Alcohol use during pregnancy and fetal alcohol spectrum disorder priority setting workshop

Alcohol use during pregnancy and fetal alcohol spectrum disorder priority setting workshop

On November 08, 2017

At 305 Murray St, Perth WA 6000, Australia

Fetal Alcohol Spectrum Disorder Priority Setting Partnership Project

Consensus Workshop

Participant Information Sheet

 

You are invited to work with project investigators at the Telethon Kids Institute and the WA Health Translation Network Consumer and Community Health Research Network to identify the issues and questions that you feel are important to Fetal Alcohol Spectrum Disorder (FASD). This may be concerns relating to prevention (alcohol consumption during pregnancy and the potential impact on children and families), diagnosis, treatment or support for people who are affected by FASD.

The research team conducting this research project include the following investigators: from Telethon Kids Institute - Carol Bower, Elizabeth Elliott, Amy Finlay-Jones and Narelle Mullan; community members – Neil Reynolds, Helen Donnelly, Paula Sargent, Bridgette Birda and Diane Mayers; and from the Consumer and Community Health Research Network - Anne McKenzie and Rebecca Nguyen.

What is this project about?

The FASD Research Australia Centre for Research Excellence is a national research program that aims to reduce the effects of alcohol use during pregnancy by: supporting families to reduce or stop alcohol use in pregnancy, increasing awareness of Fetal Alcohol Spectrum Disorder (FASD), finding effective treatment and improving access to services for children with Fetal Alcohol Spectrum Disorder and their families.           

The aims of this project are to address this by:

  1. Conducting an online survey to identify themes and topics of interest for future research considered important by community members who are/have been affected by FASD and service providers, specifically around two streams: a) Prevention of FASD and b) Diagnosis and treatment of FASD.
  2. Conducting a follow-up online survey to rank the order of importance of the themes and topics identified from the survey results
  3. Holding a one-day consensus workshop, informed by the above-mentioned list to develop ten community priorities for the Prevention and Diagnosis and Treatment streams that will be used to inform future research of the Fetal Alcohol Spectrum Disorder Research Australia Centre for Research Excellence.

What does participation involve?

If you agree to participate you will be asked to attend a full day Consensus Workshop on 8th November 2017 and Mantra on Murray. The workshop will run from 9.30am - 4.30pm with lunch and refreshments provided.   It will be facilitated as a consensus workshop, where you can discuss topics (that have been identified from the community through the online survey) and have direct input into the development of a list of community priorities that will be used to inform future research. The sorts of things we would like to know about are your ideas for future research that will make a difference in the lives of people who are concerned about alcohol consumption during pregnancy and the potential impact on children and families, who have or are supporting those with FASD and FASD service providers.

Voluntary Participation and Withdrawal from the Project

Participation in this project is entirely voluntary. Should you no longer wish to be involved, you are free to withdraw at any time without explanation or justification by contacting the Project Coordinator Ms Rebecca Nguyen on (08) 6488 8176 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

Your privacy

No personal information will be collected from you at the Consensus Workshop. No identifying information will be reported in any subsequent publication or presentation.

All project-related information including participant information will be treated in a confidential manner and be stored securely at the Telethon Kids Institute’s password-protected electronic database or locked in the project manager’s office and will only be accessed bythe research team.

We are required to store the data for a minimum of 7 years after publication or project completion, after that time it will be destroyed. The information and data gathered from this study may be published, however the identity of participants will not be disclosed at any time. Participant privacy and the confidentiality of information provided by participants, is assured at all other times. The data will be used only for this project, and will not be used in any extended or future research.                

What are the possible benefits of this research project?

It is vital that any further research into this area is informed by questions that are important to people who has or supports someone with FASD either personally or professionally, as well as people who are concerned with the affects of alcohol consumption during pregnancy and the potential impact on children and families. Working together with the community to inform the development of a list of priorities to inform research within the Fetal Alcohol Spectrum Disorder Research Australia Centre for Research Excellence will have a much greater impact to the community. It will also allow the Priority Setting Partnership Project to direct research funding agencies to FASD research that is likely to have the most impact and importance to the community.

Are there any risks in participating in this research project?

You may find it difficult to describe or express your ideas - there is no 'right way' to do this and the project team members will work with whatever you manage to tell us about. You may also feel potential distress when confronted with memories or stories. A ‘quiet space’ in a separate break out room will be available on the day and a FASD support service staff available during and after the workshop for support. You are welcome to also access professional services via telephone or online at any time before or after the workshop if you feel you need to speak with someone.              
We recommend that you contact (we will also have this information available in the break out room):

Beyond Blue
Website: https://www.beyondblue.org.au/
Phone: 1300 22 4636
Chat: https://online.beyondblue.org.au/WebModules/General/OutOfHours.aspx

NOFASD AUSTRALIA      
Website: http://www.nofasd.org.au/      
Phone: 1300 306 238

Reimbursement

Participants that attend the consensus workshop will receive $50 in remuneration to cover travel and incidental expenses associated with workshop attendance. The workshop is available for Australian residents only.  Unfortunately support for travel costs to Perth are not available.

Who do I contact if I wish to talk about the project further?

If you would like to discuss any aspect of this study with a member of the research team, please contact me on 9489 7751 or email This email address is being protected from spambots. You need JavaScript enabled to view it. or Rebecca Nguyen on (08) 6488 8176 or email This email address is being protected from spambots. You need JavaScript enabled to view it. .

Approval to conduct this research has been provided by the University of Western Australia with reference number RA/4/1/9240, in accordance with its ethics review and approval procedures.  Any person considering participation in this research project, or agreeing to participate, may raise any questions or issues with the researchers at any time.  In addition, any person not satisfied with the response of researchers may raise ethics issues or concerns, and may make any complaints about this research project by contacting the Human Ethics office at UWA on (08) 6488 4703 or by emailing to This email address is being protected from spambots. You need JavaScript enabled to view it. . All research participants are entitled to retain a copy of any Participant Information Form and/or Participant Consent Form relating to this research project.