An evaluation and refinement of the "Hep B Story" app, tailored to meet the community's cultural needs.

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.

Adapting and translating the 'Hep B Story' App the right way: A transferable toolkit to develop health resources with, and for, Aboriginal people.

ISSUE ADDRESSED: In 2014 the 'Hep B Story App', the first hepatitis B educational app in an Aboriginal language was released. Subsequently, in 2018, it was assessed and adapted before translation into an additional 10 Aboriginal languages. The translation process developed iteratively into a model that may be applied when creating any health resource in Aboriginal languages. METHODS: The adaptation and translation of the 'Hep B Story' followed a tailored participatory action research (PAR) process involving crucial steps such as extensive community consultation, adaptation of the original material, forward and back translation of the script, content accuracy verification, voiceover recording, and thorough review before the publication of the new version. RESULTS: Iterative PAR cycles shaped the translation process, leading to a refined model applicable to creating health resources in any Aboriginal language. The community-wide consultation yielded widespread chronic hepatitis B education, prompting participants to share the story within their families, advocating for hepatitis B check-ups. The project offered numerous insights and lessons, such as the significance of allocating sufficient time and resources to undertake the process. Additionally, it highlighted the importance of implementing flexible work arrangements and eliminating barriers to work for the translators. CONCLUSIONS: Through our extensive work across the Northern Territory, we produced an educational tool for Aboriginal people in their preferred languages and developed a translation model to create resources for different cultural and linguistic groups. SO WHAT?: This translation model provides a rigorous, transferable method for creating accurate health resources for culturally and linguistically diverse populations.

"If They Help Us, We Can Help Them": First Nations Peoples Identify Intercultural Health Communication Problems and Solutions in Hospital in Northern Australia.

Effective intercultural communication between First Nations peoples and healthcare providers in colonised countries is required to deliver equitable healthcare and improve patient experiences and health outcomes. This paper presents First Nations peoples' perspectives and proposed solutions to problematic communication experiences at Royal Darwin Hospital in northern Australia. The study's methodological foundations comprise decolonising principles rooted in Critical Race Theory, Freirean pedagogy, and cultural safety. Eleven individuals from diverse First Nations backgrounds receiving treatment at the largest hospital in the Northern Territory, participated in in-depth interviews conducted in their preferred languages. Data were inductively analysed, adapted from a constructivist grounded theory approach and guided by First Nations knowledges. First Nations patients at Royal Darwin Hospital described a culturally unsafe hospital due to ineffective intercultural communication. Patient "counterstories" recounted instances of confusion, aggression, healthcare provider resistance to shared decision-making opportunities, pressure to abandon cultural protocols, and institutional neglect. Poor communication incited anger among staff and patients, and contributed to experiences of racism, missed appointments, clinical mistakes, patients prematurely discharging before completing treatment, and patients experiencing financial troubles and homelessness. In a spirit of generosity, patients proposed solutions focused on relationship building and mutual understanding so that new decolonised systems, which draw on First Nations and Western knowledges, can be codesigned. This study serves as a call to action for policymakers, administrators, and healthcare providers to prioritise improving intercultural communication by addressing the behaviour of staff and changing systemically racist policies in the pursuit of health equity and cultural safety for First Nations peoples.