Project to improve cancer care for autistic people

Photo shows a cancer patient in a white hospital gown and a green hoodie around their shoulders. A nurse, wearing a white outfit and blue surgical gloves has their arm around them.Image source, PA
Image caption,

The research started in 2023 and will continue for three years

  • Published

Autistic people who have been through breast cancer diagnosis and treatment have been asked to come forward to help improve care for other patients with the condition.

A major new project, led by a University of Exeter researcher, is examining the impact of healthcare barriers that autistic people face in cancer care, such as sensory overload.

Dr Char Goodwin is autistic and has previously had a breast cancer diagnosis.

She said: "The cancer experiences shared during the interviews will provide rich information about what it is like to experience breast cancer as an autistic person."

'Forming trusting relationships'

Charity Breast Cancer Now which is funding the research said: "Hospitals are often noisy and overcrowded, with bright lighting. This can cause sensory overload.

"And a cancer diagnosis will mean multiple visits to hospital for treatment.

"Other barriers include accessing information in the right amount of detail and, forming trusting relationships with the medical team to make sure they’re understood, believed and listened to."

Dr Goodwin added: "I know first-hand that it isn’t easy to share your cancer story, and it is not something that we take lightly.

"We would like to hear from autistic people about their experience from diagnosis and through hospital treatment."

The research project started in June 2023 and will continue for three years.

The research team hoped to interview eight to 12 people about their experiences and would like to work with people with a range of experiences.