Description of the project: If you choose to take part in this project, after reading this information you will be asked to sign a form that says you agree to take part and for your data to be held at the University of Birmingham. Please remember that all the data we collect from you will not have names and contact information, and so nothing can be traced back to you as a family and it in no way will affect the services you receive.
We will then arrange an interview with you. This will be conducted either online or by phone. You can have someone with you if you feel more comfortable. We can also provide an interpreter if you prefer the interview being conducted in a language other than English. Ahead of the interview, we can also arrange for you to speak to one of the researchers if you have questions.
The interview will be recorded and then immediately transcribed (we will write out what was said in the interview). We will then delete the recording and make sure the transcript is totally anonymous (e.g. it doesn’t contain names or locations).
The questions we will ask you in the interview will be sent ahead of time, so you can think of your answers.
Your Rights: Please remember that you don’t have to take part in this research. It is totally up to you whether you take part or not. You also have the right to not answer specific interview questions if you do not want to or you can’t think of an answer for them.
After we have completed the interview, you can contact us within the next seven days to say you no longer want to take part and you would like your data deleted. You don’t need to give us any reason for no longer taking part. The email address to let us know you no longer want to take part is: s.b.wallace@bham.ac.uk
After seven days from completing the interview, it will not be possible to withdraw as data analysis will have started.
Confidentiality and Disclosure of Information: All data will be anonymised, which means that names, locations or anything that could be traced back to you or the school will be deleted or modified. In addition, the data will only be accessed by members of the project team and will not be placed on the internet.
Data storage: The electronic data will be stored using the University of Birmingham “Research Data Store (RDS)” and the “Research Data Archive (RDA)” service. These services provide encryption for further protection, and only the research team will have access to them. The data will be kept safe for at least 10 years, following the University of Birmingham code of conduct for research. After this period, they will be deleted from the electronic system.
Results of the study: You will not receive direct feedback about the findings from this research but you will be able to read the final report by keeping track of the ACER website (Autism Centre for Education and Research | ACER | Birmingham) and Twitter account (@UoBautism). If you do want to receive a paper copy of the synopsis of the findings, please let us know and we will arrange this for you. We also intend to give feedback of the research through teacher or academic conferences and meetings to benefit other professionals in the field of autism. We also plan for our findings to be used to train school staff in how to work with families from a diverse range of backgrounds. Only anonymised data will be used in all project reports, training and publications.
What may come up during the interview: If what is discussed during the interview brings up concerns or upsetting memories, then we would encourage you to discuss these further with friends, loved ones or members of staff you have a good relationship with at the school. You can also visit the National Autistic Society advice and support page (https://www.autism.org.uk/what-we-do/help-and-support). Another option is that we can put you in touch with autism charities from other countries if that is helpful.
We ask that you not include in your responses your name, teachers’ names, the names of other families or pupils or the name of the school or the town you live in. Any identifiable personal information like this will be deleted from the transcript.
We ask that you not report to us issues that are highly sensitive in nature (e.g. child or family safety concerns) or part of ongoing legal cases. If you are looking for guidance as to what to do in these instances then they should be raised with the school leadership or local authorities. However, if during the interview you share any information which may raise safeguarding issues for you as a family or your child or has legal implications, we will need to report these to the Legal Services team at the University.
The Research Team: The research is led by Professor Karen Guldberg (e-mail: k.k.guldberg@bham.ac.uk). Professor Karen Guldberg is Director of the Autism Centre for Education and Research (ACER) at the School of Education, University of Birmingham. She has been appointed as the principal investigator and External Content Manager of this project. Dr Prithvi Perepa, lecturer in autism studies at ACER, and Dr Simon Wallace are co-investigators on the project P.Perepa@bham.ac.uk s.b.wallace@bham.ac.uk .
Feedback: Should you have any more questions/concerns about the project or the interview, please contact one of the research team.
If you agree to participate, please fill in the consent form accompanying this sheet.
Thank you for your consideration.
