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Family Participation in Research – Highlighting Research Advisors

From the desk of Anna Pallotta, Research Family Engagement Committee (RFEC) Co-chair

As a parent and co-chair of the RFEC, it is exciting to see how family engagement in Holland Bloorview's research institute continues to grow - the many different ways that families are getting involved in the research process, and the impact of that involvement.

Family leaders who participate as research advisors bring a family perspective to specific research projects (current or future). They do this as part of working groups, or when providing feedback – sometimes on a one-time basis on specific aspects of a project.

Other times, family research advisors join a research team and stay involved through many or all stages of a project. As of mid-December 2016, long-term family research advisors had been involved in eighteen Holland Bloorview research projects for more than one year. 

How do long-term family research advisors view their role and impact, and similarly, what are the researchers’ views? 

As a starting point, we asked one of the research teams - a researcher and two family research advisors (who are working on a project/intervention related to employment for youth with disabilities). This is some of what they shared:

Role of family research advisors: The family research advisors helped to develop and refine aspects of the intervention.

What do family research advisors on the study think?

“I am able to share information as a parent who has first-hand familiarity with the numerous concerns and challenges parents and youth navigate through on an ongoing basis.”  Candace

“I am also fortunate in this process to not only have input, but to learn from other parents and the on-going research…” Jan

Families should feel encouraged to participate in the research process as they are well-equipped to do so. They have first-hand experience with everyday real-life issues, and the perspectives and insights that come from these experiences.

The family perspective is a valuable contribution to the researcher-family partnership and can help shape research that is meaningful and relevant for clients and families.

To learn more about the family engagement program, click here.