Abstract
Purpose
: Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting
illness such as cancer. Little is known about disclosure of diagnosis and prognosis
to this group. The study aim was to explore how much people with intellectual disabilities
who have cancer understand about their diagnosis and prognosis, and to explore how
much they are told about their cancer.
Method
: 13 people with intellectual disabilities and cancer took part in a 3-year ethnographic
study. Data collection consisted mostly of participant observation. Participants were
visited regularly for a median of 7 months.
Results
: Eleven participants were told that they had cancer, but most were not helped to
understand the implications of this diagnosis or their prognosis. Decisions around
disclosure, as well as the task of truth-telling, rested mostly with relatives and
paid carers. Those with severe/profound intellectual disabilities were most likely
to be protected from the truth. Understanding was affected by cognitive ability, life
experience and truth-telling. Lack of understanding affected the ability to take decisions
about treatment and care.
Conclusions
: Existing models for breaking bad news are inadequate for people with intellectual
disabilities. The findings suggest that more open communication is needed, but further
studies are needed to establish best practice in this area.
Keywords
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Article info
Publication history
Published online: February 24, 2010
Identification
Copyright
© 2010 Elsevier Ltd. Published by Elsevier Inc. All rights reserved.
