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Keywords:

  • Cancer;
  • focus groups;
  • learning (intellectual) disabilities;
  • palliative and terminal care;
  • physical illness;
  • research

Accessible summary

  • We are a team of four researchers, two of whom have learning disabilities.
  • We did two studies using focus groups with people with learning disabilities. One study was about ‘What is it like for people with learning disabilities to have someone in their family or a friend with cancer?’ The other study was about ‘How to break bad news to people with learning disabilities?’
  • This article tells the story of how we did focus groups together. The researchers with learning disabilities helped to plan, to run the groups and to look at the results afterwards.
  • We did different things in the focus groups. We talked together and also used storytelling, role-play and voting.
  • Researchers with learning disabilities can really help the group to open up and talk about difficult subjects.

Summary

This paper presents two studies using focus groups with people with learning disabilities. One study was about ‘What is it like for people with learning disabilities who have a family or friend with cancer?’ and other study was about ‘How to break bad news to people with learning disabilities?’ Two of the researchers had learning disabilities themselves. This article reports how we worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects.