Survey - Participant Info Sheet — Autistic Experiences of Breast Cancer

Title of Project: Autistic Experiences of Breast Cancer

Invitation to take part:

You are invited to take part in a survey for the Autistic Experiences of Breast Cancer research project. Before you decide whether this is something that you would like to do, it is important that you understand why this research is being completed and what you will be expected to do. Please take the time to carefully consider the information provided in this Participant Information Sheet and to discuss it with friends and family if you wish. Alternatively, if you have any questions you can contact the research team.

Purpose of the research:

Research has shown that autistic people experience barriers to accessing healthcare and these include sensory sensitivities to the medical environment and the healthcare professionals’ knowledge of autism. What is not yet known is the effect of experiencing healthcare barriers repeatedly when receiving treatment over many months. We know that breast cancer treatment can last several months, and the Autistic Experiences of Breast Cancer research project aims to understand what it like to experience breast cancer as an autistic person.

In this study we will be asking autistic people who have had a breast cancer diagnosis and non-autistic people who have had a breast cancer diagnosis to take part so we can see if there are similarities or differences in their cancer experiences.

We are concentrating on the period from diagnosis (and leading up to diagnosis e.g. symptoms, breast cancer screening) through to the end of hospital treatment. This maybe the end of active treatment for a primary diagnosis, although you may still be receiving hormone therapy or bone-strengthening therapy. Or ongoing treatment if you have a metastatic or secondary breast cancer, or a De-novo (diagnosis straight to stage 4) diagnosis. This time period has been chosen because of the volume of doctor and hospital appointments in medical settings and involving interactions with multiple healthcare professionals. We would like to know when it has gone well, when it has not gone well and what would have made things easier.

Why have I been approached?

You may be autistic or non-autistic and have had a breast cancer diagnosis and treatment in the UK. We understand that to know what it is like to have breast cancer we need to ask people who have experienced it.

We also know that it is important to hear directly from autistic people about their experiences, rather than hearing for another person’s perspective (e.g., family member, caregiver, healthcare professional). We are therefore inviting autistic people who have had a breast cancer diagnosis to share their experiences with us.

We hope to recruit autistic people and non-autistic people for this survey who have had a breast cancer diagnosis in the UK. We are keen to explore a range of experiences recognising that each experience impacts an individual differently. We welcome autistic and non-autistic participants from diverse ethnic communities, LGBTIQ+ and gender diverse identities, non-speaking and non-speaking at times, people with intellectual disability, of different ages, who have had a diagnosis of various types of breast cancer.

What would taking part involve?

Taking part in the survey will involve answering some questions in an online survey. In the questions we will ask for some information about you, your cancer diagnosis and treatment and how you found your experience. More details about the questions can be found at the beginning of the survey (or on our website).

You will be asked to provide consent to take part in the survey. If you choose not to consent to take part, the survey will end.

You will also be asked to provide the code word that would have been given to you when you found out about the survey. Or contact the research team if you heard about the survey from our website.

We will not ask for your contact information in the survey; your answers will be anonymous.

The survey is designed to respond to your answers and ask you questions relevant to your cancer treatment and experience. Additional questions may be asked depending on your response to a particular question.

There is a back button feature for most of the survey to enable you to look over your answers.

What are the possible benefits of taking part?

The survey is the third part of the Autistic Experiences of Breast Cancer research project and will contribute to the findings of this project. Whilst there may be no direct benefit to your cancer care experience as a result of taking part, we do hope this project will provide much needed information about cancer specific barriers to healthcare for autistic people that can inform change.

What are the possible disadvantages and risk of taking part?

Retelling your cancer story can be a cathartic experience although we do not underestimate the personal and emotional cost of re-telling your cancer experience. Recalling events that had a significant impact on your life can be upsetting and stressful. The level of distress involved can vary from person to person depending on their individual experience. We provide details about the questions that you can read before you take the survey, so you have an idea of what we are going to ask.

You do not have to complete the survey in one sitting; you can re-visit the survey at a later date (up to 1 week later) to continue until the end of the recruitment period. You will need to do so from the same web browser and device that you started the survey to access your partially completed survey. A new web browser will start the survey again. You also do not have to answer all the questions and can skip one to move onto the next if you need to.

What will happen if I do not want to carry on with the study?

You can choose to not finish the survey and exit it if you change your mind when you are filling it out. Any surveys that are partially filled in and not completed when we close to recruitment will not be included in the analysis. All completed surveys will be used for analysis.

How will my information be kept confidential?

We do not ask for any of your contact information when you complete the survey. If you contact the research team for a survey link and you decide to complete the survey, your answers will not be linked to your email address because we do not ask for contact information on the survey itself. We will de-identify any free text responses that you provide before analysis and publication so that the information that you provide will not be identifiable to you. The data from this survey will not be publicly made available as a data set, only the anonymised findings included in an academic paper will be published.

As part of our data security, we will be temporarily capturing IP addresses as part of our security measures to prevent non-genuine people or bots from taking the survey. Unfortunately, online surveys and other research have shown an increase in this kind of activity and the software we use for the survey (Qualtrics) has some measures built in, which include capturing IP addresses, to help prevent this. IP addresses will be deleted at the analysis stage. Survey data will be collected via online Qualtrics software and will be downloaded and stored on the university servers.

The University of Exeter processes personal data for the purposes of carrying out research in the public interest. The University will endeavour to be transparent about its processing of your personal data, and this information sheet should provide a clear explanation of this. If you do have any queries about the University’s processing of your personal data that cannot be resolved by the research team, further information may be obtained from the University’s Data Protection Officer by emailing informationgovernance@exeter.ac.uk or at Information Governance | Information Governance | University of Exeter

Will I receive any payment for taking part?

No, there will not be any payment for taking part in this survey.

What will happen to the results of this study?

The findings from the survey will be written up for academic publication, in the production of our guidelines for healthcare professionals, and discussed at conferences/talks. We will also aim to publish open access to enable a wider reach. Your information is anonymised to ensure that you will not be identified, any anonymised quotes from free text answers may be used in academic publications, in the guidelines and at conferences/talks.

We will also be updating our website with information from the findings of the survey, again this will be anonymised to ensure confidentiality. Broader observations may be used as part of conversations to improve cancer care for autistic people.

A copy of any published paper will also be deposited in the Europe PubMed Central database as per our funders request.

Who is organising and funding this study?

The lead-researcher for the project is Dr Char Goodwin who is part of the research team alongside Professor Manuela Barreto, Professor Ginny Russell, Ms Eleanor Jane Turner, Dr Mary Doherty and Dr Sebastian Shaw.

The Autistic Experiences of Breast Cancer research project is funded by Breast Cancer Now. Grant number: 2022.11PR1569

Who has reviewed this study?

This project has been reviewed by the Psychology Research Ethics Committee at the University of Exeter Application ID: 12200553. To contact the Psychology Research Ethics Committee please email psychologyethics@exeter.ac.uk

If you would like to take part in the study?

If you are already on the survey link, please continue following the instructions to the consent screen. Once you have consented you will be asked for the code word that should have been provided to you already.

If you are reading this information sheet from the website or a paper copy, please email aebcstudy@exeter.ac.uk for the survey link and code word.

Contact for any questions or request regarding your participation in this research

In the event of queries or requests you may contact the research team using the following contact information:

Please email Dr Char Goodwin aebcstudy@exeter.ac.uk

You can also contact the University Research Ethics and Governance Team if you wish to make a complaint or comment, please email cgr-reg@exeter.ac.uk,

Or

Sean Jennnings

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: S.Jennings@exeter.ac.uk

Thank you for your interest in this project

Support Services Contact Details

Sharing your cancer story can bring up lots of memories and emotions and can include reminders of traumatic events. For every person who participates in the survey we provide them with this document for support services contact details and organisations that offer peer support for autistic or neurodivergent people. They include both telephone and written forms of contact and are detailed below.