Self stigma in people with intellectual disabilities and courtesy stigma in family carers: a systematic review

Res Dev Disabil. Nov-Dec 2012;33(6):2122-40. doi: 10.1016/j.ridd.2012.06.013. Epub 2012 Jul 10.


People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990 and February 2012, using four databases and hand searching of journals was conducted. Thirty-seven papers were included in the review: 17 studies examined self stigma and 20 studies examined courtesy or affiliate stigma. The findings indicate that both individuals and family carers experience stigma and that it may have a negative impact on psychological wellbeing. Awareness of stigma in people with intellectual disability appears to be related to the extent to which individuals accept and internalise the label of intellectual disability. Most of the studies were qualitative studies or small descriptive studies. There is a lack of large prevalence studies and longitudinal studies examining the impact of stigma, in both individuals with intellectual disability and their carers.

Publication types

  • Review
  • Systematic Review

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Awareness
  • Caregivers / psychology*
  • Down Syndrome / diagnosis
  • Down Syndrome / psychology
  • Female
  • Humans
  • Intellectual Disability / diagnosis
  • Intellectual Disability / psychology*
  • Internal-External Control
  • Male
  • Middle Aged
  • Quality of Life / psychology
  • Self Concept*
  • Social Desirability
  • Social Distance
  • Social Stigma*
  • Young Adult