Codesigning culturally safe oral health care with First Nations Kidney Warriors experiencing kidney disease in South Australia

Abstract

Background

This paper describes how First Nations Kidney Warriors (Aboriginal and Torres Strait Islander people living with kidney disease), dental hygienists, kidney health care professionals, an Aboriginal hostel accommodation manager and researchers co-designed an approach to improve oral health in South Australia. Kidney Warriors have strong connection to Country, Community and family that underpins health, wellbeing and approaches to research. However, significant colonisation, racism and marginalisation have impacted Kidney Warriors’ social, cultural and financial determinants of health, leading to increased chronic conditions including kidney disease. Access to culturally safe, affordable and responsive oral health care is vital but challenging for First Nations Peoples undergoing dialysis and kidney transplantation; Australian oral health care is generally provided privately, in metropolitan centres, by professionals who may hold unconscious bias about First Nations Peoples and incorrect assumptions regarding equal access to care.

Methods

The AKction – Aboriginal Kidney Care Together Improving Outcomes Now kidney care oral health working group codesigned strategies to address disparities and gaps in care, and co-create more accessible, responsive, culturally safe and sustainable models of care. A decolonising and collaborative participatory action research was informed by Dadirri Deep Listening and Ganma Knowledge Sharing with repeated cycles of Look and Listen, Think and Discuss, Take Action Together. A small pilot evaluation survey of clinical placement in an Aboriginal setting was undertaken.

Results

Four phases of collaboration were undertaken. Community and health professional consultations identified key gaps and priorities. Clinical yarning and cultural safety training and an interprofessional skills day was co-facilitated. Dental hygienist student clinical placement at Kanggawodli Aboriginal Hostel was initiated and evaluated. First Nations Kidney Warriors were positioned as educators and experts of their own lives and health care needs. A new framework for kidney health—oral health cultural safety and clinical education was developed.

Conclusion

This codesigned approach involving inter-professional collaboration and joint decision making with community members has significantly informed improvements in oral health care information, services and referral with and for First Nations Peoples with kidney disease. This project provides a working example of how to decolonise health service and education programs from the ground up.

Trial registration

NHMRC PAR 2004389.

Terminology

Throughout this paper ‘First Nations Peoples’ is respectfully used to refer to Aboriginal and Torres Strait Islander Peoples. The term Aboriginal is used in the project title- Aboriginal Kidney Care Together – Improving Outcomes Now (AKction), as preferred by the community participants at the project commencement. Country is spelt with a capital C to denote the importance of and spiritual connection to ancestors and land.

Background

The First Nations Peoples of Australia, Aboriginal and Torres Strait Islander Peoples, have the oldest continuous living culture in the world with deep connection to Country (the land, seas, waterways, skies, animals, plants and elements), communities (Aboriginal and Torres Strait Islander communities) and extended family members [1]. Relational networks underpin First Nations ways of knowing, being and doing and interactions in health, wellbeing and research [2]. First Nations Peoples people are 3.8% of the total Australian population; over a third live in major metropolitan cities, 15.4% live in remote areas and 9.4% live in very remote areas. The remainder of First Nations Australians live in inner and outer regional locations [3]. Over the last 225 years of colonisation, inequitable access to social, cultural and financial determinants of health, past and ongoing colonisation impacts, deeply entrenched racism and marginalisation and intergenerational trauma have had a significant and sustained effect on First Nations Peoples [4, 5]. This has led to significant health and wellbeing impacts, and chronic diseases such as kidney disease [4].

Kidney failure disproportionately impacts First Nations Peoples with higher rates of kidney disease occurring at younger ages. Within Australia, First Nations Peoples experience kidney disease at 10 times the rate of non-First Nations peers, with rates up to 30% higher in remote areas, associated with reduced access to preventative, specialist, home based and ongoing heath care [6, 7]. Kidney failure treatments such as dialysis, kidney transplantation and specialist care are predominantly provided in urban and regional centres areas, requiring many First Nations Peoples living in rural and remote areas to move away from family, Community and Country to receive lifesaving treatment [7]. The vast distances between home and health care often prevent kidney patients from rural and remote locations returning home on non- dialysis days. Dialysis is usually provided three days a week for approximately 5 h each session [8]. In South Australia, the majority of First Nations Peoples self-identify as Aboriginal, are 2.4% of the total population and encounter both similar and unique challenges in accessing health care as other South Australians, depending on where they live, the responsiveness of health care services and health professionals, and past and ongoing health care interactions [3, 9].

One of the treatment options that enables all people to live more independent lives, and for those from rural and remote areas to return home to their families, is kidney transplantation. However, although First Nations Peoples experience kidney disease at higher levels, they have lower levels of access to and receipt of kidney transplantation [7]. Responsive strategies are currently being developed to address this inequity, with recognition that meaningfully involving First Nations Peoples in decision making and codesign is vital for ensuring fit for purpose services and achieving health equity [10]. One of the biggest challenges to accessing kidney transplantation is completing the required workup, which includes regular dialysis, health screening, good oral health care, a full dental assessment and a certified letter from the dental specialist [11, 12]. Oral health is vital for successful kidney transplantation and post transplantation health because dental disease can lead to infections, inflammatory responses within the body, and fatal septic conditions for patients who are immunocompromised [12]. Achieving oral health is commonly the only obstacle preventing First Nations Peoples receiving a kidney [12].

Australia has a world class federally funded public health system, but oral health is provided separately, with limited publicly funded clinics. Dental care is predominantly provided through private services, usually based in urban centres. There are very limited publicly funded outreach clinics provided for people who cannot afford to pay for dental care [13]. Dentist and dental hygienist training occurs within Australian Universities and the Vocational Education& Training sector through Technical and Further Education (TAFE), with clinical placement in a range of in-house and community primary care settings. Dental hygienists have long had a preventive and therapeutic focus in Australia [13], but their involvement in meeting the prevention, education, screening and referral needs for First Nations Peoples, and those with lived experience of kidney disease specifically, has been minimal [13].

Many First Nations Peoples encounter significant oral health challenges associated with limited access to information and services while also experiencing diabetes, higher rates of infection, compromised healing and the impact of dry mouth. Years of dialysis, medications, and reduced fluid intake create specific oral health impacts, including erosion, caries, periodontal diseases and oral lesions for people with kidney failure [14]. This increases the need for effective two-way health literacy and knowledge translation between oral health care providers and community members [14], and access to flexible, culturally safe oral health care and information [15, 16]. However, transfer of knowledge and messages between First Nations community members, and those working in health and support roles is often complicated by lack of effective communication [17]. Health literacy gaps are often ‘blamed’ on the recipients of care, rather than focusing on the skills and health literacy of health care professionals, and access to language appropriate and responsive resources [16]. Within oral health care services, there can be poor understanding of the importance of outreach, what outreach means in practice, how to enact it, and what collaborations are needed for successful implementation. This is even more complex when meeting the needs of First Nations Peoples from rural and remote areas [18].

There are also differing understandings of cultural awareness, cultural competency and cultural safety and confusion around these concepts and underlying intent [15, 19, 20]. Cultural awareness training is common in Australian health care settings and can be considered as a beginning step toward understanding that there is a difference between cultures and often focuses on learning about the culture of other people [19]. Cultural competency focuses on interacting with people who are culturally different to oneself. This requires a level of personal reflection, and changing one’s practice in response to what the culture of another person is perceived to be [15]. Cultural safety training and concepts go a step further, requiring practitioners and students to undertake a process of self-reflection to explore their own beliefs, values and attitudes and how these may impact on the care they provide. There are five main principles of cultural safety; reflecting on one’s own practice, seeking to minimise power differentials, engaging in discourse with a patient/client, undertaking a process of decolonisation and ensuring that one does not diminish, demean or disempower others through one’s own actions [20]. Importantly, the level of cultural safety achieved is defined by those receiving care [19, 20]. Decolonisation involves recognising the past and ongoing impact of colonisation [15], listening to and centring the voices and priorities of First Nations Peoples, addressing unconscious bias and actively seeking to reverse and remedy the impact of colonisation through direct action [20, 21].

In Adelaide, South Australia, the AKction: Aboriginal Kidney Care Together – Improving Outcomes Now project, a 5-year National Health and Medical Research Centre funded participatory action research project, has been initiated to improve the experience and outcomes of kidney care for and with First Nations patients, families and community members and kidney health services [22]. The AKction project is led by a Barkindji-Malyangapa and German-British-Welsh public health researcher, a Kaurna-Narungga-Ngarrindjeri, Ngarrindjeri-Yorta Yorta, and Adnyamathanha woman with lived experience of kidney disease (Kidney Warriors) and a British nephrologist as chief investigators. Indigenous Governance is provided by a reference team of ten First Nations Peoples living with kidney disease (Kidney Warriors) and their families from across South Australia. Associate investigators are two First Nations and seven non-First Nations researchers and clinicians. There are four nested sub studies: Indigenous Governance; Peer support; Kidney Journey Mapping and Cultural Safety [22].

Oral health was raised as a significant issue by First Nations community members in initial community consultations, reference team meetings, key stakeholder meetings and kidney journey mapping. In response, a small kidney care-oral health working group was established within the AKction project to further investigate access issues, and devise innovative, culturally safe strategies to address them.

The work of this team is based at Kanggawodli Aboriginal hostel where many Aboriginal people and Kidney Warriors stay while accessing tertiary health care including culturally supported kidney health care and dialysis. Kanggawodli is a Kaurna word meaning Caring House (pronounced ‘Gan-ga-wod-li’). Two, and then three dialysis machines were placed within this hostel as a pilot model of care from August 2020 to August 2022 in response to community concerns raised about the challenges of travelling to and from dialysis, and the number of dialysis sessions missed leading to Kidney Warriors becoming acutely unwell and requiring emergency admissions [23]. The AKction project and Kidney Warriors were significantly involved in co-designing this change with kidney health services toward more responsive dialysis care. An independent, formal evaluation of this community-based model of dialysis found that that it was responsive to unique needs of patients, perceived by them to be safer and more culturally supportive, family centred and increased their social and emotional wellbeing [23].

The kidney care-oral health working group comprises AKction First Nations and non-First Nations researchers and First Nations reference team members (described earlier), a Malak Malak manager of the Kanggawodli Aboriginal Hostel, a non- First Nations Scottish-Irish-Danish dental hygienist with well-established networks, an Italian-German senior lecturer and dental hygienist from TAFE SA vocational college, an Gooniyandi Aboriginal Health Practitioner and a Irish/Welsh Nurse Coordinator from kidney health care services. This AKction collaborative team are also the authors of this paper. This paper describes how the kidney care-oral health working group co-designed and co-facilitated an innovative response to improve oral health education and promotion, access and referral pathways for and with Aboriginal people with kidney disease. The working group aimed to codesign strategies to address disparities and gaps in care, and co-create more accessible, responsive, culturally safe and sustainable models of care together.

The working group brought together diverse skills, experiences, expertise, cultural backgrounds and experiences. Together the group co-designed shared goals and strategies and allocated tasks. All involved were willing to work together, critically reflect on their own thoughts and actions, and work through the inevitable uncomfortable moments, misunderstanding, disharmony and miscommunication when it occurred, either within the group, or with key partners. The team’s approach was underpinned by concepts of cultural safety [15, 20], decolonising methodologies [24], mutual respect, and a strong desire to improve care. When one door closed, the team kept searching until another opened. The working group came together relatively quickly and effectively, building on relationships that span years and decades. Meetings were held face to face in workplaces and at Kanggawodli, online, via emails and telephone. Each member engaged in the collaboration as part of their existing workload, expanding their priorities and roles to enable the shared goal to succeed. Another important aspect was weaving together activities and connections between people and services over time, pooling resources, time, skills and resources. Kidney Warriors and dental hygienists played a key role in this weaving, as is shown visually in the Fig. 2 story map.

Methodology and methods

The AKction project uses a decolonising methodology and collaborative community-based participatory action research (PAR) [22], bringing together First Nations and Western research methods and concepts into a co-designed intercultural approach [22]. Decolonising approaches recognise that research has historically and institutionally been contrived in a Western construct [25], and that Indigenous methodologies and methods can be used to shift the research paradigm and privilege Indigenous ways of knowing, being and doing ([24], p 2). This recognises the importance of relationality to each other, and deep connection to Country, community and culture.

A flexible, iterative and responsive community-based PAR approach was developed in an earlier collaboration project with First Nations women to improve access to care [26]. In that study, the First Nations women and a non- First Nations nurse researcher worked together to co-design a participatory action research approach that ensured the women’s voices were heard, they were actively involved in decision making and in determining responsive actions. They began with Stringer’s Look, Think, Act approach to action research [27], and added First Nations philosophies and methodologies to inform how each step would be undertaken. This resulted in a decolonising strengths-based approach to PAR that involved repeated cycles of Look and Listen, Think and Discuss, and Take Action Together guided by concepts of Dadirri deep listening [28, 29], Ganma knowledge sharing [30], and cultural safety [15]. This process and the underlying philosophies used to guide the AKction project and working group activities, are now explained in more detail.

The authors respectfully acknowledge that non-First Nations practitioners must avoid inadvertently colonising First Nations methodologies as they are First Nations knowledges [29]. We also recognise that First Nations methodologies can inform and encourage non-First Nations researchers and clinicians to conduct intercultural decolonising research and clinical practice in respectful collaboration with First Nations Peoples.

Look and Listen – Dadirri deep listening

The importance of paying attention to both verbal and non-verbal cues by using one’s eyes, ears and heart is shared by many Aboriginal groups across Australia, and has been described by the Ngangikurungkurr people of the Daly River region in the Northern Territory of Australia as Dadirri [28, 29]. Dadirri reminds clinicians and researchers of the importance of respectful listening and co-creating places that enable Aboriginal people to share their stories without judgement; recognising the impact of personal and professional power imbalances and the trauma caused by racism, marginalisation and tokenism. Dadirri involves slowing down and making time to listen. As described by Ungunmerr, Dadirri… is an inner deep listening and quiet still awareness. Dadirri requires a deep critical reflection, listening to and observing oneself, as well as and in relationship with, others. In this way, Dadirri is a Ngangikurungkurr form of reflexivity, of examining one’s own actions in clinical care and research [29]. Incorporating the concept and practice of Dadirri was a crucial step in establishing and maintaining trust and respectful relationships between working group members, and between students and First Nations community members.

Think and Discuss – Ganma knowledge sharing

The concept of Ganma, two-way knowledge sharing provides additional guidance on how to respectfully bring together First Nations and Western knowledge in research and clinical interactions. The Northern Australian Yolngu people have shared the concept of Ganma, two-way knowledge sharing [30]. This Yolngu philosophy values and acknowledges the unique knowledge that each person holds. Ganma is both a metaphor and a philosophy of what happens where a river of water from the sea (Western knowledge) and a river of water from the land (Aboriginal knowledge) mutually engulf each other, flowing together and becoming one. The forces of the streams (knowledge) combine and lead to deeper understanding and truth, and the foam produced when the saltwater mixes with the fresh water represents a new kind of knowledge. Ganma is a place where knowledge is (re)created [30, 31]. Ganma informed the working group activities reinforcing the importance of including both community and health professional knowledges into discussions and shared decision making.

Take action together – enacting culturally safe responses

The third step involved taking collaborative action in response to conversations and collective decisions made. Actions taken were informed by cultural safety and the underpinning concept that clinical care (and involvement in research), is culturally safe if it is perceived to be so by the recipients of care/community person [15, 20]. Cultural safety originated in Aotearoa New Zealand, when Māori nurse Irihapeti Ramsden [20] identified the need to address racism and power imbalances in health care. Cultural safety provides five key principles for clinicians and researchers. These are; reflect on your own practice, engage in conversation/discourse, seek to minimise power differentials, undertake a process of decolonisation, and ensure you do not diminish, demean, or disempower others through your actions [15].

Two additional methods were added by the kidney care-oral health working group to specifically inform the student education and clinical placement activities: clinical yarning and a student survey. During the initial stage, the AKction project and kidney care oral health working group recognised that although successful communication is central to every clinical consultation, effective communication between First Nations people and kidney health and oral health clinicians is often problematic and is arguably the biggest barrier to effective health care delivery [17, 32]. Clinical yarning is a patient centred approach that involves three stages; the social yarn in which the practitioner seeks to find common ground and develop an interpersonal relationship; the diagnostic yarn in which the practitioner hears the patient’s health story and interprets it through a clinical lens; and the management yarn which is care planning and explaining health issues in ways that community members can better understand, using stories and metaphors as tools [33]. In many ways, clinical yarning mirrors the Look and Listen, Think and Discuss and Take Action Together cycles in the PAR approach (as shown in Fig. 1), and applies it to a clinical setting. The working group incorporated clinical yarning theory and practice into student and staff education and clinical placement activities.

Fig. 1

PAR and Clinical Yarning

As part of planning and evaluating the dental hygienist clinical placement at Kanggawodli, a simple pre and post clinical placement pilot survey was initiated by the dental hygienist senior lecturer for students attending placement (see Table 1) to encourage deeper reflection from the students and provide student learning and feedback on their experience of this new clinical placement. The survey was conducted in October and November (semester 2) 2022, March, April, May and June (semester 1) and August, September and November (semester 2) 2023 as part of the course evaluation and quality improvement. All 22 students were sent a Survey Monkey link before and following their clinical placement and given a week to respond. Student responses were anonymous and non-compulsory. There were 17 responses from the 22 students. These were downloaded from Survey Monkey, allocated a participant number (in order of responses), collated and analysed using a simple descriptive analysis [34]. This student feedback informed the clinical placement the following semester.

Table 1 Pre and post clinical placement pilot survey questions

Ethics

Ethics approval was provided by the Aboriginal Health Research Ethics Committee (#04–18-796), the University of Adelaide (ID:33,394) and Central Adelaide Local Health Network (HREC/19/CALHN/45). Indigenous Governance through all stages of the research was provided by members of the AKction Reference Team. Oral Hygienist students were fully informed about the research project and the opportunity for them to participate in a pre and post clinical placement survey. The survey preamble sent to each oral health student (provided as a supplementary file) included consent to participate.

Results

The activities undertaken, and the process used are reported as results. Four phases of co-designed activities emerged as the collaboration deepened and opportunities were co-created as follows; Phase 1: initial identification of oral health—kidney health priorities and concerns from Kidney Warriors and kidney health and oral health practitioners and researchers as part of the AKction project; Phase 2: Cultural safety and clinical yarning training and an interprofessional skills day based at TAFESA Vocational College; Phase 3: Dental hygienist student clinical placement at Kanggawodli Hostel; and Phase 4: Review effectiveness, codesign of a new framework for Kidney health—oral health cultural safety education and next steps. Details of these activities and the processes taken during cycles of Look and Listen, Think and Discuss, and Take Action Together are shown in Table 2.

Table 2 Four phases of codesigned activities

Student pre and post clinical placement survey responses

A total of 17 of the first 22 students involved in piloting the clinical placement in October and November 2022, March to June and August to November 2023 as part of Phase 3 -Take Action cycle completed the survey. The survey responses varied in the amount of free text feedback given, but overall provided enough feedback to enable the dental hygienists to move from the pilot to more substantial involvement of all 2nd year dental hygienist students ongoing.

Students indicated that the clinical placement improved their awareness and enabled them to feel more comfortable and familiar in ways to work effectively and respectfully with First Nations community members.

I feel more comfortable talking to Aboriginal and Torres Strait Islander people and should hopefully translate into being more comfortable in providing culturally safe treatment (Student response 2).

It is about letting them come to you and letting them tell their story if that is what they wish. I felt very comfortable, very quickly (Student response 15).

Physically, most of the people are compromised with kidney dialysis/transplant. Cognitively and socially – most people engaged in a discussion with us about where they had come from and a little about their families. I think the main takeaway for me was that this population group appreciate time and patience to allow them time to tell their story without being rushed (Student response 1).

Students came to understand their role as an Oral Health professional working with First Nations Peoples more clearly.

Oral health professionals, with consideration to the past & present experiences of Aboriginal Australians in oral health, play a vital role in helping to close the gap between non-Aboriginal Australians and Aboriginal Australians… building a bridge to hard-to-reach communities… and ultimately deliver culturally safe healthcare practices (Student response 7).

Education in general is a fundamental right for everyone, …providing oral health education & promotion to these communities, can potentially enhance lives (health wise) and promote feeling of cultural safety (Student response 5).

The advice we provide in oral health care should line up with individual health needs. If the patient has specific needs, we need to alter our care and remember that our ’usual’ advice isn’t always applicable (Student response 12).

Students also identified scope for expansion with the clinical placement and services offered at Kanggawodli, recognising the importance of outreach, education and screening.

It would be great to eventually have an oral health screening/provide oral hygiene education at Kanggawodli- including denture care (Student response 1).

I do believe it would be beneficial to have a screening/ treatment program at Kanggawodli. It can be something that is provided in house which means they do not need to travel into town. It is important to allow access to all health services including dental (Student response 2).

All students agreed that their clinical placement had positively influenced their understanding of holistic are and interprofessional relationships. Some of the students had opportunities to work alongside the dialysis nurses and kidney health staff, improving their knowledge and skills in working inter-professionally.

The benefits from multiple perspectives

In Phase 4, the working group discussed the benefits of the collaboration for all key stakeholders involved, and decided to share this in a publication (this paper). These conversations occurred in face to face and online meetings and via email from July to December 2023 as part of Phase 4 reviewing effectiveness and next steps as shown in Table 2. The benefits were found to be multilayered and interlinked as shown in Table 3.

Table 3 Benefits emerging from the collaboration from multiple perspectives

The kidney health – oral health collaboration story map

The AKction team have experience and skills in ensuring results are translated so that they are accessible, understandable and applicable for community members, Kidney Warrior participants, health and educational professionals and researchers. This includes using mapping, stories and pictures to share detailed information about processes used, activities undertaken, and shared findings. The kidney health—oral health working group and the AKction team co-created a story map of the collaboration.

Discussion

Working with Kidney Warriors

This project aimed to codesign strategies to address disparities and gaps in care, and co-create more accessible, responsive, culturally safe and sustainable models of care together, increasing oral health care information, services and referral with and for Kidney Warriors—First Nations Peoples living with kidney disease. In Australia, and internationally, there is increasing recognition of the need and preference for strengths based decolonising research and clinical approaches co-designed with people who have been significantly and negatively impacted by societal structures, history, government policies and health care practices [5, 8, 35]. All too often people experiencing significant challenges are positioned as recipients of care with few decision-making opportunities within a health system that is governed by top down polices and biomedical concepts and practices [8]. This project sought to address this inequity and co-design more responsive oral health care by recognising Kidney Warriors as knowledgeable recipients of care and privileging their voices and priorities. Bringing together a diverse inter professional working group comprising accommodation services, oral health and First Nations and non-First Nations care providers, educators and researchers to work alongside Kidney Warriors enabled collaborative identification of gaps in care, discussion of options for improvement, and co-design of responsive strategies for improvement.

The AKction team and kidney health—oral health working group have come to understand that working respectfully and responsively with Kidney Warriors requires specific strategies, flexible arrangements and additional support structures. What became apparent to the whole working group is the extent to which many Kidney Warriors juggle fluctuating health and energy levels, restrictive dialysis and treatment timetables and the impacts of additional chronic conditions. In addition, there is an underlying and significant level of loss and grief experienced by First Nations Peoples, far too many funerals and ongoing Sorry Business (an important time of mourning that involves responsibilities and obligations to attend funerals and participate in other cultural events, activities or ceremonies with the community) [8]. For example, the Kidney Warrior who was significantly involved throughout most of this activity was in and out of hospital on and off throughout the project, sometimes for months at a time, and sadly, passed away before the project was complete. Her central role in co-leading the project, teaching staff and students, and actively inviting and involving other First Nations community members cannot be underestimated.

Co-designing a decolonising, culturally safe collaborative approach

A recent international systematic review of cultural safety in kidney care with First Nations Peoples [30] identified the importance of community-driven kidney care in which First Nations language, and ways of knowing and being and traditional ways of healing are prioritised. Similarly, the AKction project and the kidney care-oral health working group sought to respectfully incorporate First Nations approaches of Dadirri deep listening [28], Ganma knowledge sharing [30], Cultural safety [15] and clinical yarning [16, 33]. Care was taken to recognise and reinforce First Nations methodologies as First Nations knowledge [29], shared generously and explicitly for the purposes of improving collaboration and responsiveness of non-First Nations Peoples, services and approaches.

A specific participatory action research methodology was also purposefully selected to enable the group to level the playing field, privilege First Nations voices, and actively recognise and reinforce the strengths of patients and people whose specific health care needs have been prioritised. Working on the basis of ‘nothing about us without us’ informed the co-design of responsive strategies to improve care. Often clinically based action research processes involve repeated cycles of plan, do study act [36]. However, our team have found that these clinician-led approaches can reinforce Western hegemony and are therefore not appropriate nor effective in community connected intercultural projects that occur within a context of past and ongoing colonisation and intergenerational trauma [22, 26].

True collaborations take time. As can be seen in Table 2 and Fig. 2, it has taken a long time to establish, build and implement working relationships and co-designed activities; from initial community consultations in 2018, to collaborative education sessions in mid-2022 and clinical placements in late 2022 and 2023. Each collaboration is built on new and existing relational networks, mutual respect and trust. This all occurs against a backdrop of colonising research and health care practices that have inflicted significant harm for First Nations Peoples over many decades [8, 37]. The importance, complexity and care required to re-build trust in research and health care with First Nations Peoples cannot be overstated [37].

Fig. 2

Story Map goes here] (attached as PDF)

Co-designing a new framework for culturally safe oral health care and education

While writing up the collaboration process and findings, the working group co-created a new framework for kidney health – oral health cultural safety education and clinical care. This framework brings together learning from previous renal nursing collaborations [38], cultural safety concepts [15] and the three working group education activities; Cultural awareness and cultural safety training, the Interprofessional day at TAFE SA, and the clinical placement at Kanggawodli (see Table 4). The framework begins by considering levels of clinical skill acquisition as described by Dreyfus [39] and Benner [40] and how this applies for dental hygienist students and experienced dental hygienist clinicians and educators. The framework then introduces cultural safety and the process of learning about cultural safety and how to incorporate the key concepts into clinical practice. The main education activities: cultural awareness and cultural safety training, the interprofessional day at TAFE SA, and the clinical placement at Kanggawodli are placed within the framework, identifying how these helped students to progress along the journey of increasing their cultural awareness and safety. The pivotal role of Kidney Warriors is clearly shown. This includes both the involvement of AKction chief investigator and reference group member Kidney Warriors, and also the two-way learning that occurred between students and other Kidney Warriors (First Nations Peoples with kidney disease staying at Kanggawodli and/or attending dialysis) in oral health care discussions during clinical placement at Kanggawodli.

Table 4 A new framework for kidney health – oral health cultural safety education

Cultural safety involves lifelong learning. It is a journey, not a destination [15]. Part of the discussion in developing this framework involved a decision to not use the term cultural competency. This is due to previous observations of working group members and colleagues that some health and medical science students have completed cultural competency training and walked out believing they are now competent, and have nothing further to learn [21]. The limitations and dangers of using cultural competency have also been explored by nursing scholars, particularly in relation to the pressing need to decolonise health care [41]. Cultural safety requires practitioners to self-reflect and recognise power imbalances that exist between ethnicities, particularly in colonised countries. It highlights the dynamics of institutional racism and that the safety and responsiveness of care needs to be determined by recipients of care [15, 41]. Cultural competency can be informed by a range of frameworks, often involves the attainment of mastery and knowledge of another group’s culture, and does not explicitly address power imbalances and colonisation impacts in the same ways that cultural safety does [15]. Importantly, the cultural safety emphasis, process and activities undertaken by the working group in this project, and embedded within dental hygienist training, has assisted both students and staff to move from cultural safety as a concept, toward cultural safety and decolonisation in practice. The importance of learning and unlearning, and for non-First Nations educators to become effective accomplices in improving health care and education, has been clearly identified by Rix et al. [21]. A decolonising, culturally safe approach is fundamental to addressing the inequities that continue exist for Kidney Warriors and other First Nations Peoples.

Increased understanding of what responsive oral health care for First Nations kidney care involves

Another significant outcome of this collaborative project was a deeper understanding of what responsive oral health care needs to include for Kidney Warriors. The daily challenges encountered in juggling dialysis and treatment, family, caring and community commitment and ongoing colonisation and grief and loss make prioritising oral health difficult. Kidney Warriors who have relocated from rural and remote locations face additional challenges involving transport and accommodation, language and communication and dislocation from family, community and country [8].

Dental hygienist students and staff were able to explore and practice how best to increase health literacy for Kidney Warriors, and also for themselves. Health literacy underpinned by Ganma and clinical yarning is a two-way process, that involves taking the time to build relationships and getting to know each other, finding out what each other knows, and co-designing a responsive care plan going forward. It is the coming together of different forms of knowledge, and providing time, space and the right environment to enable this knowledge to swirl together to create new knowledge. Clinical outreach and clinical placement occurring at Kanggawodli Hostel, in a community setting where Kidney Warriors felt safe, supported and respected was key to this learning. Dental hygienist students were able to experience what it felt like to be in a new environment, as a minority group. They learned to sit and wait until community members came to them. They felt well supported by the dental hygienist facilitators/educators, as identified in the post clinical placement survey, and were able to learn new skills, in ways they could not have in the classroom, or a mainstream clinical setting. The students were also able to learn how to work in interdisciplinary teams, and see for themselves the advantages of holistic care, moving through both clinical [39, 40] and cultural safety [15] skills acquisition.

Next steps

The working group are continuing to collaborate and expand and embed the kidney health-oral health program. The dental hygienist clinical placement has moved from a pilot project to an embedded placement, with plans to extend so that second year dental hygienist students can attend at least twice to consolidate their learning. Discussions have recommended with the dental school to explore options for dental students to also have community based clinical placements with Kidney Warriors.

A successful Australian Dental Health Foundation grant application will fund increased education opportunities, consumables and a portable light for screening. There are plans to bring in a sessional dentist and provide onsite dental care at Kanggawodli Hostel, to complement other wrap around primary health care provided. The long-term plan is to set up an outreach dental clinic at Kanggawodli, taking services to people, rather than trying to get people transported to unfamiliar services in unfamiliar sites. Kanggawodli provides a culturally safe setting and a comfortable place for people to connect with other Aboriginal people while waiting to see a dentist. There is another Aboriginal hostel next door, within easy walking distance.

Limitations

As with all research projects, this project has a range of limitations as well as strengths. This work has taken place alongside the working groups’ usual roles, with no additional designated funding or resources. A recent successful application for additional funding will enable more support and an expansion of activities. There is also a dedicated emphasis on moving this from a pilot study to a sustained and embedded program. This research took place in a specific location and specific context, and so may not be immediately transferable to other settings and community groups. However, the underlying concepts of culturally safety and decolonising co-design in clinical care and education are transferable. This project did not involve formal evaluation by Kidney Warriors, but will be included and written into future activities. Sadly, the loss of one of our Kidney Warrior colleagues and friend meant that her key insights were included in the draft, but not the final version of this article.

The student pilot survey was a small initial survey rather than a more extensive evaluation survey. This will be extended as the program moves from a pilot to a more sustainable and resourced program. Similarly, the specific leaning outcomes for students are still in the process of being developed. This is an emerging collaboration, as is the overall AKction project, and emerging results will further inform this space. A key strength of this collaborative embedded participatory action research approach is that there have been immediate positive impacts for community members, students and oral health and kidney health professionals. This counters the research findings knowledge translation gap, and also ensures that research involving First Nations Peoples is meaningful, and responsive to their needs and priorities.

Conclusion

This project has collaboratively identified and responded to gaps in oral health care with and for Kidney Warriors—First Nations Peoples living with kidney disease. A working group comprising Kidney Warriors, kidney health and oral health care professionals and educators, an Aboriginal hostel manager and public health researchers co-designed a responsive decolonising participatory action research approach. This approach, based on relational networks, First Nations methodologies, inter-professional collaboration and joint decision making, was effective in increasing access to oral health information, screening and referral for First Nations Peoples. Co-designing, piloting and establishing a new cultural safety education program and clinical placement for dental hygienists and informing the development of outreach dental services in the near future is the next step in decolonising oral care with and for First Nations Kidney Warriors.