Exploring experiences and understandings of pain in adults with intellectual disabilities

J Intellect Disabil Res. 2014 Apr;58(4):358-67. doi: 10.1111/jir.12020. Epub 2013 Jan 28.


Background: People with intellectual disabilities (ID) are at risk that their health problems, many of which cause pain, go unrecognised and untreated. Their understanding and personal experiences of pain have received little research attention.

Method: Information was collected from 15 adults with ID using semi-structured interviews about their experiences and understanding of pain. Transcripts were analysed using content analysis.

Results: Participants described pain using negative meanings and strong imagery, with various causes of pain suggested, but said little about how they coped with pain. Participants varied in whether they reported pains to carers, some choosing to hide the experience. There seemed a general belief that others can tell when someone is in pain.

Conclusions: Conversations regarding pain with adults with ID are a real challenge; health-care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated.

Keywords: experience; intellectual disability; learning disability; pain; service user.

MeSH terms

  • Adult
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Intellectual Disability / psychology*
  • Male
  • Middle Aged
  • Pain / psychology*
  • Qualitative Research
  • Young Adult