Communication services for First Nations peoples after stroke and traumatic brain injury: Alignment of Sustainable Development Goals 3, 16 and 17

Abstract

Purpose

Colonisation and continuing discrimination have significantly and negatively impacted the physical, social and emotional wellbeing of First Nations peoples globally. In Australia, Aboriginal cultures thrive despite ongoing barriers to health care. This paper describes challenges and new initiatives for Australian Aboriginal people with acquired communication disability after brain injury and their alignment with the global aims forming the Sustainable Development Goals.

Result

Research undertaken by an Aboriginal and non-Aboriginal multidisciplinary team over a decade in Western Australia identified and responded to mismatches between community needs and services. Initiatives described include the Missing Voices, Healing Right Way, Brain Injury Yarning Circles and Wangi/Yarning Together projects. Recommendations implemented related to (a) greater incorporation of Aboriginal cultural protocols and values within services, (b) more culturally secure assessment and treatment tools, (c) support after hospital discharge, (d) Aboriginal health worker involvement in support. Implementation includes cultural training of hospital staff, trialling new assessment and treatment methods, and establishing community-based Aboriginal Brain Injury Coordinator positions and relevant peer support groups.

Conclusion

Culturally secure brain injury rehabilitation in Australia is in its infancy. Our initiatives challenge assumptions about worldviews and established Western biomedical models of healthcare through incorporating Indigenous methodologies and leadership, and community-driven service delivery. This commentary paper focuses on Sustainable Development Goals 3, 16 and 17.

Keywords:

• Sustainable Development Goals (SDGs)
• good health and well-being (SDG 3)
• peace, justice and strong institutions (SDG 16)
• partnerships for the goals (SDG 17)
• acquired communication disability
• First Nations
• rehabilitation
• brain injury

Background

This paper describes challenges facing Aboriginal people in Australia with acquired communication disability (ACD) after brain injury (stroke or traumatic brain injury) and how community recommendations and initiatives to address these align with the Sustainable Development Goals (SDG): good health and well-being (SDG 3), peace, justice and strong institutions (SDG 16), and partnerships for the goals (SDG 17) (United Nations, 2015). Our experience derives from collaborative research undertaken over a decade in Western Australia to support the recovery journey and quality of life of Aboriginal people with brain injury and their families across metropolitan, rural and remote locations.

Aboriginal and Torres Strait Islander peoples are the First Nations peoples of Australia, culturally diverse and constitute 3.2% of the total population (Australian Bureau of Statistics, 2021), with over 167 languages spoken (240 at the time of colonisation) (Department of Communications, Information Technology and the Arts, 2005). Respectfully, we hereafter refer to Aboriginal peoples, the preferred term by First Nations peoples in Western Australia where the research described in this paper was undertaken. Colonisation with ongoing discrimination has significantly affected the human rights of First Nations peoples across the world through loss of lands, autonomy, and social participation (Bastos et al., 2018). Alienation, discrimination and racism severely impact on health, social and emotional wellbeing and have generated significant inequities. Suppression of traditional languages accompanied this disenfranchisement. In Australia, despite the colonial legacy, Aboriginal people have resisted, enabling their cultures to thrive although barriers to health care remain. When health conditions impact negatively on communication, as occurs for people with aphasia following stroke, it exacerbates experiences of exclusion, disadvantage and social withdrawal (Hersh, 2018). Communication is a fundamental human right, enabling people to express their needs, wants, relationships, cultures, and identities (McLeod, 2018).

Relationships

We emphasise the centrality of relationships in research involving Aboriginal people and communities and recognition of Aboriginal ways of being, knowing and doing. Relationships rest on one’s cultural location – connections made on both cultural and social grounds. Relationships must be reciprocal, meeting people in their own reality, building trust for strong and sustainable relationships (McDermott, 2019). Creating space for social and clinical yarns, identifying and connecting with Aboriginal workers and ensuring culturally secure spaces for consultation involving extended family/community members and Elders are central.

Partnerships

Multi-stakeholder partnerships (SDG 17) contribute to achievement of a community’s goals and sustainability. However, colonial powers use domination not partnership to establish and maintain control. Australia’s history includes non-Aboriginal researchers undertaking research “on” rather than in collaboration “with” Aboriginal communities (Fredericks, 2008). Leadership in research and clinical health services continues to be defined by Western models, rather than models developed by Aboriginal people and communities. However, ethical practice for health care in cross-cultural contexts includes true partnership between researchers/clinicians and the communities they work with (Australian Institute of Aboriginal and Torres Strait Islander Studies, 2020). Such recommendations have specifically been made within the practice of speech-language pathology (Brewer et al., 2019; McDermott, 2019). Exemplar partnerships using Indigenous research methodologies (Nakata, 2007) are now emerging around Australia in brain injury research (Armstrong, Coffin, Hersh, Katzenellenbogen, Thompson, Flicker, et al., 2021; Bohanna et al., 2019).

Our team includes Aboriginal and non-Aboriginal academics, clinicians, and service providers with partnerships across Aboriginal Community Controlled Health Organisations, community nursing, hospitals in metropolitan and regional Western Australia, and policy makers. Our projects involved capacity building and cultural training for > 250 hospital staff, brain injury education with >150 community-based Aboriginal health workers and employment/training of 94 Aboriginal and non-Aboriginal health staff as research assessors, interviewers, research site organisers, therapy co-workers and brain injury coordinators.

Privileging the voices of Aboriginal people with brain injury/communication disability: Building just and strong services for good health and wellbeing

The Aboriginal person with brain injury is surrounded by complex influences and contexts including societal and institutional attitudes, mandates and philosophies, multiple service providers, and their environment (Figure 1). Our work privileged the voices of these Aboriginal patients, explored their needs, identified mismatches between community wishes and services offered, and heard recommendations for change. It created and implemented tools and initiatives to enact these recommendations to enhance access to culturally secure rehabilitation services (including speech-language pathology), promoting holistic approaches to good health and wellbeing (SDG 3, SDG 16).

Figure 1. Centrality of relationships in optimising health and well-being of Aboriginal persons with communication disorders (SDG 3), supported by strong institutions (SG16), and partnerships across sectors (SG17).

Aboriginal people with ACD and their families were interviewed about their experiences of brain injury and interactions with acute care and rehabilitation services through the Missing Voices project (Armstrong, Coffin, Hersh, Katzenellenbogen, Thompson, Flicker, et al., 2021). Their stories reflected well-documented institutional racism in health services (Durey et al., 2012) and inadequate consideration for their individual and environmental contexts. Participants’ descriptions of significant post-event changes, while “getting on with their lives”, informed our subsequent trial of new models of service delivery, which prioritised having Aboriginal health professionals in service delivery to enhance support and trust.

Acting on recommendations: partnership and peaceful, strong, and just institutions

Research with Aboriginal communities in Australia has not adequately acknowledged or “given back” to communities who contributed their knowledges and experiences. Below we provide examples from our continuing research program that has directly addressed such historical inadequacies.

The Healing Right Way project (a clinical trial across eight hospital sites) (Armstrong, Coffin, Hersh, Katzenellenbogen, Thompson, Flicker, et al., 2021) aimed to implement recommendations from Missing Voices. The project initiated the new role of Aboriginal Brain Injury Coordinator (ABIC) to assist Aboriginal adults with brain injury and their families for six months post-injury (Armstrong et al., 2022). ABICs liaised with health services, advocated, supported and educated around brain injury and available services. Additionally, cultural security workshops co-led by a researcher and Aboriginal facilitator and focussed on improving interactions within rehabilitation services, were held in intervention hospitals for clinical (mostly non-Aboriginal) staff.

Three further projects built on the recommendations by providing Aboriginal health staff to work with patients in a familiar and culturally safe environment. The Wangi (talking) and Yarning Together projects (Ciccone, Armstrong, Hersh et al., 2019; Ciccone, Armstrong, Adams et al., 2019) involved a speech-language pathologist and Aboriginal co-worker working with an Aboriginal person with an ACD in a yarning framework within their home environment. Yarning is a dialogic process which is “reciprocal and mutual” (Bessarab & Ng’andu, 2010, p. 38), more than having a conversation. Rooted in deep cultural significance which incorporates stories related to history, culture, language and identity between Aboriginal people (Lewis et al., 2017), Lin et al. (2016) promote a clinical yarning framework in which a non-Aboriginal clinician engages an Aboriginal client in a yarning style different from the typical question/answer interaction style of many clinical contexts. Within both projects, therapy involved collaborative client-centred two-way dialogue around issues and events important to the client, rather than being clinician driven. This was extended to telehealth support in Yarning Together, demonstrated as feasible and acceptable to participants.

Brain Injury Yarning Circles involves support groups for Aboriginal people with brain injury held in metropolitan and regional areas, coordinated by local, community-connected Aboriginal facilitators. Yarning circles are conducted in community centres, or on-Country in outdoor settings that have meaning or represent a safe space for participants. The groups are tailored to attendees’ needs and wants, including art, dance, music, men’s and women’s days, excursions to culturally significant destinations and connections to local Elders. The group provides family/support workers with information about brain injury, working together to better understand behavioural, psychological, communication and personality changes post-injury. Cultural knowledge and practices include familiar location, facilitators and sharing of food, enabling eople with brain injury to comfortably “be” within their culture.

The need for cultural security in institutions: Incorporating an Aboriginal-informed model of health and well-being in creating just and strong institutions

The notion of just and strong institutions (SDG 16) relies on strong, respectful relationships between societal institutions and all of society. Aboriginal Australians have repeatedly reported mistrust of institutions and barriers in accessing health services (Gilroy et al., 2021). Geographical isolation plus failure of communication and lack of sensitivity and responsivity to cultural needs by (largely non-Aboriginal) service providers was reiterated in interviews (Armstrong et al., 2015; Armstrong, Coffin, Hersh, Katzenellenbogen, Thompson, Ciccone, et al., 2021). Education for non-Aboriginal staff in hospitals and other institutions, including discussions of existing systemic, conscious and unconscious interpersonal racism, and effects of colonisation is increasingly acknowledged as essential in addressing systemic racism in service delivery (Durey et al., 2012). Strategies must be multi-faceted and directed to institutions and policy at all levels. A culturally secure environment (Coffin, 2007) provides an Aboriginal community with access to Aboriginal health professionals (Lai et al., 2018). Aboriginal people must feel comfortable to “be” within their culture, not having to adapt to the coloniser/settler culture. In Missing Voices, Aboriginal people with ACD spoke repeatedly of the importance of contact with an Aboriginal person during their acute hospitalisation; hence, the ABICs were embedded in Healing Right Way.

Recognising how a holistic model of Aboriginal health and wellbeing can influence healthcare

A health system with professionals that understand a person’s cultural context and offers truly holistic care is crucial. Missing Voices identified being on Country and in touch with one’s own language and culture as a significant factor in people’s lives and recovery. Healing and health depend on these aspects, as much as attending therapies and medical appointments. Health professionals appreciating the broader context of the person (Figure 1) is essential for rehabilitation treatments to be relevant and accessible to Aboriginal people and to optimise healing.

Summary and conclusion

As health professionals and researchers, we are motivated and trained to contribute to good health and well-being (SDG 3). However, for First Nations Peoples our efforts can miss the mark through adhering only to technical disciplinary training and Western models of service delivery. A broader approach involving self-reflection and critical analysis of how current ways of working may not benefit colonised peoples is required. Systems and institutions often perpetuate inequities and systemic racism, so changes must be made to both systems and ways of working to facilitate equity and optimise health and well-being (SDG 3, SDG 16). Partnerships (SDG 17) are needed at many levels, based on solid, trusting, reciprocal relationships which centralise the needs of patients and their families.

In 2017, over 250 First Nations Australian delegates signed the historic “Uluru Statement from the Heart” (First Nations National Constitutional Convention, 2017), encompassing aspirations for peace, justice and wellbeing. The following extract is relevant to our responsibilities as health professionals and researchers to ensure “fair and truthful relationships” in clinical and research endeavours into the future with First Nations Peoples globally:

Makarrata is the culmination of our agenda: the coming together after a struggle. It captures our aspirations for a fair and truthful relationship with the people of Australia and a better future for our children based on justice and self-determination.

Acknowledgments

We acknowledge all Aboriginal participants and their recommendations to improve the recovery journey after brain injury for others, through improvements in accessibility and cultural security of services.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.