All too often in Canada, and around the world, babies are born with conditions that put them at risk of brain-based developmental disabilities such as being born too early (preterm), with heart disease, or genetic conditions. Despite advances in medical care, affected newborns remain at high risk for lifelong challenges in their cognitive, physical, and social development. Based on our interactions with parents of children with these conditions, they want to ensure that their children develop as optimally as those born healthy. New evidence suggests that brain and mental health outcomes following early adversity can be improved by enhancing brain repair and recovery through novel approaches such as with brain stimulation or medicines. In this session, we will explore together whether these novel approaches to enhancing brain repair and recovery have the potential to “fix the brain”.
Moderators: Steven Miller, Dana Florence
Speaker: Adam Kirton
Responders: Jack Hourigan, Maryam Oskoui
A large proportion of children with neurodevelopmental disorders also have mental health conditions that are manifest through their behaviour. They may show this through aggressive behaviours toward themselves or others as well as through low motivation, disengagement, and even total withdrawal. To date, services oriented toward children with neurodevelopmental disorders identify that they are not well equipped to address these kinds of behavioural concerns; at the same time those who provide services to children with mental health issues feel equally ill-equipped to provide support to families whose children have neurodevelopmental disorders. Projects identified in this theme begin to break down the barriers between these siloes. Working together with clinicians and parent advisors, we are evaluating innovative approaches to see if they make a difference!
Moderators: Patrick McGrath, Frank Gavin
Speaker: Jennifer Crosbie
Responders: Lucyna Lach, Aryeh Gitterman
Families face many challenges in different health care contexts as their child grows and develops. Three CHILD-BRIGHT research projects are testing novel ways of redesigning the health care system to be more responsive to family needs through key transitions from infancy to adulthood. Coaching models together with eHealth technologies will be used to provide families and youth with personalized education and support, so that they can take charge of their health and health care. This session will highlight one study focused on supporting adolescents with developmental challenges, and will briefly summarize the other two studies with younger populations at key transitions. This research will be framed by the perspectives of parents and clinician researchers.
Moderators: Eyal Cohen, Crystal Chin
Speaker: Ariane Marelli
Responders: Amy Houtrow, Kate Robson
This session will focus on effective ways - with perhaps some mention of ineffective ways - of engaging youth as partners in research projects, on the training requirements for both youth and researchers, and on ways of sustaining and deepening such engagement. Youth and researchers from the national SPOR chronic pain network will share their experience as will youth involved in research related to brain-based disabilities.
Facilitators: Jennifer Stinson, Carley Quolelette, Kathryn Birnie
Through this highly interactive workshop, participants will begin by defining a shared understanding of integrated knowledge translation. Participants will then discover what it means to “innovate”, and how innovations can be applied to knowledge translation science. Through creative brainstorming techniques and by building partnerships with other participants, attendees will have the opportunity to generate and expand on innovative knowledge translation project ideas. As an example, an open-mic style period will allow participants to share their project ideas – no matter how daring, outrageous, creative or out-of-the-box they might be. The session will conclude with concrete actions to further conceptualize the ideas discussed, and will encourage partners to participate in the Innovation Incubator funding competition to help bring a unique, innovative integrated Knowledge Translation (iKT) project to life.
Facilitators: Keiko Shikako-Thomas
This workshop is intended for all relevant stakeholder groups with an interest in the area of patient-oriented research within the context of neurodevelopmental disorders. Workshop participants from the research community can expect to gain a deeper insight into the public’s understanding regarding health research, while patients and families will develop insight into the research enterprise and identify areas where they can become more actively involved. Additionally, participants will brainstorm and identify areas where there is a lack of training resources specific to pediatric brain health, and in so doing, aid in prioritizing the strategic planning of CHILD-BRIGHT’s Training Core in developing training materials.
Facilitators: Patient-Oriented Research Training Program
CHILD-BRIGHT’s marketplace is a dynamic and interactive gathering where our network members, teams and programs will introduce their work and how each contributes to our collective CHILD-BRIGHT mission. The marketplace aims to create an environment conducive for members to meet each other, exchange stimulating ideas and build connections, by using a variety of formats, from interactive booths to mixed media displays e.g. posters, brochures, images and personal experiences.