U21 Autism Research Network Introductory Study- Language Preferences
Information Sheet
Please read this information carefully before deciding whether you wish to take part in the study. If you have any further questions please contact the U21 Autism Research Network at
[email protected], Connor Keating at
[email protected], Lydia Hickman at
[email protected], or Dr Sophie Sowden at
[email protected].
When you are happy that you have all of the information you need to be able to decide whether or not you would like to take part in the study, please complete the consent form on the next screen.
Background
We would like to invite you to take part in a research study being conducted by the Birmingham Psychology Autism Research Team (B-PART), at the University of Birmingham, on behalf of the U21 Autism Research Network. This research work aims to explore autism-related language preference.
Aims of the study
This study aims to further our understanding of autism-related language preferences in individuals with ASD (e.g., person with autism vs. autistic person). Eventually we hope that our results will help to improve the quality of life of individuals with ASD and their families.
What will happen if you decide(s) to participate?
Where will the study take place?
This study will take place online.
Who will be involved in collecting the data?
Members of the research team at the Birmingham Psychology Autism Research Team (B-PART) including Dr Sophie Sowden, Miss Lydia Hickman and Mr Connor Keating.
How long will participation in the study take?
Taking part in the study will take no longer than 15 minutes.
We will be collecting information from participants between January 2021 and September 2021. After this we will spend some time understanding the information we have collected and writing reports. This means that the study should be finished in January 2022.
What will you be required to do during the study?
You will complete a number of questions relating to language preferences.
Are there any risks that individuals taking part in the study might face?
The risks associated with participating in the study are no greater than what individuals would experience in day-to-day life.
What are the potential benefits for participants from taking part?
This study will help us to find out more about the lives of people with ASD. In addition, after participating, you will have the opportunity to email the researchers to discuss the aims of the study, something which participants have found interesting.
Where will data be stored?
The data collected will be kept in locked or password protected storage at the University of Birmingham. All information gathered about you will be stored separately from any information that would allow someone to identify who you are (this is known as personal identifying information, e.g. your full names, your address, your contact details). Your personal identifying information will be stored on a secure server and only members of our research team will have access to it. We will only be able to trace the information we have collected about you back to you using a special reference number which we will store in a password protected database held at the University of Birmingham. Only members of our research team will have access to that database. Personal identifying information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 2018.
Will I be paid compensation for my time?
You will be entered into a prize draw to win a £50 voucher.
If you decide to participate, what will happen after that participation?
Descriptions of research findings will be published in newsletters of autism support groups and educational institutions.
Sometimes after you have participated in the study, the first results may suggest to us that it would be useful to find out more information to make sure that the overall results of the study are as useful as possible. If this happens then we would contact you again before the end of the study to ask whether or not you would be willing to provide us with the extra information or if you might like to participate further in the study.
The researchers will also publish the findings from the study in scientific journals and will present the results at relevant conferences.
What will happen to the data afterwards?
The information that you provide will be locked in a filing cabinet at the University of Birmingham or held on a password protected database. All personal details will be kept separately from the information collected. Participants will be identified by a unique number so that it will only be possible to connect results to individuals via this number. This will ensure that results are kept anonymous.
If you consent for us to make your data available online, the data will be anonymised and uploaded to a datasharing website such as the Open Science Framework (
OSF). Anonymisation means that information that would enable people to identify you will be removed. For example, your name, age and contact details would not be uploaded, instead your name would be replaced with a participant ID code. We would like to make the data available online because this will allow other research teams to look at and analyse the data. This is important for scientific reproducibility because it means other teams can check our analyses. It is also often important for scientific progress because it means that other teams can suggest different ways to analyse the data.
Confidentiality
The confidentiality of participants will be ensured. If published, information on the participant will be presented without reference to their name or any other identifying information. In the unlikely event of any evidence of abuse being identified, this information will be disclosed by the research workers.
Consent
After having read all of the information and having received appropriate responses to any questions that you may have about the study you will be asked to give your consent to participate in the study if you decide that you do wish to participate. We need to receive consent from you in order for you to participate.
Withdrawal
Even after consent has been granted, you can request to be withdrawn from the study and for your research data to be destroyed. You will have up to 1 month after participation to indicate your withdrawal from the study, without giving a reason. This will not restrict access to other services and will not affect the right to treatment. After 3 months of participating in the study, your personal details will no longer be linked to the information collected as part of this study. This means that we would no longer be able to trace the results of your assessments back to you and withdraw you from the study.
What if there is a problem?
If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Please contact Dr Sophie Sowden at
[email protected] in the first instance. If you remain unhappy and wish to complain formally, you can contact: Prof. Ed Wilding; Head of School; School of Psychology, University of Birmingham, Birmingham, B15 2TT, by email:
[email protected] or by phone on 0121 414 4931
Review
The study has been approved by the Science, Technology, Engineering and Mathematics Ethical Review Committee at the University of Birmingham.
Further information
If you would like any more information about the study please contact Connor Keating at [email protected] or Lydia Hickman at [email protected]. Or, you may contact Dr Sophie Sowden at [email protected] or write to her at the School of Psychology, University of Birmingham, Edgbaston, Birmingham, B15 2TT.
Please read this information carefully before deciding whether you wish to take part in the study. If you have any further questions please contact Dr Sophie Sowden at
[email protected]. If you have any medical/ other problems which make it difficult for you to read this information, please let us know and we will provide a verbal explanation of the research.
When you are happy that you have all of the information you need to be able to decide whether or not you would like to take part in the study, please complete the consent forms on the next screen.
