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

Abstract

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.

Keywords: Aboriginal and Torres Strait Islander peoples; Cultural safety; Electronic health apps; Health education; Health literacy; Hepatitis B; Shame and stigma; Women’s business.

Fig. 1

Thematic diagram representing the five distinct themes and their subthemes

Fig. 2

“The Fishing Story” tells the story of hep B transmission between a girl and boy, A original story (boy and girl), and B new story (two boys)

Fig. 3

Images from the Hep B Story with yellow dots depicting hepatitis B in the liver and blood

Fig. 4

Picture of a woman with liver nodules (A) has been changed to a man with liver nodules (B)

Fig. 5

Images associated with information on A mother-to-child and B sexual transmission of hepatitis B

Fig. 6

“Fishing story” (A) changed to two people “collecting wood” (B) for the Central Australian language versions