Developing Voice and Empowerment: The First Step Towards a Broad Consultation in Research Agenda Setting

Nierse & Abma (2011) full text summary PDF

For which topic were research priorities identified?

intellectual disabilities

In which location was the research priority setting conducted?

Europe - Netherlands

Why was it conducted at all?

Although people with intellectual dis abilities (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.

What was the objective?

to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting

What was the outcome?

a list of 28 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

focus group; interview

How were the priorities for research identified exactly?

Step 1: interviews: with key informants (with people with ID, parents of young children with ID and parents of children with severe ID) to gain better understanding of conditions for participatory research with this group. Step 2: 10 focus groups with people with ID and 4 focus groups with parents, participants were asked to decide on three most important research topics

Which stakeholders took part?

Persons with ID, parents. Interviews: 13 participants: 7 persons with ID and 6 parents. Focus groups: 105 participants: 81 people with ID, 24 parents.

How were stakeholders recruited?

The advocacy associations approached three people who were willing to participate in the project as co-researchers: two people with mild ID and the mother of a son with severe ID. Focus group participants were recruited through local offices of the advocacy associations, through the personal networks of the research partners and by contacting client councils of care organizations.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.