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"Gurruwiwi, George"
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“Putting the power back into community”: A mixed methods evaluation of a chronic hepatitis B training course for the Aboriginal health workforce of Australia’s Northern Territory
by
Dhagapan, Amanda
,
Bukulatjpi, Sarah Mariyalawuy
,
Davies, Jane
in
Analysis
,
Attitudes
,
Australia
2024
Chronic hepatitis B (CHB) is endemic in the Aboriginal and Torres Strait Islander population of Australia's Northern Territory. Progression to liver disease can be prevented if holistic care is provided. Low health literacy amongst health professionals is a known barrier to caring for people living with CHB. We co-designed and delivered a culturally safe \"Managing hepatitis B\" training course for the Aboriginal health workforce. Here, we present an evaluation of the course.
1. To improve course participants CHB-related knowledge, attitudes, and clinical practice. 2. To evaluate the \"Managing hepatitis B\" training course. 3. To enable participants to have the skills and confidence to be part of the care team.
We used participatory action research and culturally safe principles. We used purpose-built quantitative and qualitative evaluation tools to evaluate our \"Managing hepatitis B\" training course. We integrated the two forms of data, deductively analysing codes, grouped into categories, and assessed pedagogical outcomes against Kirkpatrick's training evaluation framework.
Eight courses were delivered between 2019 and 2023, with 130 participants from 32 communities. Pre- and post-course questionnaires demonstrated statistically significant improvements in all domains, p<0.001 on 93 matched pairs. Thematic network analysis demonstrated high levels of course acceptability and significant knowledge acquisition. Other themes identified include cultural safety, shame, previous misinformation, and misconceptions about transmission. Observations demonstrate improvements in post-course engagement, a deep understanding of CHB as well as increased participation in clinical care teams.
The \"Managing hepatitis B\" training course led to a sustained improvement in the knowledge and attitudes of the Aboriginal health workforce, resulting in improved care and treatment uptake for people living with CHB. Important non-clinical outcomes included strengthening teaching and leadership skills, and empowerment.
Journal Article
The relative validity of the updated Menzies Remote Short-Item Dietary Assessment Tool (MRSDAT) for use with remote Aboriginal and Torres Strait Islander children and adults
2025
Background
This study aimed to determine the relative validity of dietary quality index scores estimated using the updated version of the Menzies Remote Short-item Dietary Assessment Tool (MRSDAT), a food frequency questionnaire developed for use with remote Indigenous communities in Australia.
Methods
This validation study compares scores derived from the updated MRSDAT with those derived from 24-h recalls. Participants from nine remote communities across three discrete regions of Australia (Central Australia, North Northern Territory and Cape York) participated in June–September 2021, or May–July 2022. Participants were Indigenous children aged six months to five years, pregnant and/or breastfeeding Indigenous women, and overweight adult Indigenous males and females. The agreement between methods was explored using Lin’s concordance correlation coefficient (CCC), Bland–Altman plots, weighted Cohen’s kappa, paired samples t-tests and Wilcoxon signed-rank tests. Primary comparisons were completed for the whole sample, and primary and secondary comparisons for only participants with ≥ 2 × 24 h recalls.
Results
Ninety-nine participants were recruited. The MRSDAT estimated dietary quality index scores 0.31/100 points higher than 24-h recall estimates for participants with ≥ 2 × 24-h recalls, and 0.18/100 points higher for all participants, with consistent results for adults and children (CCC = Rc 0.58, 95% CI 0.39, 0.72).
Conclusions
Updates to the MRSDAT have resulted in dietary quality index scores highly comparable to those derived from 24-h recalls. The MRSDAT has the practical advantages of speed and convenience for research purposes, and the built-in instant dietary feedback feature has application to service delivery settings given the robust results demonstrated in this validation study.
Journal Article
A “one stop liver shop” approach improves the cascade-of-care for Aboriginal and Torres Strait Islander Australians living with chronic hepatitis B in the Northern Territory of Australia: results of a novel care delivery model
2020
Background
Aboriginal and Torres Strait Islander Australians are disproportionately affected by Chronic Hepatitis B (CHB) with a prevalence of 6.08% in the Northern Territory (NT) and liver cancer rates 6 times higher than non-Indigenous Australians. Without appropriate care, overall 25% of those living with CHB will die from either liver failure or liver cancer, outcomes that can be minimised with regular follow up, antiviral treatment and hepatocellular carcinoma (HCC) screening. This care including antiviral treatment is publicly funded in the Australian setting however the care cascade still shows inequities in access to treatment for Aboriginal Australians. We describe the impact of a mobile care delivery model, “One Stop Liver Shop”, on the cascade of care for people living with CHB in a remote Australian setting.
Methods
A retrospective analysis was performed for CHB care received between 2013 and 2018 in one very remote Northern Territory community, where the “One Stop Liver Shop” was iteratively developed with the community. Patients with positive Hepatitis B virus surface antigen (HBsAg) were identified through electronic medical records. Proportions of patients who are up-to-date with monitoring investigations and HCC screening were evaluated and compared to national guidelines and targets.
Results
Eighty-three HBsAg positive patients were evaluated. Eighty-eight percent were engaged in care, 16% of whom were receiving antiviral treatment. Liver function tests (LFT) were up to date in 71% of patients in 2013 and 88% in 2018. Viral load (VL) monitoring was up to date for 61 (73%) of patients. There were 44 patients in whom HCC screening was indicated. Of these, 38 (86.4%) were up to date with 6 monthly alpha-fetoprotein (AFP), 35 (79.5%) were up to date with 6 monthly liver ultrasound scan (USS), and 34 (77.3%) were up-to-date for both.
Conclusions
A “One Stop Liver Shop” developed with and including Aboriginal Health Practitioners bridges gaps in the availability of services to those living with CHB in a very remote community and improves the cascade of care.
Journal Article
Capturing Household Structure and Mobility within and between Remote Aboriginal Communities in Northern Australia Using Longitudinal Data: A Pilot Study
by
Gibney, Katherine B.
,
McVernon, Jodie
,
Chisholm, Rebecca H.
in
Australia - epidemiology
,
Australian Aboriginal and Torres Strait Islander Peoples
,
Child
2022
Cultural practices and development level can influence a population’s household structures and mixing patterns. Within some populations, households can be organized across multiple dwellings. This likely affects the spread of infectious disease through these communities; however, current demographic data collection tools do not record these data. Methods: Between June and October 2018, the Contact And Mobility Patterns in remote Aboriginal Australian communities (CAMP-remote) pilot study recruited Aboriginal mothers with infants in a remote northern Australian community to complete a monthly iPad-based contact survey. Results: Thirteen mother–infant pairs (participants) completed 69 study visits between recruitment and the end of May 2019. Participants reported they and their other children slept in 28 dwellings during the study. The median dwelling occupancy, defined as people sleeping in the same dwelling on the previous night, was ten (range: 3.5–25). Participants who completed at least three responses (n = 8) slept in a median of three dwellings (range: 2–9). Each month, a median of 28% (range: 0–63%) of the participants travelled out of the community. Including these data in disease transmission models amplified estimates of infectious disease spread in the study community, compared to models parameterized using census data. Conclusions: The lack of data on mixing patterns in populations where households can be organized across dwellings may impact the accuracy of infectious disease models for these communities and the efficacy of public health actions they inform.
Journal Article
Enteric pathogen infection and consequences for child growth in young Aboriginal Australian children: a cross-sectional study
by
Gurruwiwi, George
,
Dhurrkay, Roslyn
,
Ballard, Susan A.
in
Aboriginal
,
Acetic acid
,
Adenovirus Infections, Human - epidemiology
2021
Background
To determine the prevalence of enteric infections in Aboriginal children aged 0–2 years using conventional and molecular diagnostic techniques and to explore associations between the presence of pathogens and child growth.
Methods
Cross-sectional analysis of Aboriginal children (
n
= 62) residing in a remote community in Northern Australia, conducted from July 24th - October 30th 2017. Stool samples were analysed for organisms by microscopy (directly in the field and following fixation and storage in sodium-acetate formalin), and by qualitative PCR for viruses, bacteria and parasites and serology for
Strongyloides
-specific IgG. Child growth (height and weight) was measured and z scores calculated according to WHO growth standards.
Results
Nearly 60% of children had evidence for at least one enteric pathogen in their stool (37/62). The highest burden of infection was with adenovirus/sapovirus (22.9%), followed by astrovirus (9.8%) and
Cryptosporidium hominis/parvum
(8.2%). Non-pathogenic organisms were detected in 22.5% of children. Ten percent of children had diarrhea at the time of stool collection. Infection with two or more pathogens was negatively associated with height for age z scores (− 1.34, 95% CI − 2.61 to − 0.07), as was carriage of the non-pathogen
Blastocystis hominis
(− 2.05, 95% CI - 3.55 to − 0.54).
Conclusions
Infants and toddlers living in this remote Northern Australian Aboriginal community had a high burden of enteric pathogens and non-pathogens. The association between carriage of pathogens/non-pathogens with impaired child growth in the critical first 1000 days of life has implications for healthy child growth and development and warrants further investigation. These findings have relevance for many other First Nations Communities that face many of the same challenges with regard to poverty, infections, and malnutrition.
Journal Article
“They feel shame sometime, but that is why we need to talk to them…we need to tell them how important it is not to feel shame”: Hepatitis B related shame and improving hepatitis B care in Aboriginal and Torres Strait Islander communities in the Top End of the Northern Territory, according to the Aboriginal health workforce
by
Gurruwiwi, George
,
Sullivan, Richard P.
,
Bukulatjpi, Sarah Mariyalawuy
in
Aboriginal and Torres Strait Islander health
,
Health Informatics
,
Health Policy
2024
Background
The Aboriginal health workforce has unique insights given their healthcare experience and interactions with their communities. The aims of this project were to explore their perceptions of hepatitis B related shame and ways to improve hepatitis B care in Aboriginal and Torres Strait Islander communities of Northern Territory’s Top End, Australia.
Methods
We conducted a qualitative study with guidance from the Menzies School of Health Research Infectious Diseases Indigenous Reference Group. The Aboriginal health workforce was asked to participate in semi-structured interviews exploring hepatitis B related shame and ways to improve hepatitis B care. Qualitative data were evaluated using reflexive thematic analysis.
Results
There were fifteen semi-structured interviews with participants representing eight different communities. The experience of shame was reported by the Aboriginal health workforce to be common for individuals diagnosed with hepatitis B and comprised feelings of fear related to transmitting the virus, to being isolated, and to being at fault. Shame was mediated by poor health literacy, communication, the lack of culturally safe spaces and was perpetuated by intersecting stereotypes. Improvements in care can be achieved by utilising the Aboriginal health workforce more effectively, improving communication and the availability of culturally safe spaces, emphasising community connection, and reframing hepatitis B as a chronic condition.
Conclusions
Hepatitis B related shame was an important issue and impactful in Aboriginal and Torres Strait Islander communities in the Top End of the Northern Territory. There were many facets to shame in these communities and it was mediated by several factors. The Aboriginal health workforce has emphasised several pathways to improve care and diminish the impact of shame, such as improving communication and the availability of culturally safe spaces.
Journal Article
“The most culturally safe training I’ve ever had”: the co-design of a culturally safe Managing hepatitis B training course with and for the Aboriginal health workforce of the Northern Territory of Australia
by
Bukulatjpi, Sarah Mariyalawuy
,
Davies, Jane
,
Vintour-Cesar, Emily
in
Aboriginal and Torres Strait Islander health
,
Aboriginal health workforce
,
Australian Aboriginal and Torres Strait Islander Peoples
2023
Background
The Aboriginal health workforce provide responsive, culturally safe health care. We aimed to co-design a culturally safe course with and for the Aboriginal health workforce. We describe the factors which led to the successful co-design, delivery, and evaluation of the “Managing hepatitis B” course for the Aboriginal health workforce.
Methods
A Participatory Action Research approach was used, involving ongoing consultation to iteratively co-design and then develop course content, materials, and evaluation tools. An Aboriginal and Torres Strait Islander research and teaching team received education in chronic hepatitis B and teaching methodologies. Pilot courses were held, in remote communities of the Northern Territory, using two-way learning and teach-back methods to further develop the course and assess acceptability and learnings. Data collection involved focus group discussions, in-class observations, reflective analysis, and use of co-designed and assessed evaluation tools.
Results
Twenty-six participants attended the pilot courses. Aboriginal and Torres Strait Islander facilitators delivered a high proportion of the course. Evaluations demonstrated high course acceptability, cultural safety, and learnings. Key elements contributing to success and acceptability were acknowledging, respecting, and integrating cultural differences into education, delivering messaging and key concepts through an Aboriginal and Torres Strait Islander lens, using culturally appropriate approaches to learning including storytelling and visual teaching methodologies. Evaluation of culturally safe frameworks and findings from the co-design process led to the creation of a conceptual framework, underpinned by meeting people’s basic needs, and offering a safe and comfortable environment to enable productive learning with attention to the following: sustenance, financial security, cultural obligations, and gender and kinship relationships.
Conclusions
Co-designed education for the Aboriginal health workforce must embed principles of cultural safety and meaningful community consultation to enable an increase in knowledge and empowerment. The findings of this research can be used to guide the design of future health education for First Nations health professionals and to other non-dominant cultures. The course model has been successfully transferred to other health issues in the Northern Territory.
Journal Article
An evaluation and refinement of the “Hep B Story” app, tailored to meet the community’s cultural needs
by
Bukulatjpi, Sarah Mariyalawuy
,
Davies, Jane
,
Venkatesan, Sudharsan
in
Aboriginal and Torres Strait Islander peoples
,
Adult
,
Collaboration
2024
Background
Hepatitis B is endemic amongst the Australian Aboriginal population in the Northern Territory. A participatory action research project identified the lack of culturally appropriate education tools and led to the development of the “Hep B Story” app in the Aboriginal language Yolŋu Matha. This paper describes a formal evaluation of the app’s first version, which informed improvements and translation into a further ten Aboriginal languages.
Methods
The evaluation employed Participatory Action Research (PAR) principles to work within Indigenous research methodologies and prioritise Indigenous knowledge to improve the app iteratively. Semi-structured interviews and focus groups were conducted across the Northern Territory with 11 different language groups. Local Community Based Researchers and Aboriginal Research team members coordinated sessions. The recorded, translated conversations were transcribed verbatim and thematically analysed using an inductive and deductive approach.
Results
Between November 2018 and September 2020, 94 individuals from 11 language groups participated in 25 semi-structured interviews and 10 focus groups. All participants identified as Aboriginal. Most participants felt the app would be culturally appropriate for Aboriginal communities in the Northern Territory and improve knowledge surrounding hepatitis B. The information gathered from these interviews allowed for identifying five main themes: support for app, relationships, concept versus language, shame, and perceptions of images, along with errors that required modification.
Conclusions
A “real-life” evaluation of the app was comprehensively completed using a PAR approach blended with Indigenous research methods. This evaluation allowed us to develop an updated and enhanced version of the app before creating the additional ten language versions. An iterative approach alongside strong community engagement was pivotal in ensuring the app’s cultural safety and appropriateness. We recommend avoiding the use of knowledge-based evaluations in an Aboriginal setting to ensure relevant and culturally appropriate feedback is obtained.
Journal Article
Disease progression & treatment need in sub-genotype C4 hepatitis B infection: a retrospective cohort study in the Northern Territory, Australia
2025
Background
In the Northern Territory (NT) of Australia, First Nations people with chronic hepatitis B (CHB) are infected with a unique sub-genotype, C4, which contains mutations linked to progressive fibrosis and hepatocellular carcinoma. This cohort study aimed to investigate disease progression in C4 sub-genotype infection and estimate how many untreated individuals may benefit from antiviral therapy with broadening treatment indications.
Methods
Included individuals were part of Hep B PAST, a co-designed program to improve the cascade of care for people living with CHB in the NT. Disease phase and cirrhotic status were determined algorithmically using clinical and laboratory data at two time points. Loss of HBV antigens was assessed longitudinally. Treatment need was assessed cross-sectionally in the cohort at study completion. Key outcomes were estimated rates of HBsAg/HBeAg loss in sub-genotype C4 infection and quantification of how many untreated individuals qualify for therapy under current Australian and expanded global treatment guidelines.
Results
HBsAg and HBeAg loss occurred at a rate of 1·04 and 8·06 events/100 person-years respectively (7342·6 and 545·6 years follow up). 783 people living with CHB were included (40% female, median age 48 years). Of these, 16% had cirrhosis (an additional 6% having FibroScan > 7 kPa, meaning 22% had cirrhosis or significant fibrosis) and 25% were prescribed antivirals. Only 6·7% of untreated individuals were treatment eligible under current guidelines. Using the 2024 World Health Organisation guidelines, this increased to 50% due mostly to fibrosis and population prevalence of diabetes.
Conclusions
Despite advanced liver disease in people living with CHB in the NT, rates of antigen loss in sub-genotype C4 hepatitis B infection are similar to other genotypes. Further work is needed to understand drivers of cirrhosis and significant fibrosis in this population.
Journal Article
Indigenous infants in remote Australia retain an ancestral gut microbiome despite encroaching Westernization
2025
Studies of traditional Indigenous compared to ‘Western’ gut microbiomes are underrepresented, and lacking in young children, limiting knowledge of early-life microbiomes in different cultural contexts. Here we analyze the gut metagenomes of 50 Indigenous Australian infants (median age
Journal Article
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