Whānau Māori explain how the Harti Hauora Tool assists with better access to health services

Additional keywords: Indigenous health, New Zealand, social determinants of health, tertiary health care.

The effect of colonisation on Māori, the Indigenous people of New Zealand, and subsequent colonial-driven approaches to health has been significant and is well documented elsewhere (Reinfeld and Pihama 2007). Health inequities are exacerbated by the unjust distribution of social determinants of health (Chin et al. 2018) and by experiences of racism (Harris et al. 2012). This legacy of colonisation in public health policy (Cram et al. 2003), combined with past negative interactions with health workers (Pitama et al. 2011), results in whānau receiving suboptimal care at a primary health level. Additionally, insufficient access to adequate resources (Hodgetts and Stolte 2017) deepens reduced access to primary health care. Subsequently, Māori patients and whānau (see Appendix 1 for a full glossary of Māori terms used in this paper) find themselves having to engage with tertiary health services in order to receive health care in a timely manner (Jansen et al. 2011).

In New Zealand, public health service design and delivery has been established in ways that privilege individualistic, clinical discourses and acute need (Gifford et al. 2017). By their very design, this type of public health service delivery disadvantages Māori (Came 2014). Westbrooke et al. (2001) note that Māori patients receive inequitable access to interventions and reduced quality of care, resulting in unmet Māori health needs. Māori families accessing hospital care for a child encounter systemic barriers (Bolitho and Huntington 2006), and Māori patients themselves report negative hospital experiences (McKinny 2006). Medical understandings of health, which privilege biomedical and reductionist models, dominate health research approaches (Masters-Awatere 2017; Masters-Awatere and Nikora 2017); this acts to subsume the experiences of marginalised groups into the dominant colonial narratives, which approach health issues from an individual perspective.

This article draws on Kaupapa Māori (KM) theory to explore the health-related experiences of whānau Māori with a child aged 0–5 years admitted to hospital during the research period (July–November 2018). Specifically, we report findings from qualitative interviews with participants from the mixed-methods randomised control trial (RCT) of the Harti Hauora Tamariki tool, hereafter Harti tool. The wider project seeks to evaluate the effectiveness of the Harti tool (a whānau ora-based assessment instrument designed to reduce health inequities), as delivered by research assistants (RAs) utilising a KM approach. Overall, 1100 tamariki Māori aged 0–5 years admitted to Waikato Hospital under a paediatric medical team will be recruited for the RCT. The intervention (utilisation of the Harti tool during inpatient care and delivered by RAs) is randomly assigned, with the control group receiving usual care; that is, hospital-based care as per usual (no Harti tool).

A series of in-depth qualitative interviews were undertaken with whānau (n = 15) of tamariki Māori admitted to hospital regarding their experience of hospital care. Interviews (n = 24) are with whānau whose hospital admission included experience of the Harti tool (n = 7) and whānau who experienced usual care (n = 8). Interview participants were purposively selected from the wider group of participants who had consented to the RCT. We intentionally set our inclusion criteria to prioritise the experiences of whānau Māori living with poverty and marginalisation. Whānau members of tamariki Māori who met at least one criterion for New Zealand’s domains of deprivation (Salmond et al. 2006) were invited via telephone contact to participate in a face-to-face interview regarding their experiences of their child’s hospital admission and subsequent healthcare provision. Pseudonyms were assigned using a random name generator and are used throughout this paper.

Quantitative research, with its focus on numerical frequency to argue generalisability, has not appreciated the ways that generalisation can occur within qualitative research (Hodgetts et al. in press). Imbued with culturally cognisant iterative and reflexive research processes (Hodgetts et al. 2018), we posit that this paper lays a strong foundation for arguing the current experience of hospital care for Māori whānau. As such, the authors take an active position in supporting the importance and relevance of previously argued culturally appropriate care in health services. Drawing on Kaupapa Māori methodologies (Pihama et al. 2014; Masters-Awatere and Nikora 2017), we used a participant-centred approach (Nikora et al. 2012; Jones et al. 2013). Specifically, interviews were held with participants in their homes and a koha of food and a NZ$100 supermarket voucher was given to participants in recognition of their time and knowledge. We intentionally engaged in a manner that communicated the value and worth of participants’ experiences. The interview questions were embedded into conversation so that the interview progressed in a way that felt comfortable, non-intrusive and enjoyable. Where possible, repeat interviews were conducted to further extend the conversation. These embedded practices reflect our Kaupapa Māori orientation to research engagements.

After every interview, extensive field notes, including reflexive notes, descriptions of interactions, observations and remembered conversations, were taken. This information was utilised along with quotes generated during the research process. Each participant gave insights into healthcare access, poverty and marginalisation that is of significance beyond their individual lifeworlds (Flyvbjerg 2006; Ruddin 2006). Our interpretative processes involved ‘looking at’ and ‘looking behind’ the words participants used in the construction of health narratives (Chamberlain 2000; Kirkeby 2011; Hodgetts et al. 2014). It also involved being aware of our positionality as researchers and the way in which this influences narratives told during research interviews (Radley and Billig 1996). Analytically, we drew on the notion of ‘researcher as bricoleur’ (Denzin and Lincoln 2000), whereby knowledge creators draw together artefacts, narratives and cultural contexts in the construction of meaning and new understandings (Radley and Chamberlain 2001; Rogers 2012; Hodgetts et al. 2018).

Ethical approval for this research was granted by the Waikato District Health Board’s Health and Disability Ethics Committee, reference number 18/CEN/88.

Whānau members in the intervention group (i.e. who experienced the Harti tool administered by the RAs) reported positively on their experience. Participants specifically mentioned the ability of the RAs to engage with them as Māori. Subsequently, they felt treated with value, dignity and respect. This experience contrasts with previous health-related interactions; for example, Mere is the primary caregiver for her grandchild, who has a chronic illness. She is highly familiar with the hospital environment. In the quote below she comments on her Harti tool experience:

I found it really relaxing. Questions I could relate to [the RA] … It was so refreshing to talk to somebody that knew where you were coming from … It was really awesome that [the RA] took that time to explain. My partner, he is more understanding in Māori than he is in English, so for her to take that length of time was good for him [Mere].

Mere particularly enjoyed the in-depth conversations regarding health-related matters without having to translate for her husband (partner). His first language is te reo Māori, and Mere often found herself needing to act as his interpreter. Being able to converse naturally provided much-needed respite (Pitama et al. 2011). Overall, participants appreciated receiving culturally appropriate, respectful interactions, despite the personal nature of questions asked:

It was pretty cool. I liked it because it was someone to help me get it off my chest sort of thing, but wasn’t going to judge me for what I was saying, so it was cool. I liked it. It wasn’t a nurse that would write down notes and then the next nurse reads it and then asks you. So that is what made it easier for me [Anahera].

I think the questions are a bit too personal, but [the RA] made me feel comfortable answering them. I suppose it depends on who is delivering it [Penny].

She [the RA] did tell me that…some people think they are intrusive questions before she asked them and stuff. She made me feel comfortable [Astra].

Key to ‘making people feel comfortable’ were everyday Kaupapa Māori practices such as whakawhanaungatanga (establishing shared connections), being conversant in te reo Māori and taking the time necessary to cover questions and comments thoroughly instead of rushing tool delivery (Pitama et al. 2011; Jones et al. 2013).

Across both groups, participants mentioned their reluctance to intrude on busy, rushed staff with their concerns and questions. Even where participants did request assistance, they often had to wait some time before a health professional arrived. This sense of ‘not wanting to disturb staff’ left participants feeling isolated and alone. Having a RA spend time with whānau in a calm and relaxed manner while they engaged with the Harti tool was a welcome change. Participants repeatedly commented on their appreciation for such an approach:

[The RA] even brought me lunch the next day. I felt like I really just had a friend to talk to. I was up there by myself and going crazy in that little room … it [the Harti] was real good. Yeah. Like they actually cared. When you have kids in there you don’t get fed at the hospital, so it was good having someone come in – especially if you don’t have anybody up there and you are just stuck. I thought it was quite good [Jodie].

She [The RA] went through a lot of things with us, it was really good too. Like the house is one of them she went through. She made sure that we were up to date with everything that had to do with her, like assistance from everybody. Yeah … So we are really interested in that Tamariki Ora, and the Whare Ora. Yeah, she referred us to Quit Smoking … She was awesome. Really. I mean what took maybe was supposed to have been half an hour took us maybe two hours. It was awesome. Yeah, it was just cool. Made sure that we knew about this, we knew about that or if we were hooked onto this – right down to Work & Income, if we were getting that and if we knew that it was there. It was awesome. She was good [Mere].

The combination of listening work, self-autonomy and genuine care for their wellbeing as Māori left participants feeling valued, with a renewed sense of confidence for navigating additional services.

As well as relational skills, the immediate practical support offered to those in receipt of the Harti tool was also valued. One such example is the provision of children’s car restraints and booster seats (colloquially referred to as car seats) to whānau whose current car seats were broken, out-of-date or otherwise unsafe. For low-income whānau in particular, not being able to afford important items such as car seats leaves them with a sense of shame and of being a ‘bad mum’. Aroha comments:

I really can’t afford to get a brand new one and I’ve been asking on PIF [Pay It Forward, a Facebook page] and I was telling [name] about it, and the next minute she walks in with a car seat for me. I was gob smacked man. Not very many good things like that happen to us. It was awesome [Aroha].

The provision of a safe, new car seat was highlighted as significant positive. Jodie had been using an old (and unsafe) car seat she had found in her in-law’s garage. Receiving a new car seat was also significant for her:

I have told everyone – holy shit, when I went to hospital I got this and I got that. I got hooked up with all this! I have messaged my Mum and my cousin. Holy shit cuz, you know I got a free car seat when I was at hospital! [Jodie].

Having a brand new, safety regulation-meeting car seat eased both Aroha and Jodie’s worries, supported their parenting practices, and was a tangible reminder of care for their families’ wellbeing. In general, having a tool delivered in a culturally enhancing and affirming manner concurrently with practical support (and referrals to appropriate services) left whānau members feeling cared for, confident and better able to navigate health services.

During conversations with usual care participants, it became clear that whānau were content with the bare minimum of care; that is, that their child received clinical treatment. Celia’s experiences starkly exemplify this: her first daughter died in hospital 4 years prior and Celia still carries a sense of receiving second-rate treatment. Celia explains:

They [medical staff] weren’t actually listening to our point of view on what we wanted, but doctors were saying there is no chance of her actually surviving because she is only young, otherwise they would drill in her thing to make the blood flow. It was not what we wanted to hear and it was not what we wanted, we had a choice of switching her life support off and letting her go. Us as parents we didn’t want to. After all that happened we kind of blamed the hospital … The care was OK, but we thought that they could have done something more to actually help her stay alive. The risk was 50/50 and so we just decided to pull the plug and kind of hated hospitals ever since then [Celia].

Despite not yet having a diagnosis for her son’s condition, no treatment plan, and being denied access to the child’s playroom at hospital, Celia was pleased with the health care her son received. She was grateful that her son was alive and that staff were taking her concerns seriously. Her bar for successful healthcare provision is based on answering the question; ‘Did my baby die?’ Celia alludes to this below:

Then in the back of our minds we were like if we end up staying here [mouldy apartment] we are going to lose him like we lost our daughter. Everything in the back of our mind was we really need to get out of here otherwise he is going to get sick. Eventually we moved and now he is getting sick. He has his seizures now and again. But he hasn’t had one since he has come out of hospital, so hopefully we are doing it right this time. Doing his health and eating a bit right this time [Celia].

Such comments reflect the individualisation of health care and the historical poor treatment of Indigenous women and children within New Zealand’s public health system (Blakely et al. 2004; Pihama et al. 2014). Underlying bias and deeply entrenched racialised beliefs lead to second-rate treatment and increased health inequities (Harris et al. 2012). Ensuring equitable health service provision services requires creating new, overwhelmingly positive experiences that erase the cumulative negative effect of past ones and raise the bar of expectation (Arlidge et al. 2009; Pihama et al. 2014).

Another example of health inequities and the importance of taking a culturally supportive approach are referrals to the Quit Smoking program, a nationally funded initiative that aims to reduce the incidence of tobacco smoking for whānau Māori. Tobacco-smoking participants in the usual care group were not always referred, while others were treated in an alienating manner:

We’d both love to quit smoking but smoking so long it is just hard. We have tried to go cold turkey and it doesn’t work. To be honest, it doesn’t work. Especially when we are both trying to give up and we both are at each other and then…it is not a good look. We are still smoking. Maybe one of us will have to do it first and then the next one [Celia].

Celia and her partner are ideal candidates for Quit Smoking and, with support, would likely achieve their goal of being smoke-free. Celia was not referred while in hospital with her son, and was unaware she could access the Quit Smoking program. Taryn felt badgered by a health professional, leaving her reluctant to engage with services:

[Doctor] wasn’t worried about our son, he was just more worried about us. He was even saying how much do you earn? He was even talking about how much do you spend a week on cigarettes. I didn’t even get to tell him that we’re not heavy smokers, and then he was like – I bet you it is like $70 a week. $70 a week you could have been saving that for your family. Do yous¹ want to go on holidays, do yous want to eat? I was just like… we’ve just finished a date night. My Mum was fuming. I thought maybe this is what it is at the hospital, this is normal. My Mum was like – this is not right! I feel like us being Māori and we’re smokers, I feel it was kind of an aggressive thing, I have to have this conversation with everyone, so I’m just going to be an arsehole [Taryn].

While well intentioned, shaming people is a misguided method that achieves little (Walker 2014) and contrasts strongly with the approach undertaken by the RAs. Aroha, whose child had been hospitalised three times this year and who experienced the Harti tool during the third hospital admission, comments on her success at reducing her cigarette use:

I have been thinking about it for a while but I’ve always been putting it off – man, I’m going to start going crazy and I’ve got the kids to look after by myself. No! But it has actually been really good, and I’m glad that she [the RA] gave me the push to do it [and] referred me to the Quit Smoking coach, so she comes around every week to talk to me as well, so that is cool for support … I mean, if yous were around at the first … I might be smoke free already [Aroha].

As a result of engaging with the Quit Smoking program, Aroha has reduced her cigarette use from 10 cigarettes a day to four. While not all whānau who experienced the Harti tool also engaged with Quit Smoking, for those, like Aroha, who are ready to address their tobacco use, being treated in a culturally supportive and encouraging manner resulted in a positive uptake of services.

While each of these interviews was the result of a child’s admission to hospital, the interactions with RAs delivering the Harti tool experience highlighted the ways in which access to primary health care was improved for these whānau Māori. Three key interconnected strategies were identified: relationship, matching and connections. Each of these are explained below.

First, tool delivery prioritised relationship building with whānau over accomplishing tool protocols. This KM-based approach is in direct contrast to the individualistic clinical focus dominating New Zealand healthcare provision (Came 2014; Gifford et al. 2017). Perceptions of ‘busy’ clinical staff contribute to whānau reluctance to request assistance (Arlidge et al. 2009). The absence of relational connection with hospital staff exacerbates their sense of discomfort and isolation (Stewart et al. 2009). For whānau who had experienced hospital admissions before receiving the Harti tool, the difference was like a ray of sunshine on a cloudy day. The example shared by Mere, of an RA who took the time to thoroughly go through the Harti tool, reflects the care given by RAs to patients and their whānau, and contrasts markedly with the approach of clinical staff charged with hospital service delivery. Despite the personal nature of questions within the Harti tool, participants repeatedly commented that the respectful and culturally appropriate practice of RA interactions resulted in open and honest answers to what would otherwise be perceived as challenging and alienating questions. It was clear that a high level of trust had been established with the RAs. Our findings are congruent with previous research (Kerr et al. 2010; Jones et al. 2013; Kidd et al. 2013) that highlights engaging in KM processes such as whakawhanaungatanga, koha, conversing in te reo and taking time to fully answer questions results in increased patient engagement and higher quality interactions.

The second key strategy relates to the matching of key indigenous worker (the RAs) with participating whānau. Matching refers to the purposeful selection of researchers to ‘match’ variables such as ethnicity and gender with research participants (Patton 2002). Comments from whānau Māori in the results section of this paper highlight the benefits of cultural matching for reducing healthcare inequities. Consider Mere, who talked at length about how affirming she found her interactions with the RA. One of the most ‘refreshing’ aspects for Mere was the ability of the RA to speak directly to her husband in te reo Māori. Subsequently, Mere was able to relax with the assurance that her husband could have matters explained directly to him. Our findings extend the work of Pitama et al. (2011). If more healthcare professionals were able to ‘match’ their patients and converse in te reo Māori, which is an official language in New Zealand, this would relieve the additional burden faced by whānau members of needing to act as unpaid translators.

The final strategy is summarised as connection. Essential to creating and maintaining connections with whānau is an ability to listen (Stevenson et al. 2016), as well as the capacity to display genuine care for participants’ wellbeing (Walker et al. 2008), followed by action where need is identified. In the provision of car seats, as articulated by Aroha and Jodie, we hear of their surprise and joy to receive items for their child’s safe transportation. The gift of a car seats acts as a tangible reminder of care and connection that remain long after their hospital visit (Olsen 2003). In Aroha’s quotes regarding her referral to the Quit Smoking campaign, we see an example of the ability of the RAs to connect whānau with external services. Mere also mentions additional health services that the RA was instrumental in connecting her to.

There are multiple levels of connection presented in this paper: clinical staff, hospital and primary health services, external services. Here, the RA was essential in linking these levels together with patients and whānau with respect to their disclosed needs. The relationship established with the RA was an essential component to engagement with services. For whānau, having someone who: did not judge their specific situation; took time to understand their concerns; and provided practical assistance (such as a car seat) contributed to feelings of personal connection that enhanced participants’ sense of self-worth. The seed planted by these efforts built feelings of self-autonomy and gave confidence to whānau to navigate the additional health services.

In contrast to the highly connected nature of whānau who experienced the Harti tool, whānau randomised into the usual care group did not experience the same aspects of relationship-building, matching and connection. Instead, they reported feelings of negative judgement by well-intentioned staff whose discourse shamed rather than assisted. Taryn’s experience exemplifies this. Additionally, the narratives provided by whānau who received usual care indicate that they were equally satisfied with their level of care compared to those who experienced the Harti tool – even though the provided care was very different. When the bar is so low that a positive experience is determined on the basis of whether the child remains alive at the end of the admission, such as in the case of Celia, trust in the public health system is not very high (Harris et al. 2012). The experiences of the usual care group, and of the participants from cited studies, provide a clear contrast to the positive gains made through utilising the Harti tool in a KM manner.

This paper extends on Kaupapa Māori theory through embedding a Kaupapa Māori approach to an applied research project. We have purposefully engaged a Kaupapa Māori lens when designing the bigger Harti project. As such, we applied the same lens when considering the experiences of whānau Māori shortly after the hospital admission of their tamaiti. Our core goal with the paper has been to evolve understanding of Kaupapa Māori as appropriate in both the health service delivery design of the study and its subsequent application in the research process. Central to our approach has been the recognised importance of contributing to previously articulated arguments for culturally appropriate and relevant processes in health research.

Cognisant of the individualistic nature of health service provision, this paper highlights strategies for mitigating unmet needs. Our findings highlight ways it is possible to provide high-quality care for Indigenous people within current healthcare environments. A key influence identified here were the staff who were willing to take the time necessary to establish a relationship that is centred on the needs of whānau (rather than the clinician). The willingness of whānau to engage with hospital staff had flow-on effects when engaging with primary care services; namely, that having a relationship with an Indigenous health worker who evaluated individual situations, took time to understand concerns and provided a clear pathway for additional services and practical responses, contributed to a sense of autonomy and self-worth beyond the hospital setting. The resulting feelings of being in control of health enhanced wellbeing.

Indigenous health workers influenced the ways in which the administration of this tool is delivered and worked towards reducing negative hospital experiences for whānau Māori. As demonstrated here, positive interactions at tertiary level care facilitated better engagement with primary care services and have the potential to reduce the likelihood of a hospital readmission.

The authors declare no conflicts of interest.