“Talking about something no one wants to talk about”—navigating hepatitis B-related work in remote Australian Aboriginal communities: a decade of learning and growth

Abstract

Background Chronic hepatitis B (CHB) is one of the leading causes of liver cirrhosis and liver cancer globally. In Australia, Aboriginal and Torres Strait Islander people of the Northern Territory (NT) have the highest prevalence of CHB (6%) and are six times more likely than non-Aboriginal people to be diagnosed with liver cancer. In 2010, a “liver one-stop shop” model of specialised care and research was initiated to address this disparity. Despite many challenges, the program was accepted in NT Aboriginal communities. This study aimed to identify the key elements linked to this success. Methods We conducted a retrospective case study using Stake’s methodology to understand the hepatitis B phenomenon. A constructivist approach allowed a holistic understanding from the real-life perspectives of those involved in the hepatitis B work. Information was sourced from the Aboriginal workforce, patients of remote clinics, interested community members and service providers. Results We identified six elements critical to the successful conduct of our hepatitis B program, which included the essential role of the local Aboriginal workforce, providing health education in a patient’s preferred language, addressing shame and stigma, respecting culture, taking time, and building trust in the community. Conclusions Commitment over the long term was crucial for the success of our hepatitis B program. Adhering to the identified elements was essential to create a culturally safe environment and engage more Aboriginal people in clinical care and research. This study provides powerful lessons and insights that can be applied to other programs and comparable settings worldwide.

An evaluation and refinement of the “Hep B Story” app, tailored to meet the community’s cultural needs

“…Kinship dynamics and relationships were crucial in shaping our approach to addressing sensitive topics within the app [12]. We recognised that discussions about health issues can be deeply intertwined with family relationships and cultural practices.…”

“…Shame, along with culturally inappropriate services or staff at the community clinic, are known barriers to service utilisation when dealing with chronic diseases in an Indigenous context [53,54]. Minimising stigma, shame, and blame is closely connected to providing education in one's first language and engaging Aboriginal health and research personnel in the conversations [12,55]. Great emphasis needs to be placed on addressing shame around hepatitis B.…”

“…It has a disproportionate impact on Aboriginal and Torres Strait Islander populations, with prevalence of 6% [4][5][6][7]. While socioeconomic factors, healthcare access, and language barriers can present challenges [8], recent research shows that communityled, systematic approaches to CHB management improve the cascade of care in Aboriginal communities [9][10][11][12]. Early diagnosis through effective clinical management is crucial in mitigating the risk of liver cancer and associated mortality in people living with CHB [13].…”