Developing Aboriginal and Torres Strait Islander cultural indicators: an overview from Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing

The Mayi Kuwayu team approached Aboriginal and Torres Strait Islander community organisations through the study’s governance group and provided information about the study, its goals, and its desire to conduct community-based focus groups. Aboriginal and Torres Strait Islander community organisations then self-nominated to facilitate or co-facilitate a focus group. Community organisations included health services and partner organisations of the study (e.g. Aboriginal and Torres Strait Islander community-controlled health, sporting, and land rights organisations, Aboriginal and Torres Strait Islander Research Centres, running groups, and neighbourhood centres). Participating community organisations were located nationally, across saltwater/freshwater/desert/Island groups, and in urban, regional, and remote areas, representing the high degree of diversity in cultural experiences. Their locations included areas where Aboriginal and Torres Strait Islander people were the minority or majority of the population, and had experienced varied impacts of colonisation, including forced removals (e.g. missions and Stolen Generations). The community organisations were compensated with AUD$5,000 for the time and resources they used to organise the focus groups. The Mayi Kuwayu team also hosted focus groups at two national conferences where there were large numbers of Aboriginal and Torres Strait Islander attendees. The study conducted 28 focus groups in total, reflecting the importance of ensuring that our questionnaire was able to capture the diversity of Aboriginal and Torres Strait Islander cultures and be applicable and meaningful across multiple contexts. We used an iterative process to determine key cultural domains and refine the questionnaire across the focus groups (see Results).

Focus groups at community organisations were led by an Aboriginal Mayi Kuwayu team member and co-facilitated by local staff or a community member when requested by the participants. Each focus group was between one and four hours in duration, depending on the level and type of engagement (e.g. some focus groups were longer when participants shared personal or cultural stories). Cultural protocols for focus group participation were considered and guided by the community organisation. For example, on occasion there needed to be gender-specific focus groups to adhere to cultural norms within these communities, including having facilitators whose gender matched with the participants who were present.

At the commencement of each focus group, facilitators acknowledged Country and Traditional Owners and then introduced themselves, including which cultural group/s they belonged to and their professional background. This practice was used to help participants feel more comfortable and confident talking with the Mayi Kuwayu team member who shared an Indigenous lived experience with them. The facilitators would then describe the purpose and aims of the focus group and explain the informed consent process. This included the confidentiality of the focus group and that the reporting of any work from the group would be de-identified to help facilitate open discussion.

After the consent forms were completed, the participants were asked if an audio recorder may be used for the session. If any participant did not consent to audio recording, the session was not recorded, and the facilitators took notes of the general themes. In addition to the focus groups being recorded (where consent was provided), other aids were sometimes used, such as butchers’ paper and whiteboards to write down key terms. Participants were also asked not to discuss any issues which may be sensitive and to identify any topics which should not be included in the research (e.g. women’s or men’s business). Anything deemed culturally inappropriate by the participants was not included in the researcher’s notes or audio recordings. If anything culturally inappropriate was breached during the discussion, then participants could approach the facilitator and have a conversation away from the group where it would not be recorded. All audio recordings were then professionally transcribed before being manually reviewed by the researchers to identify key cultural domains.

The focus groups were conducted as a free-flowing conversation with participants interacting with one another, and the facilitators occasionally guiding the group when necessary. All participants were encouraged to contribute to the discussion but were told that if they did not feel comfortable answering specific questions they did not have to contribute. Each focus group followed a similar structure and was divided into two parts: 1) discussing culture and its meaning for the participants, and 2) pre-testing the questionnaire.

The aim of the first part of the focus group was to understand what Aboriginal and/or Torres Strait Islander culture was for the participants. In the initial focus group sessions conducted in regional New South Wales (Groups 1–5) the facilitators asked numerous questions about different aspects of culture. First, they asked “Can you tell me about the important things that you think make up Aboriginal and Torres Strait Islander culture?”. When a participant provided a response, they were then asked follow-up questions such as: “Can you tell me a bit more about that (domain)? How do you learn about this (domain)? Where does it come from? Why is this important? Can you give me an example of why this (specific element: specific scenario or part of the broader domain) is important? How would you describe (specific element) to others?”. For subsequent sessions these were refined into two key questions used to lead the discussion:

Before ending the discussion, a final question was asked to ensure any other important information was not excluded: “Is there anything else that anyone feels we should have talked about but didn’t?”.

The aim of the second part of the focus group was to pre-test the questionnaire and was not audio recorded. Questionnaires were handed out to participants who provided consent to have their answers used for Mayi Kuwayu research analyses and publications. They were also given the option for data linkage in future studies. Paper versions of the questionnaire were self-completed by participants with facilitators available to answer any queries. The facilitators were also available to support completion of the questionnaire in an interview format when required or requested by participants. Participants were encouraged to provide feedback on the questionnaire as a whole and on specific items and themes. With each new focus group session, the questionnaire was developed and refined by the Mayi Kuwayu team to incorporate feedback and to reflect the key cultural domains brought up during the discussions.

Focus group sessions were conducted at two national conferences and followed a similar format to the community focus groups. These focus groups were organised as a session held during the conference and advertised as a research session that Aboriginal and/or Torres Strait Islander attendees could participate in to develop a questionnaire of culture and health. For these sessions several tables were set up in a meeting room, with information and consent forms placed in front of each seat, and butchers’ paper and pens positioned at the centre of the table. A PowerPoint presentation was set up at the front of the room, which the Mayi Kuwayu team used to deliver their introductions and information about the study to the audience. Each table had between four and 10 participants depending on the space available, with each table representing a separate focus group.

At the commencement of these sessions, an Aboriginal Mayi Kuwayu team member or conference facilitator acknowledged Country and Traditional Owners and then introduced themselves, including which cultural group/s they belonged to and their professional background. Information about Mayi Kuwayu, including the protocols for confidentiality and consent were discussed, and attendees were asked to complete a consent form if they agreed to participate. Non-Indigenous conference attendees were permitted to observe the focus groups with the permission of the Aboriginal and Torres Strait Islander attendees but did not participate in the discussions. Only the responses from Aboriginal and Torres Strait Islander participants were included for analysis by the Mayi Kuwayu researchers.

The Mayi Kuwayu team member leading the sessions asked the groups to discuss one key question amongst themselves: “What are the things that make up Aboriginal/Torres Strait Islander culture?” with 20–30 min allocated for this discussion. A scribe was elected within the group to record a summary of the group’s responses on butchers’ paper. At the completion of the exercise a representative from each group presented their main points to the rest of the room. The sessions were not audio recorded for practical reasons. The groups responses were then collected by the Mayi Kuwayu team and manually analysed to inform the development of the cultural domains. Following this exercise, the participants were invited to complete a draft of the questionnaire and told to request help from the facilitators if they had any queries. The main queries from these focus groups concerned clarifying the meaning of some items.

Twenty-eight focus groups were conducted by Mayi Kuwayu team members across Australia between 2015 and 2017, with a total of 197 participants. As shown in Table 1, the national conference focus groups accounted for 10 of the 28 focus groups (35.7%). In each of the 28 focus groups there were between three and 13 participants aged 16 years and over. The majority of the participants were middle-aged (35–55 years old) and lived in regional areas, and there was a general under-representation of younger people (aged 16–24 years old) and residents of urban areas compared to the national population distribution. A summary of the focus group locations and number of participants is shown in Table 1.

An iterative process was used by the Mayi Kuwayu team to refine the cultural domains and questionnaire item pool for each subsequent focus group session. The team met regularly to review focus group feedback and amend the questionnaire. The process overwhelmingly involved suggestions from the participants to amend the wording of items to improve comprehension by or relevance for the participants. Clarifying terms were particularly important for cultural terminology to optimise understanding across diverse Aboriginal and Torres Strait Islander groups. For example, feedback received from a focus group conducted in remote Queensland resulted in the questionnaire including “Where your Country/Island?” rather than “Where is your Country?”. Another example was the change from asking participants “What is your skin name?” and “What is your totem/dreaming?” to instead ask “Do you know your skin name(s)?” and “Do you know your totem(s)/dreaming?”. This was to ensure that cultural sensitivities were catered for, as some focus group participants explained that expressing skin and totemic names was sometimes not appropriate for secret/sacred reasons.

The Cultural knowledge and practice section of the questionnaire described below has been included in every draft used for the focus groups and incorporates a range of cultural items. The process used to refine it is representative of how other items were refined over time. Figure 1 shows how this section appeared in the initial focus groups. The phrasing of the first two lines in Fig. 1 addresses pervasive White Australian views of Indigenous authenticity, which can be internalised by people who feel like they are ‘not Aboriginal enough’ if they do not have traditional cultural knowledge or practices (for a critical discussion of this phenomenon, see [25]). The wording above counters this deficit discourse by emphasising a strengths-based message: ‘To be practicing culture, you don’t have to use traditional methods – culture changes over time, and it’s still cultural practice if you use modern technology’.

By focus groups 12 and 13 there were 21 cultural items in the Cultural knowledge and practice section (see Fig. 2), compared to the 12 items used previously. Most were added following focus group feedback to include the different ways people connect to Country. This exemplifies the inductive nature of our questionnaire development where some items became longer before they were later refined. Halfway through the focus group consultations, references to ‘Aboriginal’ were replaced with ‘Aboriginal/Torres Strait Islander’ as more Torres Strait Islander participants became involved. Changes were also made to the format of the Cultural knowledge and practice section to address experiences of cultural disconnection and cultural revival activities (Fig. 3).

After the focus group consultations had been conducted, expert evaluations were used to further refine the questionnaire content. The final version of the Cultural knowledge and practice section is shown in Fig. 4.

Table 2 provides other examples of how specific items in the questionnaire were developed for three of the six cultural domains discussed during the focus groups.