Lived Experience Advisory Group Information Sheet
Purpose of the Lived Experience Advisory Group
This research project is centred around listening to autistic people with lived experience of breast cancer. By listening and learning about different experiences of breast cancer diagnosis and treatment we can explore what factors worked well, what factors were more challenging or didn’t work; and what solutions there could be. To do this we need to hear directly from autistic people, we will not be able to answer these questions otherwise.
The Lived Experience Advisory Group (LEAG) has an important role in this research project. We want to make sure that we ask the right questions in the right way. The LEAG will advise the research team and co-design the questions for the interviews and survey, and production of the guidelines.
We welcome applications from autistic people from diverse ethnic communities, LGBTQIA+ and gender-diverse identities; non-speaking or non-speaking at times; people with intellectual disability; of different ages; who have had a diagnosis of various types of breast cancer.
What will I be expected to do?
We ask LEAG members to advise the research team on matters relating to:
Co-designing the questions used in interviews
Co-designing the questions used in the survey
Determining the content of the guidelines for healthcare professionals and the recommendations for autistic people currently receiving breast cancer treatment
Dissemination of the guidelines in accessible ways for multiple audiences
How will this be done?
We ask LEAG members to attend 6 meetings that occur throughout the research projects duration (see appendix 1 for visual representation) and approximate dates (months) of each meeting.
We can also offer the option of individual consultation if that is preferred over a group format.
We will try not to make any changes to the meeting schedule but if it is unavoidable, we will give as much notice as possible.
Each meeting will last 1.5 hrs and there will be an additional 1-hour preparation for the meeting (which will likely involve reading documents prior to the meeting).
Meetings will take place online (we can be flexible about which platform e.g., TEAMs/Zoom/Facetime/WhatsApp). There is no expectation for cameras to be on, chat function can be used as an alternative to speaking. Please do discuss with us any other accommodations and we will do our best to facilitate.
Membership
The LEAG will comprise of 6 people and a maximum of 8 people depending on the number of applications that we receive.
For every online meeting (including prep time) each LEAG member will be compensated £75 for their time.
Membership in the LEAG is ideally for the duration of the research project (due to finish in May 2026).
Members of the Lived Experience Advisory Group will not be able to take part on the studies carried out for the project (interviews and survey).
If you would like to apply to be a member of the Lived Experience Advisory Group.
Please email aebcstudy@exeter.ac.uk and Char Goodwin will discuss this with you via email or Teams/Zoom.
