PARTICIPANT INFORMATION SHEET
Title of study: Exploring autistic parents' experiences of parenthood: An online qualitative Study
Name of Researcher: Taneta Hannaway, undergraduate student at University of Salford
1. Invitation paragraph
You are being invited to take part in a research project exploring the experiences of autistic parents. Before you decide on whether to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully before you decide whether or not you wish to take part. You are welcome to discuss this project with others if you wish before you make your decision. Please contact the researcher via t.t.hannaway@edu.salford.ac.uk if there is anything that is not clear or if you would like more information.
2. What is the purpose of the study?
The research study is about the experiences of parents who have a diagnosis of Autistic Spectrum Disorder (ASD). I am interested to hear from mothers and fathers with autism about their experiences with various aspects of parenting. There is currently limited research that explore how autistic parents experience parenthood, I hope this research will contribute to a greater understanding and provide a more in-depth look at these experiences.
3. Why have I been invited to take part?
You have been invited to take part as you meet the following criteria:
4. Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part you will be given this information sheet to keep, you will be asked to sign a consent form and you can still withdraw at any time during the study and up to 1 week after without it affecting any benefits that you are entitled to in any way (see expenses and payments below). You do not have to give a reason for withdrawal. If the study was completed entirely online, you can request a copy of the information sheet by contacting the researcher.
5. What will happen to me if I take part?
The study involves accessing an online survey via Jisc. If you decide to take part in the study you will be directed to a page via Jisc where you will be asked to provide demographic information such as age, gender. You will be asked to confirm eligibility and to complete a consent form before continuing with the survey. You will be required to provide a unique code word to ensure anonymity. You should make a note of this so that if you decide to withdraw from the study, you can do so by providing this code. The survey will contain open-ended questions which require detailed responses about the various aspects of parenthood. Some questions may be upsetting to some people as they may require you to reflect on negative experiences. An example of such question is ‘Which parts of being a parent are the hardest?’. You do not have to answer any questions you do not want to. The survey should take around 30-45 minutes to complete. Please note that if I am made aware of a safeguarding concern then I am obliged by the university of Salford’s safeguarding policy to report this to a designated safeguarding officer.
6. Expenses and payments?
No reimbursements or incentives will be given to participants.
7. What are the possible disadvantages and risks of taking part?
For some people the topic of parenting can be a sensitive subject and you may find discomfort responding to some of the questions that ask you to recollect challenging experiences. It is important to know that you are not obliged to answer any questions you do not want to. If you experience any distress following participation you are encouraged to inform the researcher and contact the resources provided at the end of this sheet.
8. What are the possible benefits of taking part?
We cannot promise the study will help you but the information we get from the study will help to increase the understanding of autistic parents’ experiences of parenthood. We are a University and so it is part of our reason for being that we advance knowledge through research as well as through teaching. Your participation in this research helps us to do that.
9. What if there is a problem?
If you have a concern about any aspect of this study, you should ask to speak to the researcher by email (t.t.hannaway@edu.salford.ac.uk) who will do their best to answer your questions.
Following this, if you have any issues or complaints, you may contact the research supervisor Janice Crosbie by email (J.Crosbie@salford.ac.uk).
If the matter is still not resolved, please forward your concerns to Dr Linda Dubrow-Marshall, Co-Chair of the Health Taught Ethics Panel l.dubrow-marshall@salford.ac.uk, or Dr Anna Cooper-Ryan, Co-Chair of the Health Taught Ethics Panel a.m.cooper-ryan@salford.ac.uk.
10. Will my taking part in the study be kept confidential?
All information, which is collected, about you during the course of the research will be kept strictly confidential. To ensure anonymity you will be asked to provide a unique participant code that will be used to identify any data that you provide. All electronic data including demographic information and responses to the survey will be stored securely on the university OneDrive in a password protected file that only the researcher will have access to. Please note that your anonymised data (including any personal data and special categories of personal data processed according to conditions of article 6 (paragraph 1(a)) and article 9 (paragraphs 2(a) and 2(j)) of the General Data Protection Regulation (GDPR) 2018 respectively) will be used in the researcher’s data analysis and dissertation as part of a degree course, and potentially in any related publications or conference presentations. Here is the link to the University’s Research Privacy Notice that sets out details about the University’s processing of personal information for research purposes:
https://www.salford.ac.uk/privacy/introduction/research-privacy-notice
11. What will happen if I don’t carry on with the study?
You may withdraw at any time during the study by closing the browser. If you decide to withdraw from the study all the information and data collected from you up until the point of withdrawal will be destroyed. If you wish to withdraw from the study after you have taken part provided that this request is made 1 week of completing the survey (after which point the data analysis will begin, and withdrawal will not be possible). You wish to withdraw from the study, please email the researcher t.t.hannaway@edu.salford.ac.uk with your participant ID code to request for your data to be removed.
12. What will happen to the results of the research study?
The results of the study will be used as part of the researcher’s third year dissertation for the BSc Psychology and Counselling course at the University of Salford, and potentially in future academic conferences and publications.
13. Who is organising or sponsoring the research?
This research is being carried as part of the BSc Psychology course at the University of Salford.
14. Further information and contact details:
If you have any further questions, please feel free to contact:
Researcher: t.t.hannaway@edu.salford.ac.uk
Researcher supervisor: J.Crosbie@salford.ac.uk
If you would like further information about the topics covered in the study and/or need support, please contact the organisations below:
https://www.autism.org.uk/what-we-do/support-in-the-community/family-support
https://www.autisticparentsuk.org/
https://www.nhs.uk/conditions/autism/support/
You can call the Family Lives helpline for free on 0808 800 2222 for emotional support and guidance, visit https://www.familylives.org.uk/how-we-can-help/confidential-helpline for more information
If you are unhappy with any aspect of the study or you would like to make a complaint, please contact l.dubrow-marshall@salford.ac.uk, or Dr Anna Cooper-Ryan, Co-Chair of the Health Taught Ethics Panel a.m.cooper-ryan@salford.ac.uk.
Thank you for taking the time to read this information sheet. To make an informed decision about whether to participate, please feel free to take up to 24 hours to review the information. If you wish to participate in the study, please continue to the next page using the buttons below.
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