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Understanding Repetitive Behaviours in Autism and Obsessive-Compulsive Disorder
Participant Information Statement
Griffith University Ethics Approval Number: 2023/550
Who is doing this research?
Jessica O'Loghlen, Clinical PhD Student, School of Applied Psychology, Griffith University
Dr Jessica Paynter, School of Applied Psychology, Griffith University
Dr Matthew McKenzie, School of Applied Psychology, Griffith University
Dr Cathryne Lang, School of Applied Psychology, Griffith University
Who can I contact for questions?
Jess (Jessica Paynter; Chief Investigator), phone 07 5678 7058, e-mail j.paynter@griffith.edu.au or
Jess (Jessica O'Loghlen; Student Researcher), phone 07 3735 8136, e-mail j.ologhlen@griffith.edu.au
Why is this research being done?
Autistic people and people with obsessive-compulsive disorder (OCD), or those with both conditions, can each show behaviours that may be called repetitive behaviours. We want to know how these behaviours are the same or different for each group, and what strengths and challenges associated with autism or OCD features, or aspects of psychological distress or quality of life, are linked to these behaviours. We hope in future this will help improve diagnosis and support for autistic people and people with OCD by providing better understanding of repetitive behaviours.
What am I being asked to do?
Complete an anonymous online survey (approximately 30 minutes). The online survey asks questions about your experiences with repetitive behaviours and interests and any obsessive-compulsive symptoms, as well as questions about autism characteristics, psychological health, and quality of life. Once you have completed the survey, you have the option to enter a prize draw to win one of two $100 Visa gift vouchers.
Who can participate in this research?
Autistic adults, adults with OCD, or adults with both diagnoses (18+ years).
Benefits
This research will not directly benefit you. However, by completing this survey, you will help us to better understand repetitive behaviours, and the ways in which different repetitive behaviours may contribute to psychological health and life quality for autistic individuals and those with OCD. We hope this will help with identifying and providing support for autistic individuals and persons with OCD. This knowledge is likely to benefit others on the autism spectrum and people with OCD in the future.
Risks
You might feel discomfort answering questions about your experiences with repetitive behaviours that you find distressing or uncomfortable. Some questions, particularly those relating to some types of obsessions (e.g., fears about harming self or others, thoughts about disturbing images such as car accidents, thoughts about demonic possession, and sexual thoughts), may cause higher levels of distress. If this happens you could call Lifeline (13 11 14), or chat to Jessica Paynter during business hours (Monday-Friday 9am-5pm, AEST) who is a psychologist who can help you find support. Alternatively, if you are finding the questions too distressing, you are free to withdraw your participation at any time by exiting the online survey.
Your confidentiality
Your survey responses will be completely anonymous. Should you elect to enter the prize draw, your personal details will be collected separately, and will not be linked to your survey responses. No identifying information will be retained for analysis which will use only anonymous information. All data collected for this research project will be stored securely on Griffith University's IT system. No potentially identifiable information (i.e., information that could potentially identify individual participants either alone or in combination such as date of birth and postcode) will be reported in any publications that may arise from these data to maintain individual participant anonymity. Your de-identified information will also form a component of Jessica O'Loghlen's academic thesis for the program of Doctor of Philosophy in Clinical Psychology.
All raw data will be destroyed 5 years after the final publication date. Data kept on file may be used in future research projects that are an extension of, or closely related to, this research. De-identified data from this study may be shared with the research community at large to advance education, science, and health. We will remove any potentially identifiable information that could identify the participants either alone or in combination before files are shared with other researchers to ensure that, by current scientific standards and known methods, no one will be able to identify the participants from the information we share. Research results may be reported via journal articles, conference presentations, or in social media.
Voluntary
Your participation in this research is completely voluntary. Participation will not impact upon your relationship with your school, organisation, the researchers, or Griffith University. If you agree to participate, you can stop at any time by exiting the online survey. You will not be able to withdraw your responses once they are submitted as the research team will not be able to identify individual responses.
Results
We can send you a summary of findings if you would like (see last question at the end of the questionnaire). We will keep your details separate to your answers.
Ethics
Griffith University completes research in line with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the ethical conduct of the research project you should contact the Manager, Research Ethics on 07 3735 4375 or research-ethics@griffith.edu.au.
Legal Privacy Statement
The conduct of this research involves the collection, access, storage and/or use of your identified personal information. The information collected is confidential and will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. A de-identified copy of this data may be used for other research purposes, including publishing openly (e.g., in an open access repository). However, your anonymity will at all times be safeguarded. For further information consult the University's Privacy Plan at http://www.griffith.edu.au/about-griffith/plans-publications/griffith-university-privacy-plan or telephone 07 3735 4375.
Prize Draw Information
- By electing to participate, you accept these terms and conditions as governing the prize draw. Instructions on how to enter the prize draw and details advertising the survey form part of the conditions. Any personal information you provide to us while entering the prize draw will be dealt with by us in accordance with our privacy policy (see "Legal Privacy Statement").
- Two $100 Visa gift cards will be awarded in the prize draw. Should the advertised prize become unavailable because of circumstances beyond our control, we are free (at our sole discretion) to substitute a cash prize equivalent to the value of the prize advertised.
- Entry is free (other than the cost of accessing the website, which is your responsibility). Entry is open between 01/08/2023 and 28/02/2025. Entries received after the closing date will not be accepted.
- To enter the prize draw, you must: (a) be over 18 years old; (b) complete the online questionnaire; and (c) provide a valid email address.
- You may not enter the prize draw if you are: i) a member of the research team, ii) employed by the research team; iii) an immediate family member of someone identified at 1 or 2 above.
- You may only submit one entry in the prize draw.
- All survey and other materials provided by you become our property. No responsibility is taken for late, lost or misdirected surveys or entries.
- Following the closing date, the prize winners will be selected randomly from valid entries received. Each entry can only be drawn once.
- Subject to system malfunction, the draw will occur on 03/03/2025. If the systems supporting the draw are not functioning as they should when the draw is due, the draw will be held as soon as possible once the systems become functional again. Prize winners do not need to be present at the time of the draw.
- Prize winner names will not be published.
- The relevant prize will be sent to each prize winner in the form of an e-voucher at the email address captured within the survey instrument. If an email address has not been supplied, the entry will be treated in accordance with the information outlined below.
- Prizes will be emailed within two weeks of the draw.
- The right to a prize is not transferable or assignable to another person.
- If any prize winner cannot be contacted within three (3) months of the draw, then that person's right to the prize is forfeited and the prize will be treated as an unclaimed prize.
- Only one redraw of unclaimed prizes will take place, and other existing prizes are not affected. The redraw prize winner(s) will be randomly selected from remaining valid entries and notified within two (2) weeks of the redraw. If the redraw prize winner(s) cannot be contacted within three (3) months of the redraw, then we may determine that the relevant prize(s) will not be awarded.
- Prizes cannot be substituted for another prize at the election of the prize-winner.
- We are not liable for any loss, expense, damage, or injury sustained by any entrant in connection with this prize draw, the prize or redemption of the prize, except for any liability which cannot be excluded by law (in which case, that liability is limited to the minimum allowable by law).
- We may suspend the promotion if we determine that the integrity or administration of the promotion has been adversely affected due to circumstances beyond its control. We may disqualify any individual who tampers with the entry process.
CONSENT FORM
By acknowledging below, I am indicating that my involvement will include completing an online questionnaire. I am satisfied that any questions I had have been answered. I understand that I may experience personal discomfort responding to questions and can contact Lifeline (13 11 14). I understand I may elect to receive a summary of results once the project is completed.
I understand that some non-identifiable information (data) from this study may be shared with other researchers to improve knowledge in the areas of science and health. I understand that non-identifiable aggregated data collected in this project may be used as comparative data in future projects.
I understand that my participation in this research is voluntary and the information I share will not in any way impact on my relationship with Griffith University or the researchers. I understand that I am free to withdraw at any time, without explanation or penalty. I understand that I can contact the Manager, Research Ethics, at Griffith University Human Research Ethics Committee on 07 3735 4375 (or research-ethics@griffith.edu.au) if I have any concerns about the ethical conduct of the project; and by completing this form, I agree to participate in the project.
Completion of this survey will be taken as your consent to participate in the research.
You can download a copy of the participant information sheet here: Participant Information Sheet and Consent Form.docx