It is important that you understand why the research is being conducted and what it will involve. Please take the time to read the following information carefully. If you have any questions, please do not hesitate to ask by contacting Dr Hope Christie (hchrist5@ed.ac.uk) or Grace Khawam (gkhawam@exseed.ed.ac.uk)

The purpose of this study is to find out about both parent and children’s experiences and perceptions of COVID-19, the restrictions and transitional phases including aspects that they found easy or difficult and how they have coped during these times. We also would like to know your thoughts around the proposed vaccination programme.

You have been invited to take part because you are a parent/caregiver of a child with mild/moderate intellectual disabilities who is between the ages of 5 – 17 years.

No – it is entirely up to you.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason. Deciding not to take part or withdrawing from the study will not affect you or your child’s access to any services or healthcare.

If you decide to take part, you will be asked to complete a consent form to show that you fully understand the aims of this study and agree to take part. This research will also involve an activity called ‘Photovoice’ with your child aged 5-17 years old. We have an additional factsheet about the Photovoice that will be provided. If you and your child do decide to take part, you are still free to withdraw up until your interviews have been transcribed and anonymised (72 hours following the interview).  

Please note that your child does not have to take part in the photovoice activity for you to take part in the interview, or vice versa.

If your child would like to take part, in 3-5 days time the researcher will contact you again to gain consent from your child and arrange a meeting time. During this first meeting the researcher will verbally read out the main points of the research and consent statements while you are also there with your child. The researcher will then audio record your child’s response to obtain assent that they are happy to take part in the photovoice activities. The photovoice activity will take place over several sessions:

Session 1: This will be a ‘getting to know you/introduction session’ – which will allow the researcher to introduce themselves to you and your child and to begin to establish some trust. This will be done by doing a storytelling activity, which will help the children interact with each other, but also allow the researcher to understand more about the children’s retrospective experiences during lockdown.

Session 2: Camera training workshop and 1st photography assignment. This will involve the researcher explaining to the children about taking pictures, using a visual fact sheet. They will discuss how to take pictures (i.e., making sure photos aren’t blurry) and what they can and cannot take pictures of (i.e., a public space vs. a classmate’s identifiable face). Children will also be told in this session to go out and take some pictures to answer specific questions (e.g., what are you happy you can do again now lockdown is easing).

Session 3: Discussion of the first photograph assignment and 2nd photograph assignment – during this session we will come together as a group (researcher and participating children) to show the pictures of the first assignment and talk about them. Then children will be given a second assignment to go and take more pictures in the coming week.

Session 4: Final wrap up

You will be asked to fill in a demographic questionnaire and provide your email address so that the researcher can contact you to arrange a convenient day to carry out the interview. This interview may be done face-to-face or online/over the phone, which will be based on a number of factors, including: your personal preference and the current lockdown restrictions. The researcher will then make arrangements with you about when and how to carry out the interview. If it is being done online/over the phone, the researcher will contact you via an online platform (Microsoft Teams) to carry out the interview. It is recommended that you ensure that you arrange a time and place in the house where it is unlikely that the interview will be disrupted at any point.
The interview will take no more than 60 minutes and you will be asked about your experiences during lockdown. Following the interview you will be thanked and your debrief will be emailed to you.

If your child is also interested in taking part in the photovoice activity, the researcher will also email you with a child participant information sheet for you to show your child. Please discuss this information with your child to see if they are interested in taking part.

There are no direct benefits but by sharing your experiences with us, you and your child will be helping the researchers get to know more about your perceptions and experiences during the COVID-19 pandemic. It is hoped that the findings from this study could inform policies and provide insight into effective support for families with children with intellectual difficulties, as we transition out of restrictions.  

Some of the questions in the interview may cause you or your child to remember both happy and unhappy events around COVID-19. Some of these memories may cause some upset or distress. It is important to keep in mind that you and your child can pause or terminate the interview at any point for any reason, for example, if you are feeling uncomfortable. If you do feel any upset, please contact any of the support networks provided in your debrief sheet that will be emailed to you after your interview. The researcher will remind you and your child of these options prior and during the interview.

Please note that all information you provide during the interview will remain anonymised, unless there is a disclosure that you or your child are at risk. At this point the researcher must break confidentiality to inform the relevant authorities.

If the child at any point shows distress during the photovice activities then the researcher will stop the activity and ask the child to notify yourself.  The researcher will debrief your child and yourself (notifying you that your child has become upset).  The researcher will then contact her supervisor who will then debrief with the Centre for Psychological Therapies who may then follow their distress protocol which may involve contacting you to further assess your child.

You can withdraw from this study at any time and without giving a reason. However, you can only withdraw your data up until your interview has been transcribed and anonymised by the researchers (72 hours following the interview). After this time, it will not be possible to remove your data because it will be anonymised. If you do decide to withdraw within the timeframe specified above, please contact one of the researcher supervisors, whose contact details can be found at the bottom of this form.

All the information we collect during the course of the research will be kept confidential and there are strict laws which safeguard your privacy at every stage.

We will need to use information from you for this research project.
This information will include your initials/ name/ contact details (email address).  People will use this information to do the research or to check your records to make sure that the research is being done properly.

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.

We will keep all information about you safe and secure.

If you consent to being audio recorded, all recordings will be destroyed once they have been transcribed.

You can find out more about how we use your information at https://www.ed.ac.uk/records-management/privacy-notice-research
OR:
• by asking one of the research team
• by sending an email to the University of Edinburgh Data Protection Officer at dpo@ed.ac.uk 

The University of Edinburgh is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Edinburgh will keep non-identifiable information about you for 5 years after the study has finished.

The results of this study will be used to write up scientific articles and fast response research summaries (free to download from webpage and will also be e-mailed or sent via social media to relevant cross-parties) for policymakers and charities.

If you wish to take part in our study, please provide your email in one of the following screens. Furthermore, if you have any questions about the study and if you wish to receive a summary of the research outcomes, contact either;

Project Researcher:
Dr Hope Christie
Department of Clinical and Health Psychology
School of Health in Social Sciences
Email: hchrist5@ed.ac.uk

Principal Investigator of the project:
Dr Karri Gillespie-Smith
Department of Clinical and Health Psychology
School of Health in Social Sciences
Tel: +44 (0)131 651 3932
Email: karri.gillespie-smith@ed.ac.uk


Researcher who is external to the project:
Dr Helen Sharpe
Department of Clinical and Health Psychology
School of Health in Social Sciences
Tel: +44 (0)131 651 3949
Email: helen.sharpe@ed.ac.uk

If you have any complaints, please do contact the Head of School of Health in Social Sciences:
Prof Matthias Schwannauer
Department of Clinical and Health Psychology
School of Health in Social Sciences
Tel: +44 (0)131 651 3954
Email: headofschool.health@ed.ac.uk