Participant Information Sheet

Participant Information Sheet:

Investigating Autistic Individuals’ Experiences of Applied Behavioural Analysis (ABA)

1. Invitation to research

My name is Holly and I am an MSc Speech and Language Therapy student at Manchester Metropolitan University. As part of my studies, I am undertaking research to find out about autistic people’s experiences of Applied Behavioural Analysis (ABA). I am inviting you to take part in the research.

2. Why have I been invited?

You have been asked to participate because you identify as autistic and have past experience of an ABA intervention. This may include traditional ABA, Early Intensive Behavioural Interventions (EIBI), or a form of Naturalistic Developmental Behavioural Intervention (NDBI). Specific NDBIs include (but are not limited to):

Early Achievements;
the Early Start Denver Model
enhanced milieu teaching
incidental teaching
Joint Attention Symbolic Play Engagement and Regulation
pivotal response training
Project ImPACT
reciprocal imitation training
SCERTS.

3. Do I have to take part?

It is up to you to decide. Please read through this information sheet, which describes the study. I will also go through it with you and give you chance to answer questions. I will then ask you to sign a consent form to show that you agree to take part. You are free to withdraw at any time, without giving a reason.

4. What will I be asked to do?

You will be asked to take part in a 1:1 interview - this can be via Skype video, or an online chat using the Skype chat box function or direct Twitter messages. It is anticipated this will take no longer than 60 minutes of your time in total.

You have the option not to answer one or more of the questions that are discussed. The results of the interview will provide data to help us understand autistic people’s experiences of ABA.

All data will remain confidential, and I will not share your personal data with any third parties, other than my dissertation supervisor. If you participate via a Skype session, this will be recorded; after this has been transcribed, the recording will be destroyed. If you participate in other ways (i.e. Skype chat/twitter exchange) all data will be copied from the chat and stored in an encrypted file once the chat has finished. It will then be destroyed once the project has been completed and I have received my final grade.

5. Are there any risks if I participate?

Potentially, you may be recalling past memories which could be unsettling. Please do not take part if you anticipate it will be too upsetting. If you become distressed at any point, you are can withdraw from the project.

6. Are there any advantages if I participate?

There will be no financial rewards for taking part. However, the research is an opportunity for autistic voice to be heard in research and will contribute towards the evidence base surrounding autism interventions.

7. What will happen with the data I provide?

When you agree to participate in this research, we will collect from you personally identifiable information. The Manchester Metropolitan University (‘the University’) is the Data Controller in respect of this research and any personal data that you provide as a research participant.

The University is registered with the Information Commissioner’s Office (ICO) and manages personal data in accordance with the General Data Protection Regulation (GDPR) and the University’s Data Protection Policy.

We collect personal data as part of this research (such as name, email address, or age). As a public authority acting in the public interest we rely upon the ‘public task’ lawful basis. When we collect special category data (such as medical information or ethnicity) we rely upon the research and archiving purposes in the public interest lawful basis.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained.

We will not share your personal data collected in this form with any third parties.

We will only retain your personal data for as long as is necessary to achieve the research purpose. Confidentiality will be assured throughout the research process, including final write up, where identifyng features will be removed from data and names will be changed. I will not disclose anything participants say to outside parties, and will remind participants that everything discussed is confidential. Confidentiality will be maintained in data-handling and disposal, as all data will be stored on a password protected computer that only I have access to, and will be destroyed in congruence with Manchester Metropolitan procedures, once my dissertation grade has been confirmed.

For further information about use of your personal data and your data protection rights please see the University’s Data Protection Pages.

8. What will happen to the results of the research study?

The results will be written up into a final dissertation. This will be reviewed my supervisor and a second marker. You may request a copy of the dissertation to be sent to you once it is complete.

9. Who has reviewed this research project?

My supervisor, Dr. Julie Lachkovic, has reviewed the research project. Ethical approval has been obtained from my university’s ethics committee

10. Who do I contact if I have concerns about this study or I wish to complain?

If you have questions or concerns, please do not hesitate to contact the research team as follows:

If you have any concerns regarding the personal data collected from you, our Data Protection Officer can be contacted:

Use the legal@mmu.ac.uk e-mail address, call 0161 247 3331, or in write to: Data Protection Officer, Legal Services, All Saints Building, Manchester Metropolitan University, Manchester, M15 6BH.

You also have a right to lodge a complaint in respect of the processing of your personal data with the Information Commissioner’s Office as the supervisory authority. Please see: https://ico.org.uk/global/contact-us/

For general questions about the research:

Please contact: Holly Brumby holly.brumby@stu.mmu.ac.uk. You can also contact my dissertation supervisor, Julie Lachkovic j.lachkovic@mmu.ac.uk