Participant Information Sheet

What Do You See? Parental Insights into the Characteristics of Autistic Children

You are being invited to take part in a research study that is being conducted by researchers at Newcastle University.  Before you decide whether you would like to participate it is important for you to understand why the research is being done and what it will involve.  Please take your time to read the information carefully and contact the researchers if there is anything unclear or you would like more information about.  You may discuss this with other people, such as a family member or friends. 

What is the purpose of this study?
Parents provide important insights into their child’s characteristics and behaviours.  Their perceptions about these characteristics may affect whether they seek support, and potentially, whether support is offered by professionals.  It is therefore important to understand what parents observe in their children, and whether these align with the characteristics that healthcare professionals look for.  All parents experience hopes and concerns about their children, but certain characteristics may be more important for parents of autistic children.  As such, it is important to identify areas of commonality and difference in experiences for parents of autistic and non-autistic children, to increase our understanding of how to tailor support. 

Research shows that there are many common observable characteristics which parents of autistic parents notice in their child, including language, development, play, and relationships.  However, most research has focused on the concerns of parents, without considering other characteristics, for example, strengths, which may also need support to nurture.  There is also little understanding of how parent characteristics and child gender affect parent observations and perceptions of their child’s characteristics, nor how these change with age.  The impact of these characteristics on parents’ thoughts about their child’s future are also unexplored. 

This study aims to:

  • Gain a deeper insight into parent observations of characteristics in their child and how these differ based on child diagnosis and gender, and parent characteristics,

  • Identify any links between parent-report of characteristics and time to seek support, receive a referral, gain a diagnosis,

  • Explore how these characteristics might change over time, and

  • Explore parents’ feelings about the characteristics that they observe in their child.


Who can take part in this research?
We are asking you to take part because you are a parent or caregiver of a child or children. Your child/children can be autistic or non-autistic, and can be over 18 years now, but we will only be asking about your experiences up until 18 years. If your child does not live in the family home but you have experiences you would like to share, you may also take part.

Do I have to take part?
No.  Taking part in this study is entirely voluntary.  You are free to choose whether to take part or not.  If you do decide to take part, you will be asked to sign a consent form. 

What will happen if I take part?
You will be invited to complete an anonymous survey online – we will not ask you to disclose any personal identifiable information.  If you agree to take part in the study, you will be asked to provide demographic details for both you and your child/children, including age, gender, diagnoses, ethnicity, education, family set up, residence and autistic characteristics.  We will then ask you to indicate characteristics that you have noticed in your child at different ages, including in areas such as their language development, cognitive abilities, sensory experiences, activities and interests, relationships, and mental health.  For each of these areas, you will also be invited to indicate how you feel about the characteristic in question, and to describe your thoughts and feelings about your child’s future.

After you have completed the survey, you will be given the option to provide your email address, if you would like to be contacted about the results of the research.  Your email address will only be used to contact you about the results of the research.

How long will it take to complete the survey?
The survey will take around 30 minutes, depending on the length of your responses. You can stop the survey at any time for a break and come back to complete it later on the same device within 2 weeks of your last entry.  After 2 weeks without activity, the survey will close automatically, but you can contact us to reopen the survey.   We would encourage you to complete the survey questions at your own pace and take a break if needed.

Can I complete the survey for more than one child?
Yes.  Please answer the questions for only one child at a time, but you can repeat the survey for each additional child that you would like to include.  We will have a separate survey link for you to use for additional children – this will link your surveys together through your unique ID number, so you will not need to repeat your own demographic information, and will only need to answer the questions relevant to your child.

Can more than one parent complete the survey?
Yes, but please complete the survey independently, as we are keen to gain your own individual thoughts and perspectives about your child.


What if I feel I need to access further support during/after completing the survey?
We will provide a list of support organisations throughout the survey; in case you would like to seek further support.  The list of the support organisations is available here.

Can I change my mind and withdraw my information later?
You can choose to withdraw at any point without explaining why.  If you stop in the middle of the survey by closing your browser, any data you have provided up to that point will be used for analysis.  You can withdraw later on, or ask for your incomplete information to be withdrawn, by contacting the researchers with your unique ID number.  They will use your unique ID number to identify your data and destroy it. 

Expenses and payment
On completion of the survey, you will be offered the chance to enter a prize draw to win a £50 voucher. If you would like to be entered into the prize draw, you will be asked to provide your email address. Your email address will only be used to contact you if you have won the prize draw.

What are the possible benefits of taking part?
You may find the study a useful outlet for expressing your opinions/experiences on certain topics as there will be open ended questions.  Hopefully, the information you give in this study will help us better understand the considerations that are important to parents, in order to inform and tailor support for both parents and children. 

Are there any disadvantages of taking part?
We understand that some of the questions may be difficult, so you can take a break or stop the study at any time.  You can also skip questions if you would prefer not to answer them.  We will provide you with contact information for support groups and organisations that can help you if you feel you would like to talk to someone or need further support. 

What will happen to the study results?
The overall data will be analysed, and the findings presented at scientific meetings or published in reports and academic papers.  All data will be anonymous, with no way of identifying the individuals involved.  Information provided by you may be shared with researchers running other research studies.  Your information will only be used by researchers to conduct research.  This information will not identify you and cannot be used to contact you.  It will not be used to make decisions about future services available to you.

Will my participation be kept confidential?
Yes.  Your data is collected anonymously, i.e. it will not be possible to identify individual responses.  All data will be securely stored at the Newcastle University in password-protected files in a folder only accessible by the research team.  Under UK General Data Protection laws the University is the Data Controller (legally responsible for the data security), and the Chief Investigator of this study (named below) is the Data Custodian (manages access to the data).  This means we are responsible for looking after your information and using it properly.  Your rights to access, change or move your information are limited as we need to manage your information in specific ways to comply with certain laws and for the research to be reliable and accurate.  You can find out more about how we use your information and to read our privacy notice at: https://www.ncl.ac.uk/data.protection/dataprotectionpolicy/ and/or by contacting Newcastle University’s Data Protection Officer (Maureen Wilkinson, rec-man@ncl.ac.uk).

Who has reviewed the study?
This study was approved by the Faculty of Medical Sciences Research Ethics Committee, part of Newcastle University's Research Ethics Committee.  This committee contains members who are internal to the Faculty.  This study was reviewed by members of the committee, who must provide impartial advice and avoid significant conflicts of interests.

What if there is a problem?
If you wish to ask a question, withdraw your data, or if you have any other concern, you should ask to speak to the researchers who will do their best to answer your questions.  The researchers’ contact details are given at the end of this information sheet.  If you remain unhappy and wish to complain formally, you can do this by contacting the Chair of the Faculty of Medical Sciences Ethics Committee at fmsethics@newcastle.ac.uk.

Researchers:
Caitlin Hunter and Ruth MacEwan are both final year students at Newcastle University, conducting this research for their empirical project.  Dr Heather Moore and Dr Sinead Mullally are the research supervisors for this project and will oversee Caitlin Hunter and Ruth MacEwan’s work.

Dr Heather Moore (heather.moore@newcastle.ac.uk)
Dr Sinead Mullally (sinead.mullally@newcastle.ac.uk