166  | © 2021 Australian Health Promotion Association wileyonlinelibrary.com/journal/hpja Health Promot J Austral. 2021;32(S1):166–178.
Received: 1 April 2020  |  Accepted: 7 August 2020
DOI: 10.1002/hpja.405
S P E C I A L I S S U E A R T I C L E
Finding a pathway and making it strong: Learning from Yolŋu
about meaningful health education in a remote Indigenous
Australian context
Anne Lowell1  | Elaine Läwurrpa Maypilama1  | Rosemary Gundjarranbuy2
1Northern Institute, Charles Darwin
University, Darwin, Australia
2Yalu Marŋgithinyaraw Indigenous
Coporation, Galiwin’ku, Australia
Correspondence
Anne Lowell, Northern Institute, Charles
Darwin University, Darwin, Australia.
Email: [email protected]
Funding information
The “Sharing the full and true stories about
chronic conditions” Project was funded by
the Australian Government Department
of Health and Ageing’s Local Community
Campaigns for Promoting Aboriginal and
Torres Strait Islander Health.
Editor: James Smith
Abstract
Issue addressed: Access to meaningful health information is limited in remote regions
of Australia where Indigenous languages and culture are strong but the prevalence of
chronic conditions is extremely high. This qualitative study aimed to support and understand the evolution of an educational approach to improve communication about
chronic conditions for Yolŋu (Aboriginal people of Northeast Arnhem Land).
Methods: Within a culturally responsive research design, data were gathered through
participant observation and semi-structured interviews with educators and community members. An iterative and continuous process of data collection and inductive
analysis, exploring key elements of the process as it evolved, supported the Project
Team to modify and refine their approach as the project progressed.
Results: A high level of community participation and control was a critical element
of the project. Collaboration between Yolŋu educators and community experts, with
culturally competent support from others, enabled Yolŋu to share health information
in ways that could not be achieved by outsiders. Yolŋu and biomedical knowledges
were integrated to build and share meaningful, in-depth (not simplified or directive)
oral explanations in local languages using culturally responsive communication processes. The urgent need for ongoing, sufficient and meaningful health education was
a consistent and recurring theme in this context where chronic conditions are having
a devastating impact.
Conclusion: Sustained and equitable access to meaningful information, using a culturally responsive approach led by community educators, is crucial to improve health
literacy and to enable genuinely informed decisions in prevention and management
of chronic conditions. Long-term funding is needed to support ongoing programs.
These findings may have relevance for others who do not share the culture and language of the majority population.
So what?: Equity of access to meaningful health information through sustained support for community-led education processes is essential to improve First Nations
health outcomes.
K E Y W O R D S
chronic disease, health education, health equity, health literacy, Indigenous health
LOWELL Et aL.    |  167
1 | INTRODUC TION
In the Northern Territory of Australia, more than 25% of the population of 228,000 are Indigenous (Aboriginal or Torres Strait Islander).1
Traditional cultures and languages remain strong in many regions but
the health impact of rapid change due to colonisation has been devastating. Serious disparities in health outcomes and life expectancy
between Indigenous and non-Indigenous Australians persist despite
the slow improvement on some measures.2 Preventable chronic
conditions, including hypertension, diabetes, ischaemic heart disease, renal disease and chronic obstructive pulmonary disease, are
markedly higher in remote Aboriginal communities in the Northern
Territory (NT): the prevalence rates for hypertension and renal
disease, for example, are above 50% at ages 50 and over.3 The NT
Department of Health recognises that “never before has there been a
greater need to empower individuals and the community through an understanding of what causes ill health and what can prevent it”.4 However,
achieving equity of access to meaningful health information is a challenge in remote areas where more than 70% of Indigenous people
speak a language other than English at home.5 Cultural and linguistic
diversity and the high burden of chronic conditions in the NT have
particular implications for health literacy6 which is increasingly recognised as an important influence on the safety and quality of health
care and as a determinant of health [eg,7]. Rather than simply a set
of functional capabilities, such as the ability to read health-related
information, health literacy is a means to enabling individuals to
exert greater control over their health and the range of personal,
social and environmental determinants of health.8 Many definitions
of health literacy assume Western socio-cultural contexts9 yet the
need to consider health literacy within the context of language and
culture is clearly essential [eg,6,10]. The health literacy of providers,
both individuals and organisations, as well as consumers is also increasingly recognised as important [eg,7,11,12]. For a health service
provider to be “health literate”, ie, “to present information in ways that
improve understanding and ability of people to act on the information”11
cultural and linguistic competence is also necessary. This is a particular challenge in the NT where health service providers often do
not share the cultural and language background of Aboriginal consumers. The need for culturally and linguistically responsive health
services is reflected in policy but not always in practice. For example,
The Northern Territory Health Cultural Security Policy 2016-2026
includes communication as a key domain, “encompassing access to
interpreters; health information that is accessible for diverse audiences;
respect for the rights, views and decisions of Aboriginal people; and supporting enhanced health literacy for consumers and clinicians”13 p.27].
Although the right of Aboriginal people to access services and information in their own languages is acknowledged in policy13,14 the
use of interpreters in practice remains seriously underutilised15 and
access to health information in Aboriginal languages is limited.6,16
Culturally responsive support to promote health literacy is
clearly crucial but evidence regarding the efficacy of the various approaches to health promotion and health communication
for Indigenous Australians is sparse.17 There is a need for further
research exploring approaches to health education that incorporate local languages and worldview.6,17,18 Yolŋu, Aboriginal people
of North East Arnhem Land, have stated repeatedly that they want
access to the “full story,” ie, detailed explanations, they believe is
essential to make informed decisions in managing their health.
However, previous research has demonstrated that such access
is rarely achieved.16,19-21 This study is a response to the need for
greater understanding of Indigenous perspectives regarding effective approaches to health education that can inform future activities
and funding priorities. In this paper, we explore the process of development and implementation of an Indigenous approach to sharing
information about chronic conditions (the “Sharing the full and true
stories about chronic conditions” Project) from the perspectives of
both educators and community members. We also share a Yolŋu representation of effective health education in this context (Figure 1)
and identify the core elements of the approach to health education
developed by Yolŋu educators (Table 1) that can also be assessed for
relevance to other cultural and language groups.
2 | METHODS
This qualitative study aimed to support and understand the process of development and implementation of an approach to sharing
information about chronic conditions in an Indigenous community
context. The research design was informed by extensive previous
work in this context,16,22 ensuring congruence with Yolŋu cultural
and communication protocols. This locally developed Indigenous
methodology shared features of developmental evaluation which
is suited to innovations in conditions of complexity and in which
evaluators are an integral part of the project team, supporting
continual reflection and feedback of emerging findings to inform
project development.23 Although data collection and analysis
methods were primarily influenced by previous collaborative research with Yolŋu (see below) these were further developed
through consideration of congruent elements of Constructivist
Grounded Theory.24 The co-construction of emerging theory for
further development,24 through collaboration between researchers and participants, was also appropriate to this exploratory study
of a process about which there has been little previous research
(see Figure 1, Table 1).
2.1 | Setting
The largest community in the region where this study was conducted is located on an island 550 km from the nearest city. It was
originally established by Methodist missionaries in 1942 and 94%
of the population of approximately 2200 are Yolŋu.1 Many Yolŋu,
from eight different clan groups, eventually moved to the main
community where Yolŋu systems of social organisation, cultural
knowledge and practice remain strong. Most Yolŋu maintain strong
cultural and spiritual connections with their traditional lands; these
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168  |     LOWELL Et aL.
connections are considered an important influence on physical and
mental health and traditional foods collected through hunting and
gathering remain highly valued. Some Yolŋu continue to live in remote smaller “Homeland” communities in the surrounding region in
extended family groups, although there is considerable movement
between the larger community and Homelands. Almost all residents
speak an Aboriginal language at home and proficiency in English is
highly variable across all age groups. Although one clan language,
Djambarrpuyŋu, is now dominant numerous clan languages and dialects are still in active use and most Yolŋu are multilingual. In this
primarily oral culture, literacy in any language is often limited and
English is used only in interactions with Balanda, for example, staff
at the school or the health centre.
2.2 | The project
The “Sharing the Full and True Stories about Chronic Conditions”
Project was funded by the Department of Health and Ageing and
conducted over three years. by the Yalu Marŋgithinyaraw, a community-controlled research and education centre staffed by local
community members, in partnership with Charles Darwin University
(CDU). The Project Team included a Yolŋu project co-ordinator and
educators employed through Yalu as well as two researchers from
CDU: a highly experienced Yolŋu researcher and a non-Aboriginal
researcher who has worked with Yolŋu for many years. The project
was initiated, developed and implemented by Yolŋu in response to
F I G U R E 1   A Yolŋu representation of
effective health education [Colour figure
can be viewed at wileyonlinelibrary.com]
TA B L E 1   Core elements of a Yolŋu approach to sharing health information
Project structure
• High level of community control: community educators planning, developing, implementing and evaluating activities and resources
• Ongoing, sufficient support and time for community educators to access the knowledge they need from the biomedical domain – from health
staff competent in intercultural collaboration
Educational approach: sharing ‘the full and true stories’ about chronic conditions
• Community educators leading the process of integrating biomedical and cultural knowledge in a way that is meaningful
• Community educators sharing information in local languages using culturally responsive communication processes
• Detailed explanations (not key messages), respecting and responding to differences in conceptual and cultural knowledge, to enable informed
decisions
• An interactive and explanatory, rather than a didactic and directive, approach
• Engaging local community experts in sharing cultural knowledge and practice related to health and personal experience of chronic conditions
through peer education
• Visual support for oral explanations responsive to local cultural and conceptual knowledge
• Conducting education in a time and place that suits community members (eg at home in family groups, at ceremonies, in the evening)
• Ongoing access to health information allowing repetition and reinforcement:
• local community educators retaining and continuing to share new knowledge in the community
• local production of video resources shared through locally relevant mechanisms (eg YouTube, website, USB drives);
• sufficient funding and support for sustainable programs to support ongoing education
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LOWELL Et aL.    |  169
their priorities which were identified through previous collaborative work, generating a high level of Yolŋu control and engagement
that was maintained throughout the project. Previous research16 in
this region identified key requirements for ensuring effective communication related to chronic conditions as access to detailed explanations in local languages; clear illustrations to support the oral
explanations; competent Balanda (non-Yolŋu) and Yolŋu working together to ensure the credibility and accuracy of the information; and
a process of information sharing responsive to Yolŋu needs. The development of the Project was informed by these findings and further
refined through an iterative process of trial, evaluation and modification. The Project aimed to develop a culturally responsive approach
to health education which could: revive positive Yolŋu knowledge
and practices related to health; improve access to Western health
information, particularly related to the prevention and management
of chronic conditions and facilitate more informed decision-making
related to risk factors and lifestyle changes.
Project activities included: collaborative workshops with Balanda
health staff and educators to support the development of the project team’s knowledge from the biomedical domain, working with cultural experts to integrate Yolŋu health-related knowledge; education
sessions in workplaces, with school students and as part of other
health promotion and training activities; and small group education
sessions with family groups at their homes or at ceremonies and in
other nearby communities. Opportunistic education also occurred
through many informal interactions with community members at
home, out hunting and at other times when an opportunity arose.
Extended workshops (3-7 days) were also conducted in small remote
Homeland communities focusing on putting ideas about promoting
health into action. Yolŋu with chronic conditions travelled with the
Project Team to homelands and joined with local residents in a range
of activities involving exercise (walking and going hunting), healthy
eating (both traditional and Western foods) and education sessions,
including peer education between Yolŋu with chronic conditions.
Production of video resources by Yolŋu team members in local languages that can be widely distributed at low cost was an important
part of the project to enable repeated and sustained access to information. These videos become a central component of all education
sessions and were also made available on DVD, USB drives, the project website (http://yalu.cdu.edu.au/healthResources/index.html)
and YouTube.
2.3 | Participants
Educators and other community members involved in the “Sharing
the full and true stories” Project were invited to participate in the
process evaluation at various key points during the project as new
educational activities and resources were developed and trialled.
Participation was entirely voluntary. Two groups of participants
were involved in the evaluation (total n = 45; 21 male participants and 24 female participants; ages of participants ranged from
approximately 20 to 75). The “community member participant
group” included Yolŋu who engaged in one or more of the project activities described above (n = 30). Purposeful selection of community
participants sought maximum diversity in terms of age, gender, level
of health literacy and proficiency in English. All educators (Balanda
and Yolŋu) involved with the project were invited and agreed to participate in the evaluation (n = 15). The “educator” participant group
(n = 15) included Project Team members, ie, Yolŋu involved in managing, developing and implementing the project (5), Yolŋu educators
working with other organisations (6) and Balanda health staff and
educators (4) who supported the Yolŋu Project Team. The research
was explained in the potential participants’ preferred language to
ensure consent was genuinely informed. In contrast to the prevailing emphasis on maintaining anonymity in reporting research findings, participants in previous research in this context often wished to
be identified using their own name.22 Participants were, therefore,
given a choice of how they wanted to be identified when quotes
from their interviews were used, including the option of remaining
anonymous.
2.4 | Data collection and analysis
Semi-structured interviews were conducted with participants, in
their preferred language, with individuals or in small groups, as participants preferred. Rather than specific direct questions, we used
a culturally congruent conversational approach to explore participants’ perspectives related (but not limited) to what they learned
through the education sessions; what was working well in the way
information was shared; what needed to be changed and ideas for
improvement. Interviews in Yolŋu languages were collaboratively
translated into English and transcribed by the authors, two of whom
are Yolŋu with extensive interpreting experience. Reflective interviews with Project Team members based on their participant observation and analysis of video recordings of project activities were
additional sources of data.
Data from all sources were analysed collaboratively through an
iterative and primarily oral process preferred by Yolŋu researchers
who bring extensive knowledge and insight from their lived experience as “insiders” to the process of data analysis and interpretation. This process was supported by the use of a qualitative
data management program (QSR NVivo 9) in organising the data.
Analysis was informed by constructivist grounded theory methods,24 using an inductive process in which codes were derived
from the data and emerging categories were identified through an
iterative process of constant comparison of data with data, data
with codes and codes with codes.24 These were explored further
through a process of theoretical sampling,24 during interviews and
informal discussions throughout the project, elaborating and confirming key elements of the Yolŋu approach to education with the
Project Team and other participants. Quotes were selected that
best illustrated the findings and checked with participants for accuracy and relevance to the context in which they are used in the
manuscript.
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170  |     LOWELL Et aL.
3 | FINDINGS
In this paper, we focus on the process of development and implementation of a Yolŋu approach to community health education to
explore the core elements, as well as the strengths and challenges,
from the perspectives of both educators and community members.
These included: location of control – a Yolŋu project with Balanda
support; developing strong stories through working with experts to
integrate Balanda and Yolŋu knowledge; and responding to Yolŋu
needs in developing and sharing the stories – Yolŋu educators sharing in-depth explanations in Yolŋu languages at a time and place
that suits people and their communities. The greatest challenge
experienced by the Yolŋu team was the short-term funding for the
project given the devastating impact of chronic conditions on their
lives, their families and their community. This concern was shared by
community members and the need for ongoing access to meaningful
health information – so “Yolŋu can live as long as Balanda”- was a
consistent and recurring theme.
3.1 | Location of control: a Yolŋu project with
Balanda support
Location of control with local community members, working in a local
organisation staffed only by Yolŋu, was a key feature of the project.
At all times control over project decisions and processes remained
with the Yolŋu team. The role of Balanda providing support was to
enable Yolŋu educators to take control of the education process:
(The Balanda) can come and give the deep story about
what is causing the sickness, the story can come out….
(then) Yolŋu will share the information, Yolŋu will give
the education, Yolŋu will go to the field
(Yolŋu health educator).
A Balanda educator working in communities in the region
described the contrast with her usual experience:
We weren’t actually running the program…. we were
invited guests because of expertise – that’s a different
mindset…
(Balanda health educator).
Another Balanda educator compared this project and her previous
experience in working with another organisation:
The process is quite similar (in the other organisation)
except that there the power was with the Balanda educator who was being empowered to educate rather
than Yolŋu being empowered to educate each other…
(In this project) I felt at all times they were in control…
I was being utilised because I had expertise in the process… they set the agendas…
Control over production of video resources, all in Yolŋu languages,
was also located with the Yolŋu team throughout all stages – filming,
editing and publishing – with support from a Balanda consultant and
others to further develop their skills when required. In response to
feedback from participants far more videos were produced than originally planned (see examples in Appendix S1). The wide distribution of
the videos on DVD, USB flash drives and uploading to the internet also
enabled a shift in control to community members: Yolŋu of all ages,
regardless of literacy levels or proficiency in English, could then access
the resources at a time and location that met their needs.
The quality and extent of collaboration between the Yolŋu team
and others who worked with them were of critical importance in ensuring Yolŋu control was maintained over all aspects of the project.
3.2 | Developing strong stories:
understanding and integrating information from
Yolŋu and Balanda domains
From the outset, the Yolŋu team had a clear aim – to share the “full
and true stories” about chronic conditions with their community. A
collaborative process evolved in which the project team worked with
both Balanda and Yolŋu experts to share and integrate information
from both the biomedical and the Yolŋu domains.
3.2.1 | it’s like throwing the seeds to the soil
The Yolŋu team recognised their need for support to develop their
understanding of the biomedical information related to chronic conditions and invited Balanda health educators and clinicians from
various organisations to work with them. This collaboration occurred through several processes including intensive small group
sessions and larger workshops ranging from two to five days, as well
as through ongoing support with clarification and expansion of biomedical concepts over the project period.
An experienced Balanda health educator who is proficient in a
Yolŋu language widely used in the region, described the early stages
of the process:
…before they (Yolŋu) could teach…about the chronic
diseases they wanted to know what the biomedical story was, so we spent quite a bit of time going
through that process, drawing it out on paper, going
backwards and forwards, asking questions, them deciding between themselves how they could talk about
concepts in their worldview and in their language and
really them coming to a meaningful story about what
those chronic conditions were… the Balanda world
view – and they wanted to understand the terms that
they hear us use – like pancreas, heart lungs circulation, blood sugar level…
(Alice Mitchell, Balanda health educator).
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LOWELL Et aL.    |  171
The support provided by this educator was highly valued:
… she gave herself to the community, her skills and
knowledge – she passed it on to me and to all of us
Yolŋu…. she was planting the seeds from her own
learning… it’s like throwing the seeds to the soil.
And then I came and took this – I felt very excited,
‘I want to do this, I want to help my own people’.
And we stood hand in hand … and started beating
a pathway through the jungle – finding a way to go
through…
(Gundjarranbuy, Project Coordinator).
Further workshops were held with other Balanda health staff as
the Yolŋu team needed help with developing their understanding of
biomedical concepts relevant to their work. Yolŋu educators from
other organisations also participated in some of these “story development” workshops. Even those who have worked as educators for many
years valued the opportunity to learn about concepts that had never
been effectively explained to them:
This story, they (Balanda) haven’t told us the story
before and yesterday we got the true deep story,
about what is happening inside our body and about
the parts – what work they do and how they help
us… the straight story, before we didn’t get this
information
(Dhalirri 2, Yolŋu community educator).
This process of enabling access to meaningful information from
the Balanda domain requires considerable time and effort but was
critically important in shifting control to the Yolŋu educators who described their increasing sense of empowerment as their knowledge and
confidence strengthened.
3.2.2 | Effective communication strategies for
developing the stories
Most of the Balanda providing support to the Yolŋu team did not
speak a Yolŋu language and an interpreter was sometimes employed
to facilitate effective communication. Balanda educators discussed
with the Yolŋu participants how to explain each concept in their own
language as it was introduced. This triggered active and collaborative engagement in the learning process and provided opportunities
for misunderstandings to be revealed and repaired, even in workshops where bilingual health staff or interpreters were not present:
…it wasn’t about me teaching them, it was about us
discussing it together so they could think about what
does this actually mean and how am I going to explain
this concept to someone in Yolŋu Matha… I was certainly learning things from them on how best you can
express an idea or how people might understand an
idea
(Balanda Clinician).
This strategy of continual collaborative interpreting of each new
concept introduced by the Balanda educators, as well as Yolŋu sharing their knowledge, facilitated a more in-depth understanding than
passive listening to an explanation in English. Even without bilingual
Balanda support or interpreters, an effective collaborative process was
still possible when Balanda educators were competent in intercultural
engagement.
3.2.3 | Yolŋu helping other Yolŋu – passing on their
knowledge and pain…
One of the project aims was to revive and strengthen healthrelated knowledge and practice from the Yolŋu domain and this
was a high priority for the Yolŋu team in developing their educational approach. Collaboration with Yolŋu experts was an important element of this project – those with particular knowledge of
traditional foods, medicines and healing practices. As well, peer
education activities enabled Yolŋu living with chronic conditions
to share their experiences through participating in workshops and
through interviews that the Yolŋu team recorded and integrated
into the project video resources:
Yolŋu who have a heart problem or a diabetes problem, we helped each other, we shared the knowledge
that was ‘sleeping’, unknown… it is like unpacking it,
opening it up for everyone… The sick people… discovering for themselves and then passing on their
knowledge and pain – what is affecting their life – it is
helping other Yolŋu… many, many Yolŋu were interested to see the videos with their interviews
(Gundjarranbuy, Project Co-ordinator).
Yolŋu from homelands and the main community also shared their
skills and knowledge in workshops and on video – about healthy traditional food from the bush and from the sea, about exercise through
ceremonial dancing and hunting, bush medicines and traditional healing practices.
These collaborations with Balanda and Yolŋu experts occurred
throughout the project as the stories about causes, prevention and
management of chronic conditions, integrating knowledge from
both domains, were continually developed.
3.3 | Responding to Yolŋu needs in developing and
sharing the stories
Through an iterative process, going back again and again to clarify
and expand their understanding, the Yolŋu educators worked out
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172  |     LOWELL Et aL.
how best to explain new concepts, linking with existing Yolŋu knowledge, using metaphors that are locally relevant and identifying ways
of presenting information that are most effective.
3.3.1 | A full understanding of the whole story…
Consistently throughout the project, the Yolŋu educators explored
and revealed underlying concepts related to the biomedical as well
as Yolŋu understandings of how the body works before sharing
information about chronic conditions. In this way they supported
Yolŋu to make informed decisions rather than providing simplistic
directives about behaviour change:
..first break into pieces, explaining each part….it’s like
doing a puzzle – then it will all go up to the brain and
that’s how we will get full understanding of the whole
story…. don’t just give the main story
(Peter Yawundjurr, community educator).
Differences between Balanda and Yolŋu conceptual understandings about the body were explained before introducing information about what can go wrong and why. In the “Diabetespuy
Dhäwu (Story about Diabetes) video, for example, the process of
digestion and circulation was explained before introducing information about insulin and diabetes: many participants were astonished to discover there were “two tubes” – the trachea and
oesophagus – rather than only one. The importance of clear explanations about the function of the heart, lungs and blood was also
illustrated through the experience of a Yolŋu community member
with a high level of fluency in English and extensive experience as
a patient with cardiac services:
I didn’t know about how we breathe and then I saw
the video – all the way I’d thought breathing was done
by the heart not the lungs… then I recognised how
we breathe and how blood flows – from the video…
it was like an electric shock… The doctors have never
explained that before… I never (heard the story) before in my life until last week when I watched the DVD
– now I am 58 – and only now I have heard the straight
story about breathing… when I got home I shared the
story with my sister ‘we are not breathing with our
heart, we are breathing with our lungs…
A Yolŋu educator from a community health service also explained
why in-depth explanations are important and how the resources produced in the project helped with her work:
We need to know the full story because when the
Balanda ask if we want insulin, we are thinking that
insulin is poison that they are giving us in the injection… But we don’t know the deep story – yesterday I
went around the community showing the (Yalu project) video as part of my role as an educator…
(Gurimaŋu, Yolŋu educator).
Using a narrative approach the Yolŋu educators integrated the biomedical story into the broader context of Yolŋu lives and experience,
exploring and linking concepts with participants’ prior knowledge and
checking understanding. Biomedical information was presented as alternative or additional, rather than the only, explanation when this was
different from existing Yolŋu understandings about the body. In producing the videos, rather than starting with a “storyboard” (a Balanda
approach) Yolŋu collected a wide range of content (from both Balanda
and Yolŋu) related to the topic. Stories were shared from “the heart and
the mind” and no scripts were ever used. As their knowledge deepened
about the subject the Yolŋu team were then able to edit and sequence
the information in a way that would be meaningful to other Yolŋu. This
often resulted in videos of considerable length, in stark contrast to
the brief and often superficial health resources produced by Balanda.
Participants consistently confirmed that videos were not too long –
some watched multiple videos during education sessions and the same
video multiple times at home – and they insisted that detailed explanations were needed to understand new concepts:
to me it is not long – it’s good, interesting… a long
story – (Yolŋu) will understand, a short story (they) will
not understand… the information goes in and comes
out – they are not holding it and understanding with
the heart and the mind…
(Peter Yawundjurr, community educator).
An explanatory and interactive, rather than a didactic approach,
was consistently used by Yolŋu educators. The contrast between this
approach and resources and messages developed outside the community was repeatedly illustrated during the project. For example, a
resource produced elsewhere using the phrase ‘keep your family smoke
free’ was interpreted as advice to give free cigarettes to your family.
Misunderstanding due to culturally specific Balanda metaphors and
oversimplification was again illustrated when “sugar-free” drinks were
introduced into the community store. Many Yolŋu interpreted “sugar-free” to mean that the drink contained a lot of (free) sugar rather
than no sugar and subsequently an explanation of the term “sugar-free”
was integrated into one of the project videos. Yolŋu educators often
used metaphors and analogies in oral explanations of unfamiliar concepts but these were highly specific to their own context, linking to
existing knowledge. They also avoided directives, in response to the
strong sense of individual autonomy and resistance to external control
in this culture, instead of sharing the information required for individuals to make their own – genuinely informed – decisions.
Illustrations and animations were also important components
of the education as support for, but not alternatives to, the oral
explanations. Abstract or metaphorical illustrations and slogans in
mainstream health resources, such as posters and flipcharts, were
often not meaningful and described as “having no story inside.”
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LOWELL Et aL.    |  173
There was a strong preference for visual content that was realistic,
rather than stylised and that captured the context. For example,
a picture of the whole body that then zoomed in to the heart and
lungs and a three dimensional model of the body with removable
parts were used by educators to support their oral explanations
when producing the videos. Although many Yolŋu have considerable anatomical knowledge from hunting animals for food, Yolŋu
and biomedical understandings of physiology are often very different so animations were also needed to illustrate unfamiliar concepts such as circulation.
3.3.2 | Yolŋu explaining in Yolŋu languages…
opening our minds and waking us up
Yolŋu educators sharing information with their community in Yolŋu
languages, rather than Balanda explaining in English alone or with
Yolŋu translating for them, was a fundamental feature of the approach valued by many participants, regardless of their fluency in
English:
Yolŋu… explaining in Yolŋu language not in English –
when it is in Yolŋu language, Yolŋu understand. Not
Balanda explaining in English – or telling half – from
their thinking
(Yolŋu community educator).
Many participants were frustrated that they had not had access
to meaningful information in the past; even if they had heard about
chronic conditions from health staff, they did not understand:
… in the past the word ‘chronic’ has come out but we
didn’t know the full meaning – what it really means,
the full details – (they didn’t) explain every part to
make it clear, we didn’t know
(Baŋaditjan, community educator).
Access to meaningful information was also important to provide
credible explanations for deaths: when someone dies who is not obviously sick deliberate harm caused by others is often blamed when no
alternative explanation is apparent.
Participants confirmed that explanations in Yolŋu languages
were crucial for Yolŋu to understand the complex new information
that they need to make informed choices, even by those with a high
level of fluency in conversational English, such as this senior Yolŋu
man:
It’s very difficult when it’s in English – if we hear Yolŋu
language the Yolŋu will understand and it’s meaningful – but it’s up to individual Yolŋu what choices they
will make… that video is very helpful… I learnt about
the sickness, what is the nature of the sickness and
how will it affect us.
Again and again Yolŋu described the education as “opening their
minds” and “waking them up” as these examples from young community members illustrate:
it’s opening our mind… that kind of story wakes up
and helps Yolŋu – and opens their minds so Yolŋu become active …
It’s a helpful story – it opened our minds… We want
you (project team) to not give up, continue to share
this information with all Yolŋu..
All Yolŋu participants described new knowledge that they had
gained through the Project activities and resources, often expressing
excitement and gratitude for the opportunity to access information
that was previously not available to them.
3.3.3 | Finding a way to share the stories…
As well as responding to Yolŋu communication and health literacy
needs in developing the stories, the Yolŋu team also explored ways
to share the stories that were responsive to Yolŋu preferences,
adapting and modifying the process as challenges and opportunities
emerged. For example, the original plan to conduct extended workshops open to all community members proved difficult to implement
in the context of frequent and long funeral ceremonies as well as
incessant meetings with Government visitors and other services.
The Yolŋu team responded to these challenges by identifying other
more achievable strategies such as conducting education sessions in
workplaces and integrating their education with other health-related
programs and activities. Family group education sessions, also part
of the original plan, were so effective that far more were conducted
than originally intended.
Education sessions were conducted with family groups in their
own environment at a time and place that suited them, often outside, at home in the evenings and during funeral ceremonies. These
ceremonies can continue for more than a week and many people
gather at the ceremonial area, often staying there overnight. The educators found evenings, when families were gathered together and
not busy with other activities, were a good time for educational activities. Yolŋu educators were able to draw on kinship connections,
which exist between all Yolŋu, because they have the cultural knowledge to navigate interactions in the right way:
…at ceremony time, I just go from place to place – evening time, when they have eaten and they are settled
down and all the families are there. That is a good time
for me to go – to talk to them and share information…
I don’t just go there and ask straight away. I sit with
them and tell stories, I tell funny stories and when
they have settled down the family members ask me
‘ why have you come here?’ and that’s where I come
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174  |     LOWELL Et aL.
in. That’s the manner that I and we use – that is good
communication, that’s good manners…
(Gundjarranbuy, Project Coordinator).
Sharing the video resources produced through the project also became a key element of education sessions in all contexts. Distribution
of DVDs at no cost and availability on the internet, accessed through
widely used mobile devices, also allowed repeated viewing to reinforce
new knowledge and ongoing discussion within family groups. As well,
Yolŋu educators provided ongoing reinforcement and encouragement
that is not possible for outsiders. They integrated their work into all
areas of their lives – sharing information about chronic conditions at
home with their families and with visitors, out hunting, at church and
during other social activities. The knowledge Yolŋu educators developed through the project was not lost with the departure of educators
from outside the community, enabling continued sharing of information beyond the life of the project.
3.4 | At the same age Yolŋu and Balanda should die
– we need an ongoing program
All of the Yolŋu involved in the project have experienced the trauma
of losing close, often young, family members to preventable chronic
conditions many times so the ending of the project was a source of
great distress. The Project Team received many requests for ongoing
education within and beyond the community that they were unable
to meet within their existing resources and the Project time frame,
including continued promotion and distribution of video resources.
Many important topics could not be covered, or explored in sufficient depth. Community members of all ages stated that education
should be continued and expanded, and video resources distributed
widely:
Me and my elders want you to share with other Yolŋu
so they can learn from the video and understand
about looking after their bodies… We believe that is
a true story – it touched us… because when we saw
the video we can recognize what is happening to ourselves… When we watch the video we learn and believe the story… that story went into our blood…
(senior men participating in a Homeland workshop).
Younger men and women shared similar views, for example:
…not just to the community, send it to Darwin, even to
Canberra, even to Adelaide – people are there, exactly
like us – that they have never heard the story about
anything, even in the big city they haven’t heard a
good story about their health, just get a piece of paper
when they come from the clinic – but there should be a
story like yours – to share what you are doing, to make
other people understand in other communities…. It’s
important for young people to understand – extending the project until the next generation…
(participants in a family education session).
Yolŋu involved with the project – educators, researchers and community participants – shared a common vision about the health education they need:
… an ongoing program, on and on – not stopping, a
‘forever’ program…
(Ḻäwurrpa Maypilama, Yolŋu researcher).
Continued access to meaningful health education to enable informed decisions in preventing and managing chronic conditions was
seen as imperative to achieve equity in life expectancy:
Yolŋu to Yolŋu really helping each other so that young
people don’t die… At the same age Yolŋu and Balanda
should die. Not Balanda living longer and Yolŋu
dying (early). So closing the gap together like this – so
Yolŋu will reach the same level as Balanda and walk
together…
(Gundjarranbuy, Project Coordinator)
The Yolŋu team worked hard to identify and develop a strong
“dhukarr” – pathway or process – for effectively sharing information
about chronic conditions with others in their community and beyond.
In Figure 1, they illustrate their conceptualisation of effective health
education through a metaphor of nurturing, growth and sustainability.
4 | DISCUSSION
The majority of Australians, who speak English as their primary
language, have extensive access to health information in their own
language through their health services, the media, the Internet, at
school and throughout their communities. Australians who speak
an Aboriginal language as their primary language do not. This study
contributes to a deeper understanding of the ways in which a community health education program can respond to the health literacy
and communication needs of a minority population who do not share
the language and culture of the majority. Although the “Sharing the
Full and True Stories” Project was developed by and for Aboriginal
people in the remote region of northern Australia, core elements of
this approach can also be assessed for relevance for other minority
cultural and language groups (see Table 1). In this paper, we have explored the development of a culturally and linguistically responsive
approach to sharing information about the prevention and management of chronic conditions, from the perspectives of both educators
and community members. Importantly, the project was initiated as
a direct response to strong community concerns about their limited access to information required to prevent and manage chronic
conditions that are having a devastating impact on their lives due to
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LOWELL Et aL.    |  175
rapid cultural change. The relevance of the project to Yolŋu priorities
was reflected in the high level of Yolŋu control and engagement in
initiating and conducting the project. The Yolŋu approach to health
education was continually refined and modified in response to participant feedback as the project progressed, both in terms of the development of the stories and ways in which information was shared.
Core elements of the approach that evolved through the project are
summarised in Table 1.
A key point of difference between this project and other health
education work in remote Indigenous contexts relates to the location of control. In the context of a colonised minority population that
does not share the language and cultural background of the majority,
who determine policy, allocate funding and provide services, health
communication is intertwined with issues of power. In health promotion activities, often described as using participatory or partnership
approaches, the usual role of Yolŋu is to help the Balanda to implement their agenda. In this project, the role of the Balanda was to support Yolŋu. The collaborative process shaped by the Yolŋu team was
one in which Yolŋu maintained control and the Balanda educators
shared their expertise, while recognising and respecting their role
in enabling Yolŋu educators to access biomedical knowledge and
develop their skills and confidence in sharing this information with
others. The approach that evolved through this project resonates
with the theory of critical health communication in which power and
control are central considerations.25
The cultural competence and communication skills of providers
as well as the ability to minimise power imbalances are increasingly
recognised as important influences on health literacy.11,26 These
were critical factors in collaborations between Yolŋu and Balanda
educators as were the long-term collaborative relationships already
established between Yolŋu and Balanda involved in the project.
Sufficient time for Yolŋu educators to develop their knowledge
from the biomedical domain was also essential to maintain and
strengthen Yolŋu control in all stages of project development and
implementation.
4.1 | Challenging assumptions about health literacy
Many Yolŋu express a desire to achieve a much higher level of health
literacy within the biomedical domain than many Balanda assume
that they want or need16,27 but we found that even Yolŋu who have
worked for many years as health educators do not necessarily have
sufficient understanding to effectively share biomedical information that community members want and need to access. Previous
research has demonstrated that, despite the best efforts of many
health staff, Yolŋu sometimes believe that health information is
withheld from them16 and assumptions about the extent of shared
understanding of health-related terms and concepts contribute to
this failure in communication.16,27
Health promotion programs and resources for Indigenous communities are often developed and delivered by those who do not
share their language and cultural background, limiting the extent to
which strategies reflect local understandings of health and illness
or local mechanisms for sharing knowledge.16,28,29 Our findings are
consistent with other studies that suggest differences in conceptual
knowledge, as well as language, world-view and power relationships,
must all be considered in developing effective approaches to health
education in remote Indigenous contexts.6,28,30 In this project, the
location of control with cultural and language experts – local educators – supported the optimal development of culturally and
conceptually responsive education and communication processes.
Yolŋu educators sharing information in Yolŋu languages in ways that
were suited community members were key elements of educational
approach. Consistently participants confirmed that the stories developed by the Yolŋu team were meaningful and credible, providing information that they had not previously known or understood.
Both the use of local languages and detailed explanations of foundational concepts about which there is not a shared understanding
were identified as critical factors. The Yolŋu educators clearly rejected the simplistic and often directive approach common to many
health resources and messages developed by others. In recognition
of the importance of individual autonomy and resistance to external
control in this cultural context,16 Yolŋu educators worked to share
meaningful and sufficient information to enable informed choices,
framing the stories as explanatory and avoiding directives. A focus
on “key messages,” often without explanation, is not responsive to
the health literacy needs expressed by many Yolŋu – that is, access
to the “full and deep and true stories” about the health challenges
they face – including causes, consequences and strategies for prevention and management.16,19,20,27 In contrast, the Yolŋu team developed in-depth explanations about how the body works, what
can go wrong and why to enable informed decisions. Recognising
and responding to differences between cultural and biomedical understandings of foundational concepts, such as the function of the
heart and lungs, was a crucial element of the Yolŋu approach, sharing similarities with other health education programs in this cultural
context.6,18 Such explanations of unfamiliar concepts are most effectively communicated through the primary languages of the target group and shared understanding of health-related concepts and
terms cannot be assumed, even for those with high levels of conversational English,6,28,31 as our findings strongly confirmed.
Oral communication was the dominant mode used in the education process, reflecting the cultural context, but visual illustrations
were also used when considered necessary to enhance understanding. Although Yolŋu use abstract visual representations of their
own cultural knowledge, for example in traditional painting, realistic and contextualised images and animations were preferred when
illustrating unfamiliar concepts. Stylised or metaphorical images in
mainstream health resources were often not meaningful, reflecting
cultural differences in pictorial literacy and assumptions of shared
knowledge that lead to confusion.6 As with oral explanations, visual
support needs to be constructed through the cultural and conceptual lens of the target group.
Although greater access to information from the biomedical
domain is a high priority for Yolŋu, health-related knowledge and
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176  |     LOWELL Et aL.
practice from the Yolŋu domain remains highly valued. This was reflected in the many project resources and activities that focused on
reinvigorating and confirming the relevance of cultural knowledge,
integrating this with new information from the biomedical domain,
in ways that were meaningful to Yolŋu. The term “both ways health
literacy” has been proposed “to emphasise the importance of valuing
both biomedical and Aboriginal knowledges,” structures and processes
in relation to developing shared understanding about human being, the
body, pathology, sickness and health (wellness).32 Yolŋu educators as
well as those experiencing chronic conditions sharing knowledge
from both domains in their own languages, made widely available
through video resources produced by the Yolŋu team, was identified as an important element of the approach developed through
this project. Such integration of Indigenous health knowledges and
practices is critical to the decolonising conceptualisation of health
literacy.33
4.2 | Shifting control of resource production
A distinctive local approach to the production of video resources
evolved which was relatively low-cost, feasible and effective. High
cost professional production is not necessary to produce an effective resource when the key component is a clear and meaningful
message in local languages, supported by relevant images, which
can best be achieved by local community members. As a result, and
in response to community requests, many more videos were produced than originally planned. Distribution of videos at no cost and
availability on the internet allowed Yolŋu greater control in when
and where they accessed health information and provided the opportunity for ongoing reinforcement of new knowledge. Another important strength of a program conducted by local educators is their
ability to respond to community preferences in the ways in which
health education activities are conducted. The Yolŋu team modified planned activities as challenges and opportunities emerged, for
example, shifting their focus from larger community workshops to
small group education in the evening with family groups at home or
at ceremonies, an approach that is not possible for educators who
are not members of the cultural group.
4.3 | Equity and sustainability
The opportunity for continuing extension and reinforcement of
education activities through the extensive professional and personal networks is an important strength of a locally based project
run by community members. However, the scope and extent of
the education were limited by the short-term duration of this project and this was a source of distress and frustration. In this context of information deprivation,6 high rates of chronic disease and
low life expectancy,2 ongoing and greater access to information
they need to address these health challenges was a high priority for many Yolŋu. Sustained and equitable access to meaningful
information– through communication in the primary languages of
the target group using a culturally responsive approach – is crucial
to improve health literacy and to enable genuinely informed decisions in the prevention and management of chronic conditions.
Baum and Fisher34 present compelling evidence that health equity
cannot be achieved through targeting individual behaviour change
but requires action to target the social determinants of health.
Increasing agency of individuals and communities in advocating
for such action, that is “critical health literacy”,35 also depends on
access to the “full story” about the health challenges they face,
including influences beyond the individual and how they can be
addressed.
4.4 | Limitations
The primary limitation is that the project was conducted in one
remote region of northern Australia where participants share
similar cultural and language backgrounds. No assumptions can,
therefore, be made about the relevance of these findings for other
cultural groups within or beyond the study location. However, the
approach developed by the Yolŋu team in this project provides
a model that can be considered and adapted to improve the relevance of, and equity of access to, health information for other
minority groups who do not share the language and culture of the
majority population.
5 | CONCLUSION
Equity of access to meaningful health information is a fundamental
right that is not realised for Aboriginal people whose primary language is not English. A culturally responsive approach, led by local
community educators, can optimise access to meaningful, in-depth
health information in relevant languages: this is critical to improving health literacy and equity in health outcomes. Such an approach
requires a shift in control of the process of health communication to
local experts – those who share the culture and language of community members – as well as culturally competent support from others to access information they need from the biomedical domain.
Increasing health literacy risks a greater sense of disempowerment
unless the full range of social determinants contributing to health
inequity is also addressed. However, the local agency in advocating
for, and engaging in, action to address these determinants depends
on understanding the nature and causes of the health challenges
communities face in the context of rapid cultural change. This requires sufficient and effective support for community-driven strategies and an end to short-term and inadequate funding that fails to
respond to the urgent need for prevention:
Our people are dying – this project is ending… the
community desperately wants more education….
more and more until we understand… so we get sick
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LOWELL Et aL.    |  177
at the right time, so we get dead at the right time, like
that
(Yolŋu Project Coordinator)
ACKNOWLEDG EMENTS
The authors would like to thank the many community members, educators and health staff who generously gave their time and shared
their knowledge in supporting the development and evaluation
of the “Sharing the full and true stories about chronic conditions”
Project.
CONFLIC T OF INTERE S T
The authors declare they have no conflict of interest.
E THIC S APPROVAL AND CONSENT TO PARTICIPATE
The Human Research Committee of the Northern Territory
Department of Health and Menzies School of Health Research and
the Charles Darwin University Human Research Ethics Committee
granted ethical approval for this study. Written consent was obtained from all participants following in-depth explanation about the
study in the participant’s primary language to ensure consent was
fully informed.
CONSENT FOR PUBLIC ATION
Participants were given a choice about how they wanted to be
identified if quotes from their interviews were used in publications. These preferences were again confirmed when the manuscript was completed for those participants who chose to use their
real name.
ORCID
Anne Lowell https://orcid.org/0000-0001-9540-1939
Elaine Läwurrpa Maypilama https://orcid.org/0000-0002-2621-9823
Rosemary Gundjarranbuy https://orcid.org/0000-0002-3158-186X
T WIT TER
Anne Lowell @anne_lowell
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SUPPORTING INFORMATION
Additional supporting information may be found online in the
Supporting Information section.
How to cite this article: Lowell A, Maypilama EL,
Gundjarranbuy R. Finding a pathway and making it strong:
Learning from Yolŋu about meaningful health education in a
remote Indigenous Australian context. Health Promot J Austral.
2021;32(S1):166–178. https://doi.org/10.1002/hpja.405
22011617, 2021, S1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/hpja.405 by National Health And Medical Research Council, Wiley Online Library on [01/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License