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Doing research on people with learning disabilities, cancer and dying: ethics, possibilities and pitfalls

Authors

  • Irene Tuffrey-Wijne,

  • Jane Bernal,

  • Sheila Hollins


Abstract

Accessible summary

  • • We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is about making sure that our research is ethical. This means that we don’t want to cause any harm (or make people upset) when we do the research. We ask:
  • • How do we find people to be in our studies?
  • • What should we do if people cannot understand the research they are in?
  • • What should we do if people do not want us to use a made-up name in our writing?
  • • What should we do if, during the research, we see that people with learning disabilities are not treated right?
  • • What is the relationship with the researcher? Is the researcher a nurse, a helper or a friend?

Summary

There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors’ own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants’ requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician.

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