- In collaborative groups, people ID are more likely to initiate or negotiate their involvement
- Individuals may find out about the research through advertisements or through connections with academics who have mutual interests 

Cedarville University

The most common role for individuals with ID in research. It involves participation in prioritizing research and in decision-making regarding funding.

When individuals with ID’s, advise research teams about a project’s overall direction, or a specific issue. This can be done in a separate group or with others.

Advisory Approach

This type of inclusive research is led and controlled by individuals with intellectual disabilities and utilizes the support of researchers or other allies without disabilities.

May also be defined as a partnership or collaboration between people with and without disabilities who work together in research. They each have shared and distinct purposes. Both groups are given a similar amount of attention and their contributions are equally valued.

Collaborative Groups

Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


- May advise components of research design
- Recruitment strategies
- Collection & dissemination of methods

Role of People with Intellectual Disabilities in Advisory Groups

People with ID who advise research may not be included at all in the study and they have no control over their level of involvement.  The researchers that request the individuals’ involvement decide the level of involvement.


Levels of Involvement within the Advisory Approach

This term is used to refer to how individuals with ID are involved in research through prioritizing design as well as advising on and disseminating on research.

Experts by Experience

Advisory Approach vs Collaborative Approach

- The research is a combined effort
  - All members are aware of the overarching project
  - They may not be involved in every part
  - Each member brings distinct skills and experiences
  - Everyone makes their own notable contribution
  - Leadership often lies with senior researcher
- Individuals with ID don't have a disproportionate amount of control or power
- Researchers aren't serving as assistants

Roles in Collaborative Groups

- Combines skills of academic researchers and those with ID to generate new knowledge
  - Knowledge could not be created without the other group
  - Relationship is built on trust  
- May be comprised of as little as two people


Relationships Between Members of Collaborative Groups

- The contribution of each member is valued as being equal
- There is a commitment in the group to give attention to each member depending on their abilities

Centrality of Collaborative Groups

- Usually drawn from qualitative methods
  - Often adapted to utilize the strengths and perspectives of group members
- Indivdual roles may become group roles
  - Data Collection
- It is a dialogue 

Research Methods in Collaborative Groups

It was created to be used in low income countries, but it is generally used whenever a population that is at risk is involved in research. This principle encourages trust and protects vulnerable populations from exploitation. It also requires members to identify their health needs that have the highest need to be researched.

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