Responsiveness to Māori in dysphagia research: beyond ‘kai’ (nutrition), ‘inu’ (hydration), and ‘te reo’ (Māori translation)

ABSTRACT

Dysphagia services are embedded in a colonial health system that was not designed for Māori (Indigenous peoples of Aotearoa New Zealand). Despite the obligations of Te Tiriti o Waitangi and the United Nations Declaration on the Rights of Indigenous Peoples, dysphagia research that benefits Māori remains to be established. A paradigm shift in the dysphagia literature warrants critical analysis and reflection on different ways of knowing, doing, and thinking. In Aotearoa New Zealand, the effects of colonization, racism, systems, and power dynamics on Māori with swallowing problems should be further examined. Relationships must be meaningful between dysphagia research teams and Māori (patients, whānau (family), hapū (sub-tribe), iwi (tribe), communities, health professionals, researchers) and support Māori leadership. Future dysphagia research should encompass Te Tiriti obligations, Māori rights to health, cultural safety, and Māori ethical considerations, such as Māori data sovereignty. This paper considers how an equity-based approach in dysphagia research can better support Māori with swallowing problems and their whānau, and achieve equitable outcomes.

KEYWORDS:

• Māori health; responsiveness to Māori; deglutition disorders; dysphagia; swallowing; Indigenous peoples; health services
• indigenous

He mihi (greeting)

E te tī, e te tā, tēnā koutou.

Ko te mihi tuatahi ki ngā atua. Ko Ranginui ki runga, ko Papatūānuku ki raro.

E mihi aroha ana ki ō tatou tini mate, moe mai, moe mai, moe mai rā.

Ka nui te mihi ki te kaupapa. Ka whai tātou i ngā mātauranga hei āwhina, hei whakamana, hei whakapiki ngā tāngata whenua, ō tātou tūpuna, ā tātou mokopuna, ngā tāngata katoa hoki.

Mā tō rourou, mā taku rourou, ka ora ai ngā iwi.

Nō reira, tēnā koutou, tēnā koutou, tēnā koutou katoa.

A mihi is a customary speech of greeting and acknowledgement in te reo Māori (the Māori language). This mihi acknowledges the readers of this journal, our ancestors, and reasons for our research: to help, empower, and advocate for the health of our current, past, and future generations. A whakataukī (Māori proverb) recognizes the importance of working together; with your basket and my basket, people will thrive. The closing line sends greetings and acknowledgments to all dysphagia researchers, clinicians, students, patients, and their families.

Introduction

Eating, drinking, and swallowing saliva typically occur without conscious thought or attempt. For Māori (the Indigenous peoples of Aotearoa New Zealand), kai (food), whether it is collected, prepared, shared, or eaten, is a central part of being Māori. Mahinga kai (traditional food-gathering practices) are recognized in Māori creation narratives and depict the essence of a Māori worldview, including whakapapa (genealogy), whanaungatanga (relationships), tikanga (customs, ethics, protocols), kaitiakitanga (guardianship, protection), and mātauranga (knowledge) (Phillips, Jackson, & Hakopa, 2016). The act of eating kai is meaningful in tikanga, ceremonies – such as at the conclusion of pōhiri (welcome ceremony), and values. For example, kai and inu (drink) reflect manaakitanga (hospitality, generosity) by hosts and support whakawhanaungatanga (building relationships). If an individual suffers from swallowing problems, the negative impacts on physical, emotional, and spiritual wellbeing will also be experienced by the collective, such as whānau (family), hapū (sub-tribe), and community.

Dysphagia research that directly benefits Māori remains to be established (Meechan & Brewer, 2022). Highlighting this gap recognizes the obligations of Te Tiriti o Waitangi and Māori rights to health under the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (Borell, Gregory, McCreanor, Jensen, & Moewaka Barnes, 2009; Brewer & Andrews, 2016). It is also a reminder of the dominance of ‘Northern’ ways of knowing, doing, and thinking in the dysphagia literature, predominantly grounded in positivism and the biomedical model (Pillay & Kathard, 2018). Dysphagia services are embedded in a colonial health system that was designed for Pākehā (descendants of European settlers: New Zealand Europeans) and not for Māori. Therefore, dysphagia research with a one-size-fits-all approach risks furthering Māori health inequities (Haenga-Collins & Tudor, 2021). To improve Māori health, dysphagia research must be led by Māori, involving Māori academics, health professionals, patients, whānau, kaumātua (elders), hapū, iwi (tribes), and communities. This paper aims to provide a platform for responsiveness to Māori in dysphagia research using an equity-based approach. Responsiveness in health research refers to the Government’s responsibilities as a Tiriti partner: accounting for Māori health needs and priorities and achieving Māori health equity at the very least (Reid et al., 2017).

Colonization and Te Tiriti o Waitangi

‘There has been a deliberate misremembering of history that has obscured the reality of what colonization really was and is’ (Jackson, 2019). Colonization is not a historical event but a process that includes relentless breaches of Te Tiriti o Waitangi. Rangatira (noble Māori leaders) signed Te Tiriti on behalf of hapū to permit kāwanatanga (governance) by Pākehā. Māori were guaranteed tino rangatiratanga (sovereignty, self-determination) and equity (Mutu, 2019). However, deliberate mistranslations between the Māori and English treaty texts have advanced colonial goals (Mutu, 2011). Denial of tino rangatiratanga and confiscation of lands are two examples of breaches that have caused intergenerational trauma for whānau Māori, with detrimental effects on health and wellbeing (Macgregor Thom & Grimes, 2022; Moewaka Barnes & McCreanor, 2019). Researchers or clinicians that question or doubt the significance of prioritizing Māori (as research partners and participants) in health research are fulfilling colonial goals. ‘Unconscious bias’ may be a euphemism for personally mediated racism and justify why Māori have been excluded in planning of health research (Bourne, 2019). Racism underlies the tolerance by mainstream society of Māori health inequities that involve a high ‘cost of doing nothing’ (Reid et al., 2022).

Significant advocacy and lobbying to honour Te Tiriti o Waitangi have resulted in promising steps. Government-led initiatives and health reforms demonstrate the Government’s accountabilities as a Tiriti partner to improve Māori health, such as the Māori Health Authority and Māori Health Action Plan 2020–2025 (Ministry of Health, 2020; Te Aka Whai Ora: Māori Health Authority, 2023). Since the Government is a major funding provider, research funding bodies in Aotearoa New Zealand necessitate evidence in funding proposals that research will address Māori health priorities (Reid et al., 2017). Ethics applications serve as additional reminders to researchers of Te Tiriti obligations (Hudson & Russell, 2009). For example, the Health and Disability Ethics Committees application questions how a study may benefit Māori, whether consultation with Māori was undertaken, and prompts consideration of possible cultural issues for Māori participants in the proposed research (Health and Disability Ethics Committees, 2023).

Responsiveness to Māori

Health research that utilizes an equity-based approach focusses on Māori health priorities (to achieve equity) and building positive relationships with Māori. In a landmark paper on strengthening responsiveness to Māori, Reid et al. (2017) identify important areas for health researchers to consider: the relevance of the proposed research to Māori, the role of Māori as research participants, promoting Māori voice, and governance. These areas will be discussed and applied to dysphagia research. These considerations are to advocate for Māori rights as Indigenous peoples of Aotearoa New Zealand.

Dysphagia research that is relevant to Māori

Future research must address issues for Māori as determined by Māori, given the history of Māori ‘in research’ and ongoing impact of colonization. The word ‘research’ is sensitive given the horrific histories of research ‘on’ Māori. In ‘Decolonizing Methodologies’, Smith (2021) describes research as ‘probably one of the dirtiest words in the Indigenous world’s vocabulary. When mentioned in many Indigenous contexts, it stirs up silence, it conjures up bad memories, it raises a smile that is knowing and distrustful’ (p.1). The longstanding and recent history of Māori as the ‘exotic other’ is also well recognized (Ofahengaue Vakalahi & Taiapa, 2013). Deficit framing narratives are pervasive in research and the media, stigmatizing Māori and creating stereotypes that negatively affect health care access, delivery, and outcomes (Hyett, Gabel, Marjerrison, & Schwartz, 2019). A cultural-deficit or victim-blaming approach ignores the structural determinants or societal factors that underlie poor health outcomes (Curtis, 2016). These breaches of Te Tiriti and rights to health (UNDRIP) reflect why research ethics and funding applications must delve into how and why research is relevant to Māori.

In dysphagia research, the relevance of a project should go much further than broad rationale of swallowing function. For example, how does the project address Māori health needs, improve Māori health outcomes, or support the goal of Māori health equity? Such questions must also be answered by Māori. This reminds non-Māori dysphagia researchers about the importance of developing relationships with Māori colleagues and communities. The start of a research relationship may occur long before a research project is designed or during a consultation phase. Some research locations, such as a hospital may offer Māori consultation support. Dysphagia research teams could also contact Māori with mana whenua (tribal authority over land) where the proposed research project will take place. Kanohi kitea (the seen face) is a principle that recognizes the importance of face-to-face interactions. A relationship cannot develop over a few emails as part of a tick-box activity or a gap filling exercise to complete a research proposal and ethics application. A relationship should be reciprocal which involves information sharing. Dysphagia researchers should also ensure advice is coming from someone who is being compensated. Even better, the advice could trigger plans for collaboration. Many Māori scientists are overworked and under-resourced as they are expected to carry out two roles: academic responsibilities and cultural advice (Haar & Martin, 2022). Through relationship building with Māori networks, dysphagia researchers should look for opportunities to develop the Māori health workforce given the known inequities (Curtis & Reid, 2013). The paucity of Māori-centred dysphagia literature reflects the limited number of Māori dysphagia researchers and clinicians to date. It is essential that future Māori students and Māori early career researchers working in the dysphagia research space receive culturally safe supervision and Māori mentorship (Reid et al., 2017).

Māori participating in research

Ethnicity data should be captured in dysphagia research. Monitoring ethnicity is crucial for determining and analysing health status, outcomes, and inequities, which also reflects Te Tiriti obligations (Cormack & Robson, 2010). In prospective studies research participants should self-complete the standard ethnicity question (Ministry of Health, 2017). Ethnicity and ancestry are not interchangeable terms; dysphagia researchers should clearly distinguish their definitions and usage (Reid et al., 2017).

Colonization has disrupted how Māori live as Māori and connect with te ao Māori (the Māori world). Cultural subjugation and assimilation policies were designed to domineer English over te reo Māori. From the mid-1800s to the late-1900s, corporal punishment was often enforced to stop tamariki Māori (Māori children) from speaking te reo (Durie, 1998). Consequently, many Māori today feel intergenerational mamae (hurt) and hakamā (shame, embarrassment) for not being able to converse in te reo Māori. Therefore, the use of te reo Māori in research projects must be planned carefully and appropriately. The initial focus or priority of dysphagia research projects should not be the translation of participation sheets and dysphagia assessments into te reo Māori. Due to colonization, Māori also have different levels of exposure and understandings of mātauranga and tikanga Māori. Therefore, it is important that dysphagia research projects allow space for the diverse realities of being Māori. Dysphagia researchers should ensure their research methods and practices are culturally safe by critically reflecting on biases and power dynamics in health systems, research relationships, and patient-clinician relationships (Curtis et al., 2019). Dysphagia researchers should also engage in anti-racism (Ellis & Kendall, 2021).

Māori voice and representation

In Aotearoa New Zealand, the estimated Māori population (875,300) is 17.1% of the total population (Statistics New Zealand, 2021). However, this population estimate should not justify the recruitment of Māori participants as a minority in studies. If 17% of a sample size included Māori participants, findings would privilege non-Māori and not prioritize Māori health needs. Equal explanatory power advocates for equal numbers of Māori and non-Māori participants or respondents (Te Rōpū Rangahau Hauora a Eru Pōmare, 2002). This conflicts with the research paradigm of positivism which dominates dysphagia research. Consequently, dysphagia research groups should support students to explore the philosophical underpinnings of positivism, develop critical thinking in research methodologies, and recognize there is more than one approach to conducting swallowing-related research (Park, Konge, & Artino, 2020). Assumptions of positivism also conflict with the power struggles from colonization and the need for Māori transformation within Kaupapa Māori theory (Haitana, Pitama, Cormack, Clarke, & Lacey, 2020). A kaupapa Māori approach to research will be most beneficial for Māori with swallowing difficulties and their whānau, as well as Māori health professionals working in dysphagia services.

Governance

Dysphagia researchers and clinicians advocate for the best interests of a person with swallowing problems by balancing patient and whānau preferences, medical advice, quality of life, and risk (Leslie, Lisiecka, & Lisiecka, 2020). Given the complexities in dysphagia management that may involve ethical dilemmas, considerations of governance are standard practice. Principles of clinical governance include patient-centred care, open and transparent culture, active participation by staff to critically review quality of care and patient safety, and a continuous focus on quality improvement (Health Quality & Safety Commission, 2017). Governance as a facet of responsiveness to Māori may be a less familiar concept that specifically recognizes Māori values and protects Māori rights and interests through standards and regulatory processes (Hudson, Milne, Reynolds, Russell, & Smith, 2010). Accordingly, all dysphagia researchers in Aotearoa New Zealand should be well-familiarised with Te Ara Tika: Guidelines for Māori research ethics (Hudson et al., 2010). These guidelines present a Māori ethics framework with four tikanga based and ethical principles: tika (research design), manaakitanga (cultural and social responsibility), whakapapa (relationships), and mana (justice and equity). Each principle includes questions to prompt researchers over three progressive levels of expectations: minimum standards, good practice, and best research practice. Governance in responsiveness to Māori also recommends dysphagia research teams to define their ‘culture’ and ways of doing and being, which includes critical reflection of research relationships with Māori (Hudson et al., 2010).

Consent

When using a health or disability service, every individual has the ‘right to make an informed choice and give informed consent’ (Health and Disability Commissioner (Code of Health and Disability Services Consumers’ Rights) Regulations, 1996). In a research context, reading and signing an individual consent form may not suffice for Māori participants. Collective consent may be more appropriate given the significance of shared decision-making in te ao Māori among whānau, hapū, and iwi (Hudson et al., 2010). Informed consent may also be obtained orally rather than in written form. These considerations demonstrate the importance of maintaining positive research relationships with Māori, as research cannot be conducted without consent.

Data sovereignty

Te Mana Raraunga is the Māori Data Sovereignty Network which advocates for Māori rights, interests, and governance of Māori data as a living taonga (treasure) (Te Mana Raraunga, 2023). Dysphagia researchers should incorporate the six principles of Māori data sovereignty at all research stages: rangatiratanga (authority), whakapapa (relationships), whanaungatanga (obligations), kotahitanga (collective benefit), manaakitanga (reciprocity), and kaitiakitanga (guardianship) (Te Mana Raraunga, 2018). Dysphagia research teams should also review the Charter of Te Mana Raraunga and appraise how their research is meeting the standards for Māori data sovereignty (Te Mana Raraunga, 2016). This includes the safeguarding and protection of data, how data is stored, the timeframe, the limitations for use, and the potential for future data use.

Future directions

Every dysphagia-related study should be supported by Māori as tangata whenua (Indigenous peoples of the land) and strive for best research practice in Te Ara Tika (Hudson et al., 2010). In a research relationship, Māori should be a partner actively involved in research planning, gathering data, analysing findings, and disseminating research results, rather than a consultant. Dysphagia research study designs should encompass Te Tiriti obligations, Māori rights to health (UNDRIP), Te Ara Tika, pro-equity, and anti-racism. All members of the dysphagia research team should demonstrate cultural safety throughout the duration of research projects. Māori data sovereignty should be carefully planned for with reference to the Charter of Te Mana Raraunga and support from Māori in the research relationship.

Subjective narratives of dysphagia experiences from Māori perspectives have merit. However, dysphagia research aims and goals should involve transformative change to systems and policies that encompass dysphagia services and swallowing management, in order to improve Māori health outcomes and achieve equity for Māori. How might rates of diseases, conditions, and comorbidities known to affect swallowing be reduced for Māori, so that Māori are less likely to suffer from swallowing difficulties in the first place?

Conclusion

Dysphagia researchers and clinicians in Aotearoa New Zealand operate within colonial education and health systems. Māori with swallowing problems are managed by a service that was designed for mainstream Pākehā. Based on Te Tiriti and UNDRIP, dysphagia researchers have a duty to ensure dysphagia research planning, aims, methods, and future aspirations are responsive to Māori. Dysphagia research that benefits Māori runs much deeper than providing cultural food or drink and translation services. Rangatiratanga (self-determination), mana motuhake (autonomy), Māori leadership, and Māori aspirations are central to the positive transformation of dysphagia management and services in Aotearoa New Zealand. Engaging in critical conversations and advancing cultural safety also offer opportunities to better serve all people with swallowing difficulties and their loved ones. What is good for Māori, is good for everyone (Gurney, Campbell, Jackson, & Sarfati, 2019, p. 73).

Glossary

kai	=	food
kaitiakitanga	=	guardianship, protection
hakamā	=	shame, embarrassment
hapū	=	sub-tribe
inu	=	drink
iwi	=	tribe
kanohi kitea	=	the seen face (face-to-face interaction)
kaumātua	=	elders
kaupapa Māori	=	Māori approach, initiative, agenda, principles
kāwanatanga	=	governance
mahinga kai	=	traditional food-gathering practices
mamae	=	hurt
manaakitanga	=	hospitality, generosity
mana motuhake	=	autonomy
mana whenua	=	tribal authority over land
Māori	=	Indigenous person of Aotearoa New Zealand, normal, usual
mātauranga	=	knowledge
mihi	=	customary speech of greeting and acknowledgment
Pākehā	=	descendants of European settlers, New Zealand European
pōhiri	=	welcome ceremony
taonga	=	treasure
tamariki	=	children
tangata whenua	=	Indigenous peoples of the land
te ao Māori	=	the Māori world
te reo Māori	=	the Māori language
tikanga	=	customs, ethics, protocols
tino rangatiratanga	=	sovereignty, self-determination
whakapapa	=	genealogy
whakataukī	=	Māori proverb
whānau	=	family
whanaungatanga	=	relationships
whakawhanaungatanga	=	building relationships

Acknowledgements

E mihi nunui ana ki a Dr Kimiora Henare i tana manaakitanga – a sincere thank you to Dr Kimiora Henare for sharing feedback on the draft of this manuscript.

Disclosure statement

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