21
This chapter draws with permission on the work of the Aboriginal and Torres Strait Islander Reference Committee of the Centre for Research Excellence: Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE).
Previous chapters have demonstrated how research evidence is key to advancing the theory and practice of continuous quality improvement. The principles of respect, equity and justice that underpin primary health care and CQI are central to quality improvement research. In this chapter, we describe important concepts and approaches in equity- and justice-focused research, drawing on international literature and our experience in Aboriginal and Torres Strait Islander health research to illustrate how these concepts and approaches can be put into CQI research practice.
The chapter starts with an introduction to equity- and systems-focused health research, identifying the need for approaches that shift power in research, enabling the “researched” to become researchers into their priority concerns and determine appropriate action for health improvement. We refer to methodologies developed by Indigenous research leaders in response to Indigenous peoples’ experience with Euro-Western research – methodologies that align with Indigenous rights and reflect Indigenous ways of knowing, being and doing. Some of the generalisable principles embedded in these methodologies are illustrated through the research guidance provided by the Aboriginal and Torres Strait Islander Reference Committee of our Australian research collaboration, the Centre for Research Excellence: Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE). The second part of the chapter describes other participatory research approaches that respect and draw on the knowledge and lived experiences of research participants. These approaches have proved appropriate in our CQI research, empowering primary healthcare staff by building competence and confidence to sustain CQI.
Many studies identify health inequities and their causes. Progressing a health equity agenda through research acknowledges the power imbalances that prevail in research (for example, between academic institutions and participating communities) and the inequalities that exist across the health system and other systems influencing the determinants of health. While research approaches and methods vary, health research that progresses an equity agenda commonly seeks to achieve these goals:
Much quality improvement work is, by definition, concerned with healthcare equity. CQI aims to inform and sustain system changes that benefit those most in need and reduce health inequity between population groups. Research into health systems and CQI informs this endeavour. An important component of health systems research is finding ways to overcome systemic (sometimes called structural) inequities. Systemic inequities are embedded in the systems, laws, policies and practices that support unjust treatment based on intentional or unconscious prejudice. This is the experience of many poor people, and many Indigenous peoples and people of colour in countries that were colonised. Systemic inequities lead to poorer health and wellbeing for those who experience continuing discrimination and for society more generally.2 Thus, equity- and systems-focused health research has a critical role in improving health equity and social justice.
Equity- and systems-focused health research has a critical role in improving health equity and social justice.
Earlier chapters have referred to CRE-STRIDE. CRE-STRIDE is one example of a research collaboration working to strengthen systems for more equitable health outcomes through quality improvement research in Aboriginal and Torres Strait Islander health. Collaboration members have built evidence for policy, system and research reform while championing the importance of equity- and community-driven health policy. Various methodologies have been used by research teams involved in the collaboration, including emancipatory and transformational methodologies designed to support action for social justice.3 CRE-STRIDE’s approach to research is described in the next chapter.
Overcoming Indigenous healthcare inequity and injustice is a critical global health issue. Indigenous peoples comprise 5 per cent of the of the world’s population yet make up 15 per cent of the world’s extreme poor, with many communities having limited or no access to health and social services.4 Improving the availability and quality of PHC for Indigenous peoples are critical equity issues. Indigenous peoples are also among the most researched communities in the world,5 without corresponding improvements in health.6 Over the past two decades, efforts to reform Indigenous health research in several countries have acknowledged the prevailing power imbalances in academic research and taken steps to increase Indigenous community engagement and control of research. In the following pages we identify some key concepts and approaches being used to deliver healthcare equity and other benefits to Indigenous peoples through research.
The history of research for Indigenous peoples is tied to the history of colonisation. As Indigenous peoples were colonised by European nations, Indigenous societies and cultures were studied from the perspective of those with more power and privilege, and with different systems of knowledge.7 Indigenous lands, peoples and resources were observed through a lens of European values, beliefs and prejudices, ignoring extensive Indigenous knowledges developed over millennia and dehumanising Indigenous people as objects of scientific research.8
The effect and role of Euro-Western research in colonising Indigenous peoples and research has been well documented by Indigenous academics.9 While experiences of colonisation differ between colonised countries, there is common recognition that Euro-Western research paradigms contributed to racism and ongoing oppression.10 For example, colonisers used research to perpetrate inaccurate stereotyping of Indigenous peoples11 and to help justify policies that dispossessed people of their lands and freedom, repressed language use, cultural practices and spiritual beliefs, and removed children from their families.12 Much present-day research is conducted in the context of continuing colonial power imbalances. The decolonisation of research shifts these power imbalances to centre the concerns, knowledges and worldviews of Indigenous peoples.
The decolonisation of research shifts these power imbalances to centre the concerns, knowledges and worldviews of Indigenous peoples.
As Indigenous peoples demand greater control over research that involves their communities, there is increasing recognition that Indigenous cultures, knowledges and experience can inform solutions to remedy health inequities.13 Some academic systems are working towards greater Indigenous inclusion in research leadership, while policy guidelines for research in Indigenous contexts increasingly reflect the need for communities and researchers to work in partnership to identify research needs and to design, conduct and translate research in ways that benefit Indigenous peoples.14 Continuing purposeful effort is required to decolonise research.
The decolonisation of research requires researchers to examine the values that shape their practice. Values underpin every aspect of research including researcher–participant relationships, the research questions, how research is conducted, what constitutes knowledge and who owns it, how power and knowledge are shared, and other ethical decisions and behaviours.
In some countries, Indigenous peoples have identified core values to be upheld when conducting research that involves their communities. For example, in Australia, guidelines for ethical research in Aboriginal and Torres Strait Islander health are structured around six core values: spirit and integrity, cultural continuity, equity, reciprocity, respect and responsibility, as described in Table 21.1. The guidelines are adopted as government policy and companion guidelines have been developed for keeping research on track to uphold these values.15 Australian human research ethics committees use these guidelines when assessing projects involving Indigenous peoples.
|
Spirit and integrity |
The central value that binds the other five values together. Spirit is about the ongoing connection and continuity between Aboriginal and Torres Strait Islander peoples’ past, current and future generations. Integrity is about the respectful and honourable behaviours that hold Aboriginal and Torres Strait Islander values and cultures together. |
|
Cultural continuity |
Research can harm Aboriginal and Torres Strait Islander peoples’ and communities’ knowledge, cultures, languages and identity. This value is about research being conducted in a way that protects the rights of Aboriginal and Torres Strait Islander peoples to uphold, enjoy and protect their knowledge, cultures, languages and identity, as individuals and as communities. |
|
Equity |
Aboriginal and Torres Strait Islander people and communities have experienced inequities as a result of discrimination and marginalisation. Aboriginal and Torres Strait Islander peoples recognise the equal value of all individuals. One of the ways that this is shown is in commitment to fairness and justice. Equity affirms and recognises Aboriginal and Torres Strait Islander peoples’ right to be different. |
|
Reciprocity |
Aboriginal and Torres Strait Islander peoples’ way of shared responsibility and obligation is based on diverse kinship networks. This keeps ways of living and family relationships strong. These responsibilities also extend to caring for country and all within it, and involve sharing benefits from the air, land and sea, redistribution of resources, and sharing food and housing. |
|
Respect |
Respect is expressed as having regard for the welfare, rights, knowledge, skills, beliefs, perceptions, customs and cultural heritage (both individual and collective) of people involved in research. Within Aboriginal and Torres Strait Islander cultures, respect is reinforced through, and in turn strengthens, dignity. A respectful relationship promotes trust and cooperation. |
|
Responsibility |
All Aboriginal and Torres Strait Islander communities recognise the same most important (core) responsibilities. These responsibilities involve caring for Country and all within it, kinship bonds, caring for others, and the maintenance of cultural and spiritual awareness. The main responsibility is to do no harm to any person or any place. Sometimes these responsibilities may be shared so that others may also be held accountable. |
|
Source: National Health and Medical Research Council 2018a, b. | |
Table 21.1 The six core values for ethical research in Aboriginal and Torres Strait Islander health.
Articulating values can strengthen understanding of what is important to groups involved in research and support ethical practice. It has additional importance when different knowledge systems come together in a research project, when researchers have had minimal experience working in cross-cultural contexts, and when participants have had negative experiences of research.
Decolonising research methodologies emerged from Indigenous scholarship in response to the lack of engagement with Indigenous philosophies within Euro-Western research. There has been a growing body of influential literature since the Māori academic Linda Tuhiwai Smith (Ngāti Awa and Ngati Porou) published a groundbreaking book on the topic in 1999.16 Smith advocated for Indigenous intellectual sovereignty of research involving Indigenous people and interests,17 articulating the benefits of making Indigenous cultural protocols, values and behaviours integral to research methodology. Concurrently in Australia, First Nations scholar, Lester-Irabinna Rigney (Narungga, Kaurna and Ngarrindjeri Nations) defined Indigenist research as culturally safe and respectful research based on three principles: resistance as vital for emancipation; political integrity, with Indigenous Australians setting their own political agenda while simultaneously engaging in research and the Indigenous struggle; and privileging of Indigenous voices in research.18 Scholars in various colonised nations have progressed work to centre the politics of Indigenous identity, experiences and cultural action in their research approaches.19
Some Euro-Western methods that consider Indigenous critiques of research practices and integrate the values, expectations and cultures of Indigenous communities may support research decolonisation. Grounded theory, for example, is a methodology committed to social justice that may serve as a decolonising method.20
Indigenous research methodologies reference the theories and principles that Indigenous peoples have been developing and practising for millennia. In this respect, all Indigenous methodologies have a decolonising intent, empowering Indigenous peoples to represent experiences and realities consistent with cultural understandings. 21
As described by the Aboriginal and Torres Strait Islander leaders in our quality improvement research collaborative, CRE-STRIDE:
[Indigenous research methodologies] are embodied in our culture that sees, knows and feels Country and connection of kin. They reflect a complex and integrated system of knowledge and beliefs. These practices and systems have sustained our culture and continue to provide resilience for our communities against challenges brought about by the impact of colonisation.22
Descriptions of Indigenous methodologies differ based on cultural and geographical contexts and experiences of the Indigenous theorist, but there is a common essence. Indigenous research methodologies are based on Indigenous ways of knowing, being and doing, and are enacted through principles of relationality, respect and reciprocity (see Box 21.1).
Box 21.1 Theoretical principles informing Indigenous methodologies
Noonuccal scholar Karen Martin-Booran Mirraboopa identified these principles:
Recognition of our worldviews, our knowledges and our realities as distinctive and vital to our existence and survival;
Honouring our social mores as essential processes through which we live, learn and situate ourselves as Aboriginal people in our own lands and when in the lands of other Aboriginal people;
Emphasis of social, historical and political contexts which shape our experiences, lives, positions and futures;
Privileging the voices, experiences and lives of Aboriginal people and Aboriginal lands.23
Indigenous research methodologies reference the theories and principles that Indigenous peoples have been developing and practising for millennia.
Indigenous knowledge is at the core of Indigenous peoples’ rights to survival, dignity and wellbeing.24 Indigenous knowledge systems involve living well with, and being in relationship with, the natural world while building upon the experiences of earlier generations, informing the practice of current generations, and evolving in the context of contemporary society.25 Thus, the wellbeing of communities is understood to be inextricably linked to Indigenous rights and to the social, cultural, historical and environmental determinants of health.
Our knowledge systems are holistic and relational. Our health encompasses our relationship to Country, culture, spirituality, community and family. With this relationality comes responsibility . . . to look after Country and each other.26
The holistic understanding of health embodied in many Indigenous knowledge systems can inform holistic healthcare systems and comprehensive models of care.27 Because the construction of knowledge is holistic, adaptive, multilayered and continuous over millennia, the traditional knowledge and expertise of Indigenous communities can also inform responses to biodiversity risks, land and natural resources management, food security, disaster risk reduction and other issues critical to planetary and human health and survival.28 Much Indigenous health research occurs at the interface of knowledge systems.
The holistic understanding of health embodied in many Indigenous knowledge systems can inform holistic healthcare systems and comprehensive models of care.
Martin Nakata, a leading academic from the Torres Strait Islands, described the intersection of Euro-Western and Indigenous research methodologies as a “cultural interface”, where researchers generate new stories, methodologies and approaches.29 First Nations people of Canada have described this process as “two-eyed seeing”.30 The Yolηu people of Arnhem Land in Australia’s north describe the concept of Ganma, relating the coming together of two knowledge systems to the convergence of river water and seawater in a coastal lagoon.
In coming together, the streams of water mix across the interface of the two currents and foam is created. This foam represents a new kind of knowledge. The forces of the stream combine and lead to deeper understanding and truth. Essentially, Ganma is a place where knowledge is (re)created.31
Within each of these examples, Indigenous Elders and leaders describe knowledge as relational, with knowledge-sharing processes embodying mutual respect, shared benefits, reciprocity and discovery. The bringing together of Indigenous knowledge and Euro-Western science is enabling more comprehensive understandings of health, illness and healing, while challenging researchers to straddle the knowledge divide and act as agents at the cultural interface.32 Indigenous and non-Indigenous researchers are required to locate themselves within the community context and to immerse research inquiries within culture and place, while fulfilling the roles and obligations of relationships in research.33 This is a complex space requiring careful negotiation, relationship building and continuous learning – particularly given the historical dominance of biomedical knowledge and marginalisation of Indigenous knowledge in research and health care.34
The previous pages have identified some important issues and approaches for improving Indigenous healthcare equity through research, with references for further reading. Lessons learnt as Indigenous peoples seek redress from the ongoing impact of colonisation are relevant for working with groups who are oppressed and those who have historically been marginalised or discriminated against.35 The following pages describe participatory research approaches that are used more broadly in equity-focused health and CQI research.
Participatory action research has been used to develop the CQI tools (Chapter 5) and much of the evidence presented in this book (as outlined in Chapter 9). Participatory action research and community-based participatory research seek to capture and incorporate the perspective(s) of the people who are most affected by the research, positioning participants as experts in their own lives and knowledges. Research is conducted “with” or “by” people, in contrast to research “on” or “for” people, thereby facilitating shared leadership and ownership of research.36 Together, researchers and participants engage in collective, self-reflective inquiry so they can understand and improve upon their practices and situation.37
The theory and practice of both these forms of research have roots in the Indigenous de-colonial community-capacity-building practices and social movements documented in the 1960s and 1970s, rather than the academic world.38 In Australia, Aboriginal participatory action research is a transformative Indigenous research methodology that has contributed to the conceptualisation of Indigenous social and emotional wellbeing and a strength-based Indigenous psychology. This distinguishes Aboriginal participatory action research from its Euro-Western adaptation.39
Central to the methodology of participatory action research is engagement in cycles of reflection, planning, acting, further observation and reflection, then new plans and action. In this respect, its processes align with CQI cycles, such as plan-do-study-act. Within the broader framework of participatory action research, community-based participatory research focuses on issues identified by the community, empowering community members in research and prioritising opportunities to build on the community’s strengths and resources.40 Both approaches foster co-learning and capacity building between partners, with translation into action as part of the research process.
Participatory action research and community-based participatory research have potential to mobilise community action on health inequities and the social and environmental determinants of health.41 As the implementation of findings is integral to the research, these approaches have greater likelihood of bringing about sustainable changes compared with traditional research approaches.42 Bainbridge and colleagues propose that participatory action research approaches can strengthen relationships between Indigenous and non-Indigenous researchers and research users to maximise the benefits of knowledge and expertise brought by all stakeholders.43
Co-design, co-production and co-creation are related concepts. They refer to participatory processes whereby target users are involved from the start of an initiative. The “users” build and test the program or product together with the designers, service providers or researchers.
As with participatory action research, co-design and co-production (or co-creation) are intrinsically linked with the concept of empowerment. In primary healthcare research, the underlying principles are that clients and communities have expert knowledge of their lives, environment and needs, and that meaningful collaboration will result in greater benefits. These benefits may include services that are better tailored to the local setting and clients’ needs, and the experiential learning of all who are involved.
Relationships are the foundation of co-design and co-production. Together, stakeholders with productive relationships can frame the right research questions, design research for real-world environments and commit to implementing the research and the findings.44 In settings where researchers are working with minority or disempowered groups, co-production supports the use of appropriate research methodologies and strengths-based approaches (described below). In Indigenous health research, it supports critical reflexivity and has potential to deepen non-Indigenous co-researchers’ knowledge and understanding of local, place-based cultural practices. Effective research starts with striving to understand complex health issues from community perspectives and asking the right questions. It involves reporting findings in formats determined by the community, working together to locate solutions, and engaging service managers and policymakers to facilitate the use of findings for policy and system change. Positive relationships are critical.
Relationships are the foundation of co-design and co-production.
Research co-design with Indigenous participants and minority groups must be culturally safe. Every group and context are unique. Depending on the historical context, issues such as power inequalities, racism, privilege based on dominant societal culture and unconscious bias need to be addressed as part of the co-design process.45
The strengths-based approach is a philosophy and a way of seeing individuals and communities as resourceful and resilient in the face of adversity. It is a response to problem- or deficit-based approaches that focus on weaknesses, risks or needs as identified by others. A strengths-based approach is centred on solutions and capabilities; it focuses holistically on the interests, desired outcomes, and strengths that people bring to a situation. In applied research, it emphasises the self-determination and personal strengths of individuals as well as wider social and community networks. Community-based participatory research and appreciative inquiry are strengths-based research approaches.
A strengths-based approach is centred on solutions and capabilities; it focuses holistically on the interests, desired outcomes, and strengths that people bring to a situation.
Strengths-based approaches to knowing, being and doing have enabled the survival of Indigenous communities,46 with strengths-based practice identified by Aboriginal and Torres Strait Islander primary healthcare practitioners as the way of working with Indigenous people.47 Strengths-based approaches are compatible with holistic concepts of health and protective factors for wellbeing, with some authors describing culture-based and strengths-based approaches as interrelated.48
Strengths-based research approaches are consistent with ethically sound research that achieves mutually beneficial outcomes for researchers and communities.49 They are more likely to support positive stories and to motivate change than deficit-focused approaches that do not accurately reflect progress.50
As Thurber writes:
A strengths-based approach [to research] focuses on the community [or population] of interest and looks at how things are going within that population. It considers who is doing well, who is doing less well, what is working, and what is not working. This provides a more accurate story of what is going on, and it gives the community real data to work with.51
The aim of strengths-based approaches is not to deny problems or inequities. Strengths need to be understood in relation to constraints (for example, how community-driven responses are constrained by power imbalances), so that the research can support individual and community autonomy and identify pathways for translating findings into action.52
Sustainable change requires changes to systems rather than short-term effects. Systems-thinking approaches (as described in Chapter 6) underpin purposeful system change decisions. The CQI tools in Chapter 5, for example, are designed to help primary healthcare teams to use systems thinking when identifying the causes of poor-quality care and planning sustainable improvement strategies.
If CQI and health systems research are to improve equity and health outcomes, research must aim to strengthen systems for PHC, based on understanding how systems intersect and behave to influence health and wellbeing. Systems-thinking and holistic approaches to health (as defined in Chapter 1) are embodied in Indigenous understanding of life, health and human connection and in the many real-world examples of CQI in this book. The previous chapter describes improvement initiatives at different system levels and involving multiple sectors (for example, community health and housing). The next chapter describes a long-term research network focused on multi-level system reform. Holism and the use of systems thinking are common elements across this work (as are the importance of social and cultural determinants of health, and community-driven and people-centred approaches).
This chapter has described some important concepts, approaches and methodologies for advancing equity- and system-focused CQI research in PHC. It has included Indigenous methodologies that seek to redress power imbalances and ongoing colonisation through research, and participatory and system-focused research approaches that can be used in a variety of settings.
Participatory and collaborative research approaches have led the reform of methodologies used in equity-focused research. These approaches are critical for meaningful engagement, but do not necessarily bring about positive change. Transformational and emancipatory methodologies, such as those described in this chapter, are required to progress an equity agenda53 and to consciously tackle the unequal power dynamics inherent in academic power structures and much research practice. In our research interactions, we must be sensitive to different worldviews and potential miscommunication, practise cultural safety and genuinely listen to and privilege the voices of those who are traditionally disempowered through research.
The next chapter shares lessons learnt by our nationwide research network, which brings together Aboriginal and Torres Strait Islander and non-Indigenous researchers with the common aim of improving healthcare equity through collaborative CQI research.
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11 Thambinathan and Kinsella 2021.
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13 Coalition of Aboriginal and Torres Strait Islander Peak Organisations and Australian Governments 2020.
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53 Bainbridge, McCalman et al. 2019.