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Keywords:

  • Cancer;
  • ethnography;
  • learning disabilities;
  • narratives;
  • palliative care

Accessible summary

  • • 
    This is the story of John Davies. John has learning disabilities. He has cancer. He tells his story in his own words.
  • • 
    John found a lump on his penis (willie). It was cancer. He didn't go to the doctor. He left it too late. Now he is very ill with cancer. Maybe he will die of it. If he had gone to the doctor sooner, he could have got better.
  • • 
    This is what John is telling you: If you find something wrong with you, you should tell someone. You should go to the doctor.
  • • 
    We are doing a study. We want to find out what it is like to have cancer. We want to find out what helps people who have cancer. We are listening to their stories. There will be 20 people in our study. John is one of them. His story helps us to look after people with cancer better.

Summary

As people with learning disabilities live longer, and the incidence of cancer is rising, it is of increasing importance to understand the lived cancer experience of this group. Consideration of the viewpoints of people with learning disabilities themselves will facilitate the development of cancer support services that are appropriate and sensitive to their needs. This paper presents preliminary findings of an ethnographic study into the experiences of people with learning disabilities who have cancer. One of the study participants, John Davies (who has mild learning disabilities), relates his cancer experience in his own words. Having ignored his symptoms until it was too late, he now urges others to go to the doctor as soon as possible. The study is ongoing, but findings to date highlight the importance of listening to the story of people's lives and illness.