Looking Backwards to Look Forwards - About the study
Participation and withdrawal
Thank you for your interest in our study. Recruitment for this project has now closed.
To participate you need to have been diagnosed with an ASD (including Autism or Asperger’s syndrome/disorder) and be aged 18 years or over. The survey will ask questions about your childhood experiences of being parented, the parenting styles of your two main caregivers, and how you are coping now (both socially and emotionally). Participation in this study is completely voluntary and you are free to withdraw at any time without prejudice or penalty. If you wish to withdraw, simply stop completing the survey.
What is involved?
Participation in this study involves completing an online survey taking approximately 30 minutes. The survey will ask for your feedback on your childhood experiences of being parented, advice you would give to parents of a child newly diagnosed with ASD, and how you are doing now (emotionally and in close relationships). Finally, we do ask some questions relating to autistic traits that will provide us with valuable information about the group of participants who take part in this study.
Risks
Participation in this study should involve no physical or mental discomfort, and no risks beyond those of everyday living. We acknowledge, however, that this survey covers some sensitive topics. We’ve done our best to use language that will accommodate various preferences. If you find any question offensive, you are free to omit answering or participating in that aspect of the study. We recognise that remembering childhood experiences can be emotional for some individuals. If you require support after completing the survey, it can be sought through your local GP, Lifeline (13 11 14) or BeyondBlue (1300 22 4636).
Are there any benefits to participating?
Although participating is unlikely to directly benefit you, your perspective as an autistic adult/adult with ASD is invaluable and we know that your lived experience is important. We are keen to learn from you directly, and to use the information you give us to better inform how health practitioners work with parents and families of children with ASD. By taking part in this study you will help us find better ways to support children with ASD and their families.
Can I access the results of this study?
If you are interested in knowing the results of this study, please contact Ms Sarah Lee at lee.jy.sarah@uq.net.au , Dr Koa Whittingham on (07) 3069 7346 or at koawhittingham@uq.edu.au, or Dr Amy Mitchell on (07) 3346 1202 or at a.mitchell5@uq.edu.au after December 2020 to request an abstract of the study findings.
Confidentiality and Security of data
You will not be asked to provide your name or any other identifying information. The study personnel will not reveal your identity at any time. All data collected in this study will be stored confidentially. Only members of the research team will have access to identified data. All data will be coded in a de-identified manner and subsequently analysed and reported in such a way that responses will not be able to be linked to any individual. The data you provide will only be used for the specific research purposes of this study.
Ethics clearance and contacts
This study has been cleared in accordance with the ethical review processes of the University of Queensland and within the guidelines of the National Statement on Ethical Conduct in Human Research. You are, of course, free to discuss your participation with project staff (Ms Sarah Lee at lee.jy.sarah@uq.net.au Dr Koa Whittingham on 07 3069 7346, or at koawhittingham@uq.edu.au, or Dr Amy Mitchell on 07 3346 1202, or at a.mitchell5@uq.edu.au).
If you would like to speak to an officer of the University not involved in the study, you may the University of Queensland Ethics Office on 07 3365 3560, email: humanethics@research.uq.edu.au.
