This webinar is now over but if you missed it, please feel free to watch the recording below

In the CHILD-BRIGHT READYorNot(tm) Brain-Based Disabilities (BBD) Project, we have been working with multiple stakeholders to develop and evaluate an e-health application to help youth with BBD prepare for the transition from pediatric to adult health care. In this webinar, we will showcase a unique set of strategies to tackle obstacles our trial is facing due to the pandemic.

When: Wednesday, November 25, 2020
Time: 11:00 - noon p.m. EST

LEARNING OBJECTIVES

Session Objectives:

We will describe how we have adapted our approach to recruitment, training and support materials, consent and assent, and study visits.

1. Social media recruitment. Together with our Patient and Family Advisory Council (PFAC),  we have developed and implemented a social media recruitment strategy as a complement to our traditional clinic recruitment.

2. Online training and support materials. Research staff training is designed to be done by distance learning, completed online and uses video modules interspersed with quiz questions to test knowledge of the information covered. Similarly, the App support interface for youth participants is offered online.

3. Assent video combined with verbal consent process. Due to the pandemic, we have added a telephone verbal consent interview script and log rather than signed consent. The process begins with a video overview. 

4. Conducting study visits virtually. In the absence of in-person clinics, we have added the option to conduct study visits by phone or Zoom meeting. We will discuss ways to make virtual visits secure, and ways to establish rapport with participants, including the use of visuals to give an overview of what we will be doing together during visits. 

The strategies we share in the webinar may be of interest to other researchers and research staff who are planning or conducting a research trial during the COVID-19 pandemic.

Facilitators from the READYorNot™ Brain-Based Disabilities Project Team

• Jan Willem Gorter, Co-Principal Investigator

• Donna Thomson, Parent-Partner and CHILD-BRIGHT Committee Member

• Barb Galuppi, Trial Coordinator

• Alicia Via-Dufresne Ley, Project Manager

• Sonya Strohm, Research Coordinator

• Nadilein Mahlberg, Trial Coordinator

• Linda Nguyen, PhD Candidate and Graduate Trainee for the CHILD-BRIGHT Network

• Claire Dawe-McCord, Patient-Partner and National Youth Advisory Panel Member, CHILD-BRIGHT Network

This webinar is now over but if you missed it, please feel free to watch the recordings below

The goal of IMAGINE is to find the underlying causes of atypical cerebral palsy in 100 families. Atypical cerebral palsy is an umbrella term for some types of muscular coordination problems, where, for various reasons, we think the cause is likely to be genetic. We use whole genome sequencing and metabolomics, together, to make diagnoses.  Whole genome sequencing maps all the DNA that instructs our bodies how to function. Metabolomics look at the molecules that control our bodies’ systems. This is a long and complex study. We’ve had help from participant-families to co-develop supportive resources that meet families’ needs.

When: Wednesday, November 4, 2020
Time: 11:00 - noon p.m. EST

LEARNING OBJECTIVES

Participants will be able to:

• Explore the ability of genomic and metabolomic testing to determine a specific diagnosis for atypical cerebral palsy, and the importance of this information to families,

• Understand the importance of supporting families during complex studies, as well as when a genomic result has been provided, and

• Evaluate the efficacy of several tools co-developed with participant-families at their suggestion.

SPEAKERS

Colleen Guimond, MSc,CGC
Colleen Guimond is a certified genetic counsellor who completed her undergraduate degree in Biomedical and Health Science at the University of Guelph, and her Master's degree in Genetic Counselling at the University of British Columbia (UBC). She has worked in prenatal, pediatric and adult settings throughout her career. She currently holds three positions: one at Olive Fertility Centre, the second at BC Children's Hospital as part of a study for Whole Genome Sequencing in Atypical Cerebral Palsy, and the third as co-lead for curriculum development for two courses in the UBC Certificate in Genomic Counselling and Variant Interpretation. At CHILD-BRIGHT, she is a project team member of the Diagnosis Using Integrated Metabolomics And Genomics In Neurodevelopment (IMAGINE) research project.

Patricia Birch, MSc, RN
Patricia Birch is a researcher, educator, and manager with extensive clinical experience in genetic counselling and nursing, including outpost nursing. Common threads throughout her career have been a desire to improve access, equity, and quality of family-centred care. Patricia has studied the efficacy of different methods of delivering genetic counselling and recently co-designed and implemented an online, interactive, multilingual decision aid to support families’ Whole Genome Sequencing (WGS) testing choices.  Her research also includes the first measurement of shared decision-making in genetic counselling.  She recently collaborated in a successful project to begin a conversation about the meaning of genomics for Indigenous peoples. At CHILD-BRIGHT, she is a project team member of the Diagnosis Using Integrated Metabolomics And Genomics In Neurodevelopment (IMAGINE) research project.

This webinar is now over but if you missed it, please feel free to watch the recordings below

Come see what Ready2Work, one of our 2019 KT Innovation Incubator winning teams, is working on!

Meaningful employment has been identified as a priority for many people with autism, yet their rates of unemployment and underemployment remain among the highest in Canada. While much of the existing research in this area has focused on individual characteristics and social factors associated with employment success, relatively less emphasis has been on understanding the relevant job search skills, tools, and resources that job seekers with autism might need to secure employment. The purpose of this webinar is to present our process of developing a user-informed online employment platform aimed at addressing the needs of job seekers with autism.

When: Thursday, October 15, 2020
Time: 11:00 - noon p.m. EST

PRESENTERS

Jean Phan
Jean completed her Honours Bachelor of Science in Mental Health Studies at the University of Toronto Scarborough. She is currently an MA student in the Department of Applied Disability Studies (completing a specialization in applied behaviour analysis) at Brock University under the supervision of Dr. Priscilla Burnham Riosa. Her research interests include understanding the needs of individuals with neurodevelopmental disabilities and their support systems to foster mental health and well-being. Jean’s research interests have been shaped by her work in the field of developmental disabilities and mental health, particularly her role as a health and research project coordinator at Special Olympics and her work as a behaviour therapist for children and youth with neurodevelopmental disabilities.

Priscilla Burnham Riosa
Dr. Burnham Riosa is an associate professor in the Department of Applied Disability Studies at Brock University. She is a Doctoral-level Board Certified Behaviour Analyst and has been working in the disability field for over 17 years. Broadly, Dr. Burnham Riosa applies qualitative, quantitative, and mixed methods approaches to conduct research aimed at improving the well-being of people with neurodevelopmental disabilities and their families over the lifespan and across various applied contexts. Some of her specific research interests include examining the effectiveness of behavioural and cognitive-behavioural interventions for people with neurodevelopmental disabilities and their families, exploring therapeutic factors that influence treatment success, evaluating the service and support needs of people with neurodevelopmental disabilities, and understanding the lived experiences of people with neurodevelopmental disabilities and their families.

This webinar is now over but if you missed it, please feel free to watch the recordings below

Leaving the NICU is often a challenging time for families and can make them feel both excitement and fear in equal measure.  In our Coached, Coordinated, Enhanced Neonatal Transition (CCENT) study, we have been looking at models for supporting and empowering families through this stressful transition.  What we’re learning seems even more important in light of the added stress brought by COVID-19.  In this webinar, a neonatologist/developmental paediatrician, a nurse navigator, and a graduate NICU parent will share some reflections from the past few months, and what we think NICU parents need from us now as they prepare for life at home during the pandemic.

Provided by the CHILD-BRIGHT Network in collaboration with Children’s Healthcare Canada.

When: Tuesday, September 29, 2020
Time: Noon - 1:00 p.m. EST

LEARNING OBJECTIVES

Participants will be able to:

1. Identify challenges generally experienced by NICU families during and after their transition home

2. Understand how COVID-19 has exacerbated these challenges and created new ones for NICU families, and

3. Describe how supportive and holistic care models (such as our Acceptance Commitment Training approach) can help families address the emotional and practical issues they’re facing, and empower them with personal problem-solving strategies.
   

PRESENTERS

Dr. Paige T. Church (Neonatologist and CCENT Investigator at Sunnybrook)

Dr. Church is a graduate of the University of Vermont College of Medicine.  Her paediatrics training was completed at the University of Chicago, focusing on inner city medicine and complex care. She then undertook a combined fellowship in Neonatal-Perinatal Medicine and Developmental Behavioral Paediatrics at Tufts University School of Medicine in Boston.

Dr. Church is currently an Associate Professor in the Department of Paediatrics at the University of Toronto.  She is on staff at Sunnybrook Health Sciences Centre as a staff neonatologist and is a consulting developmental behavioral pediatrician at Bloorview Kids Rehab.  She is the director of the Neonatal Follow Up Clinic at Sunnybrook Health Sciences Centre.  She is also the co-Principal Investigator of the CHILD-BRIGHT Network Coached, Coordinated, Enhanced Neonatal Transition (CCENT) study.

Kate Robson (CCENT Parent-Partner Lead)

Kate is the Parent Partner Lead at the Coached, Coordinated, Enhanced Neonatal Transition (CCENT) research project. Both of Kate’s daughters were born preterm - one was a 500 gram 25 weeker born in 2005, and the other came at 32 weeks in 2007.  Inspired by her own experiences, she came back to the NICU in 2010 to work with families as a Neonatal Intensive Care Unit Family Support Specialist. She also has a private therapy practice in Toronto where she offers support to NICU parents and clinicians. 

Amie Nowak (CCENT Nurse Navigator in BC)

Amie has lived in BC her entire life, and started working at the BC Children's Hospital  (BCCH) early in her nursing career. She has been the pediatric general surgery nurse specializing in ostomies and wounds since 2006. She stumbled into research and is loving interacting with families in a whole new way, and supporting them as they transition home. In her spare time, she enjoys hanging out with her husband and kids, walking her dog, and stopping her cats from destroying everything green in her house.

This webinar is now over but if you missed it, please feel free to watch the recordings below

We will discuss the challenges of parenting during the pandemic with a special emphasis on parenting a child with neurodiversity.  The pandemic presents unique challenges. Although the general principles of parenting are the same in a pandemic and in normal times, somewhat different strategies may be helpful. Questions and comments from the audience are encouraged.

Provided by the CHILD-BRIGHT Network in collaboration with Children’s Healthcare Canada

When: Tuesday, September 22, 2020
Time: 1:00-2:00 p.m. EST

PRESENTERS

Dr. Patrick McGrath

Dr. McGrath is a clinical psychologist, scientist, senior health administrator and social entrepreneur. He currently is Emeritus Professor of Psychiatry at Dalhousie University and Scientist at the IWK Health Centre in Halifax, Nova Scotia, Chair of the Board of Strongest Families Institute, clinician with CMAP Health and Founder and CEO of 90Second Health. His research focuses on two areas: the use of technology to deliver care and pain in child health. At CHILD-BRIGHT, Dr. McGrath is the co-Principle Investigator of the Strongest Families Neurodevelopmental Program research project. He develops interventions and conducts pragmatic randomized trials to evaluate the interventions. In his clinic, he tackles a wide variety of problems with children and adults from a cognitive behavioural perspective in partnership with his clients and their families. He has published over 350 peer-reviewed papers, 50 book chapters and 14 books. He has received numerous national and international awards.

Laurie Geschke, Parent Advisor

Laurie Geschke is a mother, first and foremost.  She is also a writer, lobbyist, workshop facilitator, and advisor on the federally funded Registered Disability Savings Program (RDSP) Helpline.  Laurie speaks English, French and some Spanish.  She chairs the Board of Directors of the FASD Society of BC, now 20 years in operation at the Asante Centre in Maple Ridge.  She also serves on the Parent Advisory Committee for the Strongest Families Neurodevelopmental research project, funded through the CHILD-BRIGHT Network. Laurie’s current work-related passions are in the areas of safe, affordable housing for low income individuals and families, and future planning for families with a family member with a disability.  This includes providing information on creating wills, and the use of trusts and the RDSP as exempt assets so the family member receiving disability benefits in BC can keep receiving those benefits and still receive an inheritance as well.

This webinar is now over, but if you missed it, please feel free to watch the recording below.

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

This webinar is now over, but if you missed it, please feel free to watch the recording below.

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.

This webinar is now over, but if you missed it, please feel free to watch the recording below.

Integration of research and clinical care is highly valued but is often difficult to achieve within the realities of a busy children’s hospital. A model for how this can be achieved is provided by the SPORT trial, a CHILD-BRIGHT multicenter study of non-invasive brain stimulation paired with intensive therapy for children with perinatal stroke and cerebral palsy. With presenters including a clinical therapist, post-doctoral fellow, and clinician scientist, the rationale, methods and early outcomes of this trial will be presented as an example of how such integration might succeed within Canadian pediatric centers.

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

Speakers:
Alicia Hilderley PhD
Megan Metzler OT
Adam Kirton MD

Adam Kirton MD MSc FRCPC
Dr. Kirton is Professor of Pediatrics, Radiology, and Clinical Neurosciences at the University of Calgary and an attending Pediatric Neurologist at the Alberta Children’s Hospital. His research focuses on applying technologies including non-invasive brain stimulation and neuroimaging to measure and modulate the response of the developing brain to early injury to generate new therapies. He is a clinician scientist and CIHR Foundation Grant Recipient. Dr. Kirton directs the Calgary Pediatric Stroke Program, Alberta Perinatal Stroke Project, ACH Pediatric Non-Invasive Brain Stimulation Laboratory and University of Calgary Noninvasive Neurostimulation Network (N3).

Alicia Hilderley PhD
Alicia is a postdoctoral research fellow with the Calgary Pediatric Stroke Program at the University of Calgary and Alberta Children’s Hospital, working with Dr. Adam Kirton. Her research interests include design and evaluation of pediatric movement interventions, and use of neuroimaging to investigate neural function, structure, and plasticity. Alicia’s doctoral training in Rehabilitation Sciences at the University of Toronto focused on motor learning and neuroplasticity in children with cerebral palsy. She is a Registered Kinesiologist (inactive status) and is actively involved in coaching community adapted sports.

Megan Metzler BScOT MSc
Megan Metzler is an occupational therapist research clinician at the Alberta Children’s Hospital. The role involves promoting integration of clinical best practices, treating children clinically, and supporting ongoing research trials. Her research interests include the efficacy of intensive motor therapies in combination with novel technology after perinatal stroke and the role of therapy for visual deficits arising from neurological injury.

THIS WEBINAR HAS ALREADY TAKEN PLACE, BUT IF YOU MISSED IT, PLEASE FEEL FREE TO WATCH THE RECORDING BELOW.

Join us for this webinar, highlighting our work, hosted by CAPHC, as part of their CAPHC Presents! series.

Wednesday, June 20
11-12pm EDT

A coach or navigator approach is a new model that is now increasingly used in pediatric health care contexts. This webinar will provide an overview of what a coach is and the current evidence that exists in the use of a coach for parents of children with disabilities. Three research projects funded by CHILD-BRIGHT that use a coach model at three transition points in a child’s development will also be highlighted.

Speakers:
Maureen O'Donnell
Tatiana Ogourtsova
Annette Majnemer
Eyal Cohen

Tatiana Ogourtsova PhD, MSc, BSc OT (c), erg
Tatiana Ogourtsova is a Postdoctoral Fellow at the University of British Columbia (UBC), Department of Medicine, Pediatrics, mentored collaboratively by Dr. Maureen O’Donnell (UBC) and Dr. Annette Majnemer (McGill University) in the CHILD-BRIGHT’s Strategy for Patient Oriented Research. Tatiana is an Occupational Therapist, with several years of clinical experience at the McGill University Health Center – acute care (MUHC, Montreal, PQ). She completed her MSc and PhD in Rehabilitation Sciences at McGill University (Montreal, PQ) in the field of neurorehabilitation and knowledge translation.

Annette Majnemer  PhD, OT, FCAHS
Annette Majnemer is an occupational therapist with doctoral training in the neurosciences. She is a Professor at the School of Physical & Occupational Therapy  (SPOT) at McGill University, with cross appointments in the Departments of Neurology & Neurosurgery and Pediatrics. She is currently Vice Dean – Education for the Faculty of Medicine, McGill University, and is a Senior Scientist at the Research Institute of the McGill University Health Centre where she leads the CHILD-BRIGHT national SPOR Network. 

Eyal Cohen, MD, MSc, FRCP(C)
Dr. Eyal Cohen trained in pediatrics at the Hospital for Sick Children and Children's Hospital at Westmead in Sydney, Australia, completed an MSc in health research methodology at McMaster University in 2008.  Dr. Cohen co-founded the Complex Care Program in the Division of Pediatric Medicine at The Hospital for Sick Children where he is an Associate Scientist in the Research Institute.  He is an Associate Professor of Pediatrics at the University of Toronto with cross-appointments in the Institute of Health Policy, Management and Evaluation.  He is also a Scientist with the CanChild Centre for Childhood Disability Research at McMaster University.

Maureen O'Donnell MD MSc FRCPC
Dr. Maureen O'Donnell is the Executive Director of Child Health BC. A sub-specialist in Developmental Pediatrics, she has served as UBC Division Head, and has held provincial, national and international leadership roles related to her field. She holds a Master’s degree in clinical epidemiology and is an Associate Professor in the UBC Department of Pediatrics.  She served as Special Advisor to BC’s Deputy Minister of Health on CYSN for almost 5 years. Child Health BC is a network bringing together health system planners, administrators, policy makers and professional organizations from across BC and is an initiative of BC Children's Hospital.  

This event has now passed, but you can view a recording of this webinar here: 

Event hosted by the BC SUPPORT Unit

March 9, 2018

Noon to 1 p.m. (PST) / 3 to 4 p.m. (EST)

Join us for an update on the CHILD-BRIGHT Network. As one of Canada’s SPOR networks in chronic diseases, CHILD-BRIGHT aims to improve life outcomes for children with brain-based developmental disabilities and their families. During this webinar, hosted by the BC SUPPORT Unit, speakers Daniel Goldowitz, CHILD-BRIGHT Network Co-Director, and Pierre Zwiegers, CHILD-BRIGHT Training Coordinator, will present an overview of the network and its ongoing activities.

FREE ADMISSION