Thirty two semi-structured interviews were carried out between July and September 2012. Participants consisted of clinic patients with hepatitis B (11), other community members (9) and key informants (12). Twenty-four (75%) were Indigenous people. Median age of participants was 45 years (IQR 35–55) and 18 (56%) were female. Highest level of education attained was junior school for one individual (3%), secondary school for 23 (72%) and tertiary education for 8 (25%). All participants had the opportunity to use an interpreter; 17 interviews were carried out using a Yolŋu matha interpreter (the principal Indigenous language spoken in the community). The remainder were carried out in English.
Knowledge about hepatitis B: “Only your blood can tell the true story”
There was a distinct lack of biomedical knowledge regarding CHB, especially in the people living with CHB group, and even among those who had been previously reviewed in the liver clinic and/or were currently on oral antiviral treatment for CHB. People living with CHB and community members generally acknowledged that they did not know or have any understanding of what hepatitis B was and were commonly unable to attempt any explanation on direct questioning.
However, when contextual translation was provided in Yolŋu matha some understanding often emerged:
“Something like that person will get that virus inside the body. Sometimes he [the virus] will be gone and sometimes will stay there for bit long. That’s the story I know”.
“When I see people with hepatitis they have a yellowish thing - eye - you know just around the eye balls and that thing to me, it tells me that the person either have a hepatitis or kidney failure”.
Indigenous community member
The word “germ” and an understanding of germs being micro-organisms that required a microscope to visualise them was recurrently touched upon, with specific reference to previous education programmes and research projects carried out in the community both by The Aboriginal Resource Development Service (ARDS) in Darwin and Menzies School of Health Research. These experiences appeared to have led to an increased understanding of biomedical concepts around infectious diseases in general and were discussed in a positive light.
Despite this many misconceptions about hepatitis B from a biomedical perspective were identified, particularly around causation and transmission. In particular the ideas that CHB can be caused by smoking, lifestyle factors, diet and lack of exercise were frequently reported by community members:
“Maybe because I was washing myself too much in cold water it may have caused the sickness or me sleeping outside”.
“When you smoke you get the sickness in the lungs and in the liver”.
Indigenous Hepatitis B patient
This was also reflected in comments made by numerous people that before “western influences” CHB didn’t exist as a problem; it was a “new” sickness that people did not really know much about and could be prevented by reverting to a more traditional lifestyle.
Many people reported that their underlying beliefs about health and disease are based on traditional medicine including sorcery as causation of disease and traditional plant-based remedies as treatments. Although there were no bush medicines reported that can be used to specifically treat CHB, a remedy made from paper bark trees was described as being used and felt to be effective for liver sickness in general. The biomedical or “balanda” (white person) version of hepatitis B was very much seen as an alternative explanation; new information that didn’t exist in previous generations.
There was also some confusion surrounding Human Immunodeficiency Virus (HIV) and CHB. Some community members reported that the two diseases were one and the same sickness. This misunderstanding appeared to contribute significantly to the sense of stigma or shame around a diagnosis of CHB, and that it had to be kept a secret because of what it might reveal about sexual orientation or partner preference. As well as this, the opinion that an individual patient may be to blame in some way for acquiring CHB, which appeared to be centred on awareness that CHB could be sexually acquired, was recurrently voiced.
This lack of biomedical knowledge was not confined to the patient and community members. Some key informants, both Indigenous and non-Indigenous, also acknowledged that they found it a difficult area to understand clearly themselves. Multiple health professionals reflected on the role of working in an endemic setting seeing a high volume of people living with CHB as necessary to achieve true competency in the management of CHB, stating that prior to this, their understanding was more superficial.
The topic of hepatitis B is part of the routine curriculum studies undertaken by Aboriginal health workers (AHW) and this appeared to be the origin of knowledge for this group, as similar concepts and responses were reported. The concepts of mother to child transmission, sexual acquisition and the infectiveness of blood and other body fluids were expressed by several AHWs; however they were less clear about the natural history of the disease, the interpretation or meaning of blood test results, and the potential for treatment or intervention.
Perceptions of hepatitis B: “It’s like a silent killer; I can drop dead anywhere so I take my tablets and pray”
People living with CHB and community member perceptions about CHB tended to portray the disease in a negative light, describing it as a “scary sickness”, a “serious infection”, a “big sickness”. People living with CHB in particular described fear as a motivating factor for their actions and behaviours, which either pushed them to take their tablets to prevent imminent death or made them too afraid to attend the clinic, so acting as a barrier to receiving any care.
Within the key informant group there was recurrent reference to the many more urgent competing health priorities in remote communities, such as ischemic heart disease, diabetes and renal disease. CHB, owing to its long term, insidious or asymptomatic nature, in combination with the lack of appropriate resources, resulted in it being neglected and often not adequately addressed. Multiple logistical issues were also felt to contribute to an almost fatalistic view of what was achievable, such as: the remote and dispersed nature of the patient population; the difficulty accessing secondary care physicians and investigations, especially liver ultrasound; the turnover of health care professionals, and lack of continuity of care. In the context of these factors it was perceived that CHB is just too complex a problem to tackle. It was also noted that even where good quality educational resources are available for other diseases, they are rarely used in clinical practice. Instead, they sit on a shelf gathering dust or the technology to use them is either not there or does not work. It is not clear if this is because they are not useful, did not have community input into their development or have not been well implemented or evaluated.
“People (with Hepatitis B) tend to be asymptomatic for long periods in contrast to chronic diseases like ischemic heart disease, chronic airways disease, chronic kidney disease, diabetes, and day to day problems that people can identify as being directly linked to the condition so it tends to be way down the list of priorities”.
Non-Indigenous health worker
“The system relies on people being involved for the long haul and yet there’s not a single clinic where we were outlasted by the clinic or the nurse manager of the clinic or the GP where we were there for longer than anyone else in all of the East Arnhem Clinics”.
Non-Indigenous health worker
“I think, I mean working in the top end I’ve seen a lot of really nice materials that have been developed educationally and flip books and things. In my experience they’re rarely used”.
Non-Indigenous health worker.
Among non-Indigenous key informants there was a perception that it was not possible to translate certain key words such as ‘liver’ and ‘kidney’ accurately into Yolŋu matha and hence adequate explanations of hepatitis B were challenging to achieve even with a translator.
An Indigenous community member working as a translator, however, said that this was not true.
“Most of the time by and large Yolŋu are hunter gather people. They can cut up a kangaroo, wallabies; they can identify those things [liver and kidney] pretty well, they can make that distinction. It is common knowledge to be able to identify them, there are clear words for them [liver and kidney] and they are different”.
Indigenous community member
Experiences of living with Hepatitis B: towards a shared understanding
Non-Indigenous individuals in the study (all key informants) tended to significantly overestimate the depth of shared understanding between themselves and Indigenous individuals when discussing CHB. When reviewing existing resources with the non-Indigenous health workers there was recognition that there were too many medical terms and a feeling that they were too detailed in content. However, the general concepts that were explained in these resources were felt to be appropriate. Indigenous participants also described an excess use of jargon but also reported that the concepts used were foreign and difficult to relate to.
He is saying he’s been to the clinic, they have explained several times. Sometimes he doesn’t understand [what they are saying], especially the doctors.
Indigenous Hepatitis B patient
This lack of shared understanding was also touched upon when discussing the use of AHWs as translators in the context of clinic consultations about CHB. Although a few of the doctors with extensive experience of working in a remote community environment had good insight into the difficulties AHW may face in explaining biomedical concepts, there was a general feeling that having an AHW with them during a consultation to translate their biomedical explanation was adequate to achieve a shared understanding. In stark contrast to this, AHW participants reported finding this expectation overwhelming as they did not feel sufficiently equipped to be able to facilitate a satisfactory explanation due to their lack of understanding of what was being said.
If I don’t understand the message then how am I gonna convey it.
Indigenous health workers (key informants)
Multiple patients voiced the concern that they were asked to have many blood tests related to their diagnosis of CHB, without receiving adequate explanation of their purpose, and that there was a lack of follow up to receive and discuss the results. This lack of understanding and communication left them feeling worried, angry and frustrated and in several cases like the clinic staff were purposely hiding something from them, resulting in a lived experience of disempowerment and inferiority.
“I hold my temper at that time, when I don’t get my results back I feel like I need, I want to do something, like smash windows or something here at the hospital”.
“I figured there was something wrong with me when they kept on requesting more and more bloods from me”.
“That’s one of the things. Sometimes doctors hide something to the patient and they don’t want to tell straight”.
Indigenous Hepatitis B patientsThe results described so far highlight factors which all contribute to the patient-provider aspect of the Paasche-Orlow & Wolf model (Figure 1). As well as clearly impacting on an individual’s Hepatitis B specific health literacy these factors appear to shape healthcare interactions, potentially representing a foundation step in the pathways that exist between low levels of health literacy and poor health outcomes in Indigenous Australians.
The importance of language in health education and healthcare interactions
Indigenous participants across all 3 groups overwhelmingly cited language as the single most important feature of any potential educational resource and also as the most significant barrier to achieving effective cross cultural communication.
“She’s saying, she doesn’t understand, it’s not much meaningful. The words are big words, the numbers are not good, and the words are not good. Should be in language”.
Indigenous Hepatitis B patient
On multiple occasions through the process of interviewing (at the request of individuals normally in the patient group), we used a trained interpreter to provide a brief clinic style explanation of CHB, and this appeared to be able to significantly increase an individual’s understanding of their illness.
It was however emphasised repeatedly that the translation process was not simply a case of turning the English into Yolŋu matha and that multiple steps were needed; to ensure the individual translating has adequate understanding, to allow/enable contextual translation, to communicate the message via the interpreter in the appropriate language, to check understanding in language, to ask the interpreter to back translate the participant’s understanding and to clarify any miscommunication, as well as great care not to simplify the message too much such that the detail was lost. Indigenous participants perceived that the best path is to remove all medical jargon and acronyms and translate the simple English into Yolŋu matha, using accurate but “culturally safe” concepts. The value and preference for visual aids, again of a culturally safe and accurate nature, was a predominant comment.
It became apparent over the duration of the project that there was a lack of shared understanding of the word “silent” between non-Indigenous key informants (health workers) and patients in the context of hepatitis B. Whereas the non-Indigenous health care professional may use the word ‘silent’ to describe the immune tolerance (early stage CHB when viral load is high but minimal liver damage is occurring) or immune control phase (later stage CHB following e antibody seroconversion where viral load is low and minimal liver damage is occurring) of hepatitis B, a Yolŋu patient or AHW may interpret this to mean that the sickness is brought about by sorcerya, with negative connotations of retribution or punishment. Although not held by all, this was a commonly held belief voiced amongst the Indigenous people interviewed.
The relationship between culture and communication in health education
Culturally important relationships between certain individuals, which health care providers may not be aware of, were seen as a barrier to effective communication. For example; a well-respected senior male elder in the community may feel uncomfortable with having a younger female interpreter in a medical consultation, as it would infer something negative about his knowledge of the subject or ability to understand the health care worker and so decline the assistance of an interpreter altogether. This can then result in the individual having an inadequate understanding of the information presented to them.
The importance of gender sensitivity, not only in a clinical scenario but also in any potential educational resource was touched on by individuals in all groups. The ability for people to speak honestly and in detail about hepatitis B was felt to be culturally difficult between individuals of different gender. Patients and community members felt this to be more important if the gender mismatch was between two Indigenous individuals and not as significant if the second individual was a non-Indigenous individual or a health care professional. However some non-Indigenous health care professionals felt that consultations between a health worker and patient of the same gender tended to result in improved cross cultural communication and improved rapport.
Motivation to understand more about hepatitis B: “we want to learn more about this sickness”
Despite a lack of biomedical knowledge, Indigenous participants passionately voiced a desire to understand more about hepatitis B. The importance of telling the full and true story was emphasised, in not missing out the details, but finding a culturally appropriate contextual translation to allow a shared understanding of the important information. Indigenous participants were enthusiastic about spreading this knowledge to all to whom it may be relevant in order to allow them to make choices about seeking management. Both Indigenous people living with CHB and community members perceived that the moral and ethical obligation was on “us”, the health care providers, the ones giving injections (vaccination) and taking blood tests to ensure patients were appropriately informed. This understanding was felt to be very powerful in facilitating autonomy and respect, as well as being vital to a respectful patient – health care professional relationship.
“She’s saying she wants to learn more about this hepatitis B so she can pass the story to her people, to her family. And to encourage them to come to the clinic and have a check-up”.
Indigenous Hepatitis B patient
A culturally appropriate education resource: what we need…
When discussing educational resources, non-Indigenous key informants reported that an analogy with hepatitis B using a local animal (e.g. a crocodile or snake) to represent how the virus can lie dormant in the liver and then suddenly attack resulting in serious health consequences would be culturally appropriate. By contrast, Indigenous participants generally preferred more medical imagery requesting to see a real human-like figure with a real liver, and a story based in a culturally appropriate setting. One participant remarked that the majority of local animals are hunted as food by community members, so it would be counterproductive to use them to explain a human sickness - people would then think they could get the disease from the animal.
A strong desire to understand the detail about Hepatitis B was recurrently expressed but the need for contextual translation done in a culturally appropriate way was stressed. In general, Indigenous participants reported a preference for an electronic format with an emphasis on interactive pictures and less text. If text is utilised, it was clear from participants that it must be in Yolŋu matha and spoken as well as written.
There was a recurrent specific request for a separate “women’s business” section to speak about the issues specifically related to pregnancy.Figure 2 summarises the important aspects from the results which have been taken forward into the process of developing a culturally appropriate tool to aid in the development of effective treatment partnerships for Indigenous patients with CHB.In light of our results we have adapted Paasche-Orlow & Wolf’s model Figure 3 to highlight how the relationships between health literacy and poor health outcomes may operate for Indigenous Australians with respect to hepatitis B.