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 C., 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 1: 26.1-26.13. doi:10.1186/1478-4505-11-26


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 C.
Burns, Lucinda
Fitzpatrick, James P.
Halliday, Jane
O'Leary, Colleen M.
Peadon, Elizabeth
Elliott, Elizabeth J.
Bower, Carol
Title Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia
Journal name Health Research Policy and Systems   Check publisher's open access policy
ISSN 1478-4505
Publication date 2013-07
Sub-type Article (original research)
DOI 10.1186/1478-4505-11-26
Open Access Status DOI
Volume 11
Issue 1
Start page 26.1
End page 26.13
Total pages 13
Place of publication London, United Kingdom
Publisher BioMed Central
Collection year 2014
Language eng
Formatted 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.
Keyword Consumer participation
Fetal alcohol spectrum disorder
Research
Medical-Research
Research Agenda
Health Research
Nhs Research
Involvement
Participation
Guidelines
Delphi
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2014 Collection
School of Medicine Publications
 
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