“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

Abstract

Abstract 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.

Keywords

• Stigma
• Hepatitis B
• Aboriginal and Torres Strait Islander health