Abstract
BackgroundHepatitis 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.MethodsThe 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.ResultsLow 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.ConclusionsHaving 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.
Highlights
Hepatitis B is endemic in the Indigenous communities of the Northern Territory of Australia and significantly contributes to liver-related morbidity and mortality
chronic hepatitis B (CHB) is endemic in the Indigenous communities of the Northern Territory (NT) of Australia with prevalence rates estimated to be between 0.8% [for children born in the universal vaccine era (1988 onwards)] and14.2% [2,3,4,5,6,7,8], this is compared to 1% in Australia as a whole [9]
All participants had the opportunity to use an interpreter; 17 interviews were carried out using a Yolŋu matha interpreter
Summary
Hepatitis B is endemic in the Indigenous communities of the Northern Territory of Australia and significantly contributes to liver-related morbidity and mortality. Despite the availability of effective, government subsidised treatments only an estimated 5% [10] of all people living with CHB in Australia are receiving appropriate management for their infection This disparity in rates of Hepatitis B and low uptake of treatment is seen in other Indigenous populations across the world [11,12]. The barriers to people accessing care for CHB are multifactorial but among Indigenous Australians, include gaps in knowledge, low health literacy and challenges in accessing the appropriate care [13] Both a recent situational analysis [14] and a qualitative study [15] in the Torres Strait region of Australia identified low levels of knowledge about CHB both in health care providers and Indigenous Australian patients with CHB. Many health promotion or information resources exist for hepatitis B [18], all the above [13,14,15,16,17] studies as well as the Australian National Hepatitis B strategy [19] highlight the lack of culturally appropriate resources, in particular visual and multimedia resources, available to facilitate shared understandings of Hepatitis B and strengthen health literacy
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