Beating the barriers: recruitment of people with intellectual disability to participate in research

J Intellect Disabil Res. 2005 Apr;49(Pt 4):296-305. doi: 10.1111/j.1365-2788.2005.00618.x.


Background: The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research.

Methods: Our project was a randomized controlled trial aiming to improve health advocacy of people with ID. We approached many organizations to recruit participants and kept records of our results. Recruitment was very low for the first 4 months. Then we adopted two new recruitment strategies--in-service telephone recruitment and meetings with prospective participants. We then monitored the subsequent recruitment rates. We also questioned participants about the difficulties they encountered when considering recruitment.

Results: Initial recruitment of participants yielded less than one-third of the expected number. Additional strategies implemented were partially successful. Significant barriers to recruitment included several sectoral issues and the challenges arising from the research process.

Conclusions: While this population is a difficult one to reach for research, attempts to do so should not be abandoned, because the potential health benefits for this underserved group far outweigh the recruitment barriers experienced.

Publication types

  • Clinical Trial
  • Randomized Controlled Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Decision Making, Organizational
  • Health Services Needs and Demand
  • Health Status
  • Humans
  • Informed Consent
  • Intellectual Disability*
  • Patient Advocacy*
  • Patient Selection*
  • Research*