treated differently because they are Māori, and the frustration this caused. For example, Kōmako whānau Father talked about health practitioners only policing the number of visitors they had, while Pākehā families were not challenged.
Father: They had a bit of a three in at a time, but the parents, mother and dad were in there, they counted as two people. They don’t say it could be like three visitors and then the parents were with them. But I found it a bit stupid ‘cause at some point there were other cubicles where both the parents were in there and they had four or five people in there, but they walked straight past them come to us and, ‘Oh you’re only allowed three people in there.’ And there was one cubicle with five or six. We only had four…
AA: Do you have any feelings about why they were telling you that you were only allowed three people but not other people?
Father: Probably ‘cause the other people were White and we’re Māori.
Talked down to
Some young whānau described health practitioners having low expectations of them and talking to them like they did not know anything. This disrupted their autonomy as whānau. Even when health practitioners made ‘compliments’ about how ‘good’ whānau were despite their age, this was not constructive. Tieke whānau Mother talked about being called a baby herself, which she associated with them thinking young people are not responsible.
Mother: Every time I said my age they were like, ‘Oh you’re still a baby,’ and stuff like that. But I think they were more shocked at how present I was during that time ‘cause, you know, I’d be there from 9:30 ‘til 8:30 at night every day. Yeah, I think maybe just more shocked at the effort I was putting in.
Isolation
Whānau talked about their lack of autonomy when handing over the care of their pēpi to health practitioners, their concerns about doing things wrong, and how they questioned themselves. Whānau wanted to be able to parent as a collective whānau unit, not just as mother and (sometimes) father. When parents were isolated from their whānau they needed to feel connected and looked after by health services, which did not always happen. When Kūaka whānau Mother recalled the trauma of losing a pēpi after her first experience of preterm birth, she talked about feeling isolated and upset by a lack of care in the hospital. It took her mother coming and questioning staff for her to be moved back to where the ‘normal’ births were happening.
Mother: They just left me in there by myself and I was waiting for my mother to come… It was dark. The corridor was dark. There were no lights on. It was a shit feeling and to see three beds over in that corner and then two bassinets over there felt real upsetting. Like, oh this is just their storage room where they keep all their extra things… When [my mother] came, she was trying to look for someone so they could explain it to her… It was a bit shit. Even my mother was so mad… Like you’re only 22 weeks pregnant, sorry we can't do anything about you so we’re just gonna leave you over there, and that's how it feels. That's how I felt. It was really quite upsetting.
‘We were just like, never mind’: overly complicated processes
Whānau reflected on overly complicated processes for accessing financial or social support following preterm birth, and the difficulties they experienced in accessing body tissue to take home, such as whenua (placentas).
Jumping through hoops
Some whānau felt like they had to jump through hoops to provide all the evidence and documentation needed to access entitlements and when they looked back on these experiences, they questioned the intentions of policies and policy makers. Other whānau only found out later the financial or social support they had been entitled to and not been told about. For example, Kōmako whānau knew about the National Travel Assistance policy (NTA), but said it was ‘useless’ because it was hard to get and not timely.
Mother: [NTA] was sorted, but they're useless man, and ‘cause it doesn't come in ‘till later on. I think you’re waiting about three or four weeks by the time they receive the paperwork and check that everything's been signed and what not.
Father: Almost three months later we get the money. Sometimes by then you’re ready to go home…
Great Grandmother: You’re ready to go. But you know, funding, it’s their way of not paying it in the end. If they don’t have to, they won't. That's why they take so long. And when they know that a baby is two, three, four months early, they know it’s gonna stay in hospital forever. So why muck around and make people wait and give more stress to the parents and whānau?
Giving up on entitlements
Sometimes, the many hoops that whānau had to jump through meant that they just gave up seeking the support that they were entitled to, because they did not have the energy to fight outside the immediate medical needs of their pēpi. Others gave up because they were close to being discharged or had already returned home and did not have the required documentation. Tieke whānau Mother talked about not being able to access financial assistance because she needed the hospital social worker to write a letter proving that she had given birth early.
Mother: Accessing the social workers on the wards is so hard. Just even for stuff like that, for help. Every day it was like, ‘Oh no she’s gone home,’ …I don’t think I saw a social worker until I was two and a half months in… All I needed was for her to write a letter [for Studylink] saying that [pēpi] was in hospital and it took two and a half months, and by the time that happened he’s already so close to being out that we just didn’t bother. We were just like, never mind.
Taonga tuku iho disrupted
Whenua ki te whenua — returning the whenua (placenta) of their pēpi to the whenua (land), was an important practice. For those whānau who had pēpi that required surgery, returning removed tissue to the whenua was sometimes an important practice too. Getting such tapu (sacred) tissue back was often challenging. For some whānau, the hospital where they gave birth had lost their whenua or sent it for testing and had not returned it before whānau returned to their home places. When it was returned, some whānau expressed concerns about what chemicals their whenua had been treated with when sent for testing. Difficulties accessing whenua and other tissue were discussed, with some whānau having to go to the morgue or a site outside of the hospital. Transporting tapu tissue home was also a concern for whānau who did not want it stored or transported with noa (everyday) items. The Kōtuku whānau narrative below highlights some of these struggles.
Mother: So on the day we were being transferred back to [home town], the days leading up to that I’d been reminded to grab the whenua. I wasn’t too sure where it was all being stored so I had to do a bit of asking around between the midwife and the maternity ward, and then I got an address in [the city] that I was to go to… So yes, on the morning when I got the call that they were gonna leave at a certain time, then I timed it to when I picked the whenua up, and I wasn’t too sure what I was even gonna get… So, when I got there it was in a lab or something like that, and off site. So, I took that back, but then I was like, ‘Oh where can I sit this till we go? Or, you know, I didn’t want to mix it in with clothes and kai [food] and other things. So, I made a wee bag to the side and made sure, if anything, that would come with me ‘cause some of my gear had to be left behind because there wasn’t enough room in the ambulance.
‘I’ll ask my sister’: Whanaungatanga
People working in health and other support services, whānau members, peers, and partners played a vital role in supporting parents of these preterm pēpi, helping them get through gut wrenching, tiring, and confusing/frustrating times.
Health practitioner champions
Whānau recalled certain health care practitioners who made their journey easier. These health practitioner ‘champions’ looked after the medical needs of the pēpi and supported the physical and social needs of whānau. This included keeping whānau informed, including whānau in decision-making, and giving good advice without judgement. Some whānau talked about how their health practitioner champions had helped to alleviate guilt that they had around the circumstances of the preterm birth, worrying that previous terminations or lifestyle choices had made their pēpi unwell. For example, Pūkeko whānau Mother got emotional when she remembered how a doctor had given her reassurance. Health practitioner champions, like this doctor, became an important part of the lives of whānau, and were remembered for their support long after whānau returned home.
Mother: As soon as they told me baby was sick I did all this, ‘Is this ‘cause I had that, I did this?’ I threw everything at them. ‘Could it be because of this?’… It was doctor [name] that was like, ‘No, look, stop Mum, you gotta stop blaming yourself ‘cause this is not anyone’s fault. You could have had the most perfect pregnancy and then last-minute, boom, your baby’s born with this, so it’s no-one’s fault. You just have to get through this hard step and hopefully with the strength of your family you can get her through this.’ And so that’s why I had to try and retrain my thoughts.
Strengthening partnerships
Parenting their preterm pēpi was often an opportunity to strengthen relationships as parents worked together, whether or not they were together romantically. Where interpersonal violence during pregnancy had resulted in separation and court involvement, over time the desire for both parents and wider whānau to be a part of the lives of their pēpi helped support amicable relationships. In other cases, where romantic relationships had been new or rocky beforehand, the need to support each other through the trials and tribulations of raising a preterm pēpi brought parents together. Tākapu whānau Mother talked about her maturing relationship with her partner as they prepared for the birth of their second child. They were able to negotiate their roles and carve out space for themselves while supporting each other.
Mother: We’ve been doing really good, like we haven’t even been arguing, and it’s been like months that we’ve actually had an argument and that. And I think my family’s shocked, because, like when we first were together we were like arguing all the time, and just like constantly in each other’s face. And now it’s just like we’re doing really good, and like he doesn’t even want to go see his friends or anything, like he just wants to stay home and then helps me if I’m tired from boy, like he looks after him. So, it’s been really nice ‘cause you know I’m getting a bit of free time, he’s getting his free time.
Whānau collective resilience
At the first birthday of their pēpi, most parents were still together, often living with other whānau and older children (if they had them). Some parents had separated, with the mother taking on main caregiving responsibilities (except in one case), usually supported by other whānau members. If there was conflict, such as from stress and its impact on parents’ mental health, or from unequal caring roles, whānau usually stepped in to help. Whānau provided financial, childcare, and housing support, as well as emotional support at home and when parents engaged with social and health services. The importance of connectivity for wrapping support around parents was emphasised. When parenting without a partner’s help, whānau support was all the more important. For example, when Tūī whānau Father became the main caregiver of his pēpi, he relied on his sister’s help for frequent medical appointments, as medical jargon left him confused.
Father: I don’t even take him to appointments. My sister does. Sometimes I don’t understand what they’re saying, so I just send my sister and she just comes back and tells me in a more simpler way. Sometimes they use big massive words. I don’t understand them, like what does that mean? And they tell me what it means, like, why didn’t you say that in the beginning instead of using a big massive word that you know I’m gonna ask you what the hell that means? Sometimes I’ll ask them if I don’t understand, or, 'Oh yes all good, 'and then once I get home I’ll ask my sister.
‘No point dwelling on it’: celebration, reflection, and looking forward
First birthdays were a cause for celebrating the journey, even for those whānau who spent this birthday day in hospital or delayed festivities due to illness. Whānau spoke of the love and pride they felt for their pēpi, the progress that they had made, and their aspirations for the future.
First birthday as a milestone
Reaching the first birthday was a milestone, with whānau taking pride in the immense progress of their pēpi. Parents spoke lovingly about the personalities/characters of their pēpi. All pēpi had some teeth and were eating solids, with breast milk and/or formula usually topping them up. Although sometimes delayed, milestones, such as teething, crawling, walking, and communicating were considered wins, with whānau talking in relative terms like ‘corrected age’. Whānau often remarked on how impressed their primary health care providers were with their pēpi given their preterm status, and this too filled them with pride. The following Pītoitoi whānau narrative exemplifies this.
Mother: Just watching him grow is awesome, it goes by so quickly. And he’s really intelligent. I love that. ‘Cause normally we have the chairs up blocking him from walking in the kitchen, and he already learned how to push them out of the way. He pushes them out of the way, and he crawls around. It’s really good watching him figure things out… In the Plunket book it’s got like milestones and stuff… He’s supposed to be like a month behind. He seems to be normal to me. So, if he was born on his actual date he would have been walking early, before one.
Love for pēpi
The love and pride whānau felt for their pēpi and the challenges they had overcome, and, the milestones they had reached, made them happy. This made their journeys seem worthwhile. Even looking back on the trauma of preterm birth, whānau did not dwell in that trauma. For Takahē whānau Mother below, despite how scary the journey had been, she said that she would not take it back.
Mother: There’s no point me dwelling on it, because I look at him now, and I know you is fine [to pēpi]. Like I remember when I was sitting in hospital pregnant and everything wasn’t going as well, and they said, ‘We’re gonna have to go in for a c-section now.’ And I remember that they went away and mum was in the room, and I rung nan and I rung [partner]. I just remember at that point, I was like real emotional because… There was a chance because he was gonna be little that he may not make it. So, it was real scary. But then I think back, like I think about it now, and like everything that we went through, I probably wouldn’t change it, because like I’d go through all that again for him.
Looking forward
The first birthday of their pēpi was also a time for whānau to look ahead to the future, especially for parents thinking about how their pēpi had matured, was more resilient, and needed less hands-on care. There was reflection on the journey that they had been on and more pride in everything that had been overcome. Mothers and fathers talked about looking for new work or study opportunities and starting their pēpi in childcare/early childhood education if they had delayed this due to concerns about their immune systems. For example, Kōtuku whānau Mother, who had decided to permanently leave her demanding job after she had her preterm pēpi, was looking forward to getting back to work in a new, not yet decided, role.
Mother: I look back, and what a year it’s been, with its ups and downs, and being surrounded by some great people, and she’s done really well. She’s such a wee fighter. So, I’ve gotta make some resolutions. I was gonna get my feet back on the ground myself, get back to mahi [work], get her into some childcare, and keep going forward. It’s been one of the biggest things.
Discussion
A first birthday celebration is a milestone for whānau who have experienced the preterm birth of their pēpi and the highs and lows of their ensuing journey in neonatal intensive care, through to paediatric care, and the accompanying challenges for their pēpi and themselves. Interviewing whānau around the time of this milestone has provided insight into what they continue to carry with them about their health care journey, how they have risen to meet ongoing challenges, and what their hopes are for the future. This gives rich insight into the lives of whānau that can only benefit the cultural responsiveness of the health practitioners Māori encounter when their pēpi is born too soon. In this discussion we begin with the lows and end on the highs whānau identified. A case is presented for culturally responsive health care being about health practitioners becoming ‘like whānau’ so that they journey well with whānau, contribute to their collective resilience and are invited to celebrate important milestones.
Needing to engage with neonatal care following a preterm birth is a deviation from what whānau have anticipated as their hapū ora (pregnancy wellness) journey, with the fragmentation of their whānau collective because of distance or visiting rules leaving new parents ill at ease and vulnerable (Thompson 2009; Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010; Stevenson 2018; Stevenson et al. 2020; Adcock et al. 2021). Whānau talked about being exhausted from frequent medical scares. Getting to the first birthday of their pēpi was a milestone marked by the increased expertise of whānau to recognise and respond to health concerns. Whānau took everything they had learned on their journey and channelled that into being experts, demonstrating vigilance over the care of their pēpi, and collective resilience, while many suffered the exhaustion of frequent medical scares. Collectivity, coming together to support each other was an important way of coping with the journey.
Some of the concerns that had been raw and fresh in those early days of neonatal care, such as frustration at experiences of discrimination and overly complicated processes, carried over to the first birthday (Thompson 2009; Māori and Indigenous Analysis Ltd. & Rautaki Ltd 2010). These kinds of experiences tried to push whānau off onto unsteady pathways. However, these experiences also strengthened the resolve of whānau as they recognised the negativity and inappropriateness of them – asserting that they should not have happened. While Māori whānau are appreciative of the care their pēpi receive, they need NICU environments to be more culturally responsive to fully support their bonding with pēpi and their ability to parent well.
As whānau reflected on their journeys, the love and joy they felt for their pēpi carried over and was fuelled by pride in them and what they had been achieving, despite their abrupt arrival into Te Ao Mārama. Parents relied on health practitioner champions, whānau, and each other to provide the relational support to sustain them on their journeys. The people in their lives who cared about them and were present for them helped parents navigate ongoing health issues collectively. Looking forward, parents in particular expressed aspirations for retaining or regaining more of a sense of normal in their lives outside of the shadow of preterm birth. In holding firm in their tino-rangatiratanga (autonomy), the whānau were able to shore up collective resilience.
While the concept of resilience has been criticised for taking an individualistic approach that places responsibility on Māori to perpetually survive against a system that causes harm, Penehira et al. call for a collective resilience framework that is proactive (rather than reactive) (Penehira et al. 2014). Collective resilience resists colonial domination, and asserts Māori tino-rangatiratanga (Penehira et al. 2014). This is the pursuit of a different kind of relationship between Māori whānau and Crown/State/health services – a Te Tiriti o Waitangi (Treaty of Waitangi) compliant relationship that is long overdue (Cram et al. 2019; Waitangi Tribunal 2019, 2021). Pākehā and other Tauiwi (non-Māori) health practitioners and policy makers must support this pursuit by challenging the persistently inequitable maternal-infant health system, and recognising and embracing Māori tino-rangatiratanga.
The whānau in this study demonstrated how collective resilience is enacted by whānau and can be supported by health practitioners along preterm care pathways. Whānau looked after each other and supported their peers by passing on helpful information that they received (Adcock et al. 2021). The relationships that were established with health practitioners framed how whānau shared such information. Health practitioners who prioritised whanaungatanga and became ‘like whānau’ for whānau supported collective resilience. This embrace of the collective is incredibly important for humanising an otherwise dehumanising and highly medicalised journey (Stevenson 2018; Adcock et al. 2021). It ripples out, not just touching the lives of those whānau who they directly champion care for, but to other whānau as well. This is the reverse of how negative experiences with health services create distrust. Such culturally responsive health care sends positive waves and information through whānau networks.
As Pihama et al. assert, in order to affirm Māori tino-rangatiratanga and whānau/hapū/Iwi health and well-being, we need to reinstate collective practices of whānau (Pihama et al. 2019). This essential ‘building block’ (Mead 2003) of hapū ora must be championed by health services too. This is timely as the health system in Aotearoa faces redesign following the recent Waitangi Tribunal Health Services and Outcomes Kaupapa Inquiry report (WAI2575) (Waitangi Tribunal 2019, 2021). Celebrating and supporting whānau collectivity – all the layers of the harakeke surrounding te rito (pēpi), will protect the place of the kōmako and, therefore, the continuation of taonga tuku iho.
Conclusion
This research sheds light on the lived realities of Māori whānau collectives as they journey along preterm care pathways from birth to one year. Collective resilience on preterm care pathways is a resistance to the isolating, traumatic, and inhospitable aspects of the current maternal-infant health system. This can and should be supported by health practitioners and policy makers, as well as other providers who support Māori parents, pēpi, and wider whānau. Whānau are experts of their preterm pēpi, and system champions who recognise this and promote whānau tino-rangatiratanga make a world of difference. Whānau-centred models of neonatal care, with better access to and training of culturally safe social workers and health practitioners, have the potential to scale-up these strengths. Health services can learn from these whānau, about how to better support preterm care pathways for Māori.
Acknowledgements
This research was undertaken as part of the first author’s (AA’s) doctoral study. AA would like to acknowledge the financial assistance of doctoral scholarships and conference attendance grants from Te Herenga Waka Victoria University of Wellington, Te Rūnanga o Ngāti Mutunga, the Māori Education Trust Rangiriri and Mātene Te Whiwhi Winiata Scholarship, and Ngā Pae o te Māramatanga. The authors would also like to acknowledge the valuable input of our Kāhui Kaumātua and Rōpū Māmā. Special thanks to the whānau who took part in this research. Ngā mihi maioha ki a koutou katoa!
Disclosure statement
No potential conflict of interest was reported by the author(s).
This article has been corrected with minor changes. These changes do not impact the academic content of the article.