A FASD-CAN member's research project which aims to guide information development and delivery practice...
My name is Jo van Wyk, and I live with my whānau in Tairāwhiti Gisborne. Apart from my role as Research Associate on the Aotearoa New Zealand Diagnostic Guidelines project currently being overseen by Hāpai Te Hauora, I am also completing my PhD through Massey University. The focus of my research is looking at the information needs, behaviours, and practices of individuals with FASD and those who support them to guide information development and delivery practice. My supervisors are Dr Sally Clendon and Dr Elizabeth Doell from Massey University and Professor Anita Gibbs from Otago University. I am also very lucky to have Clinical Neurophysiologist Sarah Goldsbury as a mentor and one of my cultural advisors.
I became interested in conducting this research through listening to the experiences of individuals with FASD and their whānau. What I heard the members of this community frequently express is the considerable lack of information, knowledge and understanding about FASD, leading to families having to, not only educate themselves, but at times other family members, friends, and professionals as well. This situation is unfortunate as the provision of timely and accurate information is vital in supporting positive outcomes for individuals with FASD and their whānau.
This study is relevant to the Guidelines Development project as international research highlights that parents do not feel they receive sufficient information at the time of diagnosis and that following diagnosis parents actively seek information. Yet little is known about what information they would like or how they go about finding it. I am wondering if you would be able to help with my PhD research by completing an online survey that explores the information needs, behaviours, and practices of professionals who provide diagnostic, assessment or other support services for individuals with FASD and their whānau. While this research does not form part of the Guidelines work, and you aren’t under any obligation to complete the surveys, the results may provide useful information for the guidelines project.
Along with professionals, I am also very keen for individuals with FASD and parents/caregivers and whānau to complete the surveys and/or take part in interviews so if you are also able to share the flyer through your professional and whānau networks that would be amazing.
The survey should take between 30-60 minutes. If you would like to take part, please click on the appropriate link below. The survey is completely anonymous, but you’ll also be invited to take part in an interview. Many thanks in advance!
Parents/caregivers: https://massey.au1.qualtrics.com/jfe/form/SV_5pci2G3PTwkPKq9
Individuals with FASD: https://massey.au1.qualtrics.com/jfe/form/SV_eakBCIYg35YKolf
Professionals: https://massey.au1.qualtrics.com/jfe/form/SV_bxQtqHW9RWSMgCx
