Researchers: Professor Elizabeth Elliott, Dr Emily Fitzpatrick, Dr Alexandra Martiniuk (The George Institute for Global Health); Ms Heather D’Antoine (Menzies School of Health Research); Ms June Oscar (Marninwarntikura Women’s Resource Centre); Ms Maureen Carter (Nindilingarri Cultural Health Services)
Funding:
Project summary: Aboriginal leaders in the Fitzroy Valley (Kimberly, WA) initiated a partnership between Marninwarntikura Women’s Resource Centre and Nindilingarri Cultural Health Services (Fitzroy Crossing); The University of Sydney Medical School and The George Institute for Global Health to estimate Fetal Alcohol Spectrum Disorders (FASD) prevalence (The Lililwan Project). There is strong community support for the Project.
Stage 2 of The Lililwan Project involved FASD diagnostic assessments of children born 2002-2003 and residing in Fitzroy Valley. Flip charts were produced using photographs of people known in Fitzroy Crossing to help seek informed consent for Stage 2 in 2011. These were used in conjunction with participant information statement and consent forms approved previously by Human Research Ethics Committees (HREC) by The Lililwan Project research team, including Community Navigators – local Aboriginal people employed to assist with language and cultural barriers.
The Picture Talk Project will examine the preference of methods used for seeking community and individual consent for research by conducting interviews with Aboriginal community leaders and focus groups with Aboriginal people.
This study is unique in that its primary focus is on the concept of consent for research with Aboriginal Australians. Few studies have evaluated the consent process. The Picture Talk Project is collaborative, involving local Aboriginal leaders and experienced Aboriginal researchers as chief investigators on the project. The Picture Talk Project stems from The Lililwan Project, which was led by local Aboriginal communities and approved by HREC.
In this project we will use scientifically rigorous qualitative research methods, including structured interviews and focus groups adapted to ensure cultural safety by Aboriginal investigators to provide unique, first-hand, perspectives from Aboriginal people of the Fitzroy Valley on the process for seeking consent for research. This project aims to provide feedback about The Lililwan Project and help to inform how future research might be conducted.
Progress: Ongoing