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Children with disorders that impact neurodevelopment often have difficulties with executive functions and regulating emotions. Cognitive-based video game training has been shown to improve outcomes, however, this training has been expensive, has required professional supervision, and has been investigated only within a narrow group of children. The CHILD-BRIGHT Mega Team study is a trial to test the effects of a highly engaging, take-home video game-based intervention designed to improve executive functioning in children with various brain-based developmental disabilities.

This webinar will introduce Mega Team as a video game-based intervention for children with brain-based developmental disabilities. It will discuss the experience of including youth and families’ involvement in the research, including lessons learned and knowledge gained. The webinar will touch on strategies for meaningful inclusion of youth input within the design of this novel intervention, study design and implementation.

The webinar will let attendees know how to take part or refer others to the study.

When: Wednesday, November 6, 2019
Time: 11:00 a.m. - noon EDT / 8:00-9:00 a.m. PDT
 

PRESENTERS

Dr. Jennifer Crosbie
Dr. Jennifer Crosbie is a Clinical Psychologist and Health Clinician Scientist within the Department of Psychiatry. Dr. Crosbie is an Associate Scientist within the SickKids Research Institute, Neuroscience and Mental Health Program, and Assistant Professor at the University of Toronto. Dr. Crosbie’s research and clinical work are focused on understanding the neurobiological determinants of childhood neuropsychiatric disorders, with a particular focus on attention deficit hyperactivity disorder (ADHD). She is principal investigator on the Mega Team project within the CHILD-BRIGHT Network.

Dr. Anne-Claude Bedard
Dr. Bedard is an Assistant Professor in the Department of Applied Psychology & Human Development at the Ontario Institute for Studies in Education (OISE) at the University of Toronto.  Dr. Bedard's research focuses on the study of impaired cognition in childhood mental disorders. She has expertise in the development, administration, and interpretation of neurocognitive assessment measures. She has conducted several research studies evaluating pharmacological (e.g., stimulant and non-stimulant agents) and non-pharmacological (e.g., computer-based cognitive training, play-based executive functioning training, physical exercise) interventions for individuals with ADHD across the life span. 

Dr. Victoria Lishak
Dr. Victoria Lishak is a clinical research fellow at the Schachar-Crosbie Lab, The Hospital for Sick children. She is involved in developing and studying game-based cognitive intervention for children with neurodevelopmental disorders. Victoria is also a registered clinical psychologist who works with children with a variety of neurodevelopmental conditions. Victoria is interested in understanding the cognitive processes in children with ADHD and other brain-based disorders, as well as developing novel ways of helping these children overcome their difficulties. Victoria believes that patient-partner participation is particularly important to this area of research as children with neurodevelopmental disorders not only have a unique perspective on their condition but also are experts in video games.

Noam McCready
Noam is a Grade 10 student (15 years old) in the Gifted program at Northern Secondary in midtown Toronto. Noam's speech about living with ADHD was presented at the Provincial Level French Public Speaking competition. He really enjoys designing and building things to create on the 3D printer.

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As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for this final session.

When: Thursday, August 22, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

In this session, we will:

• Introduce some of the key historical, contextual, and ethical considerations when considering research involving First Nation peoples and populations

• Explore the importance of integrating both Indigenous and Western knowledge in research approaches

• Discuss the First Nation principles of ownership, control, access, possession (OCAP®)

• Use our project, "Prenatal Opioid Exposure and Neonatal Abstinence Syndrome: A Research Project with Indigenous Peoples in Ontario First Nations", as a case study to illustrate how we embedded these concepts into our research

• Share perspectives on patient-oriented research as Indigenous researchers and community members.

Facilitators:

Christi Poulette, RN, BScN, Health Services Nurse-in-Charge, Oneida Nation of the Thames

Jennifer Walker, PhD, Canada Research Chair in Indigenous Health, Laurentian University, and Indigenous Health Lead, ICES

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As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the third of these sessions:

When: Wednesday, July 17, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

The key to successful ‘reciprocity’ or ‘the practice of exchanging things with others for mutual benefit in an applied research setting’ is garnering a clear understanding of what different ‘stakeholders’ or partners are hoping to obtain from the exchange.  When these aims and differing perspectives are clearly understood by all partners, this allows for the development of an authentic partnership.  This session will focus on parent/researcher reciprocity within an applied research setting.  

The objectives of this session are the following:

• A discussion of common aims/wishes/motivators for parent stakeholders to engage with research stakeholders in applied research (Brenda Agnew)

• A discussion of common aims/wishes/motivators for researchers to engage with parent stakeholders in applied research (Darcy Fehlings)

• The presentation of a ‘framework’ to promote an authentic partnership between parents and researchers to maximize ‘reciprocity’ and mutual benefit (Heather Shearer)

• To open up a dialogue with participants in the session around perceived barriers and facilitators of successful partnering between parents and researchers.

Facilitators:
Brenda Agnew  (Parent Stakeholder), Heather Shearer (Parent and Research Stakeholder), Darcy Fehlings (Clinician and Research Stakeholder)

When: Wednesday, Jul 10 2019
Time: 12:00 pm Pacific Time / 3:00 p.m. Eastern Time

Join us to learn more about a number of initiatives that are designed to enhance skills and promote the concept of patient-oriented research (POR). In the session we will highlight:

• The Patient-Oriented Research Curriculum in Child Health (PORCCH), a series of self-directed online modules that will be freely available

• The Patient-oriented Research Repository (PoRR), an online matchmaking tool to connect UBC-affiliated POR investigators with students interested in gaining valuable practical experience

• CHILD-BRIGHT's 2019 Summer Learning Series which builds capacity in POR through a series of online webinars

• CHILD-BRIGHT's Training Innovation Fund which supports the development of unique POR training outputs.

Presented by: Dr. Colin Macarthur & Pierre Zwiegers

Colin Macarthur (MBChB, PhD) is currently a Senior Scientist in the Hospital for Sick Children Research Institute in the Child Health Evaluative Sciences Program. Dr. Macarthur is a Professor in the Department of Paediatrics and the Department of Health Policy Management and Evaluation at the University of Toronto. His area of research interest is the epidemiology and prevention of childhood injury.

Pierre Zwiegers (MSc) currently coordinates the training and capacity developing efforts of the CHILD-BRIGHT SPOR Network.

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As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the second of these sessions:

When: Thursday, June 27, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

Successfully implemented research is completely contingent on recruitment of ample participants that fit inclusion criteria. Donna Thomson, parent and author and Dr. Lach, Associate Professor at McGill University, will discuss challenges associated with recruiting participants from parent and researcher perspectives, and they will identify strategies that increase likelihood of participation. Understanding the dialectic between parent motivation for participation in research and what researchers need for a successful study will shed light on pragmatic approaches that complement these perspectives.

Facilitators: Donna Thomson & Lucyna Lach

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As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the first of these sessions:

When: Tuesday, June 11, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

The goal of this session is to explore how researchers and family/patient advisors can build a strong foundation for collaboration. Participants will learn:

• How (and why) to engage patient and family advisors early in the research cycle

• How to create communication models that help all participants remain involved; and

• How to manage changes or conflicts with flexible approaches.

Facilitators: Kate Robson & Julia Orkin

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Neurodevelopmental impairment has become the main measure of the Neonatal Intensive Care Unit’s 'success' in preterm outcome research. However, this represents the scientific and medical point of view, not the parents' perspective. The Parent-EPIQ team created the Parents' Voice Project, which aims to engage parents to co-create definitions of important preterm outcomes. This project is an example of how research can be done with families, and not just about families.

This webinar will introduce you to the Parents’ Voice Project and why it is important for parents to be partners in research.

Parent-EPIQ is part of the CHILD-BRIGHT Network of researchers dedicated to developing innovative interventions to improve long-term outcomes for children with brain-based developmental disabilities and is funded in part by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).

When: Wednesday, May 8
Time: 11:00am-12:00pm EST 

PRESENTERS

Acknowledgements

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Mental health disorders occur more often in children with neurodisabilites (ND) than in their peers, with only a small percentage receiving mental health care. To help alleviate this troubling situation, researchers partnered with parents to adapt an existing online parenting program to the needs of families of children across neurodisabilities. Combining educational modules with group coaching and -parent-to parent support, Parents Empowering Neurodiverse Kids is the latest in a suite of Strongest Families programs designed to provide parents with skills to help manage their children’s challenging behaviours and holds promise to improve quality of life for children with diagnoses across NDs and their families. This new program will be tested in an upcoming study open to families across Canada.

This webinar will introduce you to the Parents Empowering Neurodiverse Kids program, discuss families’ involvement in this research, and let you know how you can take part or refer others to the study.

The Strongest Families Neurodevelopmental project is part of the CHILD-BRIGHT Network of researchers dedicated to developing innovative interventions to improve long-term outcomes for children with brain-based developmental disabilities and is funded in part by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).

When: Wednesday, January 9
Time: 11:00am-12:00pm EST 

PRESENTERS

Patrick McGrath OC, PhD, FRSC, FCAHS
Patrick McGrath is a clinical psychologist, scientist, senior health administrator and social entrepreneur. He is Professor of Psychiatry, Pediatrics and Community Health & Epidemiology at Dalhousie University and a Scientist at the IWK Health Centre.  His major career focus has been to use research to improve care. His research resulted in the not-for-profit Strongest Families Institute that delivers mental health care to thousands of families across Canada and in Finland. 

His research focuses on two areas:  the use of technology to deliver care and pain in child health. He has published extensively and won many awards and recognitions.

Dr. Lucyna Lach
Dr. Lach is an associate professor in the School of Social Work and an associate member of the Departments of Pediatrics, Neurology and Neurosurgery, Faculty of Medicine, McGill University. Her program of research focusses on the quality of life of children with neurodisabilities and their caregivers (i.e. caregiver health and parenting). Dr. Lach's current projects address social determinants of health of children with neurodisabiltiies. She is co-leading a team of researchers and trainees whose projects have been funded by Kids Brain Health Network (KBHN) and the Social Sciences and Humanities Research Council (SSHRC) to document determinants such as income, service use, educational outcomes, and uptake of income supports such as the Disability Tax Credit using population-based as well as administrative and clinical databases. She is also collaborating with Dr. David Nicholas to increase capacity in navigation systems that support families of children with neurodisabilities in Vancouver, Edmonton and Yellowknife. In addition, she is part of a recently funded Strategy for Patient-Oriented Research (SPOR) network called the CHILD-BRIGHT Network, and is co-leading (along with Dr. Patrick McGrath) development and implementation of a randomized controlled trial entitled the Strongest Families Neurodevelopmental Program. This project is evaluating a web-based program that combines group coaching and educational modules with parent-to-parent support for parents whose children have a neurodisability and mental health concerns.  Dr. Lach is a peer-reviewer for numerous journals and organizations that provide research funding.

Donna Thomson
Donna is the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014) and is the co-author of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman and Littlefield, June 2019).  She blogs regularly at her website, The Caregivers’ Living Room (www.donnathomson.com).

Donna has a passionate interest in family engagement in health research. She is a board director of Kids Brain Health Network and is the co-designer of a new post-graduate, online course in the area of patient and family engagement in childhood disability research at McMaster University.  She is a senior family advisor on the SPOR CHILD-BRIGHT Network and a co-researcher on the Strongest Families research project team.

Karen Turner
Karen is a Research Coordinator at the Centre for Research in Family Health at the IWK Health Centre. Karen has extensive knowledge of Strongest Families parenting programs and has worked closely with the Parent Advisory Committee, practitioners and the Strongest Families Institute in modifying the program to ensure its relevance to families of children with neurodevelopmental disabilities. She has expertise in managing large randomized controlled trials and looks forward to providing support to parents and other stakeholders interested in taking part in or referring families to this important study.