Study Information

Dear parents,

My name is Jeanna Song and I’m recruiting families for a Master level research project associated with the Queen’s University. Please find detailed study information below. Thank you!

Purpose:
The current study aims to explore the differences in behaviors, symptoms, and experiences, for boys and girls with diagnoses in (or are under investigation for) ASD. Hopefully the findings will bring lights on the reasons behind this diagnostic gender gap and make it easier for girls with autism to receive diagnoses and treatments.

Procedures:
Parents of children (both boys and girls under 18 years of age) with Autism or are under the investigation for autism are invited to participate in the study carried out by a Master level research student from Queen’s University at Belfast. The study includes a short online questionnaire regarding behaviors of the children. The questionnaires should take about 20-30 minutes to complete.

To gain a further understanding of the experience of being a girl with autism, we are also inviting parents of female participants (under 18 years of age) and those girls between 6-18 years old to complete a short interview (takes about 30 minutes). Interviews can be arranged to take place in public settings (ASD clubs, coffee shops, etc.) for  families living in Belfast, Northern Ireland, or it can be scheduled over the phone/Skype. 

If interested, you will receive separate consent forms for the interview. This is only a consent to participate in the questionnaires.

Data Protection:
You might be asked to provide contact information along with the consent form, which will be used for contact purpose only (sending links to online questionnaires, setting up interviews, and contacting school teachers/ASD club leaders).
After we receive your consent to participate, you will be assigned a study ID number, which will be used to identify your data from the questionnaires and interviews. None of the data you provide will be labelled by your name or any other identifiable information.
Once the data collection process is complete, the contact information will be destroyed and discarded in line with QUB guideline. All data collected for the study will also be destroyed under the QUB guideline after five years.

Voluntary Participation:
You have complete freedom to choose whether or not to participate in this study. If you wish not to be part of the research, there will be no consequences for you or your child, nor would it hurt your relationship with the organizations. You can choose which part of the study you wish to participate in (you will give separate consents to complete the questionnaires, participate in the interviews, or for us to contact the teachers/ASD club leaders), and skip any questions on the questionnaire/during the interview. You are also free to withdraw from the study at any time up until the point of data analysis (expected September 5th, 2018), with no explanation needed.
Benefits:
The data collected through this study will aid the understanding in reasons behind the ASD diagnostic gender gap and will be used to help girls with/under investigation for autism. The finding from this study will hopefully bring awareness to professionals and consequently improve the current difficulties parents of girls have in receiving ASD diagnoses and treatments.

Harms:
These is minimal harms to participate in the study. The questionnaires and interviews might be time-consuming and adds extra workloads to parents. Some of the questions regarding personal experiences might also cause distress. However, participants have the right and freedom to withdraw from the study at any time, or to skip any questions if they wish to.

Ethics Approval:
The current study is approved by the QUB School of Social Sciences, Education and Social Work (SSESW) Ethics Committee. If you have any concerns regarding the study procedures or data handling, please contact the approval body via research supervisor: Dr. Laura Dunne.

Researcher Contact Details:
Jeanna Song
Email: jsong07@qub.ac.uk

Research Supervisor Contact Details:
Dr. Laura Dunne
Email: L.Dunne@qub.ac.uk

By continuing onto the next page, you are agreeing to the following:
  • I have read the information that explains the study.
  • I understand that the study is asking me to fill out a questionnaire regarding my child’s behaviors and traits.
  • I understand that all the information gathered will be kept strictly confidential and that my name, my child’s name, and the name of the organisation/school will not be included in any reports.
  • I understand that participation is voluntary and that I am free to withdraw my consent at any time (until the point of data analysis, expected September 5th, 2018).
  • I understand that this research will be published in form of a Masters dissertation

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