J Clin Nurs. 2021;30:2683–2695. wileyonlinelibrary.com/journal/jocn © 2021 John Wiley & Sons Ltd  | 2683
Received: 29 October 2020 | Revised: 2 February 2021 | Accepted: 5 March 2021
DOI: 10.1111/jocn.15757
O R I G I N A L A R T I C L EHuman Computer Interaction
Chronic disease health literacy in First Nations people: A mixed
methods study
Haunnah Rheault MN, Nurse Practitioner1,2  | Fiona Coyer PhD, Professor1,3,4  |
Ann Bonner PhD, Professor5,6,7
1School of Nursing, Queensland University
of Technology, Kelvin Grove, Queensland,
Australia
2Advanced Heart Failure and Transplant
Unit, The Prince Charles Hospital,
Brisbane, Queensland, Australia
3Intensive Care Services, Royal Brisbane
and Women’s Hospital, Herston,
Queensland, Australia
4Centre for Healthcare Transformation,
Queensland University of Technology,
Kelvin Grove, Queensland, Australia
5School of Nursing and Midwifery, Griffith
University, Southport, Queensland,
Australia
6NHMRC Chronic Kidney Disease Centre
of Research Excellence, University of
Queensland, Herston, Queensland,
Australia
7Kidney Health Service, Metro North
Hospital and Health Service, Herston,
Queensland, Australia
Correspondence
Haunnah Rheault, School of Nursing,
Queensland University of Technology,
Kelvin Grove, Queensland, Australia.
Email: [email protected]
Abstract
Aim: To explore chronic disease education, self-management and health literacy abilities from First Nations Australian adults with chronic disease through the integration
of qualitative and quantitative findings.
Background: Chronic disease management requires good health literacy abilities to
manage long-term health needs. First Nations people have a higher burden of chronic
disease although little is known regarding chronic disease health literacy of First
Nations people.
Design: A concurrent embedded mixed methods study reported using the Consolidated
Criteria for Reporting Qualitative Research guidelines.
Methods: Data were collected from First Nations people with one or more chronic
diseases living in remote Australia between February–November 2017. Quantitative
data (n = 200) were collected using the Health Literacy Questionnaire along with demographic and health data. Qualitative data (n = 20) were collected via face-to-face
interviews to examine chronic disease education and self-management experiences.
Data were analysed separately then integrated to develop meta-inferences.
Results: Poor communication from healthcare providers coupled with low health literacy abilities is a major barrier to both active and successful management of chronic
disease. Communicating in medical jargon resulted in individuals being placed in a
power differential causing lack of trust and relationship breakdowns with healthcare
providers affecting active chronic disease self-management. The perception of inevitability and ambivalence towards chronic disease and the notion of futility towards
self-management were concurred with the low level of active engagement in health
care.
Conclusions: Yarning is an important strategy used by First Nations people for
communication. For nurses, understanding and developing skills in yarning will facilitate cultural safety, communication and understanding about chronic disease selfmanagement in contexts where health literacy abilities are challenged.
Relevance to Clinical Practice: Using yarning, and plain language visual aids, and
teach-back will readdress the power differential experienced by First Nations people
and may also improve understanding of chronic disease self-management.
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2684 |    RHEAULT ET AL.
1  |  INTRODUC TION
Substantial inequalities in health outcomes and quality of life continue between First Nations and non-Indigenous populations,
particularly notable in North America, Canada, New Zealand and
Australia (Australian Commission on Safety & Quality in Health
Care [ACSQHC], 2015). The proportion of chronic disease is greater,
and life expectancy remains markedly lower for most First Nations
populations across the world (Pulver et al., 2010). Chronic disease
management is the healthcare challenge of this century as chronic
disease is the principal cause of both death and disability worldwide
(World Health Organization [WHO], 2019). Chronic diseases consist of complex health conditions typically resulting in persistent and
disabling effects on one’s well-being (Gadd, 2018). Chronic disease
management requires individuals to assume greater roles in both
decisions and management of their health often requiring complex
critical daily self-management that confronts individuals and families with a steep learning curve (Moreira, 2018). Chronic disease
self-management, however, assumes that both individuals and the
greater community have competent health literacy abilities to undertake such tasks (Batterham et al., 2016).
Health literacy is a multidimensional concept which involves complex abilities to apply health information to make appropriate health
decisions through accessing, obtaining and understanding health information (Osborne et al., 2013; Parnell et al., 2019). The construct
of health literacy has evolved from reading and writing to include
cultural knowledge, critical analysis of health information, having
the ability to effectively navigate and use the healthcare system and
being capable of effectively communicating with healthcare providers (Osborne et al., 2013; World Health Organization, 2013). Health
literacy is pivotal for improving individual knowledge, facilitating
engagement with healthcare providers and having effective chronic
disease self-management abilities (Dahal & Hosseinzadeh, 2020).
Having limited health literacy is strongly associated with worse
health outcomes and poorer health behaviours (Berkman et al., 2011;
Geboers et al., 2016) which often leads to higher rates of hospitalisation and healthcare costs (Sørensen et al., 2012). Health literacy is an
important element in the delivery of person-centred care (Mackey
et al., 2016), promoting shared decision-making between the patient
and healthcare professional enabling an individual to make appropriate decisions regarding their health (Durey et al., 2016). Health
literacy is also an often overlooked skill set by healthcare professionals (Lambert et al., 2015). Being aware of health literacy principles
to provide health information to individuals and communities with
health information which enables engagement and successful chronic
disease management is a key factor for healthcare professionals and
services (Ishikawa & Yano, 2008; Marciano et al., 2019).
Cross-country comparison shows that First Nations people in
Australia, New Zealand, Canada and North America have similar
health literacy needs and that healthcare professionals are struggling to understand how they could better support these individuals
(Berkman et al., 2011). Having sufficient health literacy far surpasses
an individual alone; the principles of health literacy need to be embedded in health service design and delivery to meet the needs of
and engage with their community (ACSQHC, 2015). To improve
chronic disease health literacy, identification of the barriers and
contributors to good health literacy is urgently required along with
strategies in promoting self-management (Jacobs et al., 2017).
1.1  |  Background
More than 50% of the populations in affluent countries have low
levels of health literacy, although cross-country comparisons are
problematic due to the different methods used to determine health
literacy (Moreira, 2018). Low health literacy is a strong contributor
to health inequalities (Heijmans et al., 2015). International health
literacy literature reports that low health literacy may be more
prevalent in vulnerable populations such as the older, those from
socio-economic disadvantaged groups, geographical isolation, diverse cultural and linguistic backgrounds and minority groups
(Cooper, 2011), and thus, ignoring health literacy may contribute to
exacerbating already existing health inequalities. First Nations people’s experiences with the Australian healthcare system are fragmented, complicated and often sub-optimal (Berkman et al., 2011;
Durey et al., 2016).
National health literacy data pertaining to First Nations people
in Australia are lacking. While Australia has reported the nation’s
health literacy in 2006 and 2018 (Australian Bureau of Statistics
[ABS], 2008; 2018), different methods were used on each occasion
with the most recent results, indicating that those with chronic diseases had lower health literacy abilities and were also less engaged
K E Y W O R D S
Aboriginal and Torres Strait Islander health, chronic disease, First Nations people, health
literacy, health literacy questionnaire, Indigenous, mixed methods, nursing, rural health
What does this paper contribute to the wider
global clinical community?
• Yarning is a communication strategy which supports
person-centred health care.
• As health literacy is contextual, taking a ‘universal precautions’ until health literacy has been determined is a
useful strategy along with using plain language and images during chronic disease education.
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RHEAULT ET AL.     |  2685
with the healthcare system. Previous Australian studies have examined First Nations people’s health literacy in dental care (Parker
et al., 2012; Soares et al., 2020), men’s health (Smith et al., 2020),
cancer care (Treloar et al., 2013), chronic disease (de-identified for
review) and primary health care (Lakhan et al., 2017). Four of these
studies assessed only functional health literacy (Lakhan et al., 2017;
Parker et al., 2012; Soares et al., 2020) while three studies explored
First Nations people’s health literacy qualitatively (Rheault et al.,
2021; Smith et al., 2020; Treloar et al., 2013 (de-identified for review)), indicating that communication with healthcare providers is
problematic. Greater understanding of the multidimensional health
literacy capabilities of First Nations people is urgently needed particularly in the context of chronic disease.
Much of the evidence regarding First Nations people’s health
has been confined to health outcomes in specific diseases (Pulver
et al., 2010). This narrow focus suggests that health inequalities are
a product of First Nations people’s shortcoming and serves to reinforce beliefs of incapacity, rather than re-examining the current
status quo and asking the community how to best deliver appropriate and safe health care (Durey et al., 2016). Further understanding
of First Nations people’s health literacy needs is central to effective chronic disease self-management and health service delivery. A
key element to improving First Nations people’s health is to ensure
health services are first and foremost grounded in culturally safe
principles of healthcare delivery that are respectful and inclusive
which actively partners with consumers to shift power from healthcare providers to the consumers (Durey et al., 2016). Health literacy is grounded on the delivery of appropriate health information,
thus improving First Nations people’s access to health information
in a way which facilitates their capacity to use this information is
key to individual and community empowerment. Health literacy is
modifiable; it is essential for healthcare professionals to adjust the
delivery of health information and promotion interventions for varying health literacy abilities (Heijmans et al., 2015). As management
of chronic diseases requires individuals to actively self-manage their
disease utilising knowledge and abilities developed through health
information (Marciano et al., 2019), the importance of informed patient engagement highlights the priority for ways to promote chronic
disease health literacy. Addressing the abilities and needs of First
Nations people with chronic disease serves a fundamental role in
enhancing health literacy (Heijmans et al., 2015).
2  |  THE STUDY
2.1  |  Aims
This study sought to explore chronic disease education, selfmanagement and health literacy abilities of First Nations Australian
adults with chronic disease residing in remote Australia. As the
study used mixed methods, the quantitative and qualitative phases
have been previously published (de-identified for review), and this
publication reports the final phase which sought to answer to what
extent do the chronic disease education and self-management needs
converge with the health literacy abilities of Australia’s First Nations
adults.
3  |  METHODS
3.1  |  Study design
This study used a concurrent embedded mixed method design incorporating a descriptive qualitative phase and a cross-sectional
survey and is situated in the pragmatic paradigm. In this design, the
qualitative phase was given priority (Figure 1) because Australian
First Nations people’s culture is largely grounded in oral storytelling
(Bessarab & Ng’andu, 2010) and allows the voices of participants to
be the primary focus to examine chronic disease education and selfmanagement. The embedded quantitative phase assessed health
literacy. This study is reported using the Consolidated Criteria for
Reporting Qualitative Research guidelines (see File S1). Here, we
present the integration of findings and meta-inferences.
3.2  |  Study setting
The study was conducted on the traditional lands of the Kalkadoon
people, the First Nations people in Mount Isa, a remote city located
in North West Queensland approximately 1,800 kilometres from
Brisbane. The population of Mount Isa is approximately 32,000 people, 23% of whom identify as First Nations people (ABS, 2016). This
city has a 60-bed hospital and outpatient department providing several chronic disease specialty clinics some of which are nurse-led.
Aboriginal health workers also work in these clinics to support First
Nations people. Specialist medical practitioners mostly operate on a
F I G U R E 1  Concurrent embedded mixed methods study design.
Abbreviation: Qual, qualitative, Quan, quantitative
Concurrent embedded mixed methods study design
Integration of analyses
Quantitative
data collection
and analysis
Qualitative
data collection
and analysis

Meta-Inferences
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2686 |    RHEAULT ET AL.
fly-in-fly-out basis. The city has an Aboriginal Community Controlled
Medical Centre, ‘Gidgee Healing’ and a few general practitioner (primary health care) practices.
3.3  |  Sampling
Using purposive sampling, First Nations adults (≥18 years) were invited to participate in both phases of the study who had a medical
diagnosis of one or more chronic disease/s (cardiovascular disease,
diabetes, respiratory disease and/or chronic kidney disease) and resided in Mount Isa. Those who had received health care from the
lead investigator (de-identified for review) and those medically diagnosed with cognitive impairment or severe mental illness were
excluded from the study. There were no predating relationships between the researchers or participants.
3.4  |  Recruitment
Recruitment occurred at two sites: Mount Isa Hospital and The Prince
Charles Hospital (located in Brisbane). At Mount Isa Hospital, participants were recruited for both quantitative and qualitative phases
concurrently from specialty outpatient clinics (specifically cardiology,
diabetes, respiratory and chronic kidney disease clinics). Registered
nurses and Aboriginal Health Workers Adults screened the eligibility of adults while attending chronic disease clinics to participate in
the study. Aboriginal Health Workers then approached potential participants who were verbally informed of the study aims and were invited to participate in both phases of the study. Those who indicated
an interest in the study were provided with a plain English language
participant information sheet (formulated with the Cultural Advisor)
which was read aloud to each participant. For the quantitative phase,
participation was voluntary and verbal consent was obtained, a requirement of the human ethics committee. Written consent was obtained by the lead investigator for the qualitative phase.
At The Prince Charles Hospital, a cardiac and respiratory tertiary referral hospital for the Mount Isa region, participants were
screened and recruited by the lead investigator (de-identified for
review) for the quantitative phase only, from outpatient clinics. The
same process as the other site for recruitment was used.
3.5  |  Data collection
Data collection took place between February–November 2017.
3.5.1  |  Qualitative phase
Semi-structured open-ended individual interviews were conducted
by the lead investigator (de-identified for review) and focused on
participant’s experiences of receiving information regarding their
chronic disease/s diagnosis, self-management education and their
engagement with healthcare professionals. Interview questions
were formulated with the study’s Cultural Advisor after a review of
the literature. Participants were offered the presence of either a female or male Aboriginal Health Worker during the interview which
was conducted at a location and time of the participant’s choice and
lasted between 20–45 min. Participants were informed that the interviews were audio-taped and professionally transcribed. Prior to
obtaining written consent, participants were also informed of their
right to withdraw at any time without affecting their health care or
future access to health care.
A yarning methodology was used for the interviews. Yarning is
a First Nations cultural form of conversation (Bessarab & Ng’andu,
2010), and a legitimate and respectful data collection technique facilitates knowledge sharing via in-depth discussions and sharing of
stories without imposing traditional Western interview approaches
that may interrupt and curtail stories (Lin et al., 2016). Field notes
were deliberately not taken during the interviews as it is disrespectful to interrupt shared yarning stories; however, notes were immediately written after each interview capturing the lead investigator’s
impressions. After each yarning interview, a reflective and nonjudgemental discussion which was captured in post-yarning notes
took place between the lead investigator and the Cultural Advisor
regarding the content of the yarn to ensure the lead investigator had
understanding of any cultural nuances, local vernacular (‘slang’) used
by the participants, all of which greatly contributed to a clear account
of the participant’s perspectives. Participants were provided with a
$20 grocery voucher for their time. All participants interviewed also
completed the quantitative phase.
3.5.2  |  Quantitative phase
Data were collected by self-report instruments which were read
aloud verbatim (in English) to every participant taking 20–30 min to
complete. Similar to the qualitative phase, data were collected at a
location and time of the participant’s choice. The Health Literacy
Questionnaire (HLQ), a multidimensional 44-item instrument measuring nine individual domains of health literacy which identifies
health literacy needs, strengths, abilities and weaknesses (Osborne
et al., 2013), was used. This instrument also measures the interaction
with healthcare providers and how individuals manage their health
(Osborne et al., 2013). The HLQ does not have an overall health literacy score; instead, each domain has an individual score calculated by
the mean of items within each domain with higher scores indicating
higher health literacy abilities (Batterham et al., 2016). Domains 1–5
are scored on a Likert scale from 1–4 (strongly disagree, disagree,
agree and strongly agree) indicating participant’s level of agreement.
Domains 6–9 are scored on a 5-point Likert scale (cannot do, very
difficult, quite difficult, quite easy and very easy) indicating a selfreported level of capability. Data were also collected through a brief
demographic (age, gender, annual income, education) and health history (type and number of chronic disease/s) instrument.
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RHEAULT ET AL.     |  2687
3.6  |  Ethical considerations
The study was conducted according to the Australian National
Health and Medical Research Council’s statement on Ethical
Conduct in Aboriginal and Torres Strait Islander health research
(National Health Medical Research Council, 2018) and received approval from a Human Research Ethics Committee (HREC) specifically designated to approving studies involving First Nations people
in Queensland (HREC/16/QTHS/145). This HREC comprised of First
Nations researchers and consumers.
At the conception of the study, discussion and approval were
sought from Kalkadoon Elders, the Kalkadoon Native Title Aboriginal
Corporation, Aboriginal Health Workers and the Cultural Advisor
employed at Mount Isa Hospital. The First Nations community of
Mount Isa were actively involved in the research process, including
early yarning meetings with Elders and Aboriginal Health Workers.
The draft research protocol was developed collaboratively including recruitment, data collection, dissemination of research findings
and the role of Aboriginal Health Workers. Reciprocity (building
research capability) was demonstrated in active engagement with
Aboriginal Health Workers regarding research processes including
development of research aims and questions, data collection, data
privacy and confidentiality, data analysis and dissemination of results in publications.
An Aboriginal Health Worker (male) employed by Mount Isa
Hospital was engaged as the Cultural Advisor for this study to ensure and embed cultural safety and act as a cultural broker between
the research team and the community. A second Aboriginal Health
Worker (female) assisted in data collection strengthening integrated
research capacity. Both Aboriginal Health Workers declined to be
named investigators and both preferred to provide a supportive role.
None of the authors identified as First Nations people. The lead
author, a non-Indigenous woman, positioned herself by acknowledging that there were cultural differences and differences in worldview
between herself and participants which may impact on the interpretation of data. Cultural reflection and reflexivity was an ongoing and
iterative process involving the research team, Cultural Advisor, local
Elders, and, during data analysis, consultation with an external First
Nations researcher.
3.7  |  Data analysis
In mixed method designs, both datasets are analysed separately and
then integrated (Creswell & Plano Clark, 2018).
3.7.1  |  Qualitative
Thematic analysis was used to analyse interview data. Transcripts
were read and listened to repeatedly and coded line-by-line manually. Codes and corresponding textual extracts were used to develop a codebook, and codes were then clustered into conceptual
categories which were then grouped into themes (Terry et al., 2017).
Two investigators (HR, AB, de-identified for review) held regular discussion regarding codes, categories and themes against the
data extracts and field notes and created an audit trail documenting analysis regarding analytical decisions. Discussions were had
with the Cultural Advisor regarding categories and draft themes
who provided cultural insights and confirmed the findings. Data
saturation was determined by informational redundancy (Creswell
& Plano Clark, 2018) and confirmed with code saturation between
two investigators and then separately with the Cultural Advisor. An
agreement rate was not collected. Member checking was not undertaken as yarning is a dialogical process which is both a mutual and
reciprocal method of knowledge sharing and knowledge co-creation
(Lin et al., 2016). For some participants, they had not spoken openly
about the challenges of chronic disease and recounted stories (told
during yarning) of deceased family members (e.g. verbalised their
names). To return a written transcript for member checking was,
according to recommendations from the Cultural Advisors and external First Nations researcher, culturally disrespectful. In addition,
most of the participants described difficulties with reading and writing. Returning comments on transcriptions would have been another
potential cause of distress. Lastly, member checking was not a stipulation required by the approving HREC.
3.7.2  |  Quantitative
Health Literacy Questionnaire scale scores, self-reported demographic and health data were analysed used using SPSS® version 23
(IBM Corp & Released, 2015). The sample was described through descriptive statistics (means, medians) and dispersion (standard deviations and ranges). The standard deviation is unknown in this remote
population; as such, the projected sample size was 220 participants,
based on applying the subjects-to-variables ratio, calculated by multiplying 5–10 participants by the number of variables (Hair et al.,
2006). An agreement rate was not collected.
3.7.3  |  Data integration
Data integration is the centrepiece of mixed methods designs and
is the intentional process where qualitative findings are interfaced
with quantitative results (Creswell & Plano Clark, 2018) to generate mixed meta-inferences. We used Creswell and Plano Clark’s
(2018) data integration analysis procedure for concurrent embedded mixed method research designs and employed joint display
tables. Integration of data involved adopting a simultaneous bidirectional approach (Moseholm & Fetters, 2017) and occurred after the
emergence of both the quantitative results and qualitative themes,
with the quantitative results providing an explanatory role to the
dominant qualitative findings to support mixed meta-inferences
of confirmation, disconfirmation and expansion (Creswell & Plano
Clark, 2018). Embedding is derived through linking qualitative and
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2688 |    RHEAULT ET AL.
quantitative data by connecting and merging the data (Creswell &
Plano Clark, 2018). Joint display tables are commonly used in mixed
methods designs to visually display qualitative and quantitative findings alongside explanatory meta-inferences (Younas et al., 2019).
3.8  |  Rigour
In mixed methods designs, minimising threats to validity is required.
For the qualitative phase, rigour involved credibility, transferability,
dependability and confirmability. Themes and categories were rigorously checked against data extracts to enhance trustworthiness.
Intercoder agreement was achieved with two investigators. Then, investigator discussions with the Cultural Advisor facilitated dependability and credibility. Lastly, an audit trail was used during analysis
to facilitate confirmability of findings. For the quantitative phase,
the HLQ psychometric properties show high composite reliability in
all 9 HLQ domains (Elsworth et al., 2016). Creswell and Plano Clark
(2018) strategies were adopted to identify validity issues with the
quality of design and rigour of interpretation to mitigate potential
threats to drawing correct inferences from integrated data. The research questions for the quantitative and qualitative phases (citation de-identified for review) were aligned with the final intent of
integrating embedded data. Finally, transferability and credibility of
meta-inferences are derived from the integration of results as opposed to individual datasets.
4  |  FINDINGS
4.1  |  Participants
Findings from the quantitative and qualitative phases have been
published (de-identified for review). Self-reported demographic and
health data for the quantitative phase (n = 200) are presented in
Table 1. The mean age of participants was 54.6 years (SD 15.7) with
a range of 19–89 years in age; 46.5% were female participants. Most
participants had two or more chronic diseases (62%) with cardiovascular disease being the most prevalent (74%). Out of the 200 participants in the quantitative phase, 20 were interviewed who were aged
from 35–83 years old with an unintentional even split of gender, and
most had two or more chronic diseases. In keeping with the study’s
concurrent embedded design where the qualitative phase is given
priority, these findings will be presented first.
4.2  |  Qualitative findings
Three themes emerged as follows: (a) ‘It’s going to happen’, (b)
‘Communication as a barrier and facilitator’ and (c) ‘Recognising the
past and looking forward’, respectively. Table 2 contains excerpts to
support each theme. The theme, ‘It’s going to happen’, exemplified
the futility surrounding chronic disease, as participants felt there
was/is little they could do to both prevent developing a chronic disease. Communication was recognised as being both a barrier and a
facilitator in meeting participants’ healthcare needs (second theme).
The use of ‘big words’ (medical jargon) by healthcare providers was
described by every participant as problematic, and most participants found written chronic disease health information difficult to
comprehend and were unable to therefore apply that information.
The final theme, ‘Recognising the past and looking forward’, was
grounded in the pragmatic suggestions from participants aimed at
healthcare providers to assist in overcoming disparities and address
healthcare needs.
4.3  |  Quantitative findings
Low health literacy abilities were found across all nine HLQ domains
(see Table 3). Within HLQ domains 1–5 (assessing level of agreement from 1 [strongly disagree]–4 [strongly agree]), the lowest mean
scores was Critical appraisal (mean = 2.41, SD 0.55) which was the
lowest score across the HLQ, and highest score was Social support
for health (mean = 2.84, SD 0.52). Within the HLQ domains 6 to 9
which measures how difficult or easy tasks are for respondents with
a scoring range from 1 (lowest: cannot do/always difficult)–5 (highest: always easy to do), the lowest mean score was seen in domain
9 Reading and understanding health information (mean = 2.82, SD
0.78). The highest mean score was in domain 6 Active engagement
with healthcare providers (mean = 3.14, SD 0.72) which was also the
highest mean score across the HLQ. The predictors of health literacy
have been published elsewhere (de-identified for review; Rheault
et al., 2019).
TA B L E 1  Socio-demographic and health data
Total
n = 200
Age (years), mean (SD) 54.6 (15.7)
Range 19–89
Female, n (%) 93 (46.5)
Chronic disease profile, n (%)
Cardiovascular disease 148 (74)
Diabetes 135 (67.5)
Respiratory disease 53 (26.5)
Chronic kidney disease 49 (24.5)
1 chronic disease 76 (38)
≥2 chronic diseases 124 (62)
Education, n (%)
Primary 39 (19.5)
Secondary 82 (41)
TAFE/University/Trade qualification 24 (12)
Prefer not to answer 55 (27.5)
Abbreviations: n, number; SD, standard deviation; TAFE, Technical and
Further Education.
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RHEAULT ET AL.     |  2689
4.4  |  Data integration
While Younas and colleagues (2019) suggest displaying qualitative
excerpts within the joint display table, we have purposely presented
these separately in Table 2 to privilege the voice of participants. The
joint display table presents the meta-inferences (see Table 3) and
findings presented as pragmatic opportunities to address chronic
disease health literacy for First Nations people. There were both
confirmation and expansion meta-inferences made. Low functional
and critical health literacy abilities along with poor engagement
with healthcare providers confirmed the theme ‘It’s going to happen’. Inevitability and ambivalence towards developing a chronic
disease coupled with a sense of futility towards chronic disease selfmanagement were connected with poor health literacy and seemed
to be interlaced with the communities’ low level of active engagement in their own health care (HLQ domains 2, 3, 5, 6, 8, 9). This
dualistic cause and effect relationship seemed to shape health attitudes and beliefs about not being able to self-manage their chronic
disease/s.
Poor health literacy abilities across all HLQ domains strongly
confirmed and expanded upon the theme ‘Communication as a barrier and facilitator’. Health literacy enables communication and participation in health care; when there are deficits in health literacy
abilities, communication is compromised. Similarly, when healthcare
providers communicate poorly, this affects individuals’ abilities
to understand and effectively act upon aspects related to chronic
disease self-management. All participants voiced their aversion to
healthcare providers communicating with medical jargon which led
to confusion over instructions and unclear information regarding
treatment plans and poor explanation of their medical diagnosis. The
use of medical jargon caused a power differential. Participants stated
they felt embarrassed and ashamed to ask questions during health
appointments. This poor exchange in communication resulted in a
breakdown of the patient–healthcare provider relationship which
has affected the participant’s ability to manage their own health.
Low HLQ scores in domains 3, 4 and 5, which involve an individual’s
capability to use health information and their engagement and use
of health services, confirmed the qualitative theme ‘Communication
as a barrier and facilitator’. Domain 3, Actively managing health, is
a higher health literacy competency and refers to translating information or advice into effective self-management, coupled with
poor communication exchange does not promote health-promoting
behaviours or patient health activation. Participants identified that
yarning would be a strategy to enhance clinical communication.
The final theme ‘Recognising the past and looking’ was confirmed
and expanded by all HLQ domains. Most participants attributed the
unremitting life expectancy gap between First Nations people and
non-Indigenous Australians to consequences from past Australian

‘You can’t cure chronic disease, that’s what I was told by the
Doctors, you can’t really even control it … I’ve seen my brother
die from what I’ve got, and my father had the same thing’.
(Martha, age 62)
‘Half the time you can’t help yourself. I don’t want to end up on
dialysis and all that, that’s the problem. Even if you take your
medications and all that you end up on dialysis’. (Paul, age 40)
Communication as
a barrier and
facilitator
‘They said one word, but I didn’t understand them. Big words
they used. They said if you can keep it under the level of 10
you’re right. Yeah, so I don’t know whether its diabetic 1 or 2
or whatever you call them, I don’t know … They don’t explain
nothing properly’. (Kelly, age 69)
‘Well I can’t read much…it’d help me a lot if I could look at posters,
yeah, pictures can tell a lot of stories to me’. (Bob, age 63)
‘Yarning. I reckon have a big meeting somewhere invite everybody
and talk about it, there’s a lot of diabetes here in Mount Isa’.
(Margaret, age 69)
Recognising the past
and looking forward
‘I reckon if they [healthcare providers] do come around and talk to
people, it’d be a big help … so home visits, I can’t hardly move
around that much these days’. (Bob, age 63)
‘It’d be good if we could start [health education] when they’re old
enough to understand like grade 5 or whatever onwards. But,
preventing it from happening in the first place’. (Keith, age 83)
‘The biggest problem is, it’s [awareness of chronic disease] not
being taught in the school …We’ve sort of lost a generation
there somewhere along the line, but if we really want to make a
difference, I’m talking from grade 4 on’. (Charles, age 50)
TA B L E 2  Themes and participant
excerpts
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2690 |    RHEAULT ET AL.
TA B L E 3  Joint table display of the relationship of health literacy abilities and perceptions of chronic disease education and self-management in First Nations Australians

This theme captures
the inevitability
and ambivalence
related to the
participants’ chronic
disease diagnosis,
coupled with a futile
attitude towards
chronic disease
self-management.
1 (strongly disagree) – 4 (strongly agree) Several HLQ domains confirmed this theme. Many participants described a common
experience of ambivalence and articulated an inevitability that chronic disease was
‘going to happen’. This theme confirmed the low HLQ scores in domains pertaining
to functional health literacy (domains 2, 8, 9) and critical health literacy abilities
(domains 3, 5). Participants indicated that chronic disease self-management was
futile, confirming the low HLQ scores seen across these domains and the relatively
low engagement with healthcare providers (domain 6). Participants felt they did not
have sufficient health information to manage their health (domain 2) and struggled to
find, critically appraise and read and understand health information (domain 8, 5, 9)
to manage their chronic disease/s (domain 3).
2. Having sufficient health information 2.59 (0.52) [2.51, 2.66]
3. Actively managing health 2.64 (0.49) [2.57, 2.70]
5. Critical appraisal 2.41 (0.55) [2.33, 2.49]
Domains 6–9
1 (not easily) – 5 (very easily)
6. Active engagement with healthcare providers 3.14 (0.72) [3.01, 3.24]
8. Ability to find good health information 2.89 (0.73) [2.79, 2.99]
9. Reading and understanding health information 2.82 (0.78) [2.72, 2.93]
Communication as a
barrier and facilitator
Domains 1–5 Confirmation:
This theme describes
the challenges in
chronic disease selfmanagement and
dissatisfaction with
health education,
and ways to enhance
capability to engage
and provide services to
promote and maintain
health.
1 (strongly disagree) – 4 (strongly agree) The qualitative theme ‘communication as a barrier and facilitator’ confirmed all nine HLQ
domains. All participants described that healthcare providers communicated using
‘big words’ which impacted not only on their ability to actively engage with healthcare
providers (domain 6) but also upon the participants’ feelings of healthcare provider
support (domain 1). Participants frequently mentioned that they felt ashamed to
ask questions during clinical encounters which confers with low HLQ scores in
domain 1, and as such had a flow on effect in many facets. Poor communication
affects all aspects of health literacy. Receiving health information in a way that is not
meaningful and/or manageable is a major barrier to safe and effective health care
and is a reflection on healthcare providers and organisations falling short of providing
services enabling individuals to engage in their own health. Furthermore, a major
barrier to effective communication with healthcare providers was the difficulty most
participants mentioned in reading and understanding health information (domain 9)
thus not having sufficient information to manage their health (domain 2).
This theme also confirmed the low HLQ scores in domains 3, 4 and 5, which involve the
capability of the individual to engage with and use health information and health
services.
Expansion:
This theme identified that yarning and use of plain language could be a strategy to
overcome communication barriers which could assist with health literacy across all HLQ
domains. Yarning is a way to receive and discuss important information for First Nations
people in a non-threatening and culturally sensitive way; yarning could improve active
engagement with healthcare providers. Plain language is a health literacy principle
which cuts out medical jargon to explain medical conditions and treatment plans
applying in a clear and meaningful manner through the use of everyday words.
(Contnues)
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RHEAULT ET AL.     |  2691
Themes HLQ domains Mean (SD) [95% CI] Meta-inferences
1. Healthcare provider support 2.76 (0.52) [2.69, 2.83]
2. Having sufficient health information 2.59 (0.52) [2.51, 2.66]
3. Actively managing health 2.64 (0.49) [2.57, 2.70]
4. Social support for health 2.84 (0.52) [2.76, 2.91]
5. Critical appraisal 2.41 (0.55) [2.33, 2.49]
Domains 6–9
1 (not easily) – 5 (very easily)
6. Active engagement with healthcare providers 3.14 (0.72) [3.01, 3.24]
7. Navigating the healthcare system 3.13 (0.75) [3.01, 3.23]
8. Ability to find good health 2.89 (0.73) [2.79, 2.99]
9. Reading and understanding health information 2.82 (0.78) [2.72, 2.93]
Recognising the past and
looking forward
Domains 1–5 Confirmation:
This theme illustrates
consequences from
past Australian
government policies
and provides pragmatic
suggestions for the
provision of future
chronic disease
healthcare delivery and
education.
1 (strongly disagree) – 4 (strongly agree) Consequences from the past, specifically past Australian protection laws with attitudes
of racial superiority and paternalism have ongoing effects for many First Nations
people in many aspects of life.
1. Healthcare provider support 2.76 (0.52) [2.69, 2.83]
2. Having sufficient health information 2.59 (0.52) [2.51, 2.66]
3. Actively managing health 2.64 (0.49) [2.57, 2.70]
4. Social support for health 2.84 (0.52) [2.76, 2.91]
5. Critical appraisal 2.41 (0.55) [2.33, 2.49]
Domains 6–9 Expansion:
1 (not easily) – 5 (very easily) Participants described the importance of ‘starting with the children’ to prevent chronic
disease and could be a strategy to improve health literacy in the community.
6. Active engagement with healthcare providers 3.14 (0.72) [3.01, 3.24]
7. Navigating the healthcare system 3.13 (0.75) [3.01, 3.23]
8. Ability to find good health information 2.89 (0.73) [2.79, 2.99]
9. Reading and understanding health information 2.82 (0.78) [2.72, 2.93]
Abbreviations: CI, confidence interval; HLQ, Health Literacy Questionnaire, SD, standard deviation.
TA B L E 3  (Continued)
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2692 |    RHEAULT ET AL.
polices that seemed to contribute to poor health literacy abilities.
These past policies altered First Nations people’s experiences with
the healthcare system leading to ongoing effects for many participants including poor engagement with, and not feeling supported
by healthcare providers, lack of sufficient health information and
having a poor ability to read understand or critically appraise health
information. Participants recommended educating children is a way
forward to improve health outcomes and ultimately enable good
health literacy in the community.
5  |  DISCUSSION
This mixed methods study was the first to explore chronic disease
health literacy in First Nations people in Australia. We found that inadequate communication by healthcare providers was a major barrier
for individuals and, coupled with poor health literacy abilities, was
problematic to develop effective chronic disease self-management
knowledge and skills. The study also confirmed that individuals do
not feel well supported nor felt able to discuss health concerns with
their healthcare providers. Key factors influencing the maintenance
and management of chronic disease/s are the decisions and actions
individuals make regarding their health and lifestyle (Yadav et al.,
2018). If individuals are not provided with health information in an
appropriate way that not only has meaning to the individual, but also
supports the practical application of the message, then it is a missed
opportunity for a meaningful clinical encounter (Griva et al., 2020).
Health literacy is heavily reliant upon reciprocal communication between individuals and healthcare providers (Parnell et al., 2019), and
appropriate clinical communication is vital for its role in facilitating
and empowering active participation of individuals in their health
care (Warde et al., 2018). Improving health literacy leads to sustained behaviour change (Taggart et al., 2012). Awareness of health
literacy principles, in all clinical encounters, is essential especially in
complex chronic disease self-management (Hickey et al., 2018).
Experiences of being placed in a power differential due to poor
communication during clinical consults were common, as were feelings of embarrassment and being ashamed to ask further questions
due to not understanding medical jargon. For some, the therapeutic patient–healthcare provider relationship became irreparable.
Participants stressed the importance of healthcare providers to stop
conversing in ‘big words’ (medical jargon) and adopt the use of plain
language. Plain language is a universal health literacy principle, and
it facilitates positive patient–healthcare provider communication as
health information is delivered succinctly and uncomplicated which
then facilitates knowledge transfer in a meaningful and relatable
way (WHO, 2013). The complexity of health information and importantly the way in which it is delivered affects individual’s ability to
act in an informed way (Parnell et al., 2019).
Redressing the power differential experienced by First Nations
people receiving health care is imperative. Cultural safety goes
beyond cultural sensitivity and/or cultural competence to actively
enhance empowerment and enable consumer-driven pathways
through eliminating barriers and support autonomy for First Nations
people (Elvidge et al., 2019). Participants recommend yarning as a
method for effective and holistic communication transfer to assist
with chronic disease education and self-management. The recommendation of yarning as a clinical strategy was first described by
Bessarab and Ng’andu (2010) and has since been reported as a First
Nations community engagement strategy (Durey et al., 2016) and
outcome recommendation in studies examining chronic back pain
(Lin et al., 2014) and hypertension management (Cohn, 2011) in First
Nations people. This is the first study to our knowledge to present
yarning as a clinical strategy to improve First Nations people’s health
literacy in chronic disease. These pragmatic findings including utilising visual aids with plain language metaphors and stories to explain
health information at every step of the individual’s chronic disease
trajectory will assist with chronic disease management and enhance
the collaboration and engagement with healthcare providers to manage chronic diseases together. Pivotal to the effective delivery of
chronic disease health education first requires a patient–healthcare
provider relationship built on trust and mutual respect valuing the
communities need to promote opportunities for self-determination
(Lowell et al., 2012; Vass et al., 2011), and only then will the potential
to amend damaged patient–healthcare provider relationships occur.
Health literacy is contextual; it changes over time as health problems develop and evolves along with cognitive understandings as
well as the individual’s situation (Parnell et al., 2019). Health literacy
is both the process and the outcome of people’s interaction with
the culture and society in which they live and a key factor in building resilience and autonomy of the community through participation
of individuals (Vass et al., 2011). Integral to health literacy is being
aware of healthcare needs and weaknesses to then enable active
engagement and provide the appropriate care to individuals and the
wider community (WHO, 2013). The theme ‘It’s going to happen’ and
correspondingly low HLQ domain scores presents an inevitability of
developing a chronic disease and poor outcomes such as long-term
complications and premature death. For First Nations people in
Australia, community is viewed as an extended family (Waterworth
et al., 2014). Healthcare providers and health organisations ought to
take the opportunity in First Nations communities to revisit chronic
disease programmes and education, to be less reactive, more proactive and involve public health messages and ‘start with the children’
in a collaborative yarning approach with First Nations people which
promote good health to change the belief in the community that
chronic disease is not normal and expected.
5.1  |  Limitations
A mixed methods design enabled both richness of experiences and
measurement of health literacy to be studied concurrently. We presented meta-inferences in a joint display to illustrate the integration
of findings. There are, however, limitations to this study. This study
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RHEAULT ET AL.     |  2693
involved a specific First Nations community, and results may not be
generalisable to other First Nations populations; however, the recommendation of plain language by participants is a universal health
literacy principle and is worthy of consideration and implementation
in all healthcare settings. Second, we did not include participants
with a broader range of chronic diseases (e.g. cancer, arthritis and
mental health conditions), necessitating further health literacy research in this population. Previous research has indicated concordance between HLQ item intent and interview narratives (Hawkins
et al., 2017), although further research is needed to demonstrate
construct validity of the HLQ in First Nations people. Lastly, as both
health literacy and experiences of living with one or more chronic
diseases are contextual and change overtime, the meta-inferences
reported in this study reflect a snapshot in time.
6  |  CONCLUSION
A communication gap exists between healthcare providers and First
Nations people impacting on health literacy and ultimately health
outcomes. Acknowledging that patient-healthcare provider communication is a symbiotic partnership, and First Nations people must be
the dominant partner in the care process is the first step forward.
Health literacy principles including the use of plain language by
healthcare providers during any encounter need to be delivered in
a culturally safe way and ought to be embedded in everyday clinical
practice to better support chronic disease self-management.
6.1  |  Relevance to Clinical Practice
It is critical that nurses have an understanding of health literacy and
that it is not merely a functional ability to read and write; it is primarily about communication. Health literacy is not purely an individual’s
responsibility, it is a responsibility of all healthcare professionals
to deliver health information (patient education) in a way which is
meaningful for the individual so that effective chronic disease selfmanagement abilities are developed and sustained. Central to promoting active engagement between First Nations people and nurses
is the delivery of respectful, culturally appropriate and safe care. By
using yarning and plain language alongside visual aids is an effective
education technique which aims to improve health literacy.
ACKNOWLEDG EMENTS
We respectfully acknowledge the Traditional Owners of the land in
which we conducted our study. We acknowledge the significant contribution from the participants of this study and the valuable input from
Aboriginal Health Workers Ayrton Marshall and Rhonda Tim, Kalkadoon
Elders and the Kalkadoon Native Title Aboriginal Corporation.
CONFLIC T OF INTERE S T
No conflict of interest has been declared by the author(s).
AUTHOR CONTRIBUTIONS
HR, FC and AB made substantial contributions to conception and
design, or acquisition of data, or analysis and interpretation of data.
HR, FC and AB involved in drafting the manuscript or revising it critically for important intellectual content. HR, FC and AB given final
approval of the version to be published. Each author should have
participated sufficiently in the work to take public responsibility for
appropriate portions of the content. HR, FC and AB agreed to be
accountable for all aspects of the work in ensuring that questions
related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
ORCID
Haunnah Rheault https://orcid.org/0000-0001-6552-9202
Fiona Coyer https://orcid.org/0000-0002-8467-0081
Ann Bonner https://orcid.org/0000-0001-9920-6743
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SUPPORTING INFORMATION
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Supporting Information section.
How to cite this article: Rheault H, Coyer F, Bonner A. Chronic
disease health literacy in First Nations people: A mixed
methods study. J Clin Nurs. 2021;30:2683–2695. https://doi.
org/10.1111/jocn.15757
13652702, 2021, 17-18, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jocn.15757 by Scholarly Resource Services, Wiley Online Library on [03/01/2023]. 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