Developing voice and empowerment: the first step towards a broad consultation in research agenda setting.
Use enclave deliberation—collect personal stories first, then run focus groups—to give clients with ID real power in picking what gets studied or taught.
01Research in Context
What this study did
Researchers ran a staged process called enclave deliberation. Adults with intellectual disability first told personal stories, then met in small focus groups.
The team used these steps to build a list of nine research priorities that mattered to the participants themselves.
What they found
The process gave people with ID a clear voice in setting the research agenda. The final list showed what questions they wanted science to answer.
How this fits with other research
Wetterneck et al. (2006) found staff often talked over residents in meetings, which silenced voices. The new study shows the setting matters: when researchers, not staff, ran the groups, voices were heard.
Thompson et al. (2018) later showed that people with ID can move from giving input to serving as co-researchers. The 2011 paper gave the first step—build voice and empowerment.
Frankena et al. (2015) reviewed 26 papers and found inclusive health research is doable. The target study is one real example of how to do it.
Why it matters
If you want clients to help shape your program or research, copy the enclave method. Start with private story collection, then run small peer groups. You will get goals that truly reflect their priorities instead of staff guesses.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Pick one upcoming program decision, hold a 20-minute story circle with three clients, and let them list what matters most before you draft goals.
02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2011.01388.x