Participant characteristics
We conducted five First Nations Community Panels across Australia between September and November 2019, and September and December 2020, with a total of 40 participants (2019, n=18; 2020, n=22). The Panels included participants from a range of age groups and most participants were women (31/40). Panel composition ranged between 7 and 11 participants per Panel.
All 40 participants from the five Panels verbally indicated strong support of the First Nations Community Panels approach as an effective way of engaging First Nations Peoples in making decisions about pandemic planning and responses.
Key themes that emerged were centred on the principle that First Nations Peoples are important in the context of continuation of culture, connection to country and ongoing political resistance. The stories, shared experiences and collective wisdom of the First Nations Community Panels can be understood under the overarching theme of respect, and through two main themes: ‘First Nations ways are important’ and ‘Trust’. Respect is a foundation for good relationships and expresses human rights in honouring the unique value of each person and diversity between people.33
Six subthemes of ‘First Nations ways are important’ emerged:
‘Self-determination’ enables First Nations Peoples to have control over aspects of their health. Participants emphasised the need for real commitment and a shift in power-sharing. First Nations lives, families, communities, voices and decisions are important, and must be empowered to exercise autonomy over their health. This can be achieved if government health departments ‘support and resource [First Nations] communities towards ‘self-determination’, ‘self-sufficiency’ and ‘self-management’ in preparation for pandemics or other disasters impacting on communities’.
There was a sense of ‘ongoing resistance’ to challenge current public health policy that reflect social realities of First Nations lives; ‘make noise and be proud and loud’; “We are still stuck in policies around assimilation…policies are not reflective enough of the [First Nations] context or experience…There needs to be some exclusivity…in recognition of our First Nation’s status as the First Nations People….”
First Nations Peoples continue to thrive because cultural knowing, kinship systems and good ‘governance’ and pandemic plans and responses must focus on First Nations best practices that reflects local cultural protocols, family, protects elders, is community-controlled and community-based and strategies that make ‘…practical sense to prevent and have a lot more preventative programmes, which is what the community came up within the first instance in their concept of primary health’, as First Nations Peoples have “always wanted to do things for ourselves…and have that opportunity for…communities to have control and be able to not only recognise what issues are important, prioritise which ones they want to tackle first….”
Systemic racism exists within the health system. Participants openly shared their experiences of discrimination and the ongoing impacts of discriminatory government legislation and practices on their health and well-being. ‘Equity and First Nations rights’ as a subtheme recognises that First Nations communities must be prioritised and adequately funded, resourced and supported to enable the opportunity and the right to access fair, equitable and culturally appropriate healthcare.
The strength of First Nations Peoples lay in the ‘Connectedness; families, communities, culture, holistic’ and that approaches to pandemic planning and responses and policies must value First Nations culture and ongoing connection to each other and be ‘driven about working in two-worlds and two-ways’.
First Nations Peoples must ‘be involved in those decision-making processes’. Participants highlighted that First Nations Peoples are often mentioned in local, state and national pandemic plans and responses and are recognised as being central to service delivery, however, this does not often translate into practice. There is a real ‘strength of inclusiveness’ when First Nations Peoples are prioritised and given opportunities to participate in the development of pandemic plans and policies that is informed by the context and experiences of First Nations communities.
We’re often the forgotten ones…and it’s times like this, it really shows how under-resourced and how forgotten we are. Out of sight, out of mind when it comes to any kind of strategies, and…here we are. We’re doing this after the fact. That’s not what our health definition is. We want to stop our mob from getting sick.
An action theme emerged from the six subthemes above, offering a way to engage in understanding of histories, struggles and strengths through ‘communication as a two-way learning’, where the dominant culture gives up space and time and really listens so that First Nations Peoples can freely share knowledges and perspectives.
Four sub-themes of ‘Trust’ emerged:
Understanding that First Nations Peoples have an ongoing connection to the ‘past, present and future; as a continuum of time’. The movement over this continuum is fluid and evolving, and must be acknowledged, valued, respected. This means learning and listening to the ‘past’, changing today (present) to create a better tomorrow (future).
‘First Nations ways work’ because of ‘cultural knowledge and community connections’, ‘ways of sharing knowledge and storytelling’ and it is through good governance structures where First Nations Peoples actively participate in real and meaningful decision-making, and exercise true leadership, empowerment and autonomy.
‘Fear and trust balance’ is always going to be challenging because historical influences and negative relationships with government authorities. This has led to fear of the unknown with pandemics, which can lead to fear and distrust in the government because of the perceived deception or withholding information; ‘Health authorities telling individuals what to do, but not telling them why’. Trust is essential for decreasing fear and enabling two-way and open and transparent communication and ‘have information that is clear, consistent and reliable and not scaremongering or instilling fear in people’.
‘We therefore need understanding, together’, where First Nations values and principles are given real priority, and First Nations Peoples determine the way.
An action theme emerged from the four subthemes above, with the understanding and trust that First Nations ways work, therefore ‘privileging First Nations voices to drive system change’ is important and must participate fully in shared decision-making through culturally appropriate governance structures.
Engaging First Nations Peoples
Participants found the Community Panel process engaging. For many, this was the first example of ‘authentic engagement’. Participants expressed that Panels should be a ‘general rule’ for engaging with First Nations Peoples and a ‘very important process for [First Nations] people to be aware of’. The work highlighted the importance of government authorities working better with First Nations Peoples through shared-listening, shared-understanding and shared-respect:
Government should be respectful of [First Nations] ways of being, and adjust the way of how we live, and respect diversity of communities, by listening to the community on cultural and community processes and protocols.
All panels identified that systemic racism exists within the Australian health system and broader government. The questions presented and subsequent Panel discussions, brought up trigger points for participants who openly shared their experiences of racism from past and current government legislation and practices. The discussions, strategies and decisions highlighted power-imbalances between First Nations Peoples and government decision-makers.
We are still stuck in policies around assimilation….policies are [not]…reflective enough of the [First Nations] context or experience. There needs to be some exclusivity for [First Nations] People in recognition of our first nation’s status as the First Nation’s People of this world.
Participants stressed the importance of health policies being inclusive of and valuing First Nations People’s worldviews and knowledges, that are informed by cultural protocols and values, and the context and experiences of First Nations communities; “we are not…an interest group…we are traditional owners from all over this nation”.
Participants felt the Panel gave them a voice, “whether or not [policymakers] take on what we say, at least we know that we’ve put our points across”, and felt they were proactive in engaging in discussions and decisions and to “do what’s best for [our] people and…community”. One participant said, “no one ever comes back and asks us how could we do it better, how could we help you to look after your mob better…I’ve never had anybody come back and ask ‘what’s your input?’”
There was a sense of scepticism about government authorities listening and questions about ‘whether or not policy makers want to listen to the words of First Nation[s] People’, however, there was more trust because the Community Panel approach was led and facilitated by First Nations people, ‘it is…important about who the messenger is’. Some participants were wary of the process at first and wondered if the research was a way of ‘setting us up for something…to be the scapegoats if something goes wrong, but [felt it was] more creating the opportunity…to have input and a say…and getting community views…[and] for [community] to learn about the process’.
However, there was genuine trust and hope for uptake of recommendations because there are First Nations Peoples at the table in leadership positions representing participants ‘up the top…chucking tantrums to make them listen’, and if policymakers did not take on their recommendations, Panel members were confident they were proactive in getting their points across and doing what is best for their people; “We’re making decisions on contributing towards policy development based on evidence, practical evidence in the community. Not evidence on paper where decisions inside a board meeting, within four walls”. There seemed to be more trust in this engagement process because there was a genuine space and time given to participants being proactive in putting their voices and points across “to do what’s best for our people and our community”.
The bigger picture is that we finally have a voice to do something, to be at the forefront, but at the beginning of this, not the end, add-ons, and we are making decisions and making recommendations that will help our people.
[I] actually believe that this process will go towards that…because I’ve sat on many things like this, and it goes nowhere, but I have got a sense that this will go somewhere, and that it will help our people in what happens if a pandemic in this area. And we have the leaders…to move it forward.
Despite some hesitancy, participants trusted the process, and there was hope that First Nations Peoples would be heard, and their decisions were ‘not just going to sit there, [and] fall on deaf ears and [their voices] go nowhere’. One participant suggested this way of working is genuine engagement and “good to see proper consultation, giving us time to think about things and re-evaluate it in our own heads, and with our families and communities, because this kind of engagement doesn’t happen”.
Feedback on the Panel process indicated that they: enabled grassroot perspectives; empowered community to understand how they can make changes and that when there is real investment of time into good engagement that the ‘outcomes look after themselves’. There was a real sense of pride to be able to share knowledge and understanding with family and community; “we are trying to do what’s best for our people and our community”. Panel members felt it was an “enjoyable experience…we share so many sorrowful things but happy things too. This is a very important process that we want our Peoples to be aware of…it’s this community involvement [that] is precious”.
Panel design, structure and format
The design of the Panels enabled participants to work together in a “safe environment and…able to speak freely…[because] we connect…understand…and [are] able to have a say but…to make sure that community [also] has a say”. Incorporating a cyclical engagement process appeared to be a key element of why participants felt safe in this space. Developing and maintaining respectful and trusting relationships was essential and allowed for open discussions between participants and researchers. Participants emphasised the central importance of First Nations Peoples delivering the sessions in a format that seeks and enables active engagement. Participants reflected on the process and identified that an interactive approach through yarning and small group activities allowed participants to review, reflect and seek points of view from their peers. Additionally, participants enjoyed the communication and cooperation evident in the Panels.
…the process is…good with the repetition of the questions, making us come back and look at it again and reflect…there are different things that we learn and there are different people we talk to, so we come back with sometimes a different point of view….
Although some participants stated that face-to-face sessions were better than virtual, the latter was acceptable given travel restrictions and provided a medium with potential to reach more people.
Participants said they felt safe voicing their opinions and ideas in small group activities and did not feel pressured or intimidated to go with group consensus; ‘small groups is far less intimidating…as opposed to sitting at a large table, it wouldn’t be as interactive…’ and “you didn’t feel pressured…to go with general consensus, there was still a safety in numbers that you could share your opinion”.
Participants identified the content of expert presentations was in language that could be understood, increased knowledge and awareness on the issue, and provided context to make informed decisions, although ‘it did not make their decisions any easier’. The presence of an expert in the meetings was appreciated to clarify questions, speak to concerns and contribute to discussions. Hearing information from the experts enabled participants to develop deeper understanding prior to decision-making. One Panel felt a strong obligation and responsibility to feed back the information to their community.
Suggestions for improvement
Participants provided suggestions on ways the Panel process could be improved:
The ‘yarning with the mob’ take home resource could be communicated better in plain language to be more relatable for and enable deeper interaction with communities, however, some questions with examples (such as Black Lives Matter) helped initiate conversations with families.
There was 1 week in between the ‘evidence day’ to the ‘deliberation day’ for the face-to-face panels’, in which participants felt was insufficient time to engage their families and communities.
More face-to-face interaction with experts as opposed to phone calls, and for more visual and interactive expert face-to-face and online presentations.
Online panels consisted of ‘evidence day’ and ‘deliberation day’ in the same week. Participants suggested that online panels could be scheduled to allow a week for participants to engage in community conversation about the issue.
All Community Panels stated the importance of having a diverse group of individuals representing communities
Given the fact we have a diverse group of people, from different walks of life, different levels of health education, histories and lived experience, everyone comes with a different perspective, and have been able to share their perspectives respectfully, and it then helps give us as individuals more insight and challenge our own ideas, and to look deeper to other ideas than what we would have to start with.
Although the research team made efforts to identify and recruit a diverse range of people, there was a gender imbalance which participants felt strongly should be addressed.