Participant Info Sheet - Easy Read
Interviews
The information sheet is for the interviews part of the Autistic Experiences of Breast Cancer research project.
Dr Char Goodwin will be carrying out the interviews. She is autistic and has had a breast cancer diagnosis.
Before you decide whether you would like to take part in an interview, it is important that you understand why we are doing this research. If you would like to be interviewed having read the info below, click this link https://exe.qualtrics.com/jfe/form/SV_cSn60TeZoFcKQN8 to go to the screening form.
Please read this information sheet and discuss it with your friends and family if you wish. Or you can ask Char some questions.
Research shows us that autistic people can find getting the healthcare they need is difficult. This can be because GP surgeries and hospitals can be noisy, with bright lighting, and with lots of people.
This research project wants to find out what it is like when you have to go to hospital lots of times throughout your breast cancer treatment.
We will be looking at the time from when you found out that you have breast cancer, and how you found out, through to the end of regular hospital treatment. We are using this time because that is when you go to appointments for treatment most often.
We would like to know about your experiences. We will not be asking other people such as your doctors or nurses involved in your care, or your family members or friends. Although if you would like a family member or friend to be with you in the interview to support you we can arrange that.
We would like to hear from autistic people who may not often get the chance to be part of research. We will interview between 8 and 12 autistic people who have had a breast cancer diagnosis.
If you would like to take part in an interview, we will ask you to complete a form that tells us a bit more about you. It is an online form, but we can discuss a different way to do this if you are not able to do the form online.
We will not be able to interview everyone, but we will let you know, via email, if you are going to be interviewed. We will also let you know if we are not going to interview you.
If you are invited to be interviewed, Char will discuss with you when that happens. Char will also ask you if there is anything that she can do to help you in the interview. She will also speak to you about your breast cancer diagnosis and how to show confirmation of this.
The interview will be online via Teams or Zoom. If you would want it to be done differently then let Char know. At the start Char will ask you some important questions about the project and check that you understand what we are asking you to do, and that you want to do the interview. This is called consent.
The interviews will take around one hour and we will let you know the questions we will ask beforehand.
Please only share with Char what you feel comfortable with. You do not have to answer every question and you can stop the interview at any time. There will be a break during the interview.
Char will ask you at the start if she can record the interview. We will not have any information that will identify you and we will give you a number called a participant ID rather than use your name. When we write up the study we will use a made up name, so no one will know it is you, which you can choose if you would like to.
When the interview has finished, Char will stop the recording and will store it on the university computers as soon as she can after the interview has taken place.
Afterwards, we will get a written copy of the interview made. We can share the written copy with you so you can check that you are happy with it. Char will contact you about this.
You can also have the chance to look at the written paper from the study when it has been ended, but you do not have to.
Your interview will give us lots of detailed information about what it has been like for you to have a breast cancer diagnosis and treatment. Along with the other people being interviewed, your experiences will help us understand what having breast cancer is like for autistic people.
We understand that when you share your breast cancer experience, it can be upsetting. There will be a break during the interview, you can take more if you need. You can also stop the interview at any time. We will also give you some support helplines contact information in case you need it (see below).
If you would like to withdraw from the study you can do so, and you do not need to give a reason. If you change your mind about doing the interview, we will remove the screening information and contact information that we have for you.
If you decide during the interview then you can either allow us to use the information you have given so far, or ask for it to be removed. If you would like to remove all your information you can do so up to 3 weeks after the interview has taken place.
The information that we collect from you, including the screening and consent forms will be stored on University computers. The interview recording will be removed once the written copy has been checked.
We will write up the findings of the study to be published and discussed at conferences and talks. Your information will be anonymised to make sure that you cannot be recognised. We may use anonymised quotes from your interview in the written documents. Our website will also contain information about the study but will be anonymised.
The research team:
This study has received approval from the Psychology Ethics Committee at University of Exeter.
If you would like to be interviewed, please click this link https://exe.qualtrics.com/jfe/form/SV_cSn60TeZoFcKQN8 and complete the screening form. You will be told via email if you are invited to interview.
If you would like to make a comment or complaint you can also contact the University Research Ethics and Governance Team on cgr-reg@exeter.ac.uk,
or
Dr Antony Walsh
Head of Research Governance, Ethics and Compliance
University Corporate Services, University of Exeter
G14, Lafrowda House, St Germans Road, Exeter, EX4 6TJ
DD: 01392 726621
email A.Walsh3@exeter.ac.uk
Thank you for your interest in this project
Support Services Contact Details
Thinking about and sharing your cancer story can bring up lots of memories and emotions and can include reminders of difficult times. Here are some contact information for organisations that offer support.
Name of Support Service
Macmillan Cancer Support
Contact Details
Support Line 0808 808 00 00 (open 8am to 8pm and free from landlines and mobiles within the UK)
Email Us form https://www.macmillan.org.uk/forms/contact-us/ask-macmillan-form.html
Chat with us feature on their website: https://www.macmillan.org.uk/cancer-information-and-support/get-help/chat-online
Breast Cancer Now
Helpline 0808 800 6000 (open Mon-Fri 9am-4pm, Sat 9am-1pm and free from all UK landlines and mobiles)
Email our Nurses form https://breastcancernow.org/submission/ask-our-nurses
Ask our Nurses on the forum https://forum.breastcancernow.org/c/ask-our-nurses-your-questions/6
OUTpatients: The UK’s LGBTIQ+ Charity
Online peer support meetings for LGBTIQ+ Cancer Patients https://outpatients.org.uk/patient-support/
Contact us form on their website https://outpatients.org.uk/contact/
Shine Cancer Support (for people in your 20s, 30s or 40s with cancer)
Shine regional networks for in person meets https://shinecancersupport.org/get-support/networks/
Several Facebook groups https://shinecancersupport.org/get-support/peer-support/facebook-groups/
Shine Diversity Chats – meeting other members from diverse ethnic communities https://shinecancersupport.org/get-support/peer-support/shine-diversity/
LGBTOI+ network on WhatsApp https://shinecancersupport.org/get-support/peer-support/lgbtqi_chat/
Samaritans
Helpline call 116 123 (for free, open 24hrs a day, 365 days a year)
Email service https://www.samaritans.org/how-we-can-help/contact-samaritan/write-email/
Autistic UK
Online contact form for general enquiries
Peer support page: https://www.autisticuk.org/peersupport
AIM for the Rainbow
Lots of information and advice for neurodivergent LGBTQIA+ individuals
Support and advice page with contact details of organisations
Autistic Parents UK
Offers support services for autistic parents https://www.autisticparentsuk.org/peer-support