Public health interventions successfully mitigated multiple incursions of SARS-CoV-2 Delta variant in the Australian Capital Territory.

The COVID-19 pandemic has presented a unique opportunity to understand how real-time pathogen genomics can be used for large-scale outbreak investigations. On 12 August 2021, the Australian Capital Territory (ACT) detected an incursion of the SARS-CoV-2 Delta (B.1.617.2) variant. Prior to this date, SARS-CoV-2 had been eliminated locally since 7 July 2020. Several public health interventions were rapidly implemented in response to the incursion, including a territory-wide lockdown and comprehensive contact tracing. The ACT has not previously used pathogen genomics at a population level in an outbreak response; therefore, this incursion also presented an opportunity to investigate the utility of genomic sequencing to support contact tracing efforts in the ACT. Sequencing of >75% of the 1793 laboratory-confirmed cases during the 3 months following the initial notification identified at least 13 independent incursions with onwards spread in the community. Stratification of cases by genomic cluster revealed that distinct cohorts were affected by the different incursions. Two incursions resulted in most of the community transmission during the study period, with persistent transmission in vulnerable sections of the community. Ultimately, both major incursions were successfully mitigated through public health interventions, including COVID-19 vaccines. The high rates of SARS-CoV-2 sequencing in the ACT and the relatively small population size facilitated detailed investigations of the patterns of virus transmission, revealing insights beyond those gathered from traditional contact tracing alone. Genomic sequencing was critical to disentangling complex transmission chains to target interventions appropriately.

Vaccine breakthrough infections in a highly-vaccinated Australian population during a SARS-CoV-2 Delta outbreak.

Abstract: Over 80% of residents in the Australian Capital Territory were fully vaccinated within 10 weeks of a SARS-CoV-2 Delta variant outbreak. Of the outbreak's 1,545 cases, 10% were breakthrough infections. The incidence of infections among fully- and partially-vaccinated people was 98.5% and 90% lower, respectively, than for unvaccinated people.

"That Heart Sickness": Young Aboriginal People's Understanding of Rheumatic Fever.

High rates of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia predominate in young Aboriginal people highlighting underlying racial and equity issues.  This article focuses on the perceptions of the disease among young Aboriginal people living in remote Australia. Participant understanding was constrained by clinicians' use of language rooted in biomedicine and delivered through English, a second language for all participants. Clinicians' communicative competency is a social determinant of Aboriginal health. We recommend that the use of Aboriginal languages be prioritized in health services caring for Aboriginal people and that biomedical dominance in the services be relinquished.

Improving Delivery of Secondary Prophylaxis for Rheumatic Heart Disease in a High-Burden Setting: Outcome of a Stepped-Wedge, Community, Randomized Trial.

BACKGROUND: Health system strengthening is needed to improve delivery of secondary prophylaxis against rheumatic heart disease. METHODS AND RESULTS: We undertook a stepped-wedge, randomized trial in northern Australia. Five pairs of Indigenous community clinics entered the study at 3-month steps. Study phases comprised a 12 month baseline phase, 3 month transition phase, 12 month intensive phase and a 3- to 12-month maintenance phase. Clinics received a multicomponent intervention supporting activities to improve penicillin delivery, aligned with the chronic care model, with continuous quality-improvement feedback on adherence. The primary outcome was the proportion receiving ≥80% of scheduled penicillin injections. Secondary outcomes included "days at risk" of acute rheumatic fever recurrence related to late penicillin and acute rheumatic fever recurrence rates. Overall, 304 patients requiring prophylaxis were eligible. The proportion receiving ≥80% of scheduled injections during baseline was 141 of 304 (46%)-higher than anticipated. No effect attributable to the study was evident: in the intensive phase, 126 of 304 (41%) received ≥80% of scheduled injections (odds ratio compared with baseline: 0.78; 95% confidence interval, 0.54-1.11). There was modest improvement in the maintenance phase among high-adhering patients (43% received ≥90% of injections versus 30% [baseline] and 28% [intensive], P<0.001). Also, the proportion of days at risk in the whole cohort decreased in the maintenance phase (0.28 versus 0.32 [baseline] and 0.34 [intensive], P=0.001). Acute rheumatic fever recurrence rates did not differ between study sites during the intensive phase and the whole jurisdiction (3.0 versus 3.5 recurrences per 100 patient-years, P=0.65). CONCLUSIONS: This strategy did not improve adherence to rheumatic heart disease secondary prophylaxis within the study time frame. Longer term primary care strengthening strategies are needed. CLINICAL TRIAL REGISTRATION: URL: www.anzctr.org.au. Unique identifier: ACTRN12613000223730.

Qualitative Evaluation of a Complex Intervention to Improve Rheumatic Heart Disease Secondary Prophylaxis.

BACKGROUND: Rheumatic heart disease is a high-burden condition in Australian Aboriginal communities. We evaluated a stepped-wedge, community, randomized trial at 10 Aboriginal communities from 2013 to 2015. A multifaceted intervention was implemented using quality improvement and chronic care model approaches to improve delivery of penicillin prophylaxis for rheumatic heart disease. The trial did not improve penicillin adherence. This mixed-methods evaluation, designed a priori, aimed to determine the association between methodological approaches and outcomes. METHODS AND RESULTS: An evaluation framework was developed to measure the success of project implementation and of the underlying program theory. The program theory posited that penicillin delivery would be improved through activities implemented at clinics that addressed elements of the chronic care model. Qualitative data were derived from interviews with health-center staff, informants, and clients; participant observation; and project officer reports. Quantitative data comprised numbers and types of "action items," which were developed by participating clinic staff with project officers to improve delivery of penicillin injections. Interview data from 121 health-center staff, 22 informants, and 72 clients revealed barriers to achieving the trial's aims, including project-level factors (short trial duration), implementation factors (types of activities implemented), and contextual factors (high staff turnover and the complex sociocultural environment). Insufficient actions were implemented addressing "self-management support" and "community linkage" streams of the chronic care model. Increased momentum was evident in later stages of the study. CONCLUSIONS: The program theory underpinning the study was sound. The limited impact made by the study on adherence was attributable to complex implementation challenges.

Transition to adult care for Aboriginal children with rheumatic fever: a review informed by a focussed ethnography in northern Australia.

Aboriginal children in northern Australia have high rates of rheumatic fever and rheumatic heart disease, which are chronic conditions because of the need for long-term treatment and monitoring. This article critically reviews the literature on transition to adult care for children with chronic conditions and considers applicability to the care of these children. The review was merged with findings from a focussed ethnography conducted in four remote Aboriginal communities with young people who have these conditions. Transition care aims to support adolescents on a healthcare trajectory to facilitate best long-term health and personal outcomes. Characteristics of the two medical conditions, the children and their local health services in northern Australia were generalised and merged with principles from the transition care literature, including policies governing transition clinics in urban locations. In this setting, the challenge is to transition Aboriginal children safely through to adulthood without rheumatic heart damage rather than to a separate health service on reaching adulthood. Recommended tailoring of transition care involves engaging and valuing local navigators who can address language and cultural barriers to provide a sustainable alternative to transition coordinators in mainstream programs. This has potential to improve care without further burdening overstretched clinical resources.

Aboriginal children and penicillin injections for rheumatic fever: how much of a problem is injection pain?

OBJECTIVE: To explore young Aboriginal people's and clinicians' experiences of injection pain for the 10 years of penicillin injections children are prescribed to prevent rheumatic fever recurrences. METHODS: Aboriginal children on the penicillin regimen and clinicians were purposively recruited from four remote sites in Australia. Semi-structured interviews and participant observations were conducted. Views were synthesised and thematically analysed. RESULTS: A total of 29 Aboriginal children and 59 clinicians were interviewed. Sixteen participants appeared to become accustomed to the injection pain, eight did not find pain an issue, and five found injection pain difficult. A further five believed the injections made them unwell. Patients expressed varying abilities to negotiate with clinicians about the use of pain reduction measures. Clinicians revealed good knowledge of pain reduction measures, but offered them inconsistently. All clinicians found administering the injections distressing. CONCLUSION: Repeated painful procedures in children necessitate well-planned and child-focused care. Current practices are not in line with guidance from the Royal Australasian College of Physicians about effects of repeated painful procedures on children. Initiating the long-term injection regimen for rheumatic fever is a special event requiring expert input. A newly reported finding of a subset of young people feeling unwell after receiving the injection requires further investigation. Implications for public health: Improvement of local and jurisdictional guidelines on use of pain reduction measures for children who have been prescribed repeated painful injections for rheumatic fever is needed.

The epidemiology of tuberculosis in the Australia Capital Territory, 2006-2015.

AIM: To review the epidemiology of tuberculosis (TB) in the Australian Capital Territory (ACT) over a 10 year period. Methods: A retrospective analysis of the ACT TB notification data from 1 January 2006 to 31 December 2015 was conducted. RESULTS: Over the 10 year study period there were 171 TB notifications in the ACT, with an increasing trend in the number of notifications over time. The median age of cases was 36 years (range 14 to 91 years) and 53.8% of cases were male. Most TB cases (84.2%) were born overseas. Among Australian-born cases the most common risk factor for acquiring TB was close/household contact with a known case of TB (30.8%). The most common risk factor in the overseas-born population was past travel or residence in a high-risk country (86.9%). Of all the TB cases notified, 82.4% successfully completed treatment. CONCLUSION: There was an increasing trend in the number of TB notifications in the ACT over the study period. The highest rate of TB notifications remained in the overseas-born population; with other studies suggesting this is commonly due to reactivation of latent tuberculosis infection (LTBI). As Australia starts working towards TB elimination, options for the screening and management of LTBI, especially in high risk populations, need to be explored.

Challenges in monitoring the development of young children in remote Aboriginal health services: clinical audit findings and recommendations for improving practice.

INTRODUCTION: Early detection of developmental difficulties is universally considered a necessary public health measure, with routine developmental monitoring an important function of primary healthcare services. This study aimed to describe the developmental monitoring practice in two remote Australian Aboriginal primary healthcare services and to identify gaps in the delivery of developmental monitoring services. METHODS: A cross-sectional baseline medical record audit of all resident children aged less than 5 years in two remote Aboriginal health centres in the Northern Territory (NT) in Australia was undertaken between December 2010 and November 2011. RESULTS: A total of 151 medical records were audited, 80 in Community A and 71 in Community B. Developmental checks were more likely among children who attended services more regularly. In Community A, 63 (79%) medical records had some evidence of a developmental check and in Community B there were 42 (59%) medical records with such evidence. However, there was little indication of how assessments were undertaken: only one record noted the use of a formal developmental screening measure. In Community A, 16 (16%) records documented parent report and 20 (20%) documented staff observations, while in Community B, the numbers were 2 (3%) and 11 (19%), respectively. The overall recorded prevalence of developmental difficulties was 21% in Community A and 6% in Community B. CONCLUSIONS: This is the first study to describe the quality of developmental monitoring practice in remote Australian Aboriginal health services. The audit findings suggest the need for a systems-wide approach to the delivery and recording of developmental monitoring services. This will require routine training of remote Aboriginal health workers and remote area nurses in developmental monitoring practice including the use of a culturally appropriate, structured developmental screening measure.

Improving delivery of secondary prophylaxis for rheumatic heart disease in remote Indigenous communities: study protocol for a stepped-wedge randomised trial.

BACKGROUND: Rheumatic heart disease (RHD), caused by acute rheumatic fever (ARF), is a major health problem in Australian Aboriginal communities. Progress in controlling RHD requires improvements in the delivery of secondary prophylaxis, which comprises regular, long-term injections of penicillin for people with ARF/RHD. METHODS/DESIGN: This trial aims to improve uptake of secondary prophylaxis among Aboriginal people with ARF/RHD to reduce progression or worsening of RHD. This is a stepped-wedge, randomised trial in consenting communities in Australia's Northern Territory. Pairs of randomly-chosen clinics from among those consenting enter the study at 3-monthly steps. The intervention to which clinics are randomised comprises a multi-faceted systems-based package, in which clinics are supported to develop and implement strategies to improve penicillin delivery, aligned with elements of the Chronic Care Model. Continuous quality improvement processes will be used, including 3-monthly feedback to clinic staff of adherence rates of their ARF/RHD clients. The primary outcome is the proportion of people with ARF/RHD receiving ≥ 80% of scheduled penicillin injections over a minimum 12-month period. The sample size of 300 ARF/RHD clients across five community clusters will power the study to detect a 20% increase in the proportion of individuals achieving this target, from a worrying low baseline of 20%, to 40 %. Secondary outcomes pertaining to other measures of adherence will be assessed. Within the randomised trial design, a mixed-methods evaluation will be embedded to evaluate the efficiency, effectiveness, impact and relevance, sustainability, process and fidelity, and performance of the intervention. The evaluation will establish any causal link between outcomes and the intervention. The planned study duration is from 2013 to 2016. DISCUSSION: Continuous quality improvement has a strong track record in Australia's Northern Territory, and its use has resulted in modest benefits in a pilot, non-randomised ARF/RHD study. If successful, this new intervention using the Chronic Care Model as a scaffold and evaluated using a well-developed theory-based framework, will provide a practical and transferable approach to ARF/RHD control. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry: ACTRN12613000223730. Date registered: 25 February 2013.

Influenza vaccination coverage among pregnant Indigenous women in the Northern Territory of Australia.

Pregnant Aboriginal and Torres Strait Islander women are at particular risk of severe illness and high attack rates of influenza infection. In Australia, routine seasonal influenza vaccination is currently strongly recommended for all pregnant women and women planning pregnancy, and is provided free of charge for all pregnant women. We sought to determine vaccination coverage, describe the trends and characteristics associated with influenza vaccine uptake and determine the validity of self-reported influenza vaccination in a population of Indigenous pregnant women who were participants of a vaccine trial, prior to and during the 2009 H1N1 influenza pandemic. Vaccine coverage over the study period was 16% (35/214), increasing from 2.2% (3/136) in the period preceding the pandemic (2006-2009) to 41% (32/78) in the intra-pandemic period (2009-2010). Self-report was not a reliable estimate of verified vaccination status in the pre-pandemic period (κ=0.38) but was reliable in the intra-pandemic period (κ=0.91). None of the socio-demographic characteristics that we examined were associated with vaccine uptake. Whilst the increase in maternal influenza coverage rates are encouraging and indicate a willingness of pregnant Indigenous women to be vaccinated, the majority of women remained unvaccinated. Activities to improve influenza vaccination coverage for Indigenous pregnant women and monitor vaccine uptake remain a priority. Commun Dis Intell 2016;40(3):E340-E346.

Adaptation of the Ages and Stages Questionnaire for Remote Aboriginal Australia.

A key challenge to providing quality developmental care in remote Aboriginal primary health care (PHC) centers has been the absence of culturally appropriate developmental screening instruments. This study focused on the cross-cultural adaptation of the Ages and Stages Questionnaires, 3rd edition (ASQ-3), with careful attention to language and culture. We aimed to adapt the ASQ-3 for use with remote dwelling Australian Aboriginal children, and to investigate the cultural appropriateness and feasibility of the adapted ASQ-3 for use in this context. We undertook a qualitative study in two remote Australian Aboriginal communities, using a six-step collaborative adaptation process. Aboriginal Health Workers (AHWs) were trained to use the adapted ASQ-3, and follow-up interviews examined participants' views of the cultural acceptability and usefulness of the adapted instrument. The adapted ASQ-3 was found to have high face validity and to be culturally acceptable and relevant to parents, AHWs, and early childhood development experts.

Culturally Appropriate Training for Remote Australian Aboriginal Health Workers: Evaluation of an Early Child Development Training Intervention.

OBJECTIVE: This study aimed to design, implement, and evaluate training in early childhood development (ECD) and in the use of a culturally adapted developmental screening tool, for remote Australian Aboriginal Health Workers (AHWs) and other remote health practitioners. METHOD: A case-study evaluation framework was adopted. Two remote Australian Aboriginal health services were selected as case-study sites. Materials review, semistructured interviews, posttraining feedback surveys, and workplace observations contributed to the evaluation, guided by Guskey's 5-level education evaluation model. RESULTS: Remote health practitioners (including AHWs and Remote Area Nurses) and early childhood staff from the sites participated in a customized 2½ day training workshop focusing on the principles of ECD and the use of the culturally adapted Ages and Stages Questionnaire, third edition. Consistent with adult learning theories and recommendations from the literature regarding culturally appropriate professional development methods in this context, the workshop comprised interactive classroom training, role-plays, and practice coaching in the workplace, including booster training. The qualitative findings demonstrated that mode of delivery was effective and valued by participants. The workshop improved practitioners' skills, knowledge, competence, and confidence to identify and manage developmental difficulties and promote child development, evidenced on self-report and workplace clinical observation. CONCLUSION: The findings suggest that the practical, culturally appropriate training led to positive learning outcomes in developmental practice for AHWs and other remote health practitioners. This is an important finding that has implications in other Indigenous contexts, as effective training is a critical component of any practice improvement intervention. Further research examining factors influencing practice change is required.

Development of a Culturally Appropriate Bilingual Electronic App About Hepatitis B for Indigenous Australians: Towards Shared Understandings.

BACKGROUND: Hepatitis B is endemic in Indigenous communities in Northern Australia; however, there is a lack of culturally appropriate educational tools. Health care workers and educators in this setting have voiced a desire for visual, interactive tools in local languages. Mobile phones are increasingly used and available in remote Indigenous communities. In this context, we identified the need for a tablet-based health education app about hepatitis B, developed in partnership with an Australian remote Indigenous community. OBJECTIVE: To develop a culturally appropriate bilingual app about hepatitis B for Indigenous Australians in Arnhem Land using a participatory action research (PAR) framework. METHODS: This project was a partnership between the Menzies School of Health Research, Miwatj Aboriginal Health Corporation, Royal Darwin Hospital Liver Clinic, and Dreamedia Darwin. We have previously published a qualitative study that identified major knowledge gaps about hepatitis B in this community, and suggested that a tablet-based app would be an appropriate and popular tool to improve this knowledge. The process of developing the app was based on PAR principles, particularly ongoing consultation, evaluation, and discussion with the community throughout each iterative cycle. Stages included development of the storyboard, the translation process (forward translation and backtranslation), prelaunch community review, launch and initial community evaluation, and finally, wider launch and evaluation at a viral hepatitis conference. RESULTS: We produced an app called "Hep B Story" for use with iPad, iPhone, Android tablets, and mobile phones or personal computers. The app is culturally appropriate, audiovisual, interactive, and users can choose either English or Yolŋu Matha (the most common language in East Arnhem Land) as their preferred language. The initial evaluation demonstrated a statistically significant improvement in Hep B-related knowledge for 2 of 3 questions (P=.01 and .02, respectively) and overwhelmingly positive opinion regarding acceptability and ease of use (median rating of 5, on a 5-point Likert-type scale when users were asked if they would recommend the app to others). CONCLUSIONS: We describe the process of development of a bilingual hepatitis B-specific app for Indigenous Australians, using a PAR framework. The approach was found to be successful with positive evaluations.

Effect of a family-centered, secondhand smoke intervention to reduce respiratory illness in indigenous infants in Australia and New Zealand: a randomized controlled trial.

INTRODUCTION: Secondhand smoke (SHS) is a significant cause of acute respiratory illness (ARI) and 5 times more common in indigenous children. A single-blind randomized trial was undertaken to determine the efficacy of a family centered SHS intervention to reduce ARI in indigenous infants in Australia and New Zealand. METHODS: Indigenous mothers/infants from homes with ≥ 1 smoker were randomized to a SHS intervention involving 3 home visits in the first 3 months of the infants' lives (plus usual care) or usual care. The primary outcome was number of ARI-related visits to a health provider in the first year of life. Secondary outcomes, assessed at 4 and 12 months of age, included ARI hospitalization rates and mothers' report of infants' SHS exposure (validated by urinary cotinine/creatinine ratios [CCRs]), smoking restrictions, and smoking cessation. RESULTS: Two hundred and ninety-three mother/infant dyads were randomized and followed up. Three quarters of mothers smoked during pregnancy and two thirds were smoking at baseline (as were their partners), with no change for more than 12 months. Reported infant exposure to SHS was low (≥ 95% had smoke-free homes/cars). Infant CCRs were higher if one or both parents were smokers and if mothers breast fed their infants. There was no effect of the intervention on ARI events [471 intervention vs. 438 usual care (reference); incidence rate ratio = 1.10, 95% confidence intervals (CI) = 0.88-1.37, p = .40]. CONCLUSIONS: Despite reporting smoke-free homes/cars, mothers and their partners continue to smoke in the first year of infants' lives, exposing them to SHS. Emphasis needs to be placed on supporting parents to stop smoking preconception, during pregnancy, and postnatal.

A systematic review of barriers and facilitators to participation in randomized controlled trials by Indigenous people from New Zealand, Australia, Canada and the United States.

ISSUE: Many randomized controlled trials (RCTs) are conducted each year but only a small proportion is specifically designed for Indigenous people. In this review we consider the challenges of participation in RCTs for Indigenous peoples from New Zealand, Australia, Canada and the United States and the opportunities for increasing participation. APPROACH: The literature was systematically searched for published articles including information on the barriers and facilitators for Indigenous people's participation in health-related RCTs. Articles were identified using a key word search of electronic databases (Scopus, Medline and EMBASE). To be included, papers had to include in their published work at least one aspect of their RCT that was either a barrier and/or facilitator for participation identified from, for example, design of intervention, or discussion sections of articles. Articles that were reviews, discussions, opinion pieces or rationale/methodology were excluded. Results were analysed inductively, allowing themes to emerge from the data. KEY FINDINGS: Facilitators enabling Indigenous people's participation in RCTs included relationship and partnership building, employing Indigenous staff, drawing on Indigenous knowledge models, targeted recruitment techniques and adapting study material. Challenges for participation included both participant-level factors (such as a distrust of research) and RCT-level factors (including inadequately addressing likely participant barriers (phone availability, travel costs), and a lack of recognition or incorporation of Indigenous knowledge systems. IMPLICATION: The findings from our review add to the body of knowledge on elimination of health disparities, by identifying effective and practical strategies for conducting and engaging Indigenous peoples with RCTs. Future trials that seek to benefit Indigenous peoples should actively involve Indigenous research partners, and respect and draw on pertinent Indigenous knowledge and values. This review has the potential to assist in the design of such studies.

Australian and New Zealand Indigenous mothers' report respect for smoking bans in homes.

BACKGROUND: There is limited data about the reasons behind residential rules to reduce environmental tobacco smoke (ETS) exposure or the establishment or enforcement of such rules in Indigenous populations. AIM: We aimed to gain an understanding of smokefree rules around Australian and New Zealand (NZ) Indigenous infants. METHOD: This was a qualitative study nested within a randomised controlled trial that aimed to test the efficacy of a family-centred tobacco control programme about environmental tobacco smoke (ETS) to improve the respiratory health of Indigenous infants in Australia and New Zealand. Qualitative semi-structured interviews were conducted with 26 Indigenous mothers of infants in Australia (n=7) and NZ (n=19). We asked about the presence of smokefree rules, who set the rules, how the rules were set and enforced, and presence of smokefree rules in participants' wider social circle. Interviews were audiotaped, transcribed, and inductively analysed to identify key themes. FINDINGS: Sixty-nine percent of mothers had partners, 77% smoked and all reported some presence of smokefree rules for house and car. Three main themes were identified: strategies to minimise exposure to ETS, establishing smokefree rules in homes and cars, and, adherence and enforcement of smokefree rules. Several strategies were identified to limit children's exposure to ETS, including rules to limit exposure to third-hand smoke. Mothers extended their smokefree rules to apply to other people's houses or cars, and reported that their family and social circles also had smokefree rules. The main reason for having smokefree rules was for the health of their children. Rules were most commonly set by the mother, often jointly with their partner. Few mothers reported challenges or problems with other people adhering to the smokefree rules. CONCLUSION: Women tried very hard to, and believed that they were effective in, protecting their children from the harmful effects of ETS exposure. In this context, health professionals need to emphasise smoking cessation in parents, so that children are maximally protected from ETS exposure.

"Only your blood can tell the story"--a qualitative research study using semi-structured interviews to explore the hepatitis B related knowledge, perceptions and experiences of remote dwelling Indigenous Australians and their health care providers in northern Australia.

BACKGROUND: Hepatitis B is endemic in the Indigenous communities of the Northern Territory of Australia and significantly contributes to liver-related morbidity and mortality. It is recognised that low health literacy levels, different worldviews and English as a second language all contribute to the difficulties health workers often have in explaining biomedical health concepts, relevant to hepatitis B infection, to patients. The aim of this research project was to explore the knowledge, perceptions and experiences of remote dwelling Indigenous adults and their health care providers relating to hepatitis B infection with a view to using this as the evidence base to develop a culturally appropriate educational tool. METHODS: The impetus for this project came from health clinic staff at a remote community in Arnhem Land in the Northern Territory, in partnership with a visiting specialist liver clinic from the Royal Darwin Hospital. Participants were clinic patients with hepatitis B (n = 12), community members (n = 9) and key informants (n = 13); 25 were Indigenous individuals.A participatory action research project design was used with purposive sampling to identify participants. Semi-structured interviews were undertaken to explore: current understanding of hepatitis B, desire for knowledge, and perspectives on how people could acquire the information needed. All individuals were offered the use of an interpreter. The data were examined using deductive and inductive thematic analysis. RESULTS: Low levels of biomedical knowledge about Hepatitis B, negative perceptions of Hepatitis B, communication (particularly language) and culture were the major themes that emerged from the data. Accurate concepts grounded in Indigenous culture such as "only your blood can tell the story" were present but accompanied by a feeling of disempowerment due to perceived lack of "medical" understanding, and informed partnerships between caregiver and patient. Culturally appropriate discussions in a patient's first language using visual aids were identified as vital to improving communication. CONCLUSIONS: Having an educational tool in Indigenous patient's first language is crucial in developing treatment partnerships for Indigenous patients with hepatitis B. Using a culturally appropriate worldview as the foundation for development should help to reduce disempowerment and improve health literacy.