Health workers’ perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia

Cama, Elena; Beadman, Mitch; Beadman, Kim; Hopwood, Max; Treloar, Carla

doi:10.1186/s12954-023-00844-4

Cited by 5 publications

(2 citation statements)

References 39 publications

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“…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.…”

Section: Discussionmentioning

confidence: 99%

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

Binks,

Venkatesan,

Everitt

et al. 2024

BMC Health Serv Res

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Background Hepatitis B is endemic amongst the Australian Aboriginal population in the Northern Territory. A participatory action research project identified the lack of culturally appropriate education tools and led to the development of the “Hep B Story” app in the Aboriginal language Yolŋu Matha. This paper describes a formal evaluation of the app’s first version, which informed improvements and translation into a further ten Aboriginal languages. Methods The evaluation employed Participatory Action Research (PAR) principles to work within Indigenous research methodologies and prioritise Indigenous knowledge to improve the app iteratively. Semi-structured interviews and focus groups were conducted across the Northern Territory with 11 different language groups. Local Community Based Researchers and Aboriginal Research team members coordinated sessions. The recorded, translated conversations were transcribed verbatim and thematically analysed using an inductive and deductive approach. Results Between November 2018 and September 2020, 94 individuals from 11 language groups participated in 25 semi-structured interviews and 10 focus groups. All participants identified as Aboriginal. Most participants felt the app would be culturally appropriate for Aboriginal communities in the Northern Territory and improve knowledge surrounding hepatitis B. The information gathered from these interviews allowed for identifying five main themes: support for app, relationships, concept versus language, shame, and perceptions of images, along with errors that required modification. Conclusions A “real-life” evaluation of the app was comprehensively completed using a PAR approach blended with Indigenous research methods. This evaluation allowed us to develop an updated and enhanced version of the app before creating the additional ten language versions. An iterative approach alongside strong community engagement was pivotal in ensuring the app’s cultural safety and appropriateness. We recommend avoiding the use of knowledge-based evaluations in an Aboriginal setting to ensure relevant and culturally appropriate feedback is obtained.

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Section: Discussionmentioning

confidence: 99%

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

Binks,

Venkatesan,

Everitt

et al. 2024

BMC Health Serv Res

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“…Following publication of the original article [ 1 ], the reference 31 has been added to the reference list and the same has been shown below:…”

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confidence: 99%

Correction: Health workers’ perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia

Cama,

Beadman,

Beadman

et al. 2024

Harm Reduct J

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“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

Binks,

Gurruwiwi,

Dhurrkay

et al. 2024

Discov Health Systems

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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.

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Health workers’ perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia

Cited by 5 publications

References 39 publications

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

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

Correction: Health workers’ perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia

“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

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