What difficulties do people with mild intellectual disabilities experience when seeking medical help from their GP? A qualitative study

J Appl Res Intellect Disabil. 2021 Jan;34(1):178-189. doi: 10.1111/jar.12796. Epub 2020 Sep 13.


Background: People with intellectual disabilities often have low health literacy as a result of their limited language comprehension. The aim of this study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of considering and seeking medical help from their GP. The study was intended as input for an online intervention supporting health literacy.

Methods: A qualitative study, in which 12 semi-structured interviews were conducted with people with mild intellectual disabilities and 4 with relatives of people with mild intellectual disabilities. The interviews were analysed following the principles of thematic analysis.

Results: Difficulties were experienced in the following activities: assessing and proactively reacting to health complaints, processing health information, communicating with a GP and retaining information from the consultation. Support workers and relatives play an important role in all these activities.

Conclusions: To increase the capacity of people with intellectual disabilities to manage their health and seek care from their GP, it is important to support them in the activities they find difficult. Recommendations resulting from the study have been incorporated in an online intervention.

Keywords: general practice; health communication; health information; health literacy; health-seeking behaviour; intellectual disabilities.

MeSH terms

  • Health Literacy*
  • Humans
  • Intellectual Disability*
  • Qualitative Research
  • Referral and Consultation