Collaborative research with Maori on sensitive issues: the application of tikanga and kaupapa in research on Maori sudden infant death syndrome.

• Author: Edwards, Shane
• Position: Research Papers

Abstract

This paper describes research practices and experiences employed by Maori field researchers within the context of a current research project that investigates the knowledge and insights of Maori families that have lost a child to Sudden Infant Death Syndrome (SIDS). The research process devised by the Maori research team made innovative use of Maori community and care worker networks in order to investigate a deeply sensitive issue and to enhance our understanding of Maori SIDS. We contextualise our commentary within tikanga and kaupapa Maori research frames. We hope that the use of diary annotations will illuminate points made in the discussion and will be of use and inspiration to researchers working with Maori on issues that would ordinarily be difficult to approach and which would therefore require measures of sensitivity and caution.

INTRODUCTION

In Aotearoa New Zealand Maori continue to experience disproportionately high SIDS rates. This is one of the primary reasons for research in this area. A key aim of the Maori SIDS project was to design and develop research processes and practices that anticipate and deal with the cultural aspects of Maori SIDS in culturally appropriate ways. The sudden and unexpected loss of an infant is a devastating experience for people of all ethnic and cultural backgrounds, and all ethnicities experience and respond to the SIDS experience in unique and culturally specific ways. We argue that Maori, therefore, utilise specific cultural beliefs and values as valid ways for understanding Maori cultural sensitivities to SIDS events. This discussion employs and discusses some of these beliefs and values in ways that enable us to examine the understandings more closely. The principles of tapu and mana in particular are explored as a means of developing understandings. These principles are also used to articulate how SIDS and other sensitive research with Maori might be undertaken in ways that are culturally appropriate. Of particular significance here is the relationship between life and death within a Maori world-view that supports the uniqueness of different groups and their approaches to sensitive issues and research.

Research processes involved in qualitative social science investigation are integral to both the direction and dynamics (Cram 1997, Pyett 2001) of research projects in terms of their impact on participants and on the eventual outcomes and findings of the study. Indigenous communities the world over have long been belittled by research done "on" them rather than with or for the benefit of these communities (Smith 1999). Too often Maori have been researched by those who view their subjects with the "colonial gaze" (Paraha 1992, Pihama 1994). The results of the research have been used to define and further malign Maori politically, spiritually, culturally, economically and socially (Stokes 1992). This has led to a negative stance towards research and researchers in many indigenous settings (Cram 1997, Humphery 2001, Jahnke and Taiapa 2003, Smith 1999).

One result of the negative stance, particularly in the investigation of sensitive topics, has been non-involvement by these communities, and in many cases this has served to further disadvantage them (Abel et al. 2001, Kearns and Dyck 2005, Smith 1999, Spoonley 2003). Disadvantages include isolation, reduced access to resources and services, and continued mistrust of and resistance to research and researchers, including Maori. While there are many success stories and some evidence of improvements in Maori wellbeing, it is often the case that the issues and concerns that affect Maori communities either continue to be dealt with ineffectively, in ad hoc ways that produce inaccurate findings, or they simply remain unaddressed. To take but one relevant example, health disparities between Maori and Pakeha have continued to grow, especially since the mid-1980s, despite decades of research and intervention (Ajwani et al. 2003).

Kaupapa Maori is a research paradigm that recognises and accommodates the unique requirements of this project. As a response to traditional Western research paradigms it acknowledges the historical experiences that Maori have had with research. It goes further to provide possibilities for creativity and innovation within a framework that is responsive, reflective and accountable.

This paper was written as part of the project Experiences of Maori SIDS Parents, Caregivers and Whanau, funded by the Health Research Council. The project investigated the contextual processes and practices within which SIDS is experienced by parents and caregivers. The aim of this discussion is to highlight interesting and valuable innovations in the research process that we used in order to ensure the effectiveness and integrity of our approach in an area that is at once very difficult to access and of great concern to Maori communities. We explore the influences of tikanga and kaupapa Maori on the research to contextualise our examination of the delicate balance among the aims and needs of the project, the role of the national Maori SIDS prevention (MSP) team, the safety of the interviewees, and how the research demonstrates sensitivity towards that complex relationship. The research is both conceptual and experiential, and this discussion has been freely and liberally interspersed with excerpts from our field notes about our own experiences in this project.

WHAT MIGHT BE CONSIDERED SENSITIVE

Defining the sensitivity of a research topic is complicated by the norms of groups; what might constitute a sensitive issue varies with cultural and other contextual factors. In research around loss and grief, Maori life principles provide some guidance as to areas of high sensitivity, normalising Maori world views into design, process (Jahnke and Taiapa 2003, Smith 1999) and research frame.

Two Maori principles that have provided Maori society with rules for living are the principles of tapu and mana. Although these concepts are widely used by Maori and others, there is a considerable variability and nuance, which make definition difficult beyond the general. In its very broadest sense tapu refers to the sanctity (or restriction) of something or someone, and mana refers to the inherent power of something or someone. With the concept of tapu it is possible to talk of tapu o and tapu i. Our understanding is that tapu o refers to the sanctity of someone or something that stems from the divine or spiritual realm--a faithfulness--and tapu i refers to a sanctity that has been grown over time (Shirres 1997). This same principle can be applied to mana, where mana o is derived from mana atua and mana i is derived from mana tangata. Those things or people that have mana or tapu atua are created or born with this, while mana tangata and tapu tangata are strengthened or weakened depending on the acts of the various parties (Barlow 1991).

Maori generally acknowledge that human beings are born with te ira atua, divine spirit that endows them with tapu. People also have mana atua, and this "power" stems from this divine spirit that is in each of us. We therefore have tapu atua, which is the precursor to mana atua. Based on our actions or those of our relations our tapu tangata and mana tangata is enhanced or reduced depending on our activities. Based on this it is apparent that, in relation to people, sensitivity can be considered anything that deals with the tapu and mana of something, but most commonly with people. If research activity is likely to have effect on a person's tapu or mana, whether this person is living or dead, then this should be considered sensitive.

Another principle that guides many Maori researchers is the relationship between life and death. Life is a matter of extreme sanctity within Maori society and death is an integral part of life. In matters of death, health and the human body, the researcher will encounter important issues around tapu and mana. When a baby dies suddenly without apparent cause, as is the case in SIDS (which is in effect a default diagnosis that accounts for unexplained death), all of these factors converge to create situations of the highest sensitivity.

Over recent years appropriate ways to conduct research with Maori and within Maori communities have been developed. Approaches such as "involving Maori," "employing Maori," "research by and for Maori" (Bishop 1996, Cram 1997) are some examples that build on the pioneering work of Linda and Graham Smith in developing Kaupapa Maori research as a valid research methodology. Such approaches (Smith, 1993, Smith and Pihama 1995) are based on Maori epistemology and pedagogy, which are concerned with positive social transformation through the application of research methodology (McManus 1997). Kaupapa Maori research is the notion that indigenous approaches to research seek positive and improved outcomes for the participants and their wider communities. Smith (1999) says that Kaupapa Maori approaches to research are based on the assumption that research that involves Maori people, as individuals or as communities, should set out to make a positive difference for the researched. She adds that historically, indigenous peoples have not seen the positive benefits of research, and that this naming of research has provided a focus through which Maori people, as communities of the researched and as new communities as the researchers, have been able to engage in a dialogue about setting new directions for the priorities, policies and practices of research for, by and with Maori.

Many Maori are now much more aware of the effects of research and its potential to empower or disempower different groups (Cram 2001, Edwards 1999). Maori are becoming more aware of culturally appropriate practices for meeting and interacting in ways that are...