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

doi:10.21203/rs.3.rs-3784046/v1

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Research Article

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

https://doi.org/10.21203/rs.3.rs-3784046/v1

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Journal Publication

published 30 Jul, 2024

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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 people 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. Aboriginal 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 people with kidney disease. This project provides a working example of how to decolonise health service and education programs from the ground up.

First Nations

Aboriginal and Torres Strait Islander

oral health

kidney health

collaboration

participatory action research

decolonisation.

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 County (the land, seas, waterways, skies, animals, plants and elements), Community (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). Aboriginal and Torres Strait Islander 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 Aboriginal and Torres Strait Islander 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 Aboriginal and Torres Strait Islander 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 hours each session (8). In South Australia, the majority of First Nations peoples 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 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 Aboriginal and Torres Strait Islander 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).

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 vulnerable peoples (12). Dentist and dental hygienist training, occurs within Australian Universities and the TAFE vocational sector, 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 Aboriginal and Torres Strait Islander Peoples, and those with lived experience of kidney disease specifically, has been minimal (12).

Many Aboriginal and Torres Strait Islander people 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 Aboriginal and Torres Strait Islander 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 is often poor understanding of the importance of outreach, what this 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 Aboriginal and Torres Strait Islander people from rural and remote areas (18).

In Adelaide, South Australia, The AKction: Aboriginal Kidney Care Together – Improving Outcomes Now project is a 5-year National Health and Medical Research Centre funded participatory action research project, initiated to improve the experience and outcomes of kidney care for and with Aboriginal patients, families and community members and kidney health services (19). The AKction project is led by an Aboriginal and non-Aboriginal public health researcher, three Aboriginal people with lived experience of kidney disease (Kidney Warriors) and a non-Aboriginal nephrologist as chief investigators. Indigenous Governance is provided by a reference team of Aboriginal and Torres Strait Islander people living with kidney disease (Kidney Warriors) and their families from across South Australia, and associate investigators are First Nations and non-First Nations researchers and clinicians. There are four nested sub studies: Indigenous Governance, Peer support, Kidney Journey Mapping and Cultural Safety (19).

Oral health was raised as a significant issue by Aboriginal 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 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 (20). The AKction project and Kidney Warriors were significantly involved co-designing this change with kidney health services toward more responsive dialysis care.

The kidney care-oral health working group comprises AKction Aboriginal and non-Aboriginal researchers and reference team members, the manager of the Kanggawodli Aboriginal Hostel, a dental hygienist with well-established networks, a senior lecturer and dental hygienist from TAFE SA vocational college, an Aboriginal Health Practitioner and a 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 AKction project uses a decolonising methodology and collaborative community-based participatory action research (PAR), bringing together Aboriginal and Western research methods and concepts into a co-designed intercultural approach (19). Decolonising approaches recognise that research has historically and institutionally been contrived in a Western construct (21), and that Indigenous methodologies and methods can be used to shift the research paradigm and privilege Indigenous ways of knowing, being and doing (22, 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 Aboriginal women to improve access to care (23). In that study, the Aboriginal women and a non-Aboriginal 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 decisions being made and in determining responsive actions. They began with Stringer’s Look, Think, Act approach to action research (24), and added First Nations/Indigenous 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 (25) (26), Ganma knowledge sharing (27), 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 (26). 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 (25) (26). 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 one self as well as, and in relationship with others. In this way, Dadirri is an Aboriginal form of reflexivity, of examining one’s own actions in clinical care and research (26). 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 Aboriginal 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 (27). This Aboriginal 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 (27). Ganma informed the working group activities reinforcing the importance 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). Cultural safety originated in Aotearoa New Zealand, when Māori nurse Irihapeti Ramsden 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 Aboriginal people and kidney health and oral health clinicians is often problematic and is arguably the biggest barrier to effective health care delivery. 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’ 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 (28). 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.

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 (see Table 1) to encourage deeper reflection from the students, and feedback on their experience of this new clinical placement. The post clinical placement results from the 17 responses from the first 22 students were collated and informed the clinical placement the following semester.

Table 1

Pre and post clinical placement pilot survey questions
Pre clinical placement survey questions 1. What age, gender mix and living arrangements do you expect to be seeing during your visits? 2. What do you expect to encounter regarding, physical, cognitive and social abilities? 3. Given your current knowledge and experience, how comfortable do you feel about providing culturally safe care to Aboriginal and Torres Strait Islander people? 4. How do you perceive the role of the Oral Health Professional, as part of support and allied health services, including types of dental care, that will be provided during your visits? 5. Do you believe your visits will influence your understanding of holistic care and inter-professional relationships? Post clinical placement survey questions 1. Do you believe you now feel more aware and comfortable about providing culturally safe care to Aboriginal and Torres Strait Islander people? 2. How do you perceive the role of the Oral Health Professional, as part of support and allied health services, including types of dental care, that will be provided during your visits? 3. Do you believe your visits will influence your understanding of holistic care and inter-professional relationships?

Ethics

Ethics approval

was provided by the Aboriginal Health Research Ethics Committee (#04-18-796), the University of Adelaide (ID:33394) 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. Informed consent was obtained from all participants. The datasets used and/or analysed during the current study available from the corresponding author on reasonable request.

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. Phase 1 involved 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
Process	Steps taken
Phase 1: The AKction – Aboriginal Kidney Care Together - Improving Outcomes Now project
Look and Listen Dadirri	Kidney Warriors met with researchers (June 2018) • Community members with lived experience of kidney disease (Kidney Warriors) had been advocating for improvements in kidney care, oral health care and transport but were unable to make real changes as individuals. • Kidney health clinicians and public health researchers met with Kidney Warriors to discuss whether they were interested in co-designing a research project.
Think and Discuss Ganma	Community consultations with Kidney Warriors and health professionals were held in: • Adelaide – Kanggawodli Aboriginal hostel where people from rural and remote areas were staying while seeking specialist medical care (December 2018). • Regional Port Augusta Dialysis Unit and Aboriginal Health Service (February 2019). • Remote Ceduna Hospital and Aboriginal Health Service (July 2019). Kidney health and oral health practitioners met with researchers. • Identified gaps in care and began kidney health-oral health collaboration (March 2019). AKction1 key stakeholder meetings were held involving Kidney Warriors, kidney health, oral health and Aboriginal health professionals and educators, peak bodies, policy makers, funders and decision makers. • Focus on transport and accommodation (November 2020). • Focus on oral health and workforce (November 2021).
Take Action Together Cultural Safety	Establishing research program and focus. • Kidney health professionals and researchers successfully apply for funding for AKction1 (2018–2020) & AKction2 (2020–2025) projects. • Aboriginal warriors provide Indigenous Governance through AKction Reference Team (A2RT). Co-designing improved models of kidney care. • AKction, renal services and Kanggawodli Hostel work in collaboration to address transport and accommodation concerns impacting access to dialysis. • Two dialysis machines piloted at Kanggawodli Hostel. Seeking to improve oral health alongside kidney care. • Kidney care oral health working group formed. • Involvement of dental school staff and students investigated, but not feasible at that time (January 2021). • Involvement of dental hygienists at TAFE SA (November 2021). • Site meetings at Kanggawodli Aboriginal Hostel (May 2022).
Phase 2: Clinical yarning and cultural safety training and Interprofessional skills day at TAFE SA Vocational College
Look and Listen Dadirri	Review what is currently happening: • at TAFE SA Vocational college. • what involvement AKction Reference Group Team members, Aboriginal health professionals and Kanggawodli Hostel manager would like to have/had capacity for.
Think and Discuss Ganma	Discussing and deciding the priorities, approach and logistics of holding sessions. Cultural awareness and cultural safety training Aboriginal Kidney Warriors, Aboriginal and non-Aboriginal educators came together to discuss lived experiences, education approaches, and how best to co present the material together. Interprofessional skills day Discussing which strategic health professional and key stakeholders to be involved as presenters and attendees.
Take Action Together Cultural Safety	Cultural awareness and cultural safety training sessions (April 2022). • In-class workshop/lecture for all 2nd year dental hygienist students. • Provided by Aboriginal Kidney Warrior, Kanggawodli manager/cultural safety educator, AKction nurse researcher/lecturer, and experienced dental hygienist. Interprofessional skills day (July2022) – 70 attendees including: • 1st and 2nd year Dental Hygienist Students and staff education workshop at TAFE SA. • Key stakeholders attendees RFDS- Royal Flying Doctor Service, specialist dental practitioners, representatives and leaders from peak dental health professional organisations including Australian Dental Association and Dental Hygienist Association of Australia.
Phase 3: Dental hygienist student clinical placement at Kanggawodli Hostel
Look and Listen Dadirri	Site visits at Kanggawodli. • Involving educators and managers at TAFE SA, Kanggawodli manager and kidney care staff (May 2022). • Review student timetable and Kanggawodli schedules and activities.
Think and Discuss Ganma	Substantial planning for Dental hygienist student clinical placements at Kanggawodli. • Involving TAFE SA, Kanggawodli manger and kidney health staff. • Logistics, timing, days of the week – what suits the residents best, led by the Kanggawodli manager. Discussion of best approach for piloting clinical placement • Decision to start with two sessions, with three students in each. This number of students would be manageable and not overwhelm residents and people on dialysis.
Take Action Together Cultural Safety	Clinical placement pilot – 6 students • First clinical placement involving 3 students x 2 sessions (October& November 2022). • Review effectiveness (small student pre and post survey). Second clinical placement – 16 students • 2nd year dental hygienist students: 4 students x 4 monthly placements (March, April, May, June 2023). Third clinical placement – 14 students • 2nd year dental hygienist students: 3–4 students x 4 monthly placements (August, September, November x 2). Attendance of all oral health-kidney health working group at the CARI Guidelines launch – the first Australian National guidelines for culturally safe and clinical kidney care for First Nations Australians.
Phase 4: Review effectiveness and next steps
Look and Listen Dadirri	Evaluation of activities and processes. • What is working, what needs changing, what further improvements can be made? • How can oral health services be expanded across other Aboriginal health service sites?
Think and Discuss Ganma	What are the benefits emerging from the collaborative activities? • Discussion points and benefits from multiple perspectives recorded – see Table 3. • A new framework for Kidney health - oral health cultural safety education developed – see Table 4. How will we share what we are learning? How to progress a range of impactful and inclusive knowledge transition activities? • What steps are needed to move from a pilot project to an embedded, sustainable service? • Review of what services are currently being provided and where the gaps are. • What funding is required and possible sources? • Possible collaborations with existing services and networks. • Building on the emerging Indigenous Oral Health Alliance, bringing together all Oral Health services in South Australia providing services with/for First Nations peoples. How to increase the number of clinical placements for each student from 2024? • Ongoing discussion with Kanggawodli re capacity.
Take Action Together Cultural Safety	Working group knowledge translation activities • Present at national dental hygienist conference as a panel (September 2023). • Collaboratively write a peer reviewed article (this paper). • Co-design a visual map recording the group’s collaborative activities over time, which is accessible for participants/audiences with varying English literacy (Fig. 2). • Moodle learning and content update for students pre and post Kanggawodli clinical placement. Appy for Australian Dental Health Foundation funding grant (July 2023) – successful • to support student engagement. • for hygienists to be involved in education, screening and support. • to provide education, consumables, portable light for screening.

Student post clinical placement survey responses

A total of 17 of the first 22 students completed the survey. The survey responses provided enough feedback to enable the dental hygienists to move from the pilot to more substantial involvement of all 2nd year dental hygienist students the following semester.

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.

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.

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.

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.

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.

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.

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.

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.

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. The benefits were found to be multilayered and interlinked as shown in Table 3.

Table 3

Benefits emerging from the collaboration from multiple perspectives
Kidney Warriors’ perspective • Improved access to oral health information, assessment and referral • Active involvement in co-designing improved care ‘nothing about us without us’ • Social and human connection - we are a long way from home and get to share our stories and connect – we miss our home, family and community, and to have someone sit and listen is very good.
Kanggawodli Hostel perspective • The oral health promotion, screening and referral activities have complemented existing wrap around services being establish for Kidney Warriors staying at the hostel, attending dialysis, and or kidney transplantation workup. • This is filling a gap in the primary care assessment and supported referral pathway.
Benefits for dental hygienist students • Students have increased understanding of inequities, complexities, access issues, barriers to accessing treatment, and the importance of two-way communication in increasing health literacy of both client and professional. • Seeing and hearing people’s stories, the statistics become human. • Students have experienced the challenges through the stories and by walking alongside kidney warriors, changing their perspectives from 1 dimensional to 3 dimensional. • These students are the future workforce, and they are gaining a contextualised understanding and knowledge of what culturally safe practice is. • Students report feeling more confidence in providing culturally safe and responsive care. • Clinical yarning strategy extends medical dental history and is something that students can take with them in their careers. • Students have learned how to sit quietly, and let community members come to them, and that there is no such thing as an awkward silence. Learning not to fill the gaps in communication. • Meeting community members in a community setting and asking, what do they want, not what we think they want (avoiding repeating mistakes of the past). • These 2nd year students, soon to become dental hygienists, are learning how to build trust when working with ‘vulnerable and marginalised’ populations.
Benefits for dental hygienists, facilitators and educators • The stories shared during all the activities have been impactful for both staff and students. They are funny, confronting and sad. We feel their sadness, missing home and family. One person said ‘my heart is there [in their remote home community, while they were stuck here in the city] ’. • Being involved in the working group activities has revitalised personal interest in clinical work, giving a new lease of life, and new meaning to work. • Have gained more confidence in working with Aboriginal community members and Aboriginal colleagues. • The working group activities have become a catalyst for increasing support from the vocational college, dental services and management who are recognising the importance of the work and how this informs future pathways in education and clinical care. • The working group activities have reinforced health promotion perspectives, and that they have to be targeted at different levels. Multiple layers of health promotion are needed to address the social determinants of health. • The clinical placement at Kanggawodli has strengthened interprofessional collaborations, meeting allied health professionals also caring for people at Kanggawodli and making referrals together.
Benefits for kidney health professionals and services • Improved collaboration between oral health and kidney health professionals and services. • Improved access and options for Kidney Warriors on dialysis, and also for those undergoing kidney transplantation workup. • Improved access across a spectrum of social determinants with financial, transport and language barriers. • Improved self-esteem, confidence and engagement of patients.
Benefits for the AKction project • The working group activities have enabled the AKction team to respond to Kidney Warriors oral health concerns and priorities, and to support their involvement in meaningful co-design of decolonising and culturally safe responsive strategies. • Increased skills, knowledges and experience in the working group and expanded collaboration, extending our relational network.

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.

[Figure 2 Story Map goes here]

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 people 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, 29). All too often ‘vulnerable people’ 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. 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 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 (25), Ganma knowledge sharing (27), Cultural safety (15) and clinical yarning (16, 28). Care was taken to recognise and reinforce First Nations methodologies as First Nations knowledge (26), shared generously and explicitly for the purposes of improving collaboration and responsiveness of non-First Nations people, 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, people and populations who are often positioned as ‘vulnerable’. 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 (31). 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 (19, 23).

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 back drop of colonising research and health care practices that have inflicted significant harm for First Nations peoples over many decades (8, 32). The importance, complexity and care required to re-build trust in research and health care with First Nations peoples cannot be overstated (32)

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), decolonising methodologies (22), 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. 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.

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 (33), 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 (34) and Benner (35) 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 people with kidney disease staying at Kanggawodli and/or attending dialysis) in oral health care discussions during clinical placement at Kanggawodli.

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 (36). 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 (37). 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, 37). 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 (36). A decolonising, culturally safe approach is fundamental to addressing the inequities that continue exist for Kidney Warriors and other First Nations peoples.

Table 4

A new framework for kidney health – oral health cultural safety education
	Dental hygienist training 2 year Vocational Course			Experienced dental hygienist / facilitators
Levels of skill acquisition (34, 35)	Novice	Advanced beginner	Competent	Proficient	Expert
Levels of clinical safety (in oral health care)	Learning basic skills	Practicing basic skills with supervision	Applying knowledge and skills under supervision	Applying knowledge and skills in practice	Expert, independent practice
Students’ and experienced professionals’ learning	Tell me what to do and I will do it	Principles based on experiences, begin to be formulated to guide actions	Gains perspective from planning own actions based on conscious, abstract and analytical thinking	Learns from experiences what to expect in certain situations and how to modify plans	Reflexivity no longer relies on principles, rules or guidelines to connect situations and determine actions. Can operate in increasingly complex situations.
Cultural safety journey	Cultural awareness		Cultural sensitivity (rather than cultural competency)	Increasing cultural humility and cultural safety, which is a life long journey Decolonsing clinical practice and education
Level of cultural safety (in oral health/kidney health care)	Learning basic skills		Practicing and applying knowledge and skills under supervision	Actively co-designing responses and strategies with Aboriginal colleagues and Kidney Warriors
Kidney health - oral health- working group activities	Cultural awareness and cultural safety training	Interprofessional day at TAFE SA	Clinical placement / yarning sessions at Kanggawodli hostel	Strategic discussions in clinical and education	Affirmative action
Involvement of Aboriginal Kidney Warriors	AKction Kidney Warriors - sharing perspectives and lived experiences with students. Are heard and respected as experts of their own health priorities, lives and needs.		Aboriginal residents involved in two- way oral health /cultural knowledge sharing with students	Actively involved in decolonising co-design through the AKction project and the kidney care-oral health working group
Students’ and experienced professionals’ learning	Becoming aware that there are more than one cultures		Perceiving different care needs, and that action is required to meet these care needs	Awareness of impact of self, others, health system and socio-political /historical/colonisation context on patient experiences and care. Takes action to meet patient priorities within complex health systems, i.e. cultural determinants of health.

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 team, and see for themselves the advantages of holistic care, moving through both clinical (34, 35) 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.

This project has collaboratively identified and responded to gaps in oral health care with and for Kidney Warriors - First Nations people 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 ‘vulnerable populations’. 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.

Author Contribution

Authorship contribution to the manuscript. J.K.,M.S.,K.C. wrote the main manuscript, in discussion with K.O.,K.T.,N.S.,S.R. and W.A. All authors reviewed the manuscript. Kidney Warrior N.S passed away before the final version was complete.Authorship contribution to the study - Author information JK is a German, British, Welsh woman who grew up on Ngarrindjeri Kangaroo Island, mother of two daughters, and a health services research nurse researcher who co-leads the AKction project and the kidney health-oral health working group. JK works in collaboration with First Nations and Non-First Nations peoples to decolonise and improve health care and education access and experiences. She helped to initiate AKction and the working group in response to First Nations community concerns and gaps in care.KO is a Kaurna, Narungga & Ngarrindjeri woman, mother of five and Mutha (nanna) of two boys and a girl. She is a Kidney Warrior with lived experience of kidney disease, peritoneal dialysis, haemodialysis, kidney transplantation and being a carer of her son on his kidney disease journey. KO uses her personal and family experiences and knowledge of kidney disease to advocate for and support others on their journey. She is Chief Investigator and Reference Team member of AKction, the National Community Engagement Coordinator and National Indigenous Kidney Transplantation Taskforce. KO was one of the Kidney Warriors who raised oral health concerns, and working as part of AKction and the Working Group to co-design strategies. MS is a Scottish, Irish and Danish woman who grew up in Mid North of SA, Ngadjuri Nation, mother of two sons, and dental hygienist, educator, mentor, networker and advocate who has worked in special care dentistry, homelessness, University of Adelaide, TAFE SA. MS is chair of the special care dentistry special interest group and TAFE course advisory panel. She holds a OAM and Red Cross Humanitarian Partnerships Award. MS utilised her extensive networks and experience in special needs dentistry to co- lead the working group activities.KC is a Italian and German woman who grew up in North of Adelaide on Kaurna country, mother of two sons and dental hygienist and senior lecturer at TAFE SA. KC is on the Australian Dental Council Accreditation Committee and South Australian Oral Health Plan Monitoring Group. KC initiated and led the involvement of TAFE SA and students in the working group activities. KT is a Welsh Irish woman,mother of three, who works as a renal nurse consultant - Aboriginal health alongside KO and SR. KT supports Kidney Warriors and their families to access and understand dialysis and renal care and kidney transplantation workup. KT was involved in setting up the clinical dialysis and has an important health professional role in providing cultural safety and decolonising education for renal staff. NS was a Ngarrindjeri and Yorta Yorta woman, mother and auntyAunty, with extensive lived experience of kidney disease, dialysis, transplantation co-comorbidities, health care access and mobility access challenges. She was co-founder of the AKction 1 Reference Group and Chief Investigator and Reference team member of AKction 2. NS was a keen advocate for improvements in transport, accommodation, financial assistance and improved care delivery, particularly for rural and remote renal patients. She successfully lobbied politicians, attended parliament and conducted radio, television and newspaper interviews. NS was a Kidney Warrior who helped identify oral health and transport concerns, and was actively involved in all working group activities including co-teaching cultural safety to students and supporting the clinical placement activities as a community advisory group member at Kanggawodli. SR is a Gooniyandi woman from the Kimberley and a renal Aboriginal Health Practitioner. SR has a vital role in supporting Aboriginal people commencing dialysis and kidney transplantation work up. She works based in a tertiary hospital and Kanggawodli hostel, and has a strong advocacy, cultural safety and health information role. SR was actively involved in supporting education, health literacy, referral and clinical placement activities as part of the project. WA is a Malak Malak man from Daly River region in the Northern Territory, working on Kaurna country, who works for the SA Department of Health, Northern Adelaide Local Health Network, Watto Purrunna, Aboriginal Health Division and is the Accommodation and Administrative Services Manager at Kanggawodli. WA previously worked as a Senior Aboriginal Consultant with Housing SA and held varying roles within the government sector over 29 years, and was instrumental in the development and support of the dialysis chairs project and working group activities at Kanggawodli, and cultural safety education at TAFE SA.

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No competing interests reported.

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

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Abstract

Background

Methods

Results

Conclusion

Figures

Background

Methodology and methods

Look and Listen – Dadirri deep listening

Think and Discuss – Ganma knowledge sharing

Take action together – enacting culturally safe responses

Ethics

Results

Student post clinical placement survey responses

The benefits from multiple perspectives

The kidney health – oral health collaboration story map

Discussion

Working with Kidney Warriors

Co-designing a decolonising, culturally safe collaborative approach

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

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

Next steps

Limitations

Conclusion

Declarations

Author Contribution

References

Additional Declarations

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