Aims: 
  • To build a local research workforce and empower local residents in community-based participatory action research methods 
  • To foster a community with health literacy relating to acute rheumatic fever (ARF) and its complication, rheumatic heart disease (RHD).
  • To improve the prevention, detection & management of ARF and antecedent streptococcal infections.
Summary: 

OTW is a community-based participatory action research (CBPAR) project located at Yilpara (Baniyala) homeland which is situated on Blue Mud Bay in Eastern Arnhem land about 250 km from Nhulunbuy.  

After involvement in the Improving Secondary Prophylaxis for ARF (“SP”) trial, the Baniyala community identified a need for children to be supported to stay “on track” with their secondary prophylaxis, and for the community to be “on watch” for the symptoms of ARF/RHD and of streptococcal infections.  
 
OTW aims to bridge the knowledge gap identified in the SP study: namely how to effectively engage communities in order to deliver effective self-management support for chronic disease care. 
 
Sixteen Community Based Researchers (CBRs) are enrolled in the Menzies-run 10513NAT Certificate II in Community Health Research.   Through a “both-way learning” approach, with support from an external research team, the CBRs are developing and implementing actions to: 
  • prevent further RHD cases; 
  • strengthen community research knowledge and; 
  • collaboratively develop knowledge translation processes. 
Implications for policy and practice:

Changing the way Aboriginal people are treated and represented in research is key to OTW. Aboriginal people will be empowered to develop solutions to control RHD in their community based on their own motivations. Findings will be disseminated to similarly-affected communities.

Knowledge, tools and resources from OTW will contribute to the coordinated Australia-wide efforts we are part of to control RHD. We will provide knowledge about how health services can engage effectively with their clientele including:
  • how health information should be provided
  • how self-management support should be delivered 
  • how research training builds community capacity to identify and address community health concerns 
  • how these can be embedded sustainably
Findings

The original aims of the study were to support the community to implement household-level changes to reduce transmission of streptococcal infection, focusing on household crowding and inadequate ‘health hardware’ (e.g. washing facilities). 

During implementation of OTW thus far, it became evident that the community recognises different paths to achieving solutions to high disease rates. They have articulated their research priorities and have identified strategies which, over the long-term, will holistically address the socioeconomic factors which promote infection transmission in remote Aboriginal communities. These findings mesh very well with other research findings from Australia’s Northern Territory, which have identified that culture, empowerment and community play key roles in achieving wellbeing.
Chief investigator 
Investigators
  • Alice Mitchell PhD Scholar, Menzies
  • Emma Haynes PhD Scholar, UWA
  • Djambawa Marawili, Traditional Owner, Yilpara
  • Minitja Marawili, Senior Elder, Yilpara
  • Mundiny-Mundiny Dhamarrandji, Senior Elder, Yilpara
  • Bandarr Wirrpanda, Senior Elder, Yilpara
  • Jeff Cook, Laynhapuy Homelands Aboriginal Corporation (Laynha)
  • Dawn Bessarab, University of Western Australia (UWA)
  • Clancy Read, Telethon Kids Institute (TKI)
Project manager
Project dates:
  • 1 January 2016 – 20 June 2018