The Research Project

We know that autistic people experience barriers to healthcare (Doherty et al., 2022; Brice et al., 2021; Mason et al., 2021) and this project aims to explore these barriers and the overall experience of breast cancer from diagnosis through to end of hospital treatment. This period of time was chosen because of the volume of visits to hospital and with healthcare professionals. We will be asking autistic people who have gone through a breast cancer diagnosis and treatment to discuss their experiences, to listen and learn from them.

This project will be separated into 4 parts known as work packages.

Work Package 1:

The first work package will be exploring Dr Char Goodwin’s own experience of breast cancer from diagnosis and through hospital treatment at a time when she did not know that she was autistic. Char will be looking back at that time and referring to journal extracts written as she was finishing treatment.

Work Package 2:

The second work package will involve interviewing other autistic people who have had breast cancer and who have finished hospital treatment, and explore their experiences – what went well, what was challenging and what could be done to make it easier.

Work Package 3:

The third work package will be an online survey for autistic and non-autistic people who have had breast cancer. The survey questions will be informed by the learning from work package 1 and 2.

Work Package 4:

The fourth and final work package will comprise of all that has been learnt from the other work packages and guidelines will be produced for healthcare professionals and providers, as well as recommendations for autistic people who are currently undergoing treatment to discuss with their medical team.