Annual Conference 2021

Centred around the theme of “Realizing Change through Partnerships and Research Innovation,” KBHN’s 2021 Annual Conference showcased fruitful partnerships in research, sparked new ones and strengthened existing ones.

With COVID-19 cases still on the rise, KBHN opted to host its annual conference online, building upon the success of 2020’s virtual event. Child psychologist and author Dr. Jody Carrington emceed the two-day gathering. “Getting connected to each other and the families that we try to treat or understand and support. That really is the answer,” she said during the opening ceremony.

KBHN-funded researchers have demonstrated this important truth in their work: They’ve partnered with families, service providers and other partners at nearly every stage of their respective projects. During conference sessions, they explained how they could not have made the same impact without these connections.

For example, the investigators who are building the Infant and Early Mental Health Hub described how they call upon Indigenous, strategic, training and research working groups to inform their resources. “I have to stress to you: these are working groups,” said Dr. Chaya Kulkarni, who leads the project. “We made it clear that we don’t need them to tell us how well we’re doing: We need them to help us understand what we need to do better, and where the gaps are that we need to fill.”

Another session showed how community agencies in Ottawa have been working with KBHN researchers to deliver a socioemotional intervention for kids with autism called Secret Agent Society—and to learn from the experience. “Research-practice partnership is so key to understanding the real-world realities of scaling, implementing and evaluating interventions in the community,” said Dr. Carrington as she introduced the speakers.

ABLE2’s Fetal Alcohol Resource Program, also supported by KBHN, described some of their many impactful partnerships, including an FASD worker program that they co-deliver with the Children’s Hospital of Eastern Ontario. The inter-organizational team behind EDIT-CP, a project that aims to ensure that cerebral palsy gets diagnosed and treated early in life, explained how the participation of caregivers is essential for effective early intervention.

Another highlight was the keynote address from Dr. Christine Imms, the Apex Australia Chair of Neurodevelopment and Disability at the University of Melbourne. She asserted that the participation of young people with disabilities and their families in research is a human right—and part of the wide range of life situations where increased participation is a desirable outcome in itself.

That said, good intentions don’t automatically lead to good outcomes. A session called “From #HowNotToDoPatientEngagement to #BuildingBackTrust” explored the challenges of family involvement in research with constructive honesty. The panelists, who included parents, discussed what we can learn from stories of times when families were dissatisfied or the project didn’t go according to plan.

Family engagement is one of the cutting-edge topics that have been on the minds of KBHN trainees, many of whom shared posters at virtual booths to convey their findings. Others delivered lightning talks, which distilled complex research into clear, compelling three-minute oral presentations: an impressive feat of science communication and knowledge translation. The trainee-led PART Committee and conference attendees selected two lightning talks and six posters for special recognition.

Trainees were also front-and-centre for a session called “It takes a village: Stakeholder engagement as a critical lens for the National Autism Strategy Development and Implementation.” It summarized the work achieved this year by the KBHN-Autism Alliance of Canada (formerly known as CASDA) Policy Development fellows, who led working groups consisting of people with autism, caregivers, policy-makers and service providers from across Canada. Together they created policy briefs that will help the federal government to develop a National Autism Strategy in support of social inclusion, effective services and economic inclusion.

The Fraser Mustard lecture, delivered by Dr. Paige Church, was a moving personal account of her experiences as a neonatologist, a pediatrician and a person living with spina bifida. She spoke of how ableism influences medicine, to the point where she hid the effects of her condition from her colleagues for many years. She also offered perspectives that could prevent ableist biases from interfering with good care. “Not all conditions can be fixed,” she emphasized. “And that’s okay. Solutions to live well matter just as much.”

It was a pertinent reminder of why KBHN exists, which is to provide solutions for what matters the most to people with disabilities and their families: happy, healthy lives. As each conference session explored in its own way, partnerships are key to progressing toward this goal.