Evidence Matters: Research with Aboriginal and Torres Strait Islander Peoples and Communities

Abstract

The Evidence Matters column for this ethics special issue of JCPSLP has been written in collaboration with Tara Lewis, a proud Iman woman who has had the opportunity to learn some traditional language from her Elders. Tara and I have worked together at Speech Pathology Australia since 2021, and during that time, Tara has generously shared knowledges and insights regarding Aboriginal and Torres Strait Islander ways of seeing, knowing, being, doing, and belonging. I am sincerely grateful for the opportunity to collaborate on this column with Tara to learn and write about such important topics relating to research with Aboriginal and Torres Strait Islander Peoples and communities.

This column is relevant to speech-language pathologists who consume/use evidence in practice and those who contribute to creation of evidence through gathering practice-based evidence and undertaking research. Considerations for ethical and evidence-based speech-language pathology practice with Aboriginal and Torres Strait Islander Peoples and communities are discussed.

The authors acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past, present and future. They recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander Peoples are grounded in continued connection to culture, country, language, and community, and acknowledge that sovereignty was never ceded.

Speech-language pathologists (SLPs) in Australia come from, and work with, individuals and communities from a diverse range of backgrounds and identities. Sometimes this involves working with people who share a similar background and worldview to their own; however, SLPs often work with people with backgrounds and identities that differ from theirs, which requires awareness, critical reflection, humility, and enhancement of personal skills and capabilities to provide responsive and safe services across the broad scope of speech-language pathology practice.

Engaging in culturally responsive practice with Aboriginal and Torres Strait Islander Peoples is a professional, moral, and ethical responsibility for SLPs in Australia, whereby SLPs have an “ethical obligation to support people to exercise their human rights and … act according to relevant legislation” (Speech Pathology Australia [SPA], 2020a, p. 5). Human rights and freedoms are mandated for all people, and there are specific rights for Indigenous Peoples throughout the world, including Aboriginal and Torres Strait Islander Peoples. SLPs in Australia must uphold the Code of Ethics (SPA, 2020a), which states that SLPs engage in “effective, culturally responsive assessment and diagnosis, intervention, collaboration, advocacy, community education, and research processes” and practice “with an awareness of the broader context of human rights of the individual” (p. 2). Additionally, SLPs in Australia have a responsibility to engage in evidence-based practice (EBP), which involves considering and integrating perspectives and cultural needs and values of individuals and communities; evaluating and interrogating the evidence base of external research for relevance and applicability to service users; reflecting on personal biases, worldviews, and ways of knowing; and considering factors within local, national, and international contexts relating to professional practice (Hoffmann et al., 2017; McGill, 2021, 2022a, 2022b, 2023; SPA, 2021). The Professional Standards for Speech Pathologists in Australia (SPA, 2020b) also state that SLPs “provide access to culturally safe and responsive services that acknowledge and respond to cultural and linguistic diversity in the communities and individuals they serve” (p. 6). Further, SLPs should be “guided by Aboriginal and Torres Strait Islander Peoples and communities to respond to their shared identity as well as the differences in history, culture, language and traditions across nations, communities, families and individuals” (SPA, 2020b, p. 12). Certified Practising Speech Pathologists (CPSP) of SPA must engage in mandatory hours of cultural learning to build their cultural capability in relation to Aboriginal and Torres Strait Islander Peoples.

Australia has a long history of denial of human rights and humanity for Aboriginal and Torres Strait Islander Peoples following invasion by settlers. Among many injustices is a history of research undertaken on or to Aboriginal and Torres Strait Islander Peoples by white researchers “to see, to name and to know Indigenous lands, Peoples and resources” (Laycock et al., 2011, p. 5) using Western approaches and worldviews, without consent and/or research being of benefit to communities (Simpson, 2017; Smith, 2012). This created a narrative of deficit where Aboriginal and Torres Strait Islander Peoples were considered “primitive” or “other” in comparison to a white monolingual norm (Smith, 2012). While guidelines and frameworks now exist to inform and guide the ethical conduct of research and protect the rights and values of Aboriginal and Torres Strait Islander Peoples, there is still much work to be done to change the narrative and ensure culturally safe speech-language pathology practice as defined by Aboriginal and Torres Strait Islander Peoples. This has important implications for SLPs who are the consumers and/or creators of evidence.

This column discusses:

• definitions and history of Aboriginal and Torres Strait Islander research;

• key principles and ethical guidelines relating to Aboriginal and Torres Strait Islander research; and

• considerations for EBP in speech-language pathology for both consumers and creators of research evidence.

What is Aboriginal and Torres Strait Islander research?

Aboriginal and Torres Strait Islander Peoples are the First Peoples of Australia, who have lived on the Australian continent for over 65,000 years and “have among the oldest knowledge and research traditions in the world” (Laycock et al., 2011, p. 8). Prior to invasion, Aboriginal and Torres Strait Islander Peoples demonstrated knowledge systems and research paradigms that connected land, ceremony, languages, and law to knowledge bearers and people as a collective (Laycock et al., 2011). Aboriginal and Torres Strait Islander Peoples have always conducted research and continue to translate knowledge according to community protocol and customary rules, laws, and responsibilities (Laycock et al., 2011).

In their Code of Ethics for Aboriginal and Torres Strait Islander research, the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) considers Aboriginal and Torres Strait Islander research to include:

“all research that impacts or is of particular significance to Aboriginal and Torres Strait Islander peoples, including the planning, collection, analysis and dissemination of information or knowledge, in any format or medium, which is about or may affect Indigenous Peoples, either collectively or individually” (AIATSIS, 2020a, p. 6)

This includes, for example, research where:

• “The target population is Aboriginal and Torres Strait Islander individuals, groups, communities or societies.

• The target population is not explicitly Aboriginal and Torres Strait Islander individuals or communities but the research population includes a significant number of Aboriginal and Torres Strait Islander people.

• Aboriginal and/or Torres Strait Islander people have been incidentally recruited and researchers wish to do separate analysis of Indigenous-specific data” (AIATSIS, 2020a, p. 6).

History of research undertaken “on” or “to” Aboriginal and Torres Strait Islander Peoples

Aboriginal and Torres Strait Islander Peoples are the most researched Peoples in the world (Smith, 2012), and “when done well, research can, and has, had positive impacts for Indigenous Peoples, but research has not been immune to practices that are imbued with racism, exploitation and disrespect” (AIATSIS, 2020a, p. 11). Research has predominantly been undertaken by white people through a colonised lens and using Western research approaches, drawing comparisons to a white, monolingual norm whereby Aboriginal and Torres Strait Islander cultures, languages, stories, and identities are seen as lacking, inferior, problematic, or even invisible to white researchers (Smith, 2012). These approaches have failed to affirm and celebrate the strengths of Aboriginal and Torres Strait Islander Peoples and communities regarding culture, language, and ways of seeing, knowing, being, doing, and belonging. “Cultural practices were misrepresented and described in ways that reflected non-Indigenous researchers’ values, beliefs and prejudices” and “Indigenous people tended not to have a voice and were dehumanised or ‘othered’ as objects of scientific research” (Laycock et al., 2011, p. 5). Scientific research has traditionally been undertaken from a position of ownership, power, and privilege, with white researchers maintaining ownership of the knowledge and data. This Western knowing and ownership of knowledge has been supported by “institutions, vocabulary, scholarship, imagery, doctrines, even colonial bureaucracies and colonial styles” (Said, 1978, cited in Smith, 2012, p. 2).

Moving forward with research undertaken “by”, “with”, and “for” Aboriginal and Torres Strait Islander Peoples and realising human rights

Importantly, “research has progressed a long way from the approaches of those times” (Laycock et al., 2011, p. 8). Moving forward, still more work is needed to change the narrative, realise the fundamental rights and freedoms of Aboriginal and Torres Strait Islander Peoples, and ensure “research is considered, meaningful, ethical and beneficial to Aboriginal and Torres Strait Islander people and communities” (National Health and Medical Research Council [NHMRC], 2018c, p. 1). Frameworks, guidelines, and processes exist and must be adhered to by researchers involved in Aboriginal and Torres Strait Islander research.

The human rights of Indigenous Peoples throughout the world

The United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP; United Nations, 2007) is a “universal framework of minimum standards for the survival, dignity and well-being of the Indigenous Peoples of the world” (United Nations, n.d., para. 2). The UNDRIP was adopted in 2007, and Indigenous peoples, including Aboriginal and Torres Strait Islander Peoples, participated in its drafting (Australian Human Rights Commission, n.d.; United Nations, n.d.). Australia, however, did not endorse the Declaration until 2009 (NHMRC, n.d.-a). The UNDRIP expands upon “existing human rights standards and fundamental freedoms as they apply to … Indigenous Peoples” (United Nations, n.d., para. 2). Of particular relevance to research with Aboriginal and Torres Strait Islander Peoples is Article 31 ofthe UNDRIP:

1. “Indigenous Peoples have the right to maintain, control, protect and develop their cultural heritage, traditional knowledge and traditional cultural expressions, as well as the manifestations of their sciences, technologies and cultures, including human and genetic resources, seeds, medicines, knowledge of the properties of fauna and flora, oral traditions, literatures, designs, sports and traditional games and visual and performing arts. They also have the right to maintain, control, protect and develop their intellectual property over such cultural heritage, traditional knowledge, and traditional cultural expressions.

2. In conjunction with Indigenous Peoples, States shall take effective measures to recognize and protect the exercise of these rights” (United Nations, 2007, pp. 22–23).

These fundamental rights and freedoms outlined in the UNDRIP are relevant to speech-language pathology practice more broadly, as well as speech-language pathology research.

Ethical guidelines and requirements for research in Australia

A suite of complementary documents and ethical guidelines exist to inform and guide research in Australia, including Aboriginal and Torres Strait Islander research. Documents that guide research more broadly, but are also relevant to research with Aboriginal and Torres Strait Islander Peoples, include the following:

• Australian Code for the Responsible Conduct of Research (NHMRC, 2018a);

• National Statement on Ethical Conduct in Human Research (NHMRC, >2018d);

• Ethical considerations in Quality Assurance and Evaluation Activities (NHMRC, 2014).

Table 1 provides an overview of four key documents that give more specific guidance, information, and requirements regarding values, ethics, and their application when undertaking Aboriginal and Torres Strait Islander research. The documents are particularly relevant to researchers and human research ethics committees (HRECs), but also to Aboriginal and Torres Strait Islander Peoples and communities who may participate in research and professionals engaging in EBP. The documents in Table 1 should be read and considered in conjunction with the three documents listed above.

Table 1. Key documents guiding Aboriginal and Torres Strait Islander research in Australia.

Document	Description	Key principles, values, and stages
AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research (AIATSIS, 2020a)	Original version released in 1999 and has undergone regular reviews and updates Applies to all Aboriginal and Torres Strait Islander research “Sets national standards for the ethical and responsible conduct of all Aboriginal and Torres Strait Islander research, across all disciplines and methodologies” (AIATSIS, 2020a, p. 2) and “additional requirements to achieve the objectives of respect and recognition set out in the Code for Responsible Research and the National Statement” (AIATSIS, 2020a, p. 4; NHMRC, 2018a, 2018d)	Describes four overarching principles: Indigenous self-determination Indigenous leadership impact and value sustainability and accountability
A Guide to Applying the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research (AIATSIS, 2020b)	Companion document to the AIATSIS Code (AIATSIS, 2020a, 2020b) Provides advice on how to apply the principles outlined in the AIATSIS Code in practice (AIATSIS, 2020a)	Describes application of the principles from the AIATSIS Code (AIATSIS, 2020a) throughout the four key research stages of: getting started implementing your project communicating research results post-project
Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders 2018 (NHMRC, 2018b)	Original version released in 2004 and has undergone evaluation, review, and revision Applies to all research conducted alongside Aboriginal and Torres Strait Islander Peoples and communitise “…Ethical guidelines provide a set of principles to ensure research is safe, respectful, responsible, high quality, of benefit to Aboriginal and Torres Strait Islander people and communities and of benefit to research” (NHMRC, 2018b, p. 2) Consistent with but does not cover all content addressed in the AIATSIS Code (AIATSIS, 2020a) Can provide “additional guidance for researchers on values and ethics when working with Indigenous people” (AIATSIS, 2020a, p. 4)	Describes six core values: spirit and integrity (central core value) cultural continuity equity reciprocity respect responsibiliyt
Keeping Research on Track II (NHMRC, 2018c)	Companion document to the NHMRC Guidelines (NHMRC, 2018b) Describes how to apply the values and guidelines outlined in the NHMRC Guidelines in practice (NHMRC, 2018b)	Describes actions to take to apply the NHMRC Guidelines (NHMRC, 2018b) at each stage in the research journey: building relationships developing the research idea developing the project and seeking agreement collecting data analysing the data and making sense of the findings writing the report sharing and translating the results into action learning from experience

Detailed information regarding each document in Table 1 is beyond the scope of this column but is contained within the documents themselves, including information regarding practical application of the values and principles in research. Some key points arising across these documents, however, include the following (AIATSIS, 2020a, 2020b; NHMRC, 2018b, NHMRC, 2018c):

• Respectful relationships, partnerships, and collaboration with Aboriginal and Torres Strait Islander Peoples and communities are established and maintained throughout the entire research process, including gaining informed consent and negotiating a research agreement.

• Research is led and driven by Aboriginal and Torres Strait Islander Peoples, including having Aboriginal and Torres Strait Islander Peoples as members of the research team who hold substantial and significant roles throughout the research.

• Research originates from the aspirations, values, priorities, needs, and concerns of Aboriginal and Torres Strait Islander Peoples and communities, and the research journey and outcomes are of benefit to communities.

• Indigenous methodologies and protocols are used for consultation, data collection, data analysis, and knowledge translation, such as yarning (e.g., Bessarab & Ng’andu, 2010; Brewer et al., 2019; Kennedy et al., 2022; Lewis et al., 2017).

• Researchers demonstrate and develop culturally safe practices when conducting research alongside Aboriginal and Torres Strait Islander Peoples (Brewer et al., 2019; Coffin, 2007; Kennedy et al., 2022).

• Governance and sovereignty of knowledge and data are protected and maintained (Lowitja Institute, 2021).

These points are consistent with Rigney’s (1999) principles, whereby Indigenist research must be led by Aboriginal and Torres Strait Islander Peoples, demonstrate resistance as an emancipatory imperative, maintain political integrity, and privilege Aboriginal and Torres Strait Islander voices. The research methodologies and methods must follow Aboriginal and Torres Strait Islander worldviews and ways of seeing, knowing, being, doing, and belonging, and be deeply connected to the ongoing connections and relationship to Country, history, resistance, survival, and identities. A research agenda must contribute to the aspirations and self-determination of Aboriginal and Torres Strait Islander Peoples and communities.

Ethical review, approval, and compliance

Ethical review and oversight are required for Aboriginal and Torres Strait Islander research. HRECs review research applications to ensure that ethical requirements and standards are met (NHMRC, n.d.-b). Researchers may submit their application to a HREC with “specialist expertise in reviewing ethics proposals for research involving Aboriginal and Torres Strait Islander Peoples” (NHMRC, n.d.-a) or a general HREC— institutions/organisations may have different requirements for the type of HREC/s to be used. Some HRECs are registered with the NHMRC. Ultimately, “all institutions must ensure that their HREC has access to the expertise necessary to enable it to address the ethical issues arising from the research it reviews” (NHMRC, n.d.-a).

The Australian Research Council (ARC) and NHMRC require researchers to comply with the values and principles within the NHMRC guidelines (NHMRC, 2018a, NHMRC, 2018b, NHMRC, 2018c, 2018d) and the AIATSIS Code (AIATSIS, 2020a) in their grant guidelines and agreements (AIATSIS, 2020a, p. 5). Requirements for Aboriginal and Torres Strait Islander research are also reflected in the criteria for acceptance at the SPA National Conference, publication in SPA journals, and for SPA research grants.

Considerations for implementing evidence-based practice

The requirements for Aboriginal and Torres Strait Islander research also have implications for SLPs accessing external evidence arising from research studies. SLPs should consider whether there is external evidence relevant to the area of practice they are working in and if the research was led by/with Aboriginal and Torres Strait Islander Peoples. As with any external evidence, there is a need to critically appraise evidence for quality and trustworthiness before applying it in practice (Hoffmann et al., 2017; McGill, 2023; SPA, 2021). While most existing appraisal tools adopt a Western lens, the Aboriginal and Torres Strait Islander quality appraisal tool (QAT; Harfield et al., 2020), which comprises 14 questions to ask when appraising research articles, has been described as “the first tool to appraise research quality from the perspective of Aboriginal and Torres Strait Islander Peoples” (Biles, 2022, p. 295). The QAT (Harfield et al., 2020) and its companion document (Harfield et al., 2018) are open access (freely available) online and may be useful to complete or refer to when reading, appraising, and reflecting on evidence from Aboriginal and Torres Strait Islander research to determine whether it adheres to the values and ethical principles described earlier in this column (AIATSIS, 2020a; Biles, 2022; NHMRC, NHMRC, 2018b). The QAT can also “be used with other suitable critical appraisal tools that focus on rigour of the study design and the appropriateness of methods that draw on western research principles” (Harfield et al., 2020, p. 7).

If the research does adhere to the ethical values and requirements and has been led by and has significant involvement of Aboriginal and Torres Strait Islander researchers, it is likely to be relevant and may be applicable when working with Aboriginal and Torres Strait Islander Peoples. Although, it is important to integrate the evidence with the preferences, values, needs, and priorities of the individual or community you are working with (SPA, 2021). If the requirements have not been adhered to, the findings may have limited applicability or benefit to Aboriginal and Torres Strait Islander Peoples (Lewis et al., 2017).

If evidence has been gathered in practice contexts and with research participants who are dissimilar to your service users and context, the relevance and cultural appropriateness of that evidence may be limited and even harmful if applied in practice (Gillam & Gillam, 2006; Hoffmann et al., 2017; SPA, 2021). Standardised language assessments, for instance, have been found to inaccurately represent the language and overall communication skills of Aboriginal and Torres Strait Islander children (Gould, 2008a, 2008b). This presents challenges in delivering culturally responsive services and identifying language difference versus disorder, and may have implications for home language use (Gould, 2008a, 2008b). Instead, researchers have highlighted the importance of developing assessments and using approaches and methodologies that value, validate, and respect the strengths of Aboriginal communication styles (e.g., Gould, 2008a; Lewis et al., 2017; Pearce & Williams, 2013).

If there is no external evidence within the relevant practice area, or the available evidence is not of good quality, there may be a need for greater reliance on other sources of evidence, including the preferences, values, circumstances, and priorities of service users and their significant others. SLPs are urged to critically reflect on what and how they have come to “know” the worldviews and lens through which they live and practice and what their experiences, training, and clinical expertise tell them (internal evidence; e.g., McGill, 2022b). On what evidence are those beliefs and approaches based? How might those align or contrast with Aboriginal and Torres Strait Islander ways of knowing, being, and doing?

Summary and conclusions

This column has discussed historical and contemporary research with Aboriginal and Torres Strait Islander Peoples, relevant human rights and ethical requirements, and some considerations for EBP in speech-language pathology. SLPs have both a responsibility and opportunity to contribute to changing the narrative regarding Aboriginal and Torres Strait Islander Peoples moving forward and to stand with Aboriginal and Torres Strait Islander Peoples to enable greater realisation of their fundamental rights and freedoms. SLPs are urged to reflect on their worldviews, potential biases and assumptions, and the existing evidence base and engage in continuous learning to build their cultural capability.

Opportunities exist to explore and gather evidence in practice (practice-based evidence) in collaboration with Aboriginal and Torres Strait Islander researchers, practitioners, health and educational workers, and families. SLPs could also partner with Aboriginal and Torres Strait Islander communities and research teams to undertake impactful and ethical research focusing on community needs, priorities, and aspirations and continue to build evidence to inform culturally responsive practice (Laycock et al., 2011). This may contribute to building an external evidence base that privileges Aboriginal and Torres Strait Islander voices and worldviews and is more relevant to and beneficial for Aboriginal and Torres Strait Islander Peoples into the future, as determined by Aboriginal and Torres Strait Islander Peoples and communities themselves.

Acknowledgement

The authors wish to acknowledge the support and contributions of their Professional Standards team colleagues at Speech Pathology Australia.

Additional information

Notes on contributors

Nicole McGill

Dr. Nicole McGill is the Senior Advisor, Evidence-Based Practice and Research at Speech Pathology Australia.

Tara Lewis

Tara Lewis is the Senior Advisor, Aboriginal and Torres Strait Islander Strategy and Practice at Speech Pathology Australia.