Reconciling the Past & Changing the Future

Lessons learned

The following are key lessons learned from developing, running, and evaluating the Truth & Reconciliation and Transforming Research Forums.

1) Persons with lived experience of IDD-MH and clinicians can work together to effectively build both capacity for and engagement in research.

“I learned the different impacts [of research]: societal, practice, [and] personal….It is important to be involved in research, so you might think it doesn’t impact you, but it does…. We spoke with the group [about] how to be involved in research, because it is a powerful tool and [there are] long-lasting effects.”

- Truth & Reconciliation co-facilitator with IDD-MH

"We could read each other, we had our system developed by the time the forum started...We just really, really gelled… It really helped us in the long run, to not only work better together as facilitators but also helped us to be a cohesive unit for our participants.”

- Truth & Reconciliation co-facilitator with IDD-MH

2)  Persons with IDD-MH and their families are eager to take on a range of research roles.

"[I want to be a research] participant, because I like research and want to represent people with IDD. Second choice, I would like to be a researcher. I would like to research about medication for people with disabilities and how to be supportive and be there for them.”

- Young Adult, Truth & Reconciliation Forum

“As a parent of a son, a person with IDD and mental health issues, being an advocate is my best strength.”

- Family Member, Truth & Reconciliation Forum

3) Researchers must consider the relevance and benefit of their studies to persons with IDD-MH and their families on individual, practice, and societal levels.

“Make sure that people on the study are having fun, and are connected, because …it does not feel good if somebody does not understand what you are learning about…I think a benefit is to really make sure that you are with people …to really all join in and be included and be involved in the great study.”

- Young Adult, Truth & Reconciliation Forum

“I would want to know in a study, was there any changes in the overall education and knowledge of the general public? Not just the people with developmental disabilities or the families of people with developmental disabilities, outside of that realm, was education received and made a difference?”

- Young Adult, Truth & Reconciliation Forum

4) Meaningful engagement of young adults with IDD-MH in research is possible when all team members:

  • Live the principle “nothing about us without us”

  • Understand the history of harms in research and make a commitment to address them

  • Recognize that all research occurs in a cultural context

  • Celebrate each other’s strengths