Charles Darwin University

CDU eSpace
Institutional Repository

 
CDU Staff and Student only
 

Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia

Jones, Heather M., McKenzie, Anne, Miers, Sue, Russell, Elizabeth, Watkins, Rochelle E., Payne, Janet M., Hayes, Lorian, Carter, Maureen, D'Antoine, Heather, Latimer, Jane, Wilkins, Amanda, Mutch, Raewyn, Burns, Lucinda, Fitzpatrick, James P., Halliday, Jane, O'Leary, Colleen M., Peadon, Elizabeth, Elliott, Elizabeth J. and Bower, Carol (2013). Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia. Health Research Policy and Systems,11:26-1-26-13.

Document type: Journal Article
Attached Files (Some files may be inaccessible until you login with your CDU eSpace credentials)
Name Description MIMEType Size Downloads
Download this reading DAntoine_40678.pdf Published version application/pdf 326.84KB 66
Reading the attached file works best in Firefox, Chrome and IE 9 or later.

IRMA ID cmartelxPUB165
Title Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia
Author Jones, Heather M.
McKenzie, Anne
Miers, Sue
Russell, Elizabeth
Watkins, Rochelle E.
Payne, Janet M.
Hayes, Lorian
Carter, Maureen
D'Antoine, Heather
Latimer, Jane
Wilkins, Amanda
Mutch, Raewyn
Burns, Lucinda
Fitzpatrick, James P.
Halliday, Jane
O'Leary, Colleen M.
Peadon, Elizabeth
Elliott, Elizabeth J.
Bower, Carol
Journal Name Health Research Policy and Systems
Publication Date 2013
Volume Number 11
ISSN 1478-4505   (check CDU catalogue open catalogue search in new window)
Start Page 26-1
End Page 26-13
Total Pages 13
Place of Publication United Kingdom
Publisher BioMed Central Ltd.
HERDC Category C1 - Journal Article (DIISR)
Abstract Background
Australia’s commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers.

Methods
As part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process.

Results
The on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience.

Conclusions
The successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members.

Keywords Consumer participation
Fetal alcohol spectrum disorder
Research
DOI http://dx.doi.org/10.1186/1478-4505-11-26   (check subscription with CDU E-Gateway service for CDU Staff and Students  check subscription with CDU E-Gateway in new window)
Open access True
Additional Notes This is an Open Access article distributed under the terms of the Creative Commons Attribution License 2.0, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Description for Link Link to CC Attribution 2.0 License
URL http://creativecommons.org/licenses/by/2.0


© copyright

Every reasonable effort has been made to ensure that permission has been obtained for items included in CDU eSpace. If you believe that your rights have been infringed by this repository, please contact digitisation@cdu.edu.au.

 
Versions
Version Filter Type
Access Statistics: 43 Abstract Views, 66 File Downloads  -  Detailed Statistics
Created: Thu, 07 Aug 2014, 17:20:48 CST