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This chapter is set out in three parts. The first describes the perspectives, theoretical paradigms and framework of the study. The second part outlines the case study design, and the final part of this chapter describes the research methods.

I will begin by describing the world views and philosophical traditions that inform the study. The goal of this research is to contribute to improvement in cancer survival outcomes and quality of life throughout all stages of the cancer journey for Māori by informing future developments in cancer control. The research does this by critiquing the current structures, systems and roles for cancer prevention, screening, diagnosis, treatment, palliative care and survival. As the title of this thesis suggests, there is a particular focus on the role and potential of community care throughout each of these areas.

This research uses a Māori-centred approach, which has a natural fit with a critical, feminist theoretical lens. To guide the concept development, the research process and analyses, I have drawn on critical theory (Denzin & Lincoln, 2008; Kincheloe, McLaren & Steinberg, 2011; Smith, 2012), feminist theories (Balbo, 1987; Barnes, 2006; Gilligan, 1982,1995, 2003; Narayan,1995; Olesen, 2011; Sevenhuijsen, 1998; Tronto, 1993, 1998), cultural safety education theory (Anderson et al, 2003; Bracoupe & Waters, 2009; Denier & Gastmans, 2013; Jungerson, 2002; Nguyen, 2008; Papps, 2015; Polascheck, 1998; Ramsden, 1993,1997, 2002) and racial discrimination theories (Cormack et al, 2013; Harris et al, 2006, 2012a, 2012b, 2013; Jones, 2000; Krieger, Chen & Waterman, 2011). Each of these approaches and their relevance for this research will be discussed in turn. Firstly however, I will describe how this research is located within a Māori- centred research framework.

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Māori-centred research

“From the vantage point of the colonized, a position from which I write, and choose to privilege, the term research is inextricably linked to European imperialism and colonialism. The word itself ‘research’ is probably one of the dirtiest words in the Indigenous world’s vocabulary.” (Smith, 1999, p. 1)

It is important to position this work as Māori-centred at the outset because immediate clarity is required when research involves Māori, regarding who is driving the research, and why, how, and for whom it is being undertaken. This urgency stems from acknowledging a legacy of research, both historical and contemporary, that has exploited and alienated rather than empowered Māori, and research abuses where data were taken from Māori and used to support colonial and white superiority (my emphasis) ideologies (Bishop, 1999; Lange, 1999; Smith, 2012). Bishop (1999) describes non-Māori researchers setting out to reinforce European perceptions of Māori as a primitive people, thus justifying the world view that Western culture and people were superior and legitimating the process of colonisation.

This research paradigm cannot be relegated to an awful chapter in research history from the last century. One example within this decade is from 2007 when a pair of non-Māori researchers put Māori data in the primitive peoples (my emphasis) category when reporting their “warrior gene” hypothesis (Lea &

Chambers, 2007). The authors’ unsubstantiated genetic explanation for negative Māori social statistics was that Māori men are twice as likely to carry the

monoamine oxidase gene, which predisposed them to risk taking behaviour including smoking, gambling and violence (ibid). This research was widely

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criticised throughout peer reviewed journal publications and the mainstream media, which challenged the scientific validity as well as the ethical conduct of the study (Crampton & Parkin, 2007; Hook, 2009; Merriman & Cameron, 2007; Perbal, 2013).

As noted earlier (Krieger, 2014; Smith, 1999;), ideologies of colonial superiority and power have had harmful effects for Indigenous peoples and resulted in a justified climate of mistrust (Bishop, 1999, 2003; Brant Castellano, 2004; Martin, 2012; Pualani Louis, 2007; Smith, 1999, 2012). That Māori, both as researchers and as participants, approach research with caution, is understandable and has been an area that has facilitated strong and robust debate among academics regarding who should be conducting Māori research and how it should be undertaken (see Bishop, 2008; Pihama,1993a,1993b; Smith, 1999 & 2012).

Kiro (2001) distils this into two schools of thought for considering approaches to conducting Māori health research. One recognises that there is a unique way of conducting research which has developed a literature around ontology and epistemology informing the approach (Kaupapa Māori). The other school (Māori- centred) deems any method acceptable if it answers the research question and ultimately leads to a better understanding of the dynamics of Māori health.

Cunningham (2000) has identified four research types, which include: research not involving Māori; research involving Māori, Māori-centred research, and

Kaupapa Māori research (Table 3). These four research types were identified and discussed by the author in order to guide directions, competencies and research outcomes for the provision of Māori knowledge required for Māori development (ibid). The research types were developed in response to the Foresight Project (Ministry of Research Science and Technology, 1997) which set out the future and role of research, science and technology in Aotearoa.

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Table 3: Characteristics of four identified types of research, science and technology (Cunningham, 2000)

The research undertaken here is by Māori, about Māori and for Māori. It involves Māori participants (although not exclusively, as Māori make up a small number of the cancer policy and care workforce) and will produce Māori knowledge that will be published in mainstream fora such as this thesis and peer reviewed journal articles.

This research is intended to be viewed in the context of Māori health gains and Māori development. This bridging of Te Ao Māori (the Māori world) and

mainstream methods and tools in Māori-centred research has similarly been utilized in other Indigenous research endeavours internationally. In particular ‘Two Eyed Seeing’, a framework from American Indian and Alaska Native

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researchers for work as Indigenous researchers, within Indigenous communities (Bartlett, Marshall & Marshall 2012; Iwama et al, 2009; Martin, 2012), recognises that there are many ways of understanding the world, some of which are

represented by European based sciences and others by various Indigenous knowledge systems and sciences. Two Eyed Seeing takes care not to position one world view over another and instead “honours and accepts diverse ways of knowing” (Martin, 2012, p. 24).

Kaupapa Māori unreservedly holds Māori knowledge, beliefs and processes as normal(Reid & Cram, 1999). In other words, Kaupapa Māori privileges Māori knowledge and measures all other (non-Māori) knowledge against it, rather than the other way around. This is in a context where Non-Māori knowledge has become firmly embedded as normal (my own emphasis) within all institutions, as described by Cormack (2007): “It is in and through the various processes of colonisation that white settler ways of being and thinking have become

naturalised and universalised, as they have simultaneously become dominant, especially within elite institutions”. (p. 13)

Bishop (2008) describes contemporary Kaupapa Māori as: “a discourse of proactive theory and practice emerging from within the wider revitalisation of Māori communities”, (p. 439) thereby placing Kaupapa Māori research within the context of self-determination that has been voiced by Indigenous peoples

worldwide (Smith, 2012).

An important distinction of Kaupapa Māori research is the degree of Māori control (Cunningham, 2000). This research, although undertaken by a Māori researcher under the guidance of a Māori supervisor and in collaboration with Māori health providers, was based within a mainstream organisation (Massey University) and funded by the Health Research Council of New Zealand (HRC), the main

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government health research funding agency in the country. Thus, although some control of this project sits with Māori, the locus of control is with non-Māori.

As this research was undertaken from the platform of a university, it was

therefore bound by their constraints including ethical approval and funding. That this research was based in a mainstream university setting has strengths and weaknesses. With no political allegiance, universities have the independence and freedom to: “conduct research that is out on the edge of knowledge” (Smith, 1999, p. 224). On the other hand, Webber (2009) argues that there is a risk of academia minimising Māori research by considering it exotic, and therefore enabling “an excuse for later dismissing the validity of the work” (p. 3).

Te Awekotuku’s seven principles for a Māori-centred methodological approach (cited in Smith, 1999) provided the guidance for this study on how to conduct the research in ways that align with Māori world views and are consistent with Māori values and practices. These principles were important for grounding the research in Te Ao Māori and they provided the foundation for approaching this research. The principles are:

1. Aroha ki te tangata (respecting people)

2. Kanohi ki te kanohi (communicating face-to-face)

3. Titiro, whakarongo and kōrero (looking, listening and only then, speaking) 4. Manaaki ki te tangata (hosting or taking care of the people)

5. Kia tupato (taking care)

6. Kaua e te takahia te mana o te tangata (maintaining the integrity of the person)

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This section has positioned the research as Māori-centred by showing who is undertaking it and for whom, and the ways in which the research is consistent with Māori world views, values and practices. The following section provides the setting for the feminist ethic of care framework (Tronto, 1993,1998), cultural safety (Ramsden, 2002) and racial discrimination theories (Harris et al, 2006; 2012a, 2012b, 2013; Jones, 2000, 2002; Krieger et al, 2011) by describing how the Māori-centred approach fits within the critical theory paradigm that underpins this research.

Critical Theory

“Inquiry that aspires to the name ‘critical’ must be connected to an attempt to confront the injustice of a particular society or public sphere within the society.” (Kincheloe et al, 2011, p.164)

At the time this research was being conceptualised, I sought a theoretical foundation that would assist in stepping back from assumptions about people’s realities in relation to cancer care. I needed to draw on theories that scrutinised perceptions and power relations within different parts of the cancer care system. Critical, feminist theories fit naturally with Māori-centred research as they

recognise different realities within political and cultural contexts and work towards social change (Olesen, 2011). As this research concerns the planning,

managing, delivery and receipt of cancer care and support for Māori in Aotearoa, cultural safety theory and racial discrimination theories are also incorporated within the Māori-centred, critical paradigm.

A critical theory approach also enables me, as the researcher to be part of the picture, to have a voice in the research and do this in a careful, documented way that manages unconscious biases (ibid). This is important when considering my

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role as a Māori researcher, examining the system of care for Māori experiencing cancer.

To assist in understanding the methodology for this research, I will now position this Māori-centred approach within the critical theory paradigm, as this will aid in further discussion of the feminist ethic of care (Tronto, 1993, 1998), cultural safety theory (Anderson et al, 2003; Brascoupe & Waters, 2009; Denier & Gastmans, 2013; Jungerson, 2002; Nguyen, 2008; Papps, 2015; Polascheck, 1998; Ramsden, 1993,1997,2002) and racial discrimination theories (Harris et al, 2012; Harris et al, 2006; Jones, 2000; Krieger, Chen & Waterman, 2011).

Kincheloe and colleagues (2011) contend that an important part of critical theories is their role in challenging the dominant discourse. In the case of this research, and as articulated clearly in the cultural safety literature from Aotearoa (see Ramsden, 2002), the dominant discourse is that imposed by colonists, which dismissed collectives, reciprocity and relationships, and instead introduced a new construct of the autonomous individual.

According to Kincheloe and colleagues (ibid), the critical theory tradition is constantly evolving, and it is therefore difficult to assign it a single definition. The authors have listed a wide range of theorists who have informed critical theory such as Marx, Kant, Hegel, Weber, and Freire. Work by Indigenous and feminist scholars also fit within the critical theory sphere. Indigenous theorising from Smith (1999), Pihama (1993), Bishop (2008) and Narayan (1995) for example, alongside feminist theorising from Barnes (2006), Gilligan (1995), Tronto (1993,1998) and others, have contributed to the critical theory and ethic of care framework shaping this research.

Kincheloe and colleagues (2011) argue that: “Critical theory should not be treated as a universal grammar of revolutionary thought, objectified and reduced to

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discrete formulaic pronouncements or strategies”(p. 164). Having said that, the authors go on to usefully provide the following list of basic assumptions for a ‘criticalist’ researcher:

 All thought is fundamentally mediated by power relations that are social and historically constituted.

 Facts can never be isolated from the domain of values or removed from some form of ideological inscription.

 The relationship between concept and object and between signifier and signified is never stable or fixed and is often mediated by the social relations of capitalist production and consumption.

 Language is central to the formation of subjectivity (conscious and unconscious awareness).

 Certain groups in any society and particular societies are privileged over others and, the oppression that characterises contemporary societies is most forcefully reproduced when subordinates accept their social status as natural, necessary or inevitable.

 Oppression has many faces, and focusing on only one at the expense of others (eg class oppression versus racism) often elides the interconnections among them.  Mainstream research practices are generally, although most often unwittingly,

implicated in the reproduction of systems of class, race and gender oppression. (p. 164)

These assumptions show how the conduct of research is affected by the history, values, beliefs, and cultural contexts of the researcher and the researched. To understand further how critical theory guides this research it is useful to position it alongside other inquiry paradigms such as positivism, postpositivism,

constructivism and participatory as identified by Lincoln, Lynham and Guba (2011) in Table 4.

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