Developing voice and empowerment: the first step towards a broad consultation in research agenda setting

J Intellect Disabil Res. 2011 Apr;55(4):411-21. doi: 10.1111/j.1365-2788.2011.01388.x. Epub 2011 Feb 15.


Background: Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting.

Method: The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents.

Results: The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research.

Conclusion: The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

MeSH terms

  • Child
  • Communication
  • Cooperative Behavior
  • Health Services Research / organization & administration*
  • Humans
  • Intellectual Disability* / rehabilitation
  • Intellectual Disability* / therapy
  • Middle Aged
  • Needs Assessment*
  • Organizational Objectives
  • Patient Participation*
  • Persons with Mental Disabilities*
  • Professional-Patient Relations
  • Research Design*
  • Young Adult