Cargando…

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

BACKGROUND: Researchers 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 con...

Descripción completa

Detalles Bibliográficos
Autores principales: Fitzpatrick, E.F.M., Macdonald, G., Martiniuk, A.L.C., D’Antoine, H., Oscar, J., Carter, M., Lawford, T., Elliott, E.J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5426070/
https://www.ncbi.nlm.nih.gov/pubmed/28494760
http://dx.doi.org/10.1186/s12910-017-0191-z
_version_ 1783235396963926016
author Fitzpatrick, E.F.M.
Macdonald, G.
Martiniuk, A.L.C.
D’Antoine, H.
Oscar, J.
Carter, M.
Lawford, T.
Elliott, E.J.
author_facet Fitzpatrick, E.F.M.
Macdonald, G.
Martiniuk, A.L.C.
D’Antoine, H.
Oscar, J.
Carter, M.
Lawford, T.
Elliott, E.J.
author_sort Fitzpatrick, E.F.M.
collection PubMed
description BACKGROUND: Researchers 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. METHODS: The 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. RESULTS: Interviews 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. CONCLUSION: The 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12910-017-0191-z) contains supplementary material, which is available to authorized users.
format Online
Article
Text
id pubmed-5426070
institution National Center for Biotechnology Information
language English
publishDate 2017
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-54260702017-05-12 The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia Fitzpatrick, E.F.M. Macdonald, G. Martiniuk, A.L.C. D’Antoine, H. Oscar, J. Carter, M. Lawford, T. Elliott, E.J. BMC Med Ethics Research Article BACKGROUND: Researchers 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. METHODS: The 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. RESULTS: Interviews 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. CONCLUSION: The 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12910-017-0191-z) contains supplementary material, which is available to authorized users. BioMed Central 2017-05-11 /pmc/articles/PMC5426070/ /pubmed/28494760 http://dx.doi.org/10.1186/s12910-017-0191-z Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Fitzpatrick, E.F.M.
Macdonald, G.
Martiniuk, A.L.C.
D’Antoine, H.
Oscar, J.
Carter, M.
Lawford, T.
Elliott, E.J.
The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title_full The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title_fullStr The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title_full_unstemmed The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title_short The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia
title_sort picture talk project: starting a conversation with community leaders on research with remote aboriginal communities of australia
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5426070/
https://www.ncbi.nlm.nih.gov/pubmed/28494760
http://dx.doi.org/10.1186/s12910-017-0191-z
work_keys_str_mv AT fitzpatrickefm thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT macdonaldg thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT martiniukalc thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT dantoineh thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT oscarj thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT carterm thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT lawfordt thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT elliottej thepicturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT fitzpatrickefm picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT macdonaldg picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT martiniukalc picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT dantoineh picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT oscarj picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT carterm picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT lawfordt picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia
AT elliottej picturetalkprojectstartingaconversationwithcommunityleadersonresearchwithremoteaboriginalcommunitiesofaustralia