Participant Information Sheet

Title of Project: Autistic Experiences of Breast Cancer

Invitation to take part:

You are invited to take part in an interview 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 of family if you wish. Alternatively, you can ask the researcher conducting the interviews (Dr Char Goodwin) questions.

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 medical 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.

We are concentrating on the period from diagnosis (and leading up to diagnosis e.g. symptoms, breast cancer screening) through to the end of active hospital treatment. We are defining active hospital treatment as the end of the regular hospital visits for treatment for a primary diagnosis, although you may still be receiving hormone therapy. If you have experienced a recurrence or have secondary breast cancer you may still be undergoing hospital treatment. 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?

We 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 between 8 – 12 autistic people who have had a breast cancer diagnosis for the interview part of the project. We are keen to explore a range of experiences recognising that each experience impacts an individual differently. We welcome autistic participants from diverse ethnic communities, LGBTQIA+ 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.

Researcher carrying out interviews:

Dr Char Goodwin will be carrying out the interviews, she is autistic and has had a breast cancer diagnosis and received cancer treatment in the UK.

What would taking part involve?

There are five steps involved in the interview process, with an optional sixth. This flow chart shows them in the order that they happen, and each part is explained in more detail below.

A flow chart that shows the 6 steps of the recruitment process. Each step is written in full below the flow chart
Number 1 in a pink circle

If you would like to participate in the interviews, we would first ask you to complete an online screening form which will ask you some questions to ensure that you are eligible to take part in the interviews. They will include demographic information, details about your breast cancer diagnosis and where you are with your treatment e.g., are you still receiving treatment.

Number 2 in a pink circle

Participants who are eligible for the interviews will be contacted via email of this decision.

Number 2a in a red circle

Participants who are not eligible for the interviews will be notified via email.

Number 3 in an orange circle

Eligible participants will have a further communication with the researcher to arrange the interview, discuss information preferences and any accommodations that you need, and arrange to see confirmation of your breast cancer diagnosis e.g., a breast care unit appointment letter - (Alternative ways to show confirmation can be discussed with the researcher). We will also arrange a convenient date and time for the interview.

Number 4 in a green circle

The interview will likely take place via Teams/Zoom (alternative to online meetings can be discussed with the researcher e.g., email). At the start of the interview, you will be asked to provide consent using an e-Consent form. The researcher will walk you through how to do this online.

Interview details:

  • Each interview will be approximately one hour long.

  • Participants will be provided with the questions beforehand, although there may be other questions that arise organically from the interview that the researcher may ask that could not previously be foreseen.

  • Please only provide as much detail as you are comfortable in doing so, if there are any questions that you prefer not to answer we can move on to the next question.

  • The researcher will offer breaks throughout the interview.

  • Before each interview we will seek permission to audio-record it using a digital voice recorder. This will enable us to create a transcript, but no identifying information will be added to the recording and all participants will be provided with an anonymous participant identification number. You will be able to choose a pseudonym that we will use for the analysis and write-up, alternatively one can be provided.

  • The recording will stop once the interview is finished.

  • If you use the chat function as part of the interview, it will be saved with any identifying information removed.

  • The researcher will check the recording and upload it to the university servers as soon as possible after the interview has taken place.

Sharing your cancer story:

We recognise that talking about your breast cancer story can evoke different memories and feelings, and that these can be difficult to talk about. If a particular question that you do not want to answer, then that is ok to not do so, and you do not have to give a reason. If there are parts of your cancer story that are too difficult or raw to share, we understand, please only share and in as much detail as you feel comfortable to.

The researcher will also provide you with a list of support lines (both telephone and text based) that might be helpful, especially if you have found retelling your cancer story to be distressing.

Number 5 in a blue circle

After the interview, the recording is transcribed (professionally by an external provider who will follow a process to maintain your privacy and confidentiality) to provide a written account of what had been mentioned. The transcriber will be required to sign a Transcription Agreement that includes a confidentiality statement. Your participant ID number will be the only information provided to the transcriber along with the audio file. You will be given the opportunity to read the transcript and check it for accuracy – the researcher will contact you via email about this. Any parts of the interview that were in the chat function will also be added to the transcript.

Number 6 in a purple circle

There will also be the opportunity to review the draft manuscript once it is written. This is optional and you do not have to do so.

What are the possible benefits of taking part?

The interviews will provide rich and valuable insight into autistic experiences of breast cancer, directly from autistic people, and your participation in the interviews will contribute to the findings of the wider Autistic Experiences of Breast Cancer research 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 in the interview. 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 will offer breaks throughout the interviews and if needed we can conduct the interview over two days. The researcher will monitor your level of distress during the interview. If you do become distressed, the researcher will pause the interview to enable you time to decompress and take a break. The researcher will stay online (and will talk or stay quiet depending on what you prefer) until such a time that you can communicate with the researcher that you are OK. You can decide whether you would like to continue with the interview. Alternatively, you can finish the interview another day or stop the interview completely.

 

If you become very distressed during the interview, the researcher will need to gently ask you some questions, if the researcher is concerned with your responses they will have a duty to address this, even if it means breaking confidentiality. This may include contacting the principal investigator (Prof Manuela Barreto) to discuss next steps, (e.g., suggest you contact your GP), or the emergency services (e.g., if you are in crisis) depending on the level of concern. You will be informed at every point about what will be happening.

 

We will also provide information for support services (both text-based and phone help lines) to all participants (see end of document). Interviews are conducted at a convenient date and time for the participant, and we would recommend arranging time to decompress afterwards doing what ever brings you joy.

 

To ensure confidentiality all participants will have an anonymised participant identification number and all identifying information is removed from their transcript before analysis. You will be able to choose a pseudonym that we will use for the analysis and write-up, alternatively one can be provided.

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

Participation in the interviews is voluntary and the interviews can be stopped at any time without giving a reason. The process of withdrawing from the project differs at certain timepoints:

  • Before the interviews – if you decide to withdraw from the project after screening and before the interview, your data from the screening form will be deleted along with your contact information that is saved on the password protected recruitment log.

  • During the interviews – if you would like to withdraw from the project during the interview you can do so without giving a reason and can either:

  • a)    Allows us to keep any information that was already captured (during screening and the interview that had been recorded), or;

  • b)    You can decide to withdraw all data. In this case the interview recording, plus all screening data and contact information will be deleted.

  • After the interview – if you would like to withdraw from the project after interview is over, we ask that you do so within 3 weeks following the interview completion by emailing the study email address (aebcstudy@exeter.ac.uk). If a request made within the 3 weeks then the interview recording, any transcript, the screening data and contact information will be deleted.

How will my information be kept confidential?

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

 

All participants contact information is kept on University of Exeter servers in a password protected document and may be stored if consent is given and you wish to receive further information about future studies to do with the research project. Screening data and e-Consent forms will be collected via online Qualtrics forms and will be downloaded and stored in password protected document on the university servers. Screening data will be kept until the end of the interview study. Interview audio recordings will be destroyed as soon as the transcripts have been checked.

Will I receive any payment for taking part?

You will be compensated £25 for your time, via BACS, upon completion of the hour-long interview. If the interview is shorter than an hour, the researcher will compensate you a proportion of the amount.

What will happen to the results of this study?

The findings from the interviews will be written up for academic publication and discussed at conferences/talks. We will also aim to publish open access to enable a wider reach. Your information will be anonymised to ensure that you will not be identified. Anonymised quotes (vignettes) from your interview may be used in academic publication.

We will also be updated our website with information from the findings of the interviews, 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 interviews will be carried out by 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 (Ref: 6892841)

If you would like to take part in the study:

Please complete this screening form if you would like to take part in the interviews. https://exe.qualtrics.com/jfe/form/SV_cSn60TeZoFcKQN8

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

In the event of queries or requests you my contact me 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

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 traumatic events. The below table provides details of telephone and written forms of contact for different support services and organisations that offer peer support for autistic or neurodivergent people.

Name of Support Service

Macmillan Cancer Support

https://www.macmillan.org.uk/

QR code for Macmillan website

Contact Details

Breast Cancer Now

https://breastcancernow.org/

QR code for Breast Cancer Now website

OUTpatients: The UK’s LGBTIQ+ Cancer Charity

https://outpatients.org.uk/

QR code for OUTpatients website

Shine Cancer Support (for people in your 20s, 30s or 40s with cancer)

https://shinecancersupport.org/

QR code for Shine Cancer Support website
QR code for Samaritans website
QR code for Autistic UK website
QR code for AIM for the Rainbow website
QR code for Autistic Parents UK website