Decolonizing Speech-Language Pathology Practice in Acquired Neurogenic Disorders Indigenous peoples throughout the world, despite being known to suffer from increased risk of stroke and traumatic brain injury (TBI), are marginalised in terms of access to rehabilitation services and have poorer health outcomes than non-indigenous peoples. Speech-language pathology services for indigenous people with aphasia have rarely been discussed in ... Article
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Article  |   November 13, 2017
Decolonizing Speech-Language Pathology Practice in Acquired Neurogenic Disorders
Author Affiliations & Notes
  • Claire Penn
    Department of Speech Pathology and Audiology, University of the Witwatersrand, Johannesburg, South Africa
  • Elizabeth Armstrong
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Karen Brewer
    Te Kupenga Hauora Maori, University of Auckland, Auckland, New Zealand
  • Barbara Purves
    School of Audiology and Speech Sciences, University of British Columbia, Vancouver, Canada
  • Meaghan McAllister
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Deborah Hersh
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Erin Godecke
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Natalie Ciccone
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Abigail Lewis
    School of Medical and Health Sciences, Edith Cowan University, Perth, Australia
  • Disclosures
    Disclosures ×
  • Financial: The authors have no relevant financial interests to disclose.
    Financial: The authors have no relevant financial interests to disclose.×
  • Nonfinancial: The authors have no relevant nonfinancial interests to disclose.
    Nonfinancial: The authors have no relevant nonfinancial interests to disclose.×
Article Information
Speech, Voice & Prosodic Disorders / Attention, Memory & Executive Functions / Traumatic Brain Injury / Part 3
Article   |   November 13, 2017
Decolonizing Speech-Language Pathology Practice in Acquired Neurogenic Disorders
Perspectives of the ASHA Special Interest Groups, November 2017, Vol. 2, 91-99. doi:10.1044/persp2.SIG2.91
History: Received February 26, 2017 , Revised July 29, 2017 , Accepted August 3, 2017
Perspectives of the ASHA Special Interest Groups, November 2017, Vol. 2, 91-99. doi:10.1044/persp2.SIG2.91
History: Received February 26, 2017; Revised July 29, 2017; Accepted August 3, 2017

Indigenous peoples throughout the world, despite being known to suffer from increased risk of stroke and traumatic brain injury (TBI), are marginalised in terms of access to rehabilitation services and have poorer health outcomes than non-indigenous peoples. Speech-language pathology services for indigenous people with aphasia have rarely been discussed in either clinical or research fora in this field, with few guidelines available for clinicians when working with indigenous clients, families, and communities. Exploiting the broad input gathered through the collective problem-solving of a focus group, the paper integrates the input of a group of practitioners and researchers at an international roundtable held in 2016 to generate a “declaration” of issues that need to be addressed regarding aphasia services for indigenous clients with aphasia. The paper aims to promote a transformative approach to service delivery that is driven by decolonizing attitudes and practices, and acknowledges historical, sociopolitical, linguistic, and family contexts as a framework for understanding indigenous clients with aphasia.

In March of 2016, a group of indigenous and non-indigenous researchers from four countries (Australia, South Africa, New Zealand, and Canada) held a “roundtable” to discuss issues related to aphasia in indigenous communities. What brought us together was the recognition that, in each of our countries, a great need exists for a better understanding of aphasia in context. Our countries are each characterised by a history of colonization. It should be recognized that related historical factors have contributed to tiered health systems, a neglect of linguistic and cultural origin, and health disparities (Griffiths, Cole, Lee, & Madden, 2016). In response, it is evident that our current training and clinical practice require decolonization and transformation.
Drawing on the established benefits of an expert focus group approach in adult neurology to solving problems in health care (e.g., Raymer et al., 2008):
The aims of the roundtable were as follows:
  1. To merge and discuss global patterns of health and wellness and to consider models of application to those with communication disorders in marginalized and indigenous communities.

  2. To initiate and disseminate research on relevant common issues and explore suitable methodologies for research as well as opportunities for collaboration.

  3. To promote the issue of communication disorders in indigenous populations as an area requiring research in order to improve service delivery options and improve health outcomes.

  4. To establish a network of indigenous and non-indigenous researchers and clinicians who will work together to improve health outcomes of indigenous peoples with brain impairment and their families.

This paper summarizes the findings of the roundtable in terms of a “declaration” of issues that need to be addressed in this area, and potential principles of practice. The paper is focused particularly on adult populations who have communication disorders following acquired brain injury such as stroke or TBI. The health care needs and the limitations in the health care services for indigenous people, including those with neurogenic communication disorders, have been discussed only on a limited basis in the literature (Armstrong, Hersh, Hayward, & Fraser, 2015; Katzenellenbogen et al., 2016; Penn & Watermeyer, 2012). Similarly, following a review of relevant policies (e.g., scope of practice and accreditation documents) within our own field of speech-language pathology, professional policies rarely refer specifically to indigenous clients or related culturally secure practices, although a small number in our field and in related fields do make explicit reference (e.g., Australian Association of Social Work Code of Ethics, 2010; New Zealand Speech-Language Therapists' Association, 2016). While such policies are a step in the right direction, their application is limited by the lack of research in this field (Brewer & Andrews, 2016). We argue that those with communication disorders are already disempowered within their societies, restricted in their social participation, and at risk of decreased quality of life. When such disorders overlie populations who are already disadvantaged through a colonial history of displacement, subjugation, and loss of culture, the level of disempowerment is compounded. Speech-language pathologists (SLPs) have an ethical obligation to acknowledge this context, to actively learn about and prioritize the cultural contexts of these clients, and to reassign their needs from a marginal to a central professional concern.
Background
Indigenous people throughout the world are known to suffer from increased risk of stroke and TBI, and yet are marginalized in terms of access to rehabilitation (Armstrong, Hersh, Hayward, & Fraser, 2015; Keightley et al., 2009; McLellan, 2013; Penn & Watermeyer, 2012) and have poorer health outcomes than non-indigenous peoples (Barnett et al., 2012; de Leeuw, Lindsay, & Greenwood, 2015). In the Australian context, stroke and TBI occur up to three times more often in Aboriginal and Torres Strait Islander populations compared to non-Aboriginal populations (Jamieson, Harrison, & Berry, 2008; Katzenellenbogen et al., 2010). Similar figures are available in regard to other indigenous people throughout the world (Blackmer & Marshall, 1999; Connor & Bryer, 2006; Ministry of Health, 2010; Rutland-Brown, Wallace, Faul, & Langlois, 2005). Given this situation, there is surprisingly little research published in this area, and few clinical initiatives addressing the issues involved.
When we use the term “indigenous,” we recognize the hugely diverse group of peoples subsumed under this label. Relevant here is the World Health Organization's (WHO) recognition that indigenous people “remain on the margins of society; they are poorer, less educated, die at a younger age, and are generally in worse health than the rest of the population” (WHO, 2007). While this description clearly does not refer to all indigenous people, it does remind us of the need to acknowledge the long-term and often intergenerational effects of colonization, and to explore the effects of brain injury in marginalized communities. It is also important to acknowledge that colonization is “…an ongoing process that continues to impact negatively on Indigenous health outcomes” (Axelsson, Kukutai, & Kippen, 2016, p. 3). Colonization is not merely an “historical event.” The term “decolonization” hence refers to the process of challenging and reconfiguring paradigms, rules, and systems that continue to create asymmetries. In the case of health, such systems include diagnostic frameworks and services that reinforce inequities and misalignment between indigenous and non-indigenous views of health and wellness as well as access to appropriate services (see Griffiths, Coleman, Lee, & Madden, 2016  for further discussion).
While contexts widely vary across countries, there are common barriers to clinical changes and to research, and there are potentially common solutions to addressing at least some of the challenges faced in the field of indigenous health. Common issues include: differences in worldview between mainstream Western model health services and indigenous concepts of health and wellness (McLellan, McCann, Worrall, & Harwood, 2014); limited availability of and access to interpreting services (Brewer, McCann, Worrall, & Harwood, 2015; Penn & Armstrong, 2016); economic marginalization and a high rate of comorbidities in indigenous people with brain impairment; and considerably complicating rehabilitation services (Penn & Armstrong, 2016; Robson, Cormack, & Cram, 2007). In addition, other challenges include Western rehabilitation not catering for the diverse realities of indigenous health and wellness, which incorporate concepts of causality of events such as stroke and brain injury (Legg & Penn, 2013), and ongoing effects of colonization that marginalize indigenous peoples on many fronts, including health care professionals' uncertainty about how best to address these effects in order to provide culturally secure care (Brewer et al., 2015; Hersh, Armstrong, Panak, & Coombes, 2015).
Non-indigenous SLPs who work in English-speaking countries impacted by a colonial past—for example, Australia, New Zealand, Canada, the USA, and South Africa—need to be aware of the health, social, economic, and political implications of that colonial history on indigenous populations, and be committed to decolonization in the country where they work. As experts in language and communication, which are intrinsically woven into culture, SLPs have a particular responsibility to work closely with indigenous populations in their communities, recognize when the SLP has something useful to offer, and understand how sociopolitical context contributes to health inequities. SLPs must also recognize when their practice is, often inadvertently, perpetuating the effects of colonization.
The Roundtable Declaration
The roundtable involved presentations of relevant historical and political contexts in each country, influences of these on the development of health and other services for indigenous peoples, as well as relevant current research in each country. After much discussion, the group subsequently developed a preliminary “declaration,” outlining primary issues and perspectives that need addressing in the field of aphasiology in particular, and general principles to be taken into account when establishing or developing services with indigenous communities. We are starting the process in this regard, rather than seeing the declaration of principles as an endpoint. We take this opportunity of sharing this with the readership. We believe that the group-based principles from this researcher-practitioner collaboration may be valuable to similar groups in our countries especially to generate strategies to address the clinical needs of under-researched, underserved populations.
The aims of the “declaration” are:
  1. To improve outcomes for indigenous peoples with communication disorders following brain injury consistent with the United Nations Declaration on the Rights of Indigenous Peoples (United Nations, 2007) and the WHO program of work in the area of health equity and human rights (WHO, 2015).

  2. To advocate for communication as a human right.

  3. To enhance systems of communication among the different health care services and providers working with indigenous peoples.

  4. To raise awareness within the speech-language pathology discipline and the broader community of contextual issues, including sociopolitical and historical factors surrounding brain impairment in indigenous people that may have an impact on the delivery of post-stroke services.

  5. To connect individuals working in the area (clinicians and researchers) internationally (Australia, Canada, New Zealand, South Africa, and the United States) for support and collaboration purposes.

What the Declaration Is and What It Isn't
In making this declaration, we are not speaking on behalf of indigenous peoples. We are not claiming to represent indigenous peoples. However, as indigenous and non-indigenous researchers, clinicians, and educators with collective experience working with indigenous communities in our respective countries, we are hoping to raise important principles and perspectives, and to actively create a collaborative space for conversation surrounding the possible impact of historical factors on service delivery with marginalized groups.
The declaration does not represent a toolkit or recipe for prescribing practices. Instead, it is a vehicle for acknowledging sociopolitical issues and cultural diversity in clinical populations, and promoting cultural security in clinical practice. It seeks to promote discussion, highlight current barriers and facilitators to accessible and appropriate services, and encourage services that are appropriate to an individual client's context. In addition, we hope to influence what have been described as the “hidden” barriers which exist in educational and clinical contexts. In addition, we hope to influence, by advocating for a process of self-reflection, the impact of barriers that have been described as “hidden” in educational and clinical contexts. Such barriers are those that are not currently addressed by policies, systems, and procedures but that, for indigenous communities, hamper access to, and acceptability of, our Western-based models of assessment and intervention. These may include assumptions, stereotypes, and routines which are part of health professionals' everyday practice and require re-examination.
The declaration is not designed to criticize current practice, but to recognize challenges and to suggest possible directions of change through self-reflection on the culture of our discipline. In so doing, we can position ourselves for the future of our increasingly global world.
Finally, while we recognize the huge mobility that has come about globally as a consequence of refugee and migration movements, our declaration acknowledges that the concerns of indigenous peoples are not identical to refugee and migrant issues. Such issues in in each country require additional and substantial attention. Additionally because language issues, such as bilingualism, have often been the focus of discussion regarding diverse populations, our declaration goes beyond language and recognizes that language problems are just one cause of social exclusion. Our discipline has a very real role to play in addressing the unique and separate complexity in the aphasia management in individuals both from indigenous populations and from other minority groups.
Core Values
In order to support and achieve the aims of the declaration, it is essential to articulate values/principles that underpin these aims. We recognize that there is a growing literature within both medical and educational groups on the issue of cultural security and indigenous understandings of health (Coffin, 2007; National Aboriginal Health Organization, 2008). However, the needs of the adult with acquired communication disorders are quite unique. Not only does a marginalized member of society have little voice in terms of political agency, the impact of an acquired communication disorder can exacerbate and compound this situation, and potentially affect both individual and community identity.
A critical feature of this declaration is to highlight the important role of context– historical, sociopolitical, and linguistic context as a framework for understanding our clients. This involves a need to expand our methods to incorporate peoples' world views, to understand the inextricable relationship between language, culture, and our services. The core values as indicated below serve to highlight key aspects which emerge from this stance/position, and potentially inform future policy and practice. We want to recognize, acknowledge, promote, and apply principles of cultural security.
These values are framed by ethical principles of autonomy and justice. Given our colonial histories, a transformative approach that is driven by decolonizing attitudes and practices is the only ethical option regardless of relative proportions of indigenous peoples in individual countries. In order to become clinicians who can offer culturally secure services to our clients, we believe that our own discipline and professional groups need to develop a culture of self-reflection and adherence to the following principles:
  1. Trust and relationship building;

  2. Two-way dialogue between service providers and communities;

  3. Reflective practice by healthcare practitioners in regard to their assumptions and practices;

  4. Acknowledgment and recognition of (ongoing) inequity;

  5. Incorporation of cultural understandings relating to family, community, and local cultural protocols into routine clinical practice;

  6. Recognition that indigenous peoples are best placed to work with their own communities, hence the imperative to work closely with Indigenous colleagues and grow the indigenous speech-language pathology workforce;

  7. Identification of broader systems of communication among the different healthcare services and providers of interaction in health, as well as individuals as targets for attention;

  8. Advocacy for indigenous peoples with communication disorders across clinical, community, and policy contexts; and

  9. Recognition that the process towards understanding and applying indigenous principles in practice is ongoing, fluid, dynamic, and reciprocal.

Figure 1 contains case studies from each of the countries in which the participants in the round table work and which illustrate typical challenges.
Figure 1.

Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.

 Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.  Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.
Figure 1.

Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.

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Conclusions
This paper opens a conversation rather than provides solutions to the challenges proposed, and serves to provoke discussion. Service delivery change in this area is potentially more about attitudes and awareness influencing culturally secure practice than additional physical treatment resources. This paper hence outlines issues and principles that clinicians and researchers can consider when attempting to explore and develop culturally secure services that are accessible to indigenous peoples through being culturally appropriate and aligned with peoples' needs and aspirations. While the nine principles above are not comprehensive, they highlight the importance of dialogue between health providers and potential indigenous consumers, and the need for explicit inclusion of the contexts of indigenous consumers (indigenous people with aphasia and their families) in discussions, research and planning of speech pathology services.
Limitations
The Roundtable from which this declaration emanated was limited to representatives from Australia, South Africa, Canada, and New Zealand. Representation from other countries would have broadened the discussion, however those attending represented the primary sources of research in the area of aphasia in indigenous populations at this point in time. The Roundtable included indigenous and non-indigenous researchers all of whom have worked directly with indigenous individuals with aphasia and their communities, and related fields. However, clearly greater indigenous input is desirable in future meetings, with the establishment of broader indigenous networks in our field an area for growth.
Future Directions
As noted throughout, this paper is not intended to provide a toolkit of practices to be implemented. Rather, the declaration is seen as stimulating and informing discussion on this important global issue within our field and we invite input and commentary from the readers. As a work in progress, we also hope that such ideas in the future will become embedded into curriculum and inform policy changes in professional and clinical contexts.
Acknowledgments
We wish to acknowledge Whaawei Taki from the University of Auckland, for her invaluable input to the roundtable discussions associated with this work.
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Figure 1.

Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.

 Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.  Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.
Figure 1.

Examples of Contexts of Indigenous Individuals With Acquired Communication Disorders in Australia, South Africa, New Zealand, and Canada.

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We've Changed Our Publication Model...
The 19 individual SIG Perspectives publications have been relaunched as the new, all-in-one Perspectives of the ASHA Special Interest Groups.