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Lived Experience Advisory Group Info Sheet

- Easy Read

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A Lived Experience Advisory Group for this study is a group of 6-8 autistic people who have been diagnosed with breast cancer and received treatment.

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We want to know what went well, what didn’t go well and what could be done to make it easier.

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We would like to hear from autistic people who may not often get the chance to be part of Lived Experience Advisory Groups.

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We welcome any autistic people who have had breast cancer to apply for the Lived Experience Advisory Group.

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The Lived Experience Advisory Group will make sure we, the Research Team, ask the right questions, in the right way.

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If you were a member of the Lived Experience Advisory Group, you will help choose questions for two parts of the study: interviews and a survey.

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You will also help the Research Team to make some guidelines for healthcare professionals.

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These guidelines will also have some ideas to help autistic people who are going through breast cancer treatment, to show their medical team.

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As a member of the Lived Experience Advisory Group, you will be asked to attend 6 meetings (online). If you prefer to just meet with the researchers, you can do that instead.

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Please let us know if you need anything to help you go to these meetings.

  • You do not have to have your camera on.

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  • You can write in the chat box if you prefer.

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We will try not to make any changes to the timetable, but if we have to, we will give you as much notice as possible.

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Each meeting will be 1 ½ hours long, and you will be given some things to look at before the meeting.

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For every online meeting including preparing time, as a Lived Experience Advisory Group member you will be compensated £75 for your time.

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The research project is 3 years long and we would ideally like the Lived Experience Advisory Group to be members for the rest of the project.

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If you are a member of the Lived Experience Advisory Group, you will not be able to take part in the studies carried out in the project (interviews and survey).

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If you would like to apply, please email aebcstudy@exeter.ac.uk and Char Goodwin will discuss this with you via email or Teams/Zoom.

Thank you for reading about the project.