Hearing loss is a critical public health concern for older Māori. Based on the 2013 census, 32% of Māori aged 65 years and over reported experiencing hearing loss, compared with 28% of the total 65+ Aotearoa New Zealand (NZ) population.[[1]] Despite having higher rates of ‘self-reported’ hearing loss, Māori have more unmet need for special equipment (30.4%) in comparison to older non-Māori (17.4%).[[1]] This is concerning, with evidence revealing an increased risk of accelerated cognitive decline in older adults with untreated hearing loss.[[2]]

The last report to the NZ government concerning hearing loss among Māori, Whakarongo Mai, was documented in 1989.[[3]] To reduce the high level of hearing loss among Māori adults, the Whakarongo Mai Review Team (the Review Team) recommended routine collection of ethnic-specific diagnosed hearing loss data, appointment of a senior Māori Hearing Officer, coordination between government agencies, further subsidy for adult hearing aids and the building of hearing services through active Māori participation. Over thirty years later, these recommendations are yet to be actioned.

Many older Māori have extensive roles and functions in society. It is within these roles as well as relationality that older Māori find reciprocal involvement both demanding and rewarding.[[4]] However, hearing loss may impede Indigenous elders’ communication abilities that are required to be involved. In 2002, for example, Castleden,[[5]] a non-Indigenous Canadian researcher, reported that hearing loss among Echuse elders limited their capacity to share knowledge through traditional oral histories. Addressing gaps in accessibility to hearing services and information may be required to help hard-of-hearing older Māori maintain culture, local knowledge and quality relationships with whānau (immediate and extended family network) and communities.

This scoping review sought to synthesise knowledge on older Māori and whānau experiences of hearing loss and hearing services within the NZ context and identify knowledge gaps for future research. The literature will be analysed through a Kaupapa Māori lens, a critical approach to sharing whose reality is being reported and by whom. The findings will be used to guide Kaupapa Māori research on hearing loss and hearing services among older Māori and whānau.

Positioning

This study was informed through a Kaupapa Māori positioning. According to Linda Tuhiwai Smith,[[6]] researchers should be involved in retrieving spaces for Māori voices and perspectives in which Māori realities are seen as legitimate and transformation occurs. This is what underpins Kaupapa Māori.

Curtis[[7]] articulates a set of key principles that Kaupapa Māori research should consider to be effective. That is, Kaupapa Māori research should have transformative meaning for Māori; be beneficial to Māori; be under Māori control; be informed by mātauranga Māori (Māori knowledge systems); be accepting of multiple Māori realities; align with a structural determinants approach to critique issues of power, privilege and racism; support social justice and decolonisation; and be non-victim blaming and reject cultural-deficit theories.

Methods

The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist[[8]] (Appendix Table 1) was adopted to ensure thorough selection, reporting and mapping of literature. Two search strings using key words and Boolean logic were developed to find literature on older Māori and whānau experiences of (1) hearing loss and (2) hearing services:

1. (“hearing health” OR “hearing loss” OR “hearing impairment” OR “hearing disability” OR “hard-of-hearing”) AND (M?ori OR wh?nau OR kaum?tua OR kuia OR elders);
2. (“hearing servic*” OR “hearing care” OR audiolog*) AND (M?ori OR wh?nau OR kaum?tua OR kuia OR elders).

(The * and ? symbols are wildcards for alternate word endings and replacing characters respectively (eg, ‘wh?nau’ was used for ‘whanau’ and ‘whānau’).)

AM identified records through database searching: Cochrane SR, EBSCOhost, Google Scholar, Informit, Index New Zealand, PsycINFO, PubMed, ScienceDirect, Scopus, Web of Science and Wiley Online Library. Duplicate records were removed and the remaining records were screened. Non-English papers and irrelevant research topics were excluded. The final full-text sources were selected for analysis if they addressed the aim in question and fit the inclusion criteria: set within the NZ context; articles, book chapters and grey literature published between January 1985 and June 2020; and sensorineural hearing loss and hearing service experiences of hard-of-hearing Māori and whānau of Māori with sensorineural hearing loss across all ages.

Both GS and EC reviewed the content credibility of the final literature identified. Data charting (a data extraction process in a scoping review) was used to extract information from the literature. The data on study characteristics (eg, author, year of publication, type of publication and study aim), population characteristics and key findings (eg, methods and methodology used and experiences of hearing loss and hearing services) were extracted, tabulated and summarised narratively.

Results

The search process is illustrated through a PRISMA flow diagram (Figure 1).[[9]] A total of eight primary sources were considered eligible for this review. These included: five articles, a conference abstract, a government report and a Master of Audiology thesis. All sources presented information on experiences of hearing loss among Māori.[[3,10–16]] Two sources provided information on experiences of hearing services among hard-of-hearing Māori.[[3,15]] Only one source discussed whānau experiences of hearing loss and hearing services across NZ.[[16]] See Appendix Table 2 for a summary of the literature.

Figure 1: Modified PRISMA flow diagram of the literature search.

There is a paucity of research concerning older Māori and whānau experiences of hearing loss and hearing services within NZ. Although there were small fragments on the experiences of hearing loss and/or hearing services among Māori in each of the sources, zero sources had a sole focus on hearing loss and hearing service experiences among older Māori and their whānau.

Four main themes emerged from the literature:

1. Hearing loss disrupts day-to-day functioning.
2. Māori and whānau impacted by hearing loss are at a disadvantage.
3. Hearing healthcare is unaffordable.
4. Support of hearing healthcare professionals and other key players is essential.

Hearing loss disrupts daily activities

Older Māori experiences of hearing loss were identified in four sources. In 2011, Dyall et al[[10]] recruited a total of 33 kaumātua (Māori elders) aged 75–79 years in the Bay of Plenty and Lakes districts for a feasibility study. They investigated whether Māori of advanced age would be interested, and able to take part, in a questionnaire and assessments involving vision and hearing screening. The study found that 16% of participants reported hearing loss as being disruptive to their daily activities.

The feasibility study led to Life and Living in Advanced Age, a cohort study in New Zealand (LiLACS NZ).[[11]] Kaupapa Māori methods were adopted in the initial stages of engaging with and recruiting participants. Authors of the study[[11]] did not clarify whether the LiLACS NZ study was grounded in Kaupapa Māori methodology. A total of 421 Māori aged 80–90 years, and 516 non-Māori aged 85 years, were recruited at baseline. A third of Māori participants reported having significant hearing loss that interfered with their day-to-day functioning (31%; 38% for men and 26% for women), which is greater than that reported by non-Māori participants (26%; 32% for men and 21% for women).

More recently, McAuliffe, Schluter and Jamieson's 2018 cross-sectional study investigated the prevalence and extent of communication disability in NZ.[[12]] From a total of 71,859 adults aged ≥65 years (89.2% European/other; 5.4% Māori; 3.1% Pasifika; and 2.3% Asian), 30.6% of participants exhibited at least some expression disability, and 36.2% stated having at least some difficulties with comprehension. McAuliffe and colleagues also noted that Māori, Pasifika and Asian peoples, males and those who were older were more likely to experience expressive or comprehension disability, in comparison to their European/other, female and younger counterparts. Gender differences may be owed to faster hearing decline among males[[12]] and the over-representation of Māori men in many industries where noise exposure is higher.[[17]]

Zhang et al’s[[13]] cross-sectional study investigated the associations between sensory-related disability and quality of life. Table 1 in their study presents prevalence data of self-reported hearing and vision difficulties against age, sex, ethnicity and level of education. The results revealed 17% (29/170) of Māori and 21% (740/3,547) of non-Māori expressed having moderate-severe hearing difficulties with daily tasks.

We interpreted Zhang et al’s[[13]] results with caution. Although they had access to such data, the researchers did not delve into the relationships between these factors. As an example, the degree of hearing difficulty experienced by Māori men and/or women aged between 61 and 79 was not available. Age-specific data for each ethnicity could be useful in understanding Māori hearing health outcomes and the distribution of and access to resources. Although McAuliffe and colleagues[[12]] provided representative data for older Māori aged 65 years and above, Zhang et al[[13]] did not provide a representative sample size of NZ’s Māori resident population—Māori participation in the Zhang et al study (4.6%) fell short of the 6.5% of Māori aged above 60 years in the 2013 census data.[[18]] Inaccurate estimations can be problematic as poor Māori representation in research can create inequitable distribution of resources and inequitable health outcomes.[[19]]

Hearing loss creates disadvantages

Four studies highlighted several disadvantages that Māori experience due to hearing loss. Perkins and Coombes presented their research at the 2006 Conference of the Australian and New Zealand Psychological Societies.[[14]] The qualitative study documented how hearing loss impacts the lives of Māori women via a focus group of seven Māori women (no specified ages). Participants reported feeling isolated with a hearing loss and consequently withdrew from activities important for cultural identity, including conversations, learning te reo Māori (Māori language) and participation in cultural events.

Drawbacks were also discussed in Williams’ viewpoint article.[[15]] The Kaupapa Māori researcher discussed her experience as a woman with severe-to-profound hearing loss and its impacts on her various daily roles and functions in society. Williams stated having difficulties with undertaking work that relies on oral methods of communication and function, participating in te reo Māori classes, keeping safe and attending meetings, conferences and events.

Whānau of hard-of-hearing Māori children also expressed their concerns that hearing loss creates personal, social and cultural disadvantages for their children.[[16]] Māori audiologist Aroha Crisp interviewed 12 Māori whānau from five different areas within NZ (Auckland, Huntly, Tokoroa, Rotorua and Napier).[[16]] Whānau reported hearing as an important sense to have so their children can access their Māori culture through learning Māori tikanga and interacting with people in te reo Māori. From the voices of whānau: opportunities for hard-of-hearing children to actively participate in Māori society are necessary.[[16]]

In the Whakarongo Mai report, very few accounts of hearing loss among Māori adults were shared.[[3]] Of those reported, hearing loss impacted on the conditions of daily life and access to socioeconomic determinants. More specifically, untreated loss contributed to poor educational achievement, difficulties adjusting to societal demands, low incomes, job instability and high rates of unemployment.

Cost of hearing services and technology

Out-of-pocket expenses, including consultation costs, fitting services, travel costs, hearing aid batteries and repairs, were reported as a barrier to hearing services for hard-of-hearing Māori[[3,15]] and whānau.[[16]] The national subsidy for hearing aids was introduced in 1947 and covered the full cost of a hearing aid and earmould. In the 1980s, the hearing aid subsidy of $89.10 covered 15–20% of the total cost of a hearing aid, so for many elderly people aids were well beyond their resources.[[3]] The Whakarongo Mai Review Team[[3]] commented that the subsidy “barely covers the cost of the visit to the Ear, Nose and Throat consultant necessary to claim the subsidy” (p.41). Consequently, many older Māori were left with little option but to endure their hearing loss.[[3]]

Two decades later, the cost of technology and services remain unaffordable for hard-of-hearing Māori. Williams[[15]] stated affordability of a cochlear implant for many adults is marginal and eligible recipients are on average expected to wait 2–6 years. Strict eligibility criteria, financial barriers, location of audiology clinics and transportation to and from appointments were several challenges whānau experienced from getting a diagnosis or rehabilitation for their child’s hearing loss.[[16]]

Relationships in hearing healthcare

Little is known about the interactions and relationships between Māori and hearing healthcare professionals. Crisp[[16]] further explored this space and found the majority of whānau relied on their audiologist to provide them with information on hearing loss, treatment, communication and educational options. However, a number of whānau reported that their audiologist would dismiss their observations without follow-up, attribute their child's unresponsiveness to factors other than a hearing loss and not explain all viable hearing technology options. Whānau also had to proactively ask the audiologist about other options (eg, cochlear implants) for their children.

Other key persons have assisted in navigating hearing services. Whānau reported Advisors on Deaf Children (AoDC), and other families who have been through similar experiences, as useful in making decisions about their child’s journey. Very few Māori parents met up with other parents; those who did meet with other parents found it to be beneficial and assuring.

Discussion

In this review, we aimed to explore and analyse current evidence on the experiences of hearing loss and hearing services among older Māori and whānau. Only eight sources were eligible for analysis.

In summary, hearing loss has held back the lives of many older Māori. Hard-of-hearing Māori and whānau have reported difficulties with gaining control over the circumstances necessary for their health, wellbeing and cultural identity. Because access to hearing services and technology is limited by factors such as cost and poor relationships with hearing healthcare professionals, hard-of-hearing Māori and whānau may need more support along their hearing healthcare journeys. To date, no researchers have specifically focused on hearing loss and hearing service experiences among older Māori and whānau in NZ. This illustrates the paucity of research and information in this area, especially the lack of Māori-led research and research using a Kaupapa Māori philosophy that re-centers Māori ways of being, doing and knowing. This is a public health concern for older Māori, and given the number of older Māori aged 60 years and over is projected to increase from 7.4% in 2018 to 10.2% in 2038,[[18]] there is a need for Kaupapa Māori research in this area.

Hearing loss limitations

Issues with hearing loss and access to services have particular implications for Māori, as theirs is an oral-based society. Untreated hearing loss disadvantages Māori in building and maintaining te reo Māori and in their connections with all things—connections and relationships deemed by hard-of-hearing Māori and whānau as vital for cultural identity.[[15,16]]

Hearing loss restricts access to the built environment, housing to education and healthcare (ie, the social determinants of health).[[3]] This—alongside their loss of land, displacement from their homes and disruptions to Māori culture—restricts older Māori with hearing loss from reconnecting to and relearning their roots.[[3]] Consequently, Māori with untreated hearing loss may be more likely to experience significant disparities in health and wellbeing than their non-Māori counterparts.

The consequences of hearing loss are likely to extend beyond the individual to whānau, who may have limited resources and capacity to provide necessary support. Currently, no evidence is available for us to understand whānau experiences of older Māori living with hearing loss. It is likely that whānau of hard-of-hearing Māori adults are suffering from a ‘third-party disability’. That is, family members are likely to experience participation restrictions and activity limitations as a result of the health condition of a family member or significant other.[[20–21]]

A third-party disability was identified among spouses of older adults with hearing loss in Australia.[[21]] Using the International Classification of Functioning, Disability and Health (ICF) framework, Scarinci, Worrall and Hickson[[21]] found that spouses experience a range of activity limitations and participation restrictions due to their partner’s hearing loss. If whānau are also impacted by hearing loss, increasing whānau engagement in hearing services should alsobe recommended.

Many allied health professionals utilise the ICF framework, but it has its drawbacks in explaining Indigenous experiences of disability.[[22]] Hollinsworth argues that, by overlooking ancestral connectivity, community collectivity and the impacts of colonisation and institutional racism, the ICF framework ignores cultural context as a significant aspect of health and wellbeing of Indigenous peoples by overlooking ancestral connectivity, community collectivity, and impacts of colonisation and institutional racism on Indigenous peoples.[[22]] Due to the diverse Indigenous contexts, realities and understandings of disability, the use of the ICF framework for explaining Māori and whānau realities of hearing loss may need to be reconsidered. Without re-evaluation of current frameworks, the status quo is maintained and may lead to further oppression of Māori with hearing loss.

Service provision barriers

Māori and whānau have voiced their concerns around the cost of hearing services and hearing technology and the limited access to funding.[[3,15–16]] While entitlements to disability support services and other state support exist, they are not often utilised by older Māori, because the support and funding systems are complex and difficult to understand.[[23]] Cunningham and colleagues[[23]] recommend transforming these systems with older Māori engagement for better utilisation of funds and support services.

Other factors, such as poor health literacy, systemic racism and discrimination, have impacted on Māori hearing healthcare provision and outcomes.[[3,24]] Whānau in Crisp’s study often faced cost barriers and felt they were not being listened to by their professional.[[16]] It is possible the latter barrier could be in part due to the under-representation of Māori hearing healthcare professionals, a lack of cultural safety practice standards for NZ hearing healthcare professionals[[25]] and systemic racism and power imbalance in hearing healthcare, which has been reported in research overseas.[[26]]

The proportion of Māori audiologists (kaimātai ororongo) at 2% and audiometrists (kaimātau ororongo) at 0% is not representative of NZ’s resident population.[[25]] Ethnic statistics of NZ’s hearing therapists are yet to be published. The low representation of Māori in the hearing healthcare workforce could halt the profession from moving forward, particularly in a context where resources are already scarce for those who need it the most. To achieve success for Māori health- and disability-workforce development, researchers highlight the importance of incorporating a comprehensive pipeline or pathway model (from secondary to postgraduate education) that is framed from within Indigenous worldviews and addresses barriers to Indigenous student engagement.[[27,28]]

With the shortage of Māori in the hearing healthcare work¬force, the vast majority of interactions hard-of-hearing Māori and whānau have are with non-Māori hearing healthcare professionals. Jansen et al[[24]] stated that problems can arise when non-Māori staff have attitudes and perceptions to healthcare delivery that do not reflect Māori realities and cultural values. Cumulative effects of prejudice and injustice have harmful impacts on the quality of people’s lives, health and ageing. They deflect the responsibility of health professionals, hide power relations and reduce the visibility of Pākehā privilege[[29]]—“a preferential benefit accrued by Pākehā from the systems they introduced and built and continue to redefine and control.”[[29]](p.5) Culturally safe practice has the potential to expand into the hearing healthcare profession, where healthcare professionals recognise they are bearers of their own culture and attitudes and that their power can be transferred to their patient/client to establish trust.[[30]]

Education and support should not conclude in the clinical setting. Community support networks have been identified as beneficial for some Māori parents[[16]] and may prove useful in older Māori and their whānau hearing healthcare journeys. An increased emphasis on community connections may also mean community-based support resources dedicated to hearing loss, technology and services are required.

Strengths and limitations

This review is the first Māori-led analysis of literature on hearing loss and hearing service issues for Māori since the 1980s. Strict inclusion criteria focusing on Māori limited the number of resources available for examination. However, this reflects the dearth of literature, even when grey literature is included. Although inclusion of grey literature presents potential challenges, such as the quality of information, it has provided more context to the research question being examined, especially with the limited state of peer-reviewed articles. Thorough PRISMA-ScR report processes were used and literature were critically evaluated through a Kaupapa Māori lens, which we believe are noted strengths of this review.

Conclusion

Hearing loss remains a public health concern for older Māori and whānau. The findings from this literature review are concerning. Across generations, Māori have been suffering from untreated hearing loss with debilitating outcomes on health and wellbeing. This review highlights the limited availability of evidence on the experiences of hearing loss and hearing services among Māori adults and whānau. Māori-led research that sits within a Kaupapa Māori framework is needed to better understand and inform policy relating to the lived experiences of hearing loss and hearing services among older Māori and whānau.

Funding

AM completed this review as part of her PhD for which she has received funding from Brain Research New Zealand, Eisdell Moore Centre and the Ministry of Health. The funders had no role in the preparation of this manuscript.

Appendix

Appendix Table 1: PRISMA-ScR Checklist.[[9]]

Appendix Table 2: Literature review summary.