Thank you for taking an interest in this study. We are interested in learning about the experiences you and your child autistic child have encountered when seeking hospital assistance.
Who is conducting the research?
GU ref no: (2022/148)
Supervisors: Assoc.Prof. Dawn Adams and Dr Jessica Paynter Autism Centre of Excellence, School of Education and Professional Studies (07) 3735 5854 Dawn.Adams@Griffith.edu.au j.paynter@Griffith.edu.au
Student Research: Amanda Cook firstname.lastname@example.org
Why is the research being conducted?
Every day, autistic children and adults utilise healthcare services, many of which are in the hospital setting. Some parents and children have told us that they can sometimes experience barriers when accessing these services. We would like to know more about how and when these barriers are experienced. This knowledge will help us work with healthcare providers to understand how and why health disparities occur and assist future research in addressing interventions that improve healthcare for autistic children.
What will I be asked to do?
If you choose to participate, you will complete this online questionnaire which will include some general demographic questions about you and your family, and some standardised questionnaires asking you which barriers to healthcare your autistic child has experienced. In total, the pack will take about 25-30 minutes to finish, and you can stop and start the questionnaires as many times as you like.
Who can take part?
We are inviting parents or caregivers of autistic children aged 3 to 16 years on the autism spectrum who have accessed a hospital (public or private) in Australia within the previous five years (2018-2022) to participate.
The expected benefits of the research?
This study aims to contribute new knowledge to the field of autism and healthcare by identifying the barriers encountered by autistic children accessing healthcare. Once these barriers are identified, appropriate interventions may be implemented to enhance hospital care for autistic children.
We aim to publish the results in journal articles to share the information with healthcare providers and the research community. We will also share the results on our Facebook page so that people outside of the research community can read them too.
Risks to you
As we ask you to reflect on your child’s experience in hospital, you may experience distress in response to completing the questionnaire. If you experience distress, some national organisations are available to provide you with help and guidance. For example, telephone services such as Lifeline (Tel: 13 11 14, website www.lifeline.org.au) or Beyond Blue (Tel: 1300 22 4636, website www.beyondblue.org.au) can be accessed. Alternatively, you may wish to speak to either of the project coordinators (contact details at the top of this sheet), who will direct you to the appropriate care.
Your data is anonymous, and the research team will not know the participatory status of individuals. There will be no identifying information on your questionnaire, and any publications that may come from this information will only be reported anonymously through combined results, not individual results. All collected data will be entered into password-protected files, which only the project team can access. All research data (questionnaire responses and analysis results) will be retained in a password protected electronic file at Griffith University for five years before being destroyed.
A de-identified copy of this data may be used for other research purposes, including open publishing (e.g. in an open access repository). However, your anonymity will at all times be safeguarded.
At the end of the questionnaire, you will have the option to enter a prize draw for 1 of 5 $50 Prezzee Smart eGift cards. This component is voluntary, and the details supplied in connection with this will be stored separately from the questionnaire. Recipients of these gift cards will be notified via email at the completion of data collection or in August 2022 (whichever comes first).
Your participation is voluntary
Your participation in this study is completely voluntary, and you can withdraw from the study at any time by closing the questionnaire browser. However, please note that as the questionnaire is anonymous, your responses cannot be withdrawn once submitted. Your decision whether or not to participate will not affect your relationship with the researchers or Griffith University.
Questions / further information
You are welcome to ask questions about the research and raise any concerns you have before agreeing to participate. These questions can be directed to the project coordinators, Associate Professor Dawn Adams (Dawn.Adams@Griffith.edu.au) or Dr Jessica Paynter (j.paynter@Griffith.edu.au).
The ethical conduct of this research
Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research. If you or any potential participant have any concerns or complaints about the ethical conduct of the research project, they should contact the Manager, Research Ethics on 3735 4375 or email@example.com quoting GU Ref (2022/148).
Feedback to you
As all data is anonymised when submitted to the research team, it is impossible to provide individual feedback. However, the results of the study will be published on our Facebook page: Autism Centre of Excellence. Alternatively, upon completing the questionnaire, there is an option to receive an abstract of the study via email.
Completion of the questionnaire will be taken as your consent to participate in the research.