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. 2024 Dec 4;55(3):704–720. doi: 10.1080/03036758.2024.2432468

Māori and Pasifika Whānau expertise and experiences in the ear and hearing health system in the Counties Manukau Region, Auckland

William Taylor a, Joan Huan Leung a,b, Elizabeth A-L Holt b,c, Alehandrea Raiha Manuel b,c, Josephine Baddeley a, Louise J Dickinson d, Randall P Morton b,d, Alain C Vandal d,e, Suzanne C Purdy a,b,CONTACT
PMCID: PMC11938753  PMID: 40151472

ABSTRACT

Unaddressed hearing loss and middle ear problems have lifelong implications for speech and language development, social skills, education, and future employment opportunities. In Aotearoa New Zealand, Māori and Pasifika peoples are overrepresented in ear and hearing health statistics and experience many unmet needs. Despite the promise of equal outcomes under Te Tiriti o Waitangi, there is a well-established body of literature reporting poor health-related outcomes for Māori and Pasifika peoples. Tamariki (children) and their whānau (families) face a range of multi-factorial barriers when accessing ear and hearing health services. This study aims to explore the experiences of Māori and Pasifika whānau accessing these services in the Counties Manukau region, Auckland. The research was guided by Kaupapa Māori and Pan-Pacific research principles, which aim to address power relationships in research, critique deficit discourses, and maintain high quality standards for Māori and Pacific health research. Six whānau interviews were conducted and thematic analysis of data resulted in three themes – Whānau are experts, Power and control, and What makes a good ear and hearing health service. In addition, Māori and Pasifika whānau made suggestions for improvements in ear and hearing healthcare, which will inform larger scale ear and hearing health projects in NZ.

Glossary of Māori words: hapū: kinship group, clan, tribe, subtribe – section of a large kinship group; iwi: tribe, nation, people, nationality, race; karakia: prayer, grace, blessing; lotu: prayer, blessing; Māori: normal, ordinary, indigenous people of Aotearoa New Zealand; mokopuna: grandchild, great-nephew or great-niece; Pākehā: (Te Reo Māori) European; Papa'a: (Cook Island Māori) European; raranga: weaving; tamariki: children; taonga: treasure; Tauiwi: (Te Reo Māori) non-Māori people of Aotearoa New Zealand; Te Taiao: world; Earth; natural world; environment; tikanga: correct procedure, custom, method, manner, rule, way, code, practice; wāhine: woman, female; whakapapa: genealogy; lineage; descent; whānau: extended family network, family group.

KEYWORDS: Hearing health, experiences, Māori, Pasifika, equity

Introduction

Health equity is ‘the principle underlying a commitment to reduce, and ultimately eliminate, disparities in health and in its determinants, including social determinants’ (Braveman 2014, p. 5). In Aotearoa New Zealand, there is well-established evidence that several structural and interpersonal factors contribute to inequities in the health outcomes of its citizens, including the uneven distribution of wealth, colonisation, systemic oppression, and subsequent failures of the health system to provide accessible and affordable health services for all (Reid et al. 2019, 2022; Ofe-Grant 2022; Curtis et al. 2023; Tukuitonga 2023). In the field of ear and hearing health, the seminal 1989 Whakarongo Mai report highlighted the state of hearing health experienced by Māori (New Zealand Review Team to Consider Hearing Impairment Among Māori People 1989). The report listed 17 vital recommendations for improving ear and hearing-health-related disparities between Māori and non-Māori. Some of these included: the need to implement deliberate and active strategies aimed at prevention; an educational programme for parents teaching health literacy; an increase in the number of ear nose and throat services; the analysis and reduction of waiting times for hospital-based Audiology services; the formation of strong relationships between healthcare providers and iwi Māori; and the creation of a Māori Health Resource Unit. Yet over 30 years on, hearing health inequities persist, with only a small number of the Whakarongo Mai recommendations being implemented and/or sustained (Dawson 2022; Manuel 2022). Permanent bilateral hearing loss continues to be more prevalent in young Māori than in young non-Māori (Deafness Notification Database; Digby et al. 2020). Within the Pacific Island Families Study 11-year-old cohort, Purdy and colleagues (2019) report that Pasifika children in Counties Manukau experience high rates of middle ear disease and hearing difficulties, and Pasifika children are also more likely to fail the school entry hearing test than New Zealand (NZ) European children (Digby et al. 2020).

There is further evidence for differences in healthcare usage and access for Māori and Pasifika peoples. One study identified that, while Māori children aged 0–4 were up to 1.95 times (95% CI [1.60,2.37]) more likely to be admitted to a hospital for otitis media with effusion than Pākehā children, Māori children had a significantly lower rate of elective admissions for ventilation tube insertion (‘grommets’) (McCallum et al. 2015). Acute admission rates for Pasifika children were similarly high (1.76 times higher, 95% CI [1.32,2.33]). In a comparison study between the Counties Manukau (CMDHB) and Auckland District Health Boards (ADHB), Seo and colleagues (2022) found that, despite serving a greater proportion of areas with high deprivation, and a higher percentage of Māori (16.5% vs 8.3% for ADHB) and Pasifika peoples (22% vs 11%), rates of grommet insertion (a treatment for otitis media) were only 6.1 per 1000 people in CMDHB in 2018. In contrast, rates of grommet insertion in ADHB were 10.2 per 1000 people.

Māori and Pasifika communities experience more barriers in accessing hospital-based health providers than non-Māori/non-Pasifika communities (Espiner et al. 2021). Of note, Māori and Pasifika children are referred to the Audiology department one to two years later, respectively, compared to children of other ethnicities (NZ European, Asian, Other) (McLaren et al. 2022). Māori children and Pasifika children were also recorded as being more than four and seven times less likely, respectively, to attend their first hearing appointment in comparison to NZ European children. While the reasons for this are poorly understood, they are likely to be multifactorial (McLaren et al. 2022).

This study has arisen from research that began with Audiology and ORL staff at Counties Manukau SuperClinic (Dickinson et al. 2018; Su et al. 2021; Seo et al. 2022) seeking to better understand and improve ear and hearing services and reduce inequities after a national recall of children who had undergone newborn hearing screening revealed a significant number of preschool-aged children with undetected hearing loss (Ministry of Health 2012). The Manukau SuperClinic provides specialist outpatient appointments and day procedures, and is made up of a collective of disciplines, including otorhinolaryngology and audiology services. Over 40% of Māori lived in the 20% most deprived neighbourhoods (Curtis et al. 2023), including Counties Manukau, the region serviced by the SuperClinic, which is characterised by a high deprivation index as per the 2018 census (Atkinson et al. 2019). Despite efforts to implement alternate models of care utilising audiologists with extended scopes of practice to reduce long wait times for treatment (Pokorny et al. 2024), the complexities of Māori and Pasifika ear and hearing health inequities prevent many families from accessing these clinical services.

In both Māori (Durie 1985; Cram et al. 2003) and Pacific (Tukuitonga 1990; Laing and Mitaera 1994) cultures, health is regarded as a collective family concern rather than an individual matter. Family-centred and whānau-centred care models aim to shift power imbalances between healthcare practitioner and healthcare user and place the family as the expert in the care of their child (Shields et al. 2007; Smiler 2014). The voices of whānau members are not often documented in the literature, thus the primary objective of this study was to address this gap.

Materials and methods

Study design

This study comprised the second phase of a larger project to assess the feasibility of bringing hearing screening services to 3-year-old children in Counties Manukau, Auckland, via early education channels (i.e. Kohanga Reo, Pacific early learning centres). This study aimed to follow up with all whānau of children who were referred to hearing health services after not passing their initial hearing screen (Phase 1; Su et al. 2021). Interviews were used to explore differences in the experiences of those who could navigate the referral pathway and those who could not. The research also sought to shed light on barriers and facilitators, and suggestions on how the referral pathway could be improved. Ethical approval for this research was granted by University of Auckland Human Participant Ethics Committee (UAHPEC) [Reference #023053]. Of note, it was stipulated in the participant information sheet and consent form that this study follows on from Phase 1 of the research. While whānau may have accessed services from Te Whatu Ora Counties Manukau in the interim, their standard of care and participation in this study was not contingent on the service provider (audiologists at Manukau SuperClinic).

Positionality statement of the research team

The research team is multidisciplinary in nature, and collectively bring a broad perspective to the analysis and interpretation of this interview data. The first author (WT, a non-New Zealand born, Pākehā male) was a student tasked with this study as his research project. Upon emigrating to New Zealand and commencing his training to become a clinical psychologist, he has come to recognise the benefits of considering health holistically, a feature deviating from the reductionistic Eurocentric and hegemonic frameworks that dominate Aotearoa’s healthcare systems, yet crucial for providing culturally competent healthcare for Māori and Pasifika communities. He was supported by supervisors from the University of Auckland (JHL, EALH, ARM, SCP) who are early and senior career researchers actively working in the space of ear and hearing health. Of these, two are Māori, one is of Tongan descent, and one is a non-New Zealand born, Tauiwi female. Collectively, they brought an academic lens to this study and were the five authors involved in the analysis and interpretation of the interview data. Author (JB), a New Zealand-born, Pākehā female, fluent in conversational Te Reo and Cook Islands Māori and familiar with Māori cultural practices, was a research assistant recruited to conduct the interviews. Authors (LJD, RPM, ACV) were acknowledged as part of the wider collaboration between the University of Auckland and Te Whatu Ora Counties Manukau and their role in following up with the whānau who came through Phase 1 of the study. As service providers, they were not involved in the collection of the data, analysis or interpretation of data, and did not have knowledge of who the interviewees were until the write up of the study.

Kaupapa Māori & Pan-Pacific research principles

This study's research design and methods were guided by Kaupapa Māori and Pan-Pacific research principles. These were important underpinnings of this research as it placed Māori and Pasifika whānau and their communities at the centre of enquiry, retrieved spaces for Māori and Pasifika realities to be seen as legitimate, and allowed for social change to occur within systems (Tuhiwai Smith 2012). Curtis (2016) and Naepi (2015) provide additional context on how Kaupapa Māori interacts with Pacific research methodologies. Kaupapa Māori and Pan-Pacific research approaches are strengths-based and grounded upon Māori and Pacific worldviews and values. As such, they challenge deficit discourses and imbalanced power dynamics in research to foster safe processes and maintain high-quality standards from the outset.

Data collection

Twenty-three children and their whānau were referred to Audiology after the early childhood hearing screening conducted as part of an earlier phase of this research (Su et al. 2021). Of those eligible for the study (n = 23), some whānau had successfully navigated the referral pathway (n = 11), and others had not (n = 12). An initial text message was sent to all those eligible, followed by a phone call to enquire about their interest in the study. Six interviews were conducted with whānau members, who are henceforth referred to as our research participants.

A semi-structured interview schedule based on the study aims and objectives was designed by members of the research team who have extensive experience in conducting qualitative research using Kaupapa Māori and Pan-Pacific research principles (ARM, EALH, SCP). Interview questions included: What barriers, facilitators, and systemic challenges are there for Māori and Pasifika peoples accessing ear and hearing health services in Counties Manukau? What changes to the healthcare system do Māori and Pasifika communities feel could improve their experience in, and ability to, access hearing health services? Are there services that could be implemented to help reduce barriers to accessing healthcare services to enable Māori and Pasifika peoples to address their health concerns?

At the time the interviews were conducted, all participants were living in the catchment area for what was the Counties Manukau DHB, now referred to as Te Whatu Ora Counties Manukau. In providing a culturally appropriate space for research to be conducted, each participant was asked if they would like to open the interview with a karakia or lotu. Additionally, participants were offered the option to have a translator present for the interviews. Interviews took an etic approach where the research questions, guided by a literature review, were framed in a way that probed whānau experiences of both the referral pathway and access to healthcare services.

Data analysis

Thematic analysis was employed because it aligned with underlying principles of Kaupapa Māori and Pan-Pacific research methodologies (Wharewera-Mika Ngāti Awa and Whānau Apanui 2012; Eade 2014; Staps et al. 2019; Braun and Clarke 2022) The six steps of thematic analysis were utilised as described by Braun and Clarke (2006). These included familiarisation with the interview transcripts, and generation of initial codes across the entire dataset.

To account for researcher bias, triangulation of the coding process and identification of themes were undertaken by five members of the research team, each providing their own researcher perspectives and world views. This ensured cross-validation of the data, as well as the capturing of different dimensions of why certain phenomenon exist. It is also purposefully used to ensure certain processes and interpretation from the data appropriately aligns with Kaupapa Māori and Pan-Pacific research principles. The analysis of data took both an inductive and deductive approach, meaning the coding and theme development was directed by the content of the data and research factors identified in the literature review. The use of an inductive approach meant the researchers drew meaning and understanding without trying to fit the data into a pre-existing theory or framework. The final themes and codes were validated through consensus of the five researchers and then were checked against the entire dataset to ensure accuracy. The online Miro collaboration platform was used to facilitate the thematic analysis process. A total of seven iterations were generated from the analysis process, starting from 10 themes that were narrowed to 4, before a consensus was reached on the final 3 themes.

Results

Interviews were 40 min on average, with the shortest interview being 28 min, and the longest interview being 65 min. All six whānau interviews were held with wāhine: five mothers and one grandmother. Of the six, four successfully navigated the referral pathway, while two did not, thus providing perspectives on the healthcare system from both angles. Within the context of Aotearoa New Zealand, ethnicity is an important descriptor and variable. Its inclusion does not wash out other factors, and instead it emphasises the residual effects of colonisation and ongoing systemic biases. Below is information on the ethnicity of each interviewee and the ethnic identity of their child (who participated in Phase 1 of the research).

RP1: Cook Island Māori, mother to a Cook Island/Māori/European child

RP2: European, mother to a Tongan/European child

RP3: Māori, mother to a Fijian/Māori child

RP4: Tongan, mother to a Tongan child

RP5: Samoan, mother to a Samoan child

RP6: Māori, grandmother to a Māori child

Three main themes and their associated subthemes were identified. The main themes were: (1) Whānau are experts; (2) Power and Control; and (3) What makes a good Ear and Hearing Health System.

Theme one: Whānau are experts

Interviews showed that whānau are experts regarding their own and their child’s/grandchild’s ear and hearing health. This expertise included having knowledge of child development, the value of ear and hearing health, and understanding the health system (Figure 1).

Figure 1.

Figure 1.

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Theme 1: Whānau are experts.

Parents are knowledgeable about child development

Research participants have a wealth of knowledge on child development, milestones and indicators of delayed development. For example, RP2 reported ‘So she's year one. … she reached expectations before she had been at school for a full year’. All participants described their children as social, outgoing, and playful, with strengths across skills such as reading and writing.

All participants recognised the value of ear and hearing health and were aware of the multiple impacts middle ear issues and hearing loss could have, with note to the influence on motor skills and balance. RP1 reported ‘She'll just be walking and then just kind of fall over, because I think everything was unbalanced’.

Research participants reported their child’s wellbeing was their main priority and would support and protect their children if they became aware of any health issues. As RP2 stated, ‘ … you'd go to the ends of the earth for your children wouldn't you’.

Child ear and hearing health is valued

Whānau spoke about valuing ear and hearing health and acknowledged ear and hearing health as vital for wellbeing, communication and staying connected. Overall, participants were accepting and supportive of each of their children and adapted their daily lives to accommodate each child’s unique needs. Supporting quotes can be found in the supplementary table under section 1.2.

Whānau are experienced and knowledgeable in ear and hearing health and the health system

All participants demonstrated substantial knowledge and experience regarding ear and hearing health, including signs of hearing loss. RP2 reported: ‘They like, turn their head a certain way to try and listen to the speaker, or they'll move their hand behind the ear […] When you're talking to them, and there is no response, and there is loud noises … you know, just stimuli in the environment that they don't respond to’.

Five participants described their own personal experiences of having ear/hearing health and communication issues, or of other whānau members who faced similar challenges. For example, RP4 said ‘I’ve got two other daughters, but they have got the same problem’. Several of our participants discussed frustrations experienced by their whānau member(s) with hearing loss and how this suffering could be long-term if ear or hearing difficulties were not identified.

These lived experiences are shared collectively by way of a familial knowledge system. Participants were well informed about the importance of testing hearing earlier than as part of the standard ‘B4 School Check’ (Richards et al. 2019). Participants reported that this additional time allows whānau to create strategic plans long before children begin school. This is seen in RP5’s narrative: ‘ … make sure they are all clear when they step into primary school, their mind and their ears is all working. I think it's best to test them when they are younger’.

In support of early screening around 3 years of age, māmā and primary school teacher, RP2, finds that ‘the sooner you can put in plans and get the supports, and things that you need to make sure that the kids can do what they, what they can. […] then there'll be a bit more time a bit more chance to get things like, diagnosed or sussed out before they turned five’.

Theme two: power & control

The second major theme identified within our participants’ narratives was whānau experiences of the systemic imbalance of power and control between the health professionals/services and whānau (Figure 2)

Figure 2.

Figure 2.

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Theme 2: Power & Control.

Whānau sense of power, control, and autonomy

Research participants have felt, experienced, and noticed imbalances in power, control, and autonomy when accessing healthcare services. In addition to external factors of (1) hospital settings being viewed as adverse places and (2) funding perceived as not trickling down to the frontlines, participants acknowledged a significant power imbalance between whānau and healthcare professionals/services. Specifically, participants reported experiences of feeling as though they lack a sense of control and autonomy over their own and their children’s bodies in the healthcare system. For example, in discussions around accessing healthcare services, RP1 said, ‘It’s just you often get treated like trash or, you know, leave feeling that you're a second-class citizen’. Furthermore, RP1 stated ‘I stood there for like, maybe, it seemed like ages, but it was probably about four minutes. But she [the receptionist] was right there and didn't even acknowledge me, you know, she was typing on a computer’.

Despite extensive whānau knowledge of ear and hearing health, whānau members felt like their knowledge was sometimes not recognised and could be undervalued, and undermined in healthcare settings. This was particularly highlighted by RP6, who also described practitioners failing to follow through with referral promises. Supporting quotes can be found in the supplementary table under section 2.1.

The adverse experiences faced by whānau accessing healthcare has created mistrust and feelings of fear and powerlessness within the healthcare system . As highlighted by RP1, ‘I still have really big trust issues with our health system’.

Theme three: what makes a good ear & hearing health system

Results from the first two themes lead into theme three, where participants share their perspectives on what makes a good ear and hearing health system. Theme three explores participants’ experiences of accessing ear and hearing health services, including the Manukau SuperClinic and the Early Learning Centre (ELC) hearing screening pilot project (Figure 3).

Figure 3.

Figure 3.

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Theme 3: What makes a good ear and hearing health system.

Whānau supportive of screening in early learning centres

Research participants supported an ELC hearing screening programme and identified multiple reasons why an early hearing screen, provided outside of a hospital setting, was beneficial. For example, participants value the quick and simple process involved in the screening and acknowledge that additional professional opinions are a great resource for spotting a potential hearing loss.

Overall, participants are pleased about how seriously the screening was taken. RP4 expressed relief at her child’s hearing loss being identified through the process: ‘I'm lucky, because they got the hearing test at preschool, and they noticed that one of her ears was not best, and they transferred her to the doctor’.

School-based hearing screenings were referred to by multiple participants as positive, as they take the pressure off busy schedules and reduce associated costs: ‘Test the kids at school, saving time, petrol and –, yeah time for parents to take the kids’ (RP5).

School screenings were supported by two participants who acknowledged how teachers are well placed to identify potential hearing loss or developmental challenges in children. For example, RP4 found that in Year 3 her daughter went to school and ‘the teacher noticed it and they sent it [the referral] to the doctor at school or the nurse at school, and they took that test and they transferred to the SuperClinic’.

Positive experiences of counties Manukau superclinic

Research participants discussed time constraints on attending healthcare appointments due to work and busy lives. However, the close geographical proximity of the Manukau SuperClinic reduced the time required to access healthcare services.

Most participants felt they and their children were treated well by clinical and non-clinical ear and hearing healthcare staff at the Manukau SuperClinic. Supporting quotes can be found in the supplementary table under section 3.2.

Being taken seriously was vital for whānau in appointments. Research participant, RP1, expressed comfort that her concerns had been taken seriously and not dismissed by the practitioners at Manukau SuperClinic, by saying ‘Like it wasn't just ‘Oh, this is a little kid’, I don't know, ‘Little brown kid that we don't care about’ it was just like … yeah, I was really pleased with how she was dealt with and cared for’.

Opportunities to enhance healthcare experiences

Several participants highlighted important aspects of culture that are going unnoticed. This led to the identification of subtheme 3.3, reflecting participants’ practical and cultural considerations to improve hearing healthcare for tamariki.

Treat Hearing Problems Before School Starts – four participants spoke of the importance in identifying a hearing loss early. This gives whānau time to make adjustments before school starts and reduces the number of challenges that a child may face when learning.

Flexible Clinical Times – participants discussed how clinical appointment times could sometimes make healthcare services inaccessible. RP1 and RP2 suggested that booking appointments later in the day, or on the weekend could make appointments more accessible for the community, and for those with shift work.

Whānau Value Community Services – participants valued accessing ear and hearing health facilities within their community. RP5 reported ‘I think it's best if they have like those mobile clinics, they come to the school’. RP2: ‘ … somewhere that you could easily catch a bus to … and preferably someplace that didn't charge a million dollars for parking’. Community services were also valued to avoid busy hospital/clinic settings with large foot traffic, especially during a pandemic.

Clear communication between healthcare services and whānau – professional exhaustion can impact communication between staff and whānau. Participants spoke of burnout based on interactions with various healthcare clinical and non-clinical staff (see supplementary table under section 3.3(a)):

Three participants spoke about the inaccessibility of medical terminology and jargon used in healthcare settings, and how this often led to patient confusion. Consent forms, and the lack of understanding what these forms were for, as well as the need for health spaces to welcome support persons and provide the option of translators and interpreters, were mentioned (see supplementary table under section 3.3(b)).

Working alongside Whānau – ask rather than tell – participants spoke of the importance of consulting with whānau at all stages of healthcare appointments. While some reported this was done very well by healthcare practitioners, RP3: ‘But seriously it was good … So they're asking us, instead of telling us what to do’; some noted that further improvements could be made to achieve outcomes that were child – and whānau-centred. Ignoring whānau expertise and knowledge led to misdiagnosis of a child’s hearing status, as one participant recalled.

RP2 drew attention to the need for unbiased and non-discriminatory approaches to care saying ‘Just being able to maybe put yourself in your client’s shoes or understanding that everyone comes from different walks of life, and not just paint everyone with the same brush, or not come in with those assumptions.’

Fostering rangatiratanga among tamariki – participants spoke of the lack of respect for the rights of their child during appointments. Three participants spoke of their expectation of medical professionals to uphold rangatiratanga among children, with two participants also mentioning that none had ever sought their child's permission to engage. Issues with consent were also featured in the narrative (see supplementary table under section 3.3(c)).

Systemic changes in curriculum and professional development – participants provide insight and suggestions for systemic changes in educational curriculums and professional development of healthcare providers to ensure that their practices align with what is valued by whānau who access their services. Key areas discussed were NZ Māori history, cultural responsiveness and reflexive practice, understanding, respect, patience, and support from practitioners for whānau members (see supplementary table under section 3.3(d)).

Another suggestion is to develop culturally responsive education resources for health professionals. One participant spoke about how her children were bilingual which contributed to the idea of the creation of te reo Māori translated hearing health assessments, because ‘the children understand te reo. Try talking to the children in te reo, and understand, you know, see what they process, what they, what they’re saying. These children are bilingual’. (RP6).

Discussion

Twenty-three children were referred to Audiology services at Counties Manukau District Health Board after not passing a hearing screening programme trialled at their respective early learning centres during the feasibility phase of this study (Su et al. 2021). The current phase of the study sought to interview the parents and caregivers of these children to ascertain their perspectives on accessing ear and hearing healthcare services. Six interviews were conducted with whānau members, referred to as our research participants.

Results from these interviews identified that whānau place great value on the ear and hearing health of their tamariki and mokopuna and that hearing is vital to communication, wellbeing, and connection. These results align with tikanga Māori, where connection, when viewed through the lens of Te Ao Māori, evokes the use of all senses, and the importance of hearing when engaging with whānau, iwi, hapu, Te Taiao (the natural world) and whakapapa (genealogical relation to all things living and non-living) (Wikaire 2020; Manuel 2022). Similarly, within Pasifika cultures, hearing health is vital for communication, connection to self and the wider community, genealogy and a sense of identity (Holt et al. 2022; Holt et al. 2024).

Participants in the current study outlined both logistical and professional barriers that impact the ability of services to reach them and their whānau, some of these being inaccessible jargon used by medical professionals, work schedules and transportation, and lack of cultural responsiveness in health practice, confirming findings from previous studies conducted in Aotearoa New Zealand (Health Quality & Safety Commission New Zealand 2021). They are also echoed under similar circumstances in countries such as Southern India, where the Indigenous population in Kerala continue to disengage with the free healthcare system due to reasons such as failure to provide culturally respectful care, discrimination at healthcare facilities, the centralisation of services, as well as a pack of power from the Indigenous community to negotiate for services that were less disruptive to their daily lives (George et al. 2020).

One of the key findings was that participants value the importance of treating ear – and hearing-related matters as soon as possible. Several studies have identified the positive effects of early detection and intervention on language (Yoshinaga-Itano et al. 1998, 2001; Kennedy et al. 2006) and social development in children (Korver et al. 2010). Pokorny and colleagues (2024) at Te Whatu Ora Counties Manukau demonstrated that Māori and Pasifika children who received timely grommet surgery by accessing an alternate model of care utilising audiologists with extended scopes of practice, had positive medical and hearing outcomes that were comparable to NZ European and Asian children. Families also engaged with follow-up options such as re-entering the health system after being discharged by their GP and continuing with audiological monitoring, or being re-referred for medical/surgical treatment. The majority of the Māori and Pasifika whānau in this study showed a preference for attending clinical appointments at Manukau SuperClinic (almost double the preference of NZ Europeans), with only a small proportion indicating that they would rather attend a community-based alternative or did not have a preference. This successful engagement with the clinic reflects new service provision strategies and frameworks being utilised across ear and hearing health services in the Manukau SuperClinic (Pokorny et al. 2024).

The participants also provided feedback on factors that would make a good ear and hearing health system. They were supportive of hearing screening in early learning centres, and indicated that much could be improved regarding both the referral pathway for ear and hearing health, and service provision. A range of approaches are needed to meet the needs of whānau with differing means to access services. Some studies have reported the success of hearing health services in the community such as Ear Caravans (Rees et al. 2020) and healthcare wayfinding initiatives (Bubric et al. 2021; Al-Sharaa et al. 2022) that have been found to ameliorate gaps in service provision for families. There is evidence that alternative service provision frameworks do work and are helpful in supporting families’ access (Ellison-Loschmann and Pearce 2006; Luxford et al. 2014; McKivett et al. 2019).

One of the most prominent topics for service delivery improvement was that health practitioners should value whānau knowledge of their children and their children’s health. Our participants discussed a lack of acknowledgement of the past experiences of whānau and the health-related knowledge that stems from this experience. This lack of acknowledgment contributes to feelings of powerlessness to help their children, which results in experiences that our participants described as having to ‘watch their child suffer’ poor developmental outcomes across multiple domains, from literacy rates to social skills. Our research participants spoke about their perceptions of systemic power imbalances between each whānau, the healthcare system, and its practitioners. Participants provided examples of situations in which they were made to feel powerless, ignored, or were undermined as experts regarding their child’s development and ear and hearing health, including signs of a hearing loss and its impact on learning and communication. These power imbalances have been acknowledged as barriers in various reports involving clinicians and researchers who work with whānau or families who have tamariki with hearing loss (Eisdell Moore Centre Working Group 2022; Curtis et al. 2023).

In both Māori (Cram et al. 2003; M. H. Durie 1985) and Pacific (Tukuitonga 1990; Laing and Mitaera 1994) cultures, health is regarded as a family concern rather than an individual matter. Children are regarded as taonga, and their voices are similarly important (Moana Connect 2023). Participants emphasised the importance of improved and clearer communication between healthcare providers and whānau members. Family-centred care models aim to shift power imbalances between healthcare practitioner and healthcare user and place families as the experts in the care of their children (Shields et al. 2007). Such models are not new and have shown success across a range of areas including chronic disease (Deek et al. 2016), acute hospital settings (O’Connor et al. 2019), and paediatric hospital care (Watts et al. 2014). In the context of early hearing detection and intervention from a Global South perspective (Maluleke et al. 2021; South Africa), it is neatly summarised as a family-professional partnership that encourages information sharing and collaboration to acquire competency. Similar findings have been highlighted at home in Aotearoa New Zealand, where the use of raranga (weaving) as a metaphor illustrates relational and participatory components necessary for a whānau-centred care model for deaf Māori children (Smiler 2014), and how these are often frustratingly compromised or not considered in current models of care. It is acknowledged that the concepts of family and whānau do differ within Māori and Pacific worldviews, however the literature on the Pacific perspective in Aotearoa New Zealand remains sparse.

A review of literature from Australia, Canada, New Zealand, and the United States (McCalman et al. 2017), echoed many themes derived from this analysis. Family-centred care models implemented in primary healthcare services for Indigenous children require competent and compassionate programme deliverers, flexibility of access, continuity and integration of healthcare, and culturally supportive care, in order to support early childhood wellbeing. Other research has also documented emerging themes such as role negotiation, parental expectations of participation in their child’s care, and issues relating to power and control (Watts et al. 2014).

Whilst the implementation of health policy is relevant to addressing healthcare inequities, its enactment ultimately lies with healthcare staff who work with patients daily (Wilson et al. 2018). One suggestion made by participants was to increase training and resources for cultural responsiveness in professional practice. Cultural safety and responsiveness training and tools to address power dynamics are necessary for the ear and hearing healthcare sector to reduce ear and hearing health inequities.

Limitations and future directions

Although Kaupapa Māori and Pan-Pacific research principles were applied to the collection, analysis, and interpretation of data in this study, the research team acknowledges that this work falls short of being a true demonstration of Kaupapa Māori and/or Pan-Pacific methodological research, which emphasises the importance of co-created and community-led research design. In that sense, findings from this small sample of six interviews with whānau cannot lay claim to any substantial attempt at decolonising hearing healthcare. It is also acknowledged that the triangulation of the interview data with other tools at the collection, analysis, and interpretation stages of the process would strengthen the findings, however this was beyond the scope of the current study. Aside from disseminating via academic literature, ongoing work is being undertaken to report these findings to health-, education-, and community-based stakeholders, including whānau in Counties Manukau.

Though with its limitations, the research team believes it has achieved the primary aim of this study which was always to add to the documentation of the voices of whānau members in the literature. This study can be viewed as a stepping stone towards future research co-designed with Māori and Pacific communities. The involvement of Māori and Pacific health researchers in the team, that hold both academic and clinical roles, also serves as a catalyst for more Māori and Pacific researchers to engage in the ear and hearing healthcare space (Suzuki-Kerr et al. 2024).

Conclusion

Māori and Pasifika children and their whānau have the right to access culturally responsive, safe, and supportive ear and hearing healthcare. Six whānau shared rich knowledge from their experiences and the expertise they had developed related to ear and hearing health and services. Overall, this research has indicated that, with the right support, our participants and their children can thrive if ear and hearing healthcare services are culturally responsive and accessible, and if services work with families, recognising and fostering whānau experience and knowledge.

Contribution statement

Conceptualisation, writing, interpretation, and preparation of the draft manuscript: WT, JHL, EH, AM, ACV, SCP. Interviewer: JB. Applications for funding and wider research team: JHL, EH, AM, LJD, RPM, ACV, SCP. All authors have reviewed and approved the final version of the manuscript.

Supplementary Material

Supplemental material
TNZR_A_2432468_SM8514.docx (17KB, docx)
Whānau interview schedule
TNZR_A_2432468_SM8513.pdf (397.7KB, pdf)

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Funding Statement

Funding was received from the Health Research Council of New Zealand [Ref: 21/943/A] and the Eisdell Moore Centre for Hearing and Balance Research [Ref: PG21_016] for this phase of the project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplemental Material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/03036758.2024.2432468.

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Associated Data

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Supplementary Materials

Supplemental material
TNZR_A_2432468_SM8514.docx (17KB, docx)
Whānau interview schedule
TNZR_A_2432468_SM8513.pdf (397.7KB, pdf)

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