The Bloorview Research Institute’s largest annual event will occur on November 22, 2016. Its theme, Real life, real impact: Research that changes lives, will address the rise of family engagement in research and the impact that comes from engaging families beyond the role of a research participant.

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Dr. David Nicholas, PhD, RSW, is an associate professor in the Faculty of Social Work, University of Calgary, and is cross-appointed to the Department of Pediatrics, University of Alberta. His research addresses quality of life, employment support and transition in disability, family support, parenting, family-centred care, chronic illness and neurodevelopmental disabilities, with a focus on autism spectrum disorder (ASD).

We sat down with Dr. Nicholas to see what drives his research interests as he prepares to deliver the 2016 Mickey Milner Keynote Address at this year’s Symposium.

Q: What is your personal passion behind your research?

Dr. Nicholas: My research reflects a commitment to person and family-centred care, and the need to deeply consider individual and family experience in terms of how health care, community services and policy are shaped. Quality of life outcomes and opportunities to meaningfully engage in the community are important priorities that guide my research. To that end, critically considering the structures and barriers that can stand in people’s way seem important to identify and proactively address in the aim of a more welcoming world. A focus of recent work has been on the collaboration of individuals with developmental disability and their families in research planning and engagement. I have appreciated the generosity of individuals and families, and have been moved to see the power of people who come together with a common vision for a better world. Another highlight has been to watch recent steps forward in vocational opportunities for youth and adults with developmental disabilities. Several years ago, I co-hosted two conferences that brought together stakeholders with a focus on ASD and employment. I have observed some important movement forward since that time, although indeed much yet is needed.

Q: What are your thoughts on the symposium theme?

Dr. Nicholas: I applaud Holland Bloorview and its research institute in placing the aim and focus of this symposium on the family experience and impact on research. It is important that those most closely impacted by disability or health issues i.e., individuals and families, have an authentic and sustained opportunity to engage and offer guidance to and with the research community in moving forward. Partnership among individuals with disabilities, families, researchers, practitioners and policy makers, etc. seems so important in together determining and working toward our common vision. The focus of this event is such an important issue that is near to my heart and work.

Q: How do you see the family voice impacting research?

Dr. Nicholas: It seems to me that the family voice in research has been under-represented, but is emerging with stronger resonance and priority in the research community. I think that as a field, we need to move to greater authenticity in hearing and heeding family voice, and grappling with the reality that there are many ‘voices’ to be heard. Thinking about ways to engage the voices of the range of families in our diverse society is important.The title of a recent paper about the experiences of mothers of children with autism incorporated the phrase, “You have to live it to understand it”. I think this reflects how important it is that we listen well to families’ perspectives, and deeply respect that understanding and experience. Another focus that has emerged is the need for hope. I’ve observed that amidst the journey and challenges of life is the importance of hope. It seems important that we are realistic and critical in the sense of reflecting on existing barriers in the field of developmental disability, yet also convey hope in our messaging to individuals and families as well as within our practice and policies.