‘We should be in this…’: telling the story of the Missing Piece study

The Missing Piece Surveillance study was a school-based surveillance study documenting group A Streptococcus (Strep A) infection in children in two towns of the Kimberley region of Western Australia (Broome and Derby). The Kimberley experiences higher rates of the serious immune-mediated conditions acute rheumatic fever (ARF) and rheumatic heart disease (RHD), which can result from Strep A infection. The clinical epidemiological study aimed to document the prevalence and features of superficial Strep A infections, particularly impetigo (skin sores) and pharyngitis (sore throat) in children aged 5-15. Surveillance required several years of collaboration with participants, their families, their teachers and their schools to support primary data collection. Following the completion of surveillance, the research team aimed to find a way to share their findings with the communities they worked with, particularly with the children who has provided their time and biological samples. In this study, we describe the use and value of participatory action research methods to co-create two storybooks telling the stories of the Missing Piece study. Through consultation, focus groups and reflection, we explored how the design, content and use of storybooks could create meaning for participants. Resultingly, children's voices and preferences were incorporated into the communication tool, producing an outcome that reflected participatory action methodology and co-creation.

The Missing Piece study (2019–2022) was a school-based surveillance program of superficial group A Streptococcus (Strep A) infections in children living in the Kimberley region of Western Australia. The surveillance study was led by researchers at The Kids Research Institute Australia, which has a central office in Perth and regional offices (the Kulunga Aboriginal Unit) in Broome, that support community engagement research across the Kimberley. The Missing Piece study team examined schoolchildren from two schools in Broome and Derby (see Figure 1), for sore throats and skin sores, and collected photographs, skin and throat swabs and dried blood spots for further analysis from 2019 to 2022 (Barth et al., 2022; Pickering et al., 2025).

Strep A can cause skin and throat infections, which, if untreated, can lead to the development of Acute Rheumatic Fever (ARF) and RHD. RHD is estimated to affect more than 40 million people globally, with an estimated 319,000 deaths per year (Watkins et al., 2017). Notably, there is a disproportionate and overwhelming burden of Strep A infections in remote-living Aboriginal children in Australia, with the highest-reported incidence and mortality rates in the world being among Aboriginal and Torres Strait Islander peoples (AIHW, 2023).

In remote Australia, Strep A impetigo is common but throat infections are less commonly reported. There is a well-defined causal relationship between Strep A throat infections and ARF/RHD, however, there is less evidence associating Strep A impetigo and ARF/RHD (May et al., 2016). The Missing Piece Surveillance study aimed to find this ‘missing piece’ of evidence related to the perceived low prevalence of Strep A tonsillitis and gain a clearer understanding of how Strep A impetigo might contribute to the development of ARF/RHD in these communities (Barth et al., 2022).

In the spirit of partnership and in recognition of some of the issues associated with a lack of communication in medical research that need to be addressed in Australia (Matsumoto et al., 2023), one of the priorities for the Missing Piece study team was to share their findings, information about the surveillance study's results and health information about Strep A infections, ARF and RHD that was relevant to the communities they worked with, in the hope that continued engagement would sustain the relationship and support ongoing work.

Therefore, the purpose of this study was to create an artefact that would communicate the context and background of the Missing Piece study and the roles of the communities involved including Aboriginal communities (children and families) in Broome and Derby, the school communities and the medical research staff at the The Kids Research Institute Australia. The first quarter of the twenty-first century has seen profound changes to research paradigms. Where once researchers set the agenda and research processes were predominantly extractive, research is increasingly framed as a collaboration to which all participants, both researchers and those who might previously have been called 'subjects', bring their expertise and experience. Sharing results, information about studies' purposes, developments in the field and the outcomes of the research ‘respects the personhood [of participants] by informing them about the research enterprise as a whole’ (Miller et al., 2012, p50). This is particularly apparent in health-related research and clinical trials (Long et al., 2016; Parkin, 2004; Shalowitz and Miller, 2008). However, Miller et al. (2012) argue that sharing just the results may be insufficient; for contextualisation, it is important to communicate the whole research process.

As the Māori scholar Linda Tuhiwai Smith has noted, extractive methodologies particularly harm and exclude Indigenous communities (Smith, 2012), with unequal partnerships between researchers and the communities they work with (Matsumoto et al., 2023). In the context of health-related research, Indigenous Australians are a highly-researched group (Bainbridge et al., 2015). In addition to creating more Indigenous-led research, one area for improvement is to improve knowledge translation to increase the impact and practical benefits for Indigenous 'subject' communities, which means finding ways to overcome barriers to participation such as lack of communication, awareness and transparency (Luebbert and Perez, 2016; Tanner et al., 2015). Several scholars have drawn attention to the dominance of white, western perspectives in science communication and called for greater recognition of the diverse contexts in which science communication takes place (Finlay et al., 2021; Judd and McKinnon, 2021; Menezes et al., 2022). Rather than deficit-based approaches, ‘inclusive’ science communication (Canfield et al., 2020) acknowledges that communities are asset-rich, recognises historical (and current) inequities and oppressions and sees science communication as a cultural exchange, although there are few published studies (e.g., Marsh et al., 2023) to guide practitioners (and science communication educators) seeking more inclusive practice.

Stories are used by Indigenous peoples around the world as tools to pass on wisdom, knowledge and culture, share experiences and create connections between people (Fernández-Llamazares and Cabeza, 2018; Iseke, 2013; Sium and Ritskes, 2013). They are ways of witnessing, remembering histories and sources of strength through the sharing of spirituality and beliefs (Caxaj, 2015). For Indigenous communities in Australia, ‘yarning’ (Geia et al., 2013), the sharing of stories through speaking and listening, is especially important as a way of making meaning (Bessarab and Ng'Andu, 2010).

Fernández-Llamazares and Cabeza (2018) reported that Indigenous storytelling can be beneficial to conservation practice, by linking conservation actions to Indigenous beliefs, assisting the transfer of Indigenous knowledge and encouraging local involvement in conservation. Dahlstrom (2014) found storytelling a powerful way to foster engagement with science. ElShafie (2018) argues that stories help people to understand, process and remember science-related information, especially if that information has social relevance (Downs, 2014), while Joubert et al. (2019) show that stories can encourage people to act or to change their behaviour, especially if the characters, values or views in the story resonate with the context of the listeners' lives, experiences and values (Cormick, 2019).

The Missing Piece team wanted to understand the most effective way to share its work with participant communities and explain the context and background of the study and the roles of the different communities involved. In this study, the research participants, and hence the target audience, were children aged between five and fourteen years. The children belong to a range of ethnicities, with about 50%–60% being Aboriginal or Aboriginal and Torres Strait Islanders. Therefore, our guiding research question was: what is the most effective way to communicate information about the Missing Piece Surveillance Study to the communities involved?

Participatory action research

PAR is rooted in understanding the history, culture, context and social relationships of the communities involved, thus creating a more equal balance of power (Baum et al., 2006; Datta et al., 2015). Whatever the topic, it is generally agreed that a crucial element of well-conducted PAR lies in the creation of culturally appropriate processes and allowing the work to be guided by Indigenous voices and knowledge (Baum et al., 2006; Datta et al., 2015; Metcalfe et al., 2022; Peltier, 2018). It is particularly appropriate for research that draws on contextual and environmental knowledge and understanding, for example in agriculture (Putnam et al., 2014), conservation (Murley et al., 2022) and of course health (Caxaj, 2015; Hicks, 2018; Ziabakhsh et al., 2016). Through PAR, all the communities involved have a role in shaping the form of the artefact and its messages, reflecting Indigenous community values and foregrounding Indigenous knowledge and voices. Core steps in the full PAR cycle include working with communities to design research questions, choose methods, observe the impact of these methods and reflect on what has worked.

As Matsumoto et al. (2023) note, Indigenous communities are more often the subjects of research than collaborators; research is more often ‘on’ than ‘with’ them. The Missing Piece Surveillance study aimed to embed methodologies of inclusion and engagement but did not employ PAR from the beginning of the study in 2019. Our intention in the present study was to create a communication piece that would explicitly recognise the contribution of all the communities in the study. To do this, we worked with the communities involved (the Missing Piece team and the schoolchildren in Broome and Derby) to co-design the communication piece, using principles of the Participatory Action Research (PAR) research model, that prioritises collaboration and co-design through a cyclic, iterative process (see Figure 2) of planning, executing, observing and reflecting (Baum et al., 2006). As the communications piece was investigator-initiated, the children provided feedback on pre-designed content as a way to engage Missing Piece study participants in dissemination of science rather than full PAR. Other community members (including parents, caregivers and teachers) were invited to provide feedback on the communication tool throughout its development but did not have practical capacity to participate in the primary development.

Positionality

It is important that those undertaking collaborative research with historically-oppressed communities examine the relationship between identity, privilege and responsibility in relation to knowledge production (Jazeel and McFarlane, 2010; Raghuram et al., 2009). Therefore, we wish to recognise that we (the authors) all identify as female and are from a mix of backgrounds: Sri Lankan Australian (KF), white British (AG), white Australian (HB, JP, AB), Indigenous Australian (RF) and Peranakan Singaporean (BW). The wider Missing Piece Surveillance Study team includes members who identify as Indigenous Australians, among other ethnicities. This manuscripts research team arose from a collaboration between The Missing Piece Study research investigators and staff (AB, JP, RF, BW) and qualitative researches at the University of Western Australia (KF, AG, HB).

Ethical review

Approval to work with the participants of the Missing Piece Surveillance Study was granted through the Western Australian Aboriginal Health Ethics Committee (WAAHEC) (Reference number: HREC892), the Kimberley Aboriginal Health Planning Forum (Ref 2018:016) and the WA Catholic Education Office.

Research phases

We conducted our research in three phases: pre-design consultation, design and evaluation.

Phase I – pre-design consultation

Semi-structured interviews allow participants to explore their beliefs, thoughts, experiences and feelings (DeJonckheere and Vaughn, 2019) and provide direct access to their insights, experiences and opinions (Tong et al., 2007). We conducted this through semi-structured interviews with researchers in the Missing Piece (MP) Surveillance Study team and members of the communications teams at The Kids Research Institute Australia. The Missing Piece and communications team had extensively explored a range of communication approaches, including videos, music videos and children's books.

KF conducted four semi-structured interviews (three in person and one online), each lasting approximately 30 min. These interviews explored possible media and messages for the artefact from the perspective of the research teams. The interviews were recorded using Voice Memos (iPhone application) and transcribed using MS Word. KF edited the transcripts to intelligent verbatim level, to remove words and utterances that added no meaning to the text (McMullin, 2023).

Phase I analysis of pre-design consultation interviews

KF analysed the interview data through thematic inductive analysis (Braun and Clarke, 2021). The codebook is available in Supplementary Materials. Thematic inductive analysis allows themes to emerge through analysis rather than be devised beforehand. As analysis proceeds, concepts emerge and as each new set of data is added, it is compared with previously-analysed work. Two researchers (AG and HB) reviewed the coding to ensure the themes were clear and the coding consistent. At the completion of this phase, two draft storybooks were produced for focus groups with child participants. One book detailed rheumatic heart disease and the Missing Piece Study, and the second detailed the research journey to explain how the samples are collected, handled, transported and evaluated.

Phase II - evaluation

KF facilitated four focus groups to evaluate the two draft storybooks. The first was held online with the Missing Piece team, who reviewed the digital drafts of the two storybooks. Following this, we made some small changes to the books. KF then held three focus groups in person in Broome (March 2023) with schoolchildren who had participated in the Missing Piece study (2019–2022). Prior to the qualitative process, students recognised Missing Piece researchers as locally living or fly-in/fly-out team members who frequently attended schools for data collection (2019–2022). For the communication development (occurring early 2023), a single qualitative researcher (KF) was the only new face to children in Broome and was introduced on the day of the focus groups by researchers who children recognised and associated with infection screening activities.

We planned that KF would also facilitate focus groups at a school in Derby with participants in the Missing Piece study there but unfortunately, at that time the community was inaccessible, as roads had been washed away in heavy flooding. Instead, RF and BW facilitated a focus group in Derby a few months later, using the same focus group guide (see Supplementary Materials).

Focus groups allowed us to conduct evaluations with multiple students in a timely way and enabled students to discuss ideas with each other and the facilitator. Focus groups with children can capture their perspectives, original ideas and insights, and help in understanding the children's experiences (Adler et al., 2019). Additionally, the nature of group interaction encourages participants to explore and explain individual and shared viewpoints (Tong et al., 2007).

Written informed consent for the children to participate in the focus groups was obtained from the parent/caregiver of each student.

The three Broome focus groups comprised 11 students between six and twelve years old, organised into groups of similar ages. Two lasted approximately 30 min and one approximately 45 min. The Derby focus group comprised six students aged from six to twelve and lasted 60 min. This group was led by RF, a team member with teaching experience, who was able to manage discussions effectively amongst students of different age groups. Every participating student was given a sticker as a token of thanks and appreciation. The focus groups were held in the children's schools, a space that was familiar and comfortable. The facilitators gave each student a printed copy of both books, encouraging them to draw and write on the books as an additional way of sharing their thoughts. They read the books as a group, stopping after each page to discuss their thoughts. KF and RF recorded each focus group using the Voice Memos application on an iPhone and a backup voice recorder. KF transcribed the recordings using MS Word and edited them to intelligent verbatim level. KF analysed the focus group data through thematic inductive analysis (Braun and Clarke, 2021). The codebook is available in Supplementary Materials. Two researchers (AG and HB) reviewed the coding to ensure the themes were clear and the coding consistent.

Phase I results

From the conversations during Phase I, three major themes emerged relating to how to design an effective communication piece and what to include: media and format, key messages and story structure and style choices.

Media and format

Interviewees wanted the communication piece to be relevant and reflect Indigenous ways of communicating. They offered a range of suggestions, including using music or creating a potential hybridisation of digital and print media but ultimately, everyone suggested either a video or a storybook.

Music is an important part of storytelling in Indigenous communities and could help to tell parts of the Missing Piece story:

Culturally storytelling through channels like art and music and written or spoken word are quite powerful (Researcher1)

Music can really help to set the tone and the mood of the video (Comms1)

Some interviewees thought using a combination of print and digital media could involve community members as narrators or translators into Kimberley Kriol (understood by communities across the Kimberley):

A low-tech inexpensive kind of ‘digital version’, where what you would see on the screen would just be the pages of the book with a voiceover and trying to get that voiceover to be a point of interest, whether that be a local community or an elder who people really know and respect (Researcher1)

Have someone speaking in Kriol as well as English (Researcher2)

Interviewees thought a video would be a good option because it would support the involvement of the community, both in the production process and the video:

Maybe some footage of the kids who are part of the trial… to recognise how important that contribution has been (Researcher3)

Video where you're actually filming people (Comms1)

Video was seen as something that would keep the audience engaged and using graphics and animation to accompany the story meant the piece could present scientific concepts in an easily understood way:

Not so much animation but just kind of simple graphics that might come up on the screen or you overlay over the top (Comms1)

However, cost and budgeting were acknowledged as obstacles. Video production can be expensive; a major concern was potential costs of reshooting content after community feedback:

Video is very expensive and if you have a rough cut and then they, the community members, come back to you and go, ‘Oh, we think you should include this instead’, you may not have budget to be able to go back and reshoot it (Comms1)

Moreover, a video might be watched only a handful of times, making it poor value for money. We also had to consider issues of access: Internet access is known to be low among the community in Derby.

The other option was to create a storybook. A storybook can convey messages and a story in a similar way to a video at much lower cost. A storybook is also a physical object and something children could take home from school to share with their families and use readily and repeatedly:

[a book] probably has more longevity… A video… they might see it, watch it once in the school or scan it once and watch it kind of thing. But a physical thing that they can actually take home with them, that they can then have as something in the family … (Comms1)

I think the book is a great idea for people to bring home (Researcher4)

To summarise, a storybook was clearly an engaging and relevant artefact that, while avoiding high production costs, would create a tangible resource for the community.

Key messages and story structure

Interviewees had widely-ranging views on what key messages the artefact should cover. Some wanted to tell the ‘research story’:

Try not to overwhelm them. But the key message I would say goes back to, why are we doing this study? Like why? What is Missing Piece? Why look at sore throats and why look at skin sores? I think it has to be very clear (Researcher4)

A delineation between what happens to those pieces or what information comes from those types of samples (Researcher1)

Others suggested that health information messages were an important part of the story that would give context and background:

I think it's really about the bigger picture of the story about why sore throats and skin sores are important to be checked and… once we detect them and we give proper treatment to the kids and they're being detected, it will actually prevent the disease progression. It will actually prevent Acute Rheumatic Fever and Rheumatic Heart Disease… (Researcher4)

Give some background on Strep A and then build up to RHD and complications that can arise (Researcher2)

A third group of suggestions related to acknowledging the communities' contributions to the study. Without them, the Missing Piece study would have been impossible; therefore, showing gratitude and acknowledgement was important:

We probably don't acknowledge or harp on enough about how important each single contribution [samples] can be to this bigger picture… (Researcher4)

Other discussion related to structure and where the story should start and end. Some thought it should show the whole process, from the inception of the Missing Piece study to the samples’ journey:

It should really start from the pilot study (Researcher)

Showing the sample process from start to finish (Researcher)

Offering them a bit of a story around what gets taken from me, where does it go? What happens to it? What do people do? (Researcher)

Some wanted the artefact to reinforce the continuing work with the communities in Broome and Derby and the future of the Missing Piece study:

It could potentially be a bit of a missed opportunity not to also use it to talk about what's going to happen next… Step through what that might look like (Researcher1)

In summary, interviewees had different views on what the most important key messages were and what could most effectively be conveyed through storytelling. However, most acknowledged that including too many messages in one piece could risk losing important messages in a mass of information.

Style choices

Interviewees discussed the tone of voice, language and vocabulary and storytelling style of the artefact. One interviewee noted that the culture of the Indigenous community in Broome includes a reluctance to engage with material that discusses sickness as opposed to wellness. Another mentioned that the communities value genuine and informal ways of communicating:

Flashiness… it's not good… when people say ‘communication’, instantly our minds, because of where we are and the place that we live in, our minds go to the flashy marketing PR sort of stuff, but in a community it's really about being authentic and genuine and honest and open (Researcher2)

Given that the primary target audience was children, interviewees noted the need for clear language and the use of examples:

Analogy is a really good tool for the kind of scientific concept stuff… Boiling that down to an example that people can relate to. (Researcher2)

Plain language and clear messaging… Make it easy for kids to distinguish between scientific concepts… they can have difficulty understanding semantics like a sore versus an itchy throat. (Researcher3)

Some interviewees thought that using a character to guide the story could be beneficial for children but that:

You'd want to make sure that it's an animal that's from the region and something that the community members will recognise and feel that it's part of them and their community (Comms1)

Others thought that using material that was recognisable and personal to the audience was a way of ensuring that the audience could connect with and ‘own’ the artefact. Suggestions included using people's photos, words, voice and art:

People really love seeing their own people in things. (Comms1)

Places and faces that people can relate to would be really powerful [..] A real sense of ownership over that resource because there's these connections and ties. (Researcher2)

In conclusion, interviewees felt that the style choices were vital to creating an artefact that would resonate with the intended audience. Language, tone of voice and the use of culturally-relevant material were seen as paramount to creating a successful and effective artefact.

Phase 1: reflection

The pre-design consultation suggested two potential pathways: a video or a storybook. While a video would have been very appealing, our limited budget was a constraint, especially if feedback showed a need for extensive re-shooting. In contrast, a storybook offered an affordable and accessible way to create a tangible, physical resource that could be used at home and at school. Moreover, a storybook would reflect the local importance of the oral tradition.

There were many opinions about what messages the book could or should convey. Having too many messages in one book would not only have made designing a good story difficult but would also have diminished the effectiveness of the book as a communication tool (Cole et al., 1997). Therefore, we decided to create two storybooks: one about RHD and the Missing Piece study (http://tinyurl.com/k6x6r87u) and another about the research journey (http://tinyurl.com/yckp4fa6), thereby ensuring each book had a clear story and clear key messages.

KF designed the books using Canva TM (http://canva.com), with input and support from AG, HB, JP and AB. All the fonts and most illustrations were sourced from Canva; other illustrations were royalty-free AdobeStock photos.

Phase II results

Two major themes emerged from the analysis: creating meaning and design.

Creating meaning

Readers created meaning through their interpretations of the words and imagery in the books. Some elements induced an emotional reaction in the readers. How words, especially words related to scientific concepts and health messages, were used in the books was a key debate among the Missing Piece researchers. Some felt it was important to use words that describe Strep A infection symptoms accurately, such as what a skin sore or impetigo looks like:

I don't know if I've ever described impetigo as especially purple spots. I think you might get a bit of recoil on that one [..] I don't know if I’d describe them as a rash, either… there's a lot of things that look like a rash (Researcher4)

These were often related to feelings of being scared, usually in relation to graphics such as a cartoon depiction of a Strep A bacterium, a cartoon of an injured heart or the illustration in which someone did not look obviously happy:

Student5: I don't like this doctor's face and it looks like she's an evil scientist that's angry right now. (BroomeFG2)

Ensuring that the symptoms were described accurately yet in ways that the children could understand created a point of tension between the research team's feedback and the children's feedback. Nevertheless, it was important to use words the children were familiar with, e.g., ‘temperature’ not ‘fever’, 'sore elbows, wrists and ankles' not 'sore joints' or 'sticky yellow stuff' not ‘pus’. This was particularly important for the youngest children, as these conversations show:

Facilitator: And do we know what ’sore joints' are?

Student6: No. (BroomeFG1)

Facilitator: What do you think it means by ‘your skin can get really hot’ what's that trying to say?

Student4: Like your skin can start burning? (DerbyFG)

Using words that reflected the children's understanding of certain words made it easier for them to grasp concepts. For example, in the first draft of the books, we referred to Strep A as a ‘cheeky’ bug. However, some students said that for them, ‘cheeky’ did not necessarily mean bad but rather ‘mischievous’. They suggested a different wording:

Student7: Strep A is a ‘naughty’ bug that can cause sore throats and skin sores… that makes more sense (BroomeFG2)

A similar balance had to be maintained when using illustrations, especially scientifically-accurate graphics that might not necessarily mean anything to the children. For example, Strep A forms in clumps known as cocci chains. However, a young child is not likely to know that:

I mean you've used those little clumps to be Strep A… yes, they form cocci in chains, but that may not mean anything for [the children]. (Researcher1)

Instead, we used a cartoon depiction of a Strep A bacterium throughout the books to keep depictions of Strep A consistent and hopefully to create a recognisable personification for the children. However, none of the children commented on the Strep A graphic. All the children agreed that some graphics needed clearer depictions, especially images of objects they were familiar with, such as the graphic of an Esky (a portable cooler). The Broome children did not recognise the small lidless Esky in our drawing; the Eskies they are familiar with are large, with lids; the community uses them to hold big fish caught while fishing. The Derby children said it looked more like a rubbish bin:

Facilitator: What do you think they're [the samples] in to protect them? What does that look like?

Student1: Sort of looks like a bin (DerbyFG)

Facilitator: Would you call that a little foam Esky? Does it look like that?

Student2: Not really (DerbyFG)

The children also thought the drawings needed to reflect the function of some objects more clearly. The Derby students thought the freezer looked more like a shelf, while the Broome students thought an Esky, a refrigerated truck and a freezer used for sample storage needed to look colder. We used a snowflake to indicate that these objects were cold, but the focus groups thought it needed to be clearer, either by writing words such as ‘Esky’ and ‘cold’ on the object or by showing it to be cold:

Maybe put an ice block and really cold air coming out because that would make more sense (BroomeFG2)

In summary, to create meaning, follow the story and understand its concepts, the readers needed to see words and graphics that they could easily understand and consistently interpret.

Design elements

The focus groups gave a lot of feedback on the design elements. These can be grouped into three themes: general comments, realistic and unrealistic graphics, and seeing themselves. Older students suggested changes that would make the illustrations easier to understand and interpret for younger readers. General comments on the design choices further reinforced the preferences for illustrations that depict real-life scenarios and objects, to help readers link the text to the graphics:

For example, when the children were looking at a drawing of a child with a doctor:

Facilitator: Is that how you imagine going to the doctor?

Student1: No, no, (BroomeFG2)

Student2: I've never been to the doctor by myself. (BroomeFG2)

Looking at another illustration, showing a blood sample being taken, students reflected that the illustration did not reflect their experience of giving blood samples during the Missing Piece study. In the study, blood had been collected from a finger prick and stamped onto a card:

[this picture] is just like a little blood circle, not like a splat (BroomeFG2)

Similarly, discussing an illustration of a child having their temperature checked, students wanted it to show the process they were familiar with, where the thermometer is placed in their mouths, rather than in their armpit, as it was in the illustration.

There was disagreement about whether elements of the graphics should be representative or anatomically correct. Some students were happy with our cartoon depiction of a ‘love heart’ with a sad face and sticking-plaster as a way of showing a heart that was sick due to RHD. However, some students thought it was better to have a cracked but anatomically correct heart to show this concept, as it is a person's actual heart that is damaged:

Student1: That is not what a heart looks like… Not a real heart (BroomeFG3)

Student2: What I don't like about the heart is that it has a Band-Aid. It should have a crack (BroomeFG2)

As anticipated, many of the students liked seeing themselves or people they knew in the books. Both the Broome and Derby students remembered or recognised people in photographs who had visited them as part of the Missing Piece study. Two of the student groups were enthusiastic about the inclusion of photos of themselves and the Missing Piece team. They also felt it was only fair that they should be in the books as they were part of the project:

Student3: How about us? Yeah, we should be in this ‘cause you guys are. We should be in this… (BroomeFG2)

The children also wanted to include photos, maps or graphics showing elements of their community. The Derby students suggested including pictures of Boab trees, which are common there, and adding their school badge to the illustration of a classroom. One Broome group thought their names should be included, as a way of acknowledging their drawings and other contributions:

Student4: You're gonna have to change the whole book, like saying the illustrator's name, which is us. (BroomeFG2)

To conclude, the design elements offered a way for readers to understand the story beyond the words. Graphics that both related to the information and created an emotional connection for the readers were most impactful and supported the readers' understanding.

Storybooks as a tool to facilitate understanding

Focus groups enabled time to stop discussion to check-in with children on their understanding of the content. Children mostly gave verbal and body cues (nods, and ‘yes’) to direct questions about their understanding, but also provided confirming statements:

Student4: “the sample of our blood helps scientists know how much that they there is” (BroomeFG2)

Student5:"Little kids could understand this.” (BroomeFG3)

Facilitator: Do you know that that's what happened to your samples? That they went to Perth on big trucks and a plane? Did these (books) make that clearer for you now?

Student1: Yes…. I didn't know. But I know those trucks. How long do the samples last in the freezer?

Through direct and indirect statements and cues from children in Broome and Derby, it was clear that the visuals and text of the books supported their knowledge of the practical aspects of the study. There was an absence of specific tatements supporting the understanding of Strep A infections as precursors to RHD.

We used PAR to engage with the Missing Piece study's research community to identify the ‘best way’ to communicate findings and information about the study, and to have a practical impact, something that is needed more in the Indigenous health research space (Matsumoto et al., 2023). There was some evidence that the books were effective in helping the children understand the scientific facts surrounding Strep A and RHD. This was evident in children's discussions around the Strep A bacterium being a ‘naughty bug’ that causes infections and can make them sick and their discussion relating to how to depict the damage caused by RHD to a person's heart. However, there was less evidence children understood difficult biological concepts, particularly how Strep A infection and is connected to the development of heart disease. This limitation is important when considering the effectiveness of the books as science communication tool. Stories can strengthen social bonds in a community (Coen, 2019). This was reflected n the children's eagerness to identify and name people in the photographs and to be included as co-creators of the books. Creating a personal connection with the audience was an important aspect for this community. Seeing themselves, and people, places and things they recognised enabled children to connect with the books and develop a sense of ownership over the books and their contributions to the Missing Piece study. These findings also support the importance of creating stories that resonate with people's experiences and lives when seeking to develop impactful communication (Cormick, 2019; Joubert et al., 2019).

The data also resonate with how Indigenous approaches to communicating knowledge through stories (Iseke, 2013). The books used students' experiences to tell the Missing Piece research story while sharing knowledge from the research team with the community. This exchange was evident when students identified ways their own experiences should be reflected in the books, such as an accurate depiction of an Esky or the presence of a parent at a doctor's visit. The PAR enabled community members to beyond being the subjects of research to become actively involved in the research process. Data from Phases I and II showed the desire for community members to voice their thoughts on the best way to communicate the research messages. This aligns with the principles of PAR, which emphasise undersntaing the local and cultural context of communities involved (Baum et al., 2006). Interviews with Missing Piece team members, particularly Indigenous team members from Broome, highlighted the importance ofthis context, particularly material focused on sickness as opposed to wellness. Ensuring that the students felt comfortable to discuss the books during the focus groups was also important. There is a growing body of literature on PAR with Indigenous communities in the context of co-creation and health research (e.g., Caxaj, 2015; Hicks, 2018 McRae, et al., 2023a;, 2023b; Ziabakhsh et al., 2016). In this study, culturally sensitive research led by Indigenous and community voices and knowledge was strengthened through the involvement of professional services staff with communications expertise and members of the Kulunga team in Broome, who contributed local Indigenous and community priorities. This highlights the value of consultation in developing research communication tools.

Although parents, teachers and other school community members were invited to participate, they did not contribute to the primary development of the storybook communication tool. Parents later contributed as research buddies, and their insights were valuable in refining the published editions. The inclusion of their voices was particularly important because the communication tool was designed to serve education and information of familes families at home or in classroom settings.

Audience-centred communication is considered a threshold concept in science communication (Lewenstein and Baram-Tsabari, 2022), This requires science communicators to consider the cultural and historical contexts that shape audience responses and recognise audiences as active participants in communication, rather than passive recipients of information. Our study highlights the importance of working with children, who can often be research subjects but may be excluded from mainstream science communication, to ensure that communication tools serve their needs. Viewing research communities as asset-rich, rather than having a deficit of knowledge, was fundamental to our approach. Although the children in the Missing Piece study may not have extensive knowledge of Strep A microbiology, they provided valuable insight into how the research could be communicated within their community. Future projects should include children, parents and teachers in project conception, story development, design and dissemination.

This research is an example of how PAR can be implemented with research participants, specifically an Indigenous community, to co-create research communication products. We demonstrate that PAR can be used as a framework for making science communication more inclusive, by viewing research(ed) communities as possessing knowledge that is important for research translation/communication. Our project highlights Indigenous ways of communicating and sharing knowledge and prioritises the inclusion of Indigenous-led research, through the involvement of an Indigenous Australian author and centred on the voices and experiences of Indigenous children, something that is lacking in Australian and global health research. This project also demonstrates the importance of collaboration; not only between researchers and research(ed) communities but also across social science and science disciplines and suggests a role for science communicators in facilitating co-creation and co-design of inclusive research communication products with health researchers and their communities.