The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia

BMC Medical Ethics

Research Article

G. Macdonald¹  E.F.M. Fitzpatrick²  E.J. Elliott³  T. Lawford⁴  J. Oscar⁵  H. D’Antoine⁶  M. Carter⁷  A.L.C. Martiniuk⁸ 

[1] Department of Anthropology, University of Sydney, Sydney, NSW, Australia;Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia;The Sydney Children’s Hospital Network, 4 Governor Phillip Place, West Pennant Hills, 2125, Sydney, NSW, Australia;Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia;The Sydney Children’s Hospital Network, 4 Governor Phillip Place, West Pennant Hills, 2125, Sydney, NSW, Australia;Sydney Medical School, University of Sydney, Sydney, NSW, Australia;The George Institute for Global Health, Sydney, NSW, Australia;Kimberley Aboriginal Law and Culture Centre, Fitzroy Crossing, Australia;Marninwarntikura Women’s Resource Centre, Fitzroy Crossing, WA, Australia;Nulungu Research Institute, The University of Notre Dame, Broome, Australia;Menzies School of Health Research, Darwin, NT, Australia;Nindilingarri Cultural Health Services, Fitzroy Crossing, WA, Australia;Sydney Medical School, University of Sydney, Sydney, NSW, Australia;The George Institute for Global Health, Sydney, NSW, Australia;Dalla Lana School of Public Health, University of Toronto, Toronto, Canada;

关键词: Australian aboriginal people;    Indigenous;    Consent;    Engagement;    Research;    Community;   

DOI  :  10.1186/s12910-017-0191-z

 received in 2016-11-25, accepted in 2017-04-22,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundResearchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings.MethodsThe Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced.ResultsInterviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research—finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity—two-way learning; and Reaching consent.ConclusionThe project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent.

【 授权许可】

CC BY   
© The Author(s). 2017