Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia
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 fe...
| Main Authors: | , , , , , , , , , , , , , , , , , , |
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| Format: | Journal Article |
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BioMed Central Ltd.
2013
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| Online Access: | http://hdl.handle.net/20.500.11937/25244 |
| _version_ | 1848751654589956096 |
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| author | Jones, H. McKenzie, A. Miers, S. Russell, E. Watkins, R. Payne, J. Hayes, L. Carter, M. D'Antoine, Heather Latimer, J. Wilkins, A. Mutch, R. Burns, L. Fitzpatrick, J. Halliday, J. O'Leary, Colleen Marie Peadon, E. Elliott, E. Bower, C. |
| author_facet | Jones, H. McKenzie, A. Miers, S. Russell, E. Watkins, R. Payne, J. Hayes, L. Carter, M. D'Antoine, Heather Latimer, J. Wilkins, A. Mutch, R. Burns, L. Fitzpatrick, J. Halliday, J. O'Leary, Colleen Marie Peadon, E. Elliott, E. Bower, C. |
| author_sort | Jones, H. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T07:56:10Z |
| format | Journal Article |
| id | curtin-20.500.11937-25244 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T07:56:10Z |
| publishDate | 2013 |
| publisher | BioMed Central Ltd. |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-252442017-09-13T15:21:52Z Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia Jones, H. McKenzie, A. Miers, S. Russell, E. Watkins, R. Payne, J. Hayes, L. Carter, M. D'Antoine, Heather Latimer, J. Wilkins, A. Mutch, R. Burns, L. Fitzpatrick, J. Halliday, J. O'Leary, Colleen Marie Peadon, E. Elliott, E. Bower, C. Fetal alcohol spectrum disorder Consumer participation Research 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. 2013 Journal Article http://hdl.handle.net/20.500.11937/25244 10.1186/1478-4505-11-26 BioMed Central Ltd. unknown |
| spellingShingle | Fetal alcohol spectrum disorder Consumer participation Research Jones, H. McKenzie, A. Miers, S. Russell, E. Watkins, R. Payne, J. Hayes, L. Carter, M. D'Antoine, Heather Latimer, J. Wilkins, A. Mutch, R. Burns, L. Fitzpatrick, J. Halliday, J. O'Leary, Colleen Marie Peadon, E. Elliott, E. Bower, C. Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title | Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title_full | Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title_fullStr | Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title_full_unstemmed | Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title_short | Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia |
| title_sort | involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in australia |
| topic | Fetal alcohol spectrum disorder Consumer participation Research |
| url | http://hdl.handle.net/20.500.11937/25244 |