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Join members of the CHILD-BRIGHT National Youth Advocacy Council on Aug. 19 at 1 p.m. ET/10 a.m. PT as they explore the crucial importance of including people with disabilities in health research focused on equity, diversity, inclusion, decolonizatio, and Indigenization (EDI-DI). They will define key concepts such as tokenism, infantilization, and non-inclusive environments, leading to a discussion of why inclusion is essential and an overview of elements of inclusive research practice.

LEARNING OBJECTIVES

• Understanding the principles and benefits of inclusive research practices.

• Learning how to design research projects that include people with disabilities as critical partners.

• Defining key concepts of EDI-DI in health research.

• Exploring the ethical, social, and practical importance of inclusion for people with disabilities in the context of health research.

• Examining why the concept of inclusion is often an afterthought for people with disabilities in EDI-DI-focused health research.

This session aims to create an understanding of inclusive research practices and foster a more equitable and respectful approach to health research. Join us to learn how to make your research more inclusive and impactful!

FACILITATORS

• Tommy Akinnawonu, CHILD-BRIGHT National Youth Advocacy Council member

• Kelsey Seguin, CHILD-BRIGHT National Youth Advocacy Council member

• Logan Wong, CHILD-BRIGHT National Youth Advocacy Council member

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Join us on Aug. 12 at 12 p.m. ET/ 9 a.m. PT as the Critical Ethical Engagement with YOUth! (CEE YOU!) project team, recipients of a 2022 Training Innovation Fund award, presents its integrated Knowledge Translation project to develop guidelines for partnering with young people with disabilities in research.

In this project, CHILD-BRIGHT National Youth Advocacy Council members and two postdoctoral trainees co-developed Knowledge Mobilization materials to help researchers understand youth partners’ experiences and perspectives in research engagement.

The team will also share research findings and insights to support research teams when developing research partnerships with youth with neurodevelopmental disabilities.

The audience will have an opportunity to hear the firsthand experiences and reflective analytical process employed in this project from the two youth co-researchers as well as postdoctoral research trainees. A discussion period will follow the panel presentation. 

Facilitators:

• Sakiko Yamaguchi, Postdoctoral Fellow, CHILD-BRIGHT Knowledge Mobilization Program

• Linda Nguyen, Postdoctoral Fellow, CHILD-BRIGHT Knowledge Mobilization Program

• Mathias Castaldo, National Youth Advocacy Council member

• Shafniya Kanagaratnam, National Youth Advocacy Council member

• Keiko Shikako, Co-Lead, CHILD-BRIGHT Knowledge Mobilization Program & Principal Investigator, Jooay App project

Join us for "Applying Anti-Racism Principles in Health Care," on July 31, 12-2p.m. EDT/9-11 a.m. PDT. In this interactive workshop, Anna Hossain will be exploring systemic racism in the health care and research sectors.

Key highlights:

• Recognize how one's intersectionality influences our interactions in the workplace  

• Understand positionality, social location, and privilege in the context of systems, individual, and group dynamics  

• Identify strategies on how to incorporate race-conscious and anti-oppressive practices in day-to-day interactions 

Speaker:

Anna Hossain manages and oversees the EDIA and faculty development portfolio for the Department of Paedeatrics at SickKids. Anna has a MEd from McGill University and a business and labor degree from McMaster University. Anna is currently a PhD candidate in organizational behavior and human resources education. She has worked in Ontario Public Service and in academia for over a decade with various portfolios from corporate administration to service delivery with the common theme of building capacity in EDIA and belonging as well as change management. Anna is a community driver and holds Director positions in two non-profit Boards in the GTA and in Northern Ontario. Her leadership philosophy is transformational with small authentic actions woven into our everyday practices. Anna employs the ancient art of storytelling and social constructivism to co-create effective learning journeys. On the topic of equity and diversity, she believes the silence of our friends leaves psychological wounds; being a bystander and striving for equity for the most vulnerable is a responsibility we have to one another and our inner and outer world. 

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"There’s a very direct link here between workforce shortages and the quality of care we’re able to provide… We’ve all been very clear that we simply cannot run the NHS effectively or efficiently unless we have a long-term workforce plan." – Chris Hopson, NHS Chief Executive

In the post-pandemic era, deficit thinking like this continues to dominate. But what if there was a different way to approach the challenges facing our health care system?

Imagine transforming these challenges into opportunities by shifting from deficit thinking to a strength-based approach. The Strengths-Based Nursing and Health care (SBNH) leadership framework empowers health care leaders to see beyond limitations and focus on strengths. SBNH values include systems thinking, uniqueness, health and healing, multiple perspectives, self-determination, goodness-of-fit, timing, readiness, and collaborative partnerships.

Join the CHILD-BRIGHT Network Knowledge Mobilization Clinician Hub for a webinar to discover how the SBNH framework can be applied to real-life health care situations. Learn practical strategies to enhance your leadership, improve patient care, and cultivate a more resilient health care environment.

Investing in your development and mindset as a health care leader is essential to prevent burnout and foster a thriving workplace. Let SBNH thinking guide your actions and transform your leadership approach.

Learning Objectives

The typical audience for these webinars is interested in learning about the Strength-Based Nursing and Health Care framework for solving problems in a variety of patient-care settings. Participants can expect:

• Clear definitions of the values in the Strengths-Based Nursing and Health Care Leadership Value Wheel

• An introduction to the Spiralling Process

• A fun application of the framework to a children’s story

• A case study for further application and working out the concepts

• The first steps to think about problems in your own practice setting and where the SBNH-L values can be helpful

Speaker

Erin Vandeven (she/her) is the Associate Chief of Nursing Practice at the Hospital for Sick Children. Erin is an award-winning change leader who helps individuals, teams and systems implement tools and leverage behaviours that elevate the nursing profession, improve patient safety, and enhance family-centred care.  

Erin first joined SickKids as a Registered Nurse in Neuroscience and Trauma in 2006. She held a variety of positions in professional practice, education and clinical operations before moving into her current role as Associate Chief of Nursing Practice in 2021.  

Erin's philosophy of leadership is to build and sustain environments and cultures where practice excellence can thrive. Managing change is an ongoing and evolving opportunity, rather than a one-time event. Erin's strengths include her creation of safe spaces for an evolving nursing workforce, her ability to make the theoretical practical, and her willingness to role-model mindful presence and openness to change.  

 In addition to her professional practice, Erin is on a personal quest to bake the perfect chocolate chip cookie. Erin holds a Bachelor of Nursing Science and a Master of Nursing, both from the University of Toronto. 

When: Wednesday, February 21, 2024
Time: 11:00 a.m.-12:00 p.m. ET / 8:00-9:00 a.m. PT / 10:00-11:00 a.m. CT

Resources for pre-teens on sexuality and disability are lacking. This webinar, organized jointly with Children’s Healthcare Canada, will share the development of an innovative new book, Becoming You: Exploring sexuality and disability for pre-teens, co-created with youth, parents and health care providers. Using inclusive graphics and youth-friendly language, this free digital book supports nonjudgmental conversations on disability, sexuality, and identity. A multi-pronged dissemination approach included social media, conferences, and community partners. The book is available on the Let's Talk Disability and Sex online hub, which provides evidence-informed multi-modal resources for youth, parents, and health care providers. Since March 2023, the book has received 593 views.

LEARNING OBJECTIVES 

Following this webinar, participants will be able to do the following:

• Understand the importance of needs-based, evidence-informed resources

• Describe the process for co-creating the book about sexuality and identity to meet the needs of pre-teens with disabilities

• Appreciate the complexities of virtual co-creation with youth, parents, researchers, health care providers, and educators 

SPEAKERS

This event is now over but if you missed it, a recording is available below.

Social factors have increased the need for mental health care. We know that well-designed evidence-based programs have been developed. The disparity between need and fulfillment of this need has never been greater. We have challenged three major barriers. The first barrier is well known while the other two are “dirty little secrets”:

1. There is a shortage of health professionals to deliver care.

2. Many health care professionals do not deliver evidence-based care.

3. Efficiency and diversity in care delivery are not priorities.

We will discuss how well-trained paraprofessionals or coaches embedded in a well-monitored system of care represent one solution, and the challenges to implementing this solution.

Learning Objectives

Following this webinar, participants will be able to:

• Understand the reasons why current mental health services will not meet the need for service.

• Understand that paraprofessionals are one way to make a difference.

• Understand the barriers to change.

Speaker

Patrick McGrath, Practicing clinician, Researcher, IWK Health Centre, Emeritus Professor of Psychiatry at Dalhousie University

Patrick McGrath, OC, PhD, FRSC, FCAHS is a practicing clinical psychologist, a researcher at IWK Health Centre and an Emeritus Professor of Psychiatry at Dalhousie University. He co-founded the Strongest Families Institute and is Chair of the Board. His research, mentorship, and health care leadership have been recognized by appointment to the Order of Canada and election to the Royal Society of Canada and the Canadian Academy of Health Sciences. He won the Manning and Governor General Awards for Innovation and the inaugural Legacy of Leadership Award from HealthCareCan. At CHILD-BRIGHT, he is the co-Principal Investigator of the Strongest Families Neurodevelopmental Program research project. His extensive career has included being a clinician, a researcher, an administrator, and a social entrepreneur/disruptor. He has failed many times and succeeded a few times.

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In this session, the presenters will introduce the new Child Development and Rehabilitation InfoSource (CDRInfoSource) website and describe the development and evaluation of the platform. The CDRInfoSource was created by the Sunny Hill/BC Children’s Hospital Evidence Centre in partnership with the BC Children’s Hospital Digital Lab and co-designed with intended users to support knowledge translation and informed decision-making by clients, families/caregivers, clinicians, and others working with children and youth with neurodiversity and/or disability in British Columbia.

Learning Objectives

1. Increase awareness of a new resource website for clinicians who work with children and youth with neurodiversity and/or disability.

2. Describe the benefits of co-designing resources such as websites as an extension of services and supports with intended users.

Presenters

Kimberly Miller is Senior Leader, Clinical Education and Special Projects in Learning and Development and Evidence Centre Manager at BC Children’s Hospital and BC Women’s Hospital and Health Centre. As an implementation scientist embedded in the healthcare system, she supports and advances practice-based research and evidence-informed knowledge translation. She has worked as a physiotherapist, academic educator, and clinical researcher in Canada and Australia.

Debbie Field is an occupational therapist specializing in the use of assistive technologies that enable children and youth to participate more fully in daily life. She has worked in Canada, the US, and Australia. She is a Clinical Associate Professor in the Department of Occupational Science and Occupational Therapy at the University of British Columbia. She is also team lead on the CDR Redevelopment Project.

When: Wednesday, May 24, 2023
Time: 11:00 a.m-12:00 p.m. ET / 10:00-11:00 a.m. CT / 8:00-9:00 a.m. PT

This event is now over but if you missed it, a recording is available below.

Learn about patient-oriented research (POR) at the CHILD-BRIGHT Network! CHILD-BRIGHT is an innovative pan-Canadian network that aims to improve life outcomes for children with brain-based developmental disabilities and their families. This webinar will provide an overview of an example of the way the parent-researcher partnership can evolve in a POR network. In this webinar presenters will discuss the collaborative process between parent-partners as co-investigators and researchers on a CHILD-BRIGHT research project.

Learning Objectives

• Learn about the process of parent-partners engaging as co-investigators in a childhood disability research project.

• Determine the key ingredients to engagement of patient-partners as investigators in childhood disability research

• Appreciate a researcher’s perspective in collaborating with a parent-partner investigator on a childhood disability research project.

Speakers

Carrie Costello is a parent of three wonderful children aged 15, 11 and 8 years old.  Her middle daughter, Alej, has a profound intellectual disability and a seizure disorder.  Her family has spent a lot of time navigating the child health and disability world; she brings that experience to her work with parents and families in research.  Carrie works as the parent liaison at the CHILD-BRIGHT Network and supports parents and researchers involved in 12 pan-Canadian multi-year research projects.  Carrie is also the patient engagement coordinator at the Children's Hospital Research Institute of Manitoba and works to include parents, caregivers and patients as part of the research team.  She has also been a partner, collaborator, co-investigator and co-primary investigator on over 10 different research projects.

Annette Majnemer is a Professor at the School of Physical & Occupational Therapy at McGill University, and a Senior Scientist at the Research Institute of the McGill University Health Centre. She is a Fellow of the Canadian Academy of Health Sciences and co-Editor of Physical & Occupational Therapy in Pediatrics. Annette Majnemer’s research interests focus primarily on early identification of children at high risk for disability and the intrinsic and extrinsic factors that influence outcomes in children and youth with developmental disabilities. She is also studying knowledge translation strategies that promote best practice for children with developmental challenges. She currently leads the CHILD-BRIGHT Network, a pan-Canadian patient-oriented research network (SPOR) focused on children with brain-based developmental disabilities.

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The CHILD-BRIGHT Network wishes to celebrate its past accomplishments in Phase 1 as we prepare for an exciting and challenging Phase 2! For this, we will be hosting the 2022 CHILD-BRIGHT Virtual Symposium on December 9, 2022 (9 a.m. to 1:30 p.m. PST / 12:00 to 4:30 p.m. EST).

This year’s virtual symposium will feature short presentations of CHILD-BRIGHT’s research projects, invited plenary speakers that explore how we can translate and implement research findings to impact the lives of patients and families, as well as a poster session providing updates on exciting recent work.

Schedule overview

Noon EST: Introduction and welcome by Annette Majnemer
12:15 EST: Plenary session by Christine Chambers followed by Q&A
12:50 EST: Break
13:00 EST: Updates from CHILD-BRIGHT’s 13 project teams and Q&As
14:15 EST: Networking breakout
14:45 EST: Plenary session by Noah Ivers followed by Q&A
15:20 EST: Break
15:30 EST: Poster session breakout rooms
16:30 EST: End of event

This event is now over but if you missed it, a recording is available below.

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network regularly hosts Patient-Oriented research Discussions (PODs). In each session, we discuss and explore content related to patient engagement in research. This can include interesting projects and resources, pieces of media, podcasts, webinars, research articles, or any other materials that involve patient-oriented research (POR). Each session is hosted by a presenter who picks the topic and resources for the session and drives open discussions with all attendees, allowing participants to jointly explore various issues and topics that relate to POR. Each session consists of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity.

Join us to discuss our fifth topic:

When: Wednesday, July 13, 2022
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

End-to-end integration of patients as partners onto your research teams helps ensure that your questions, methods, and findings are meaningful, relevant, and implementable. Equitable compensation not only reduces barriers to contribution, but also reinforces the indispensable importance of incorporating the patient-partner’s lived experience throughout the research process. Join us as we explore some of the ethics of why fair compensation should always be offered and examine some practical strategies to help you overcome the inherent challenges to making payments possible.

Session objectives: 

1. Outline why providing compensation is important and explore some of the inherent challenges that have inhibited or may inhibit patient-partner compensation strategies  

2. Provide a brief overview of CHILD-BRIGHT’s suggested compensation guidelines

3. As a group, explore how certain challenges have been overcome and highlight possible systemic changes that would need to be implemented

Facilitators:

•    Kent Cadogan Loftsgard
•    Crystal Chin
•    Carrie Costello

This event is now over but if you missed it, a recording is available below.

Join us for an introductory webinar that will develop CHILD-BRIGHT’s understanding of implementation science (IS), knowledge mobilization (KM), and Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI). This session will highlight how each of these concepts connect with each other, and align with the priorities of patient-oriented research to help us increase our focus on equitable impact.  

When: Wednesday, June 29
Time: 2:00 to 3:30 p.m. EDT / 11:00 am to 12:30 p.m. PDT

Session Objectives

1. To strengthen the capacity of network members in the areas of IS, KM, and EDI-DI

2. To define and briefly introduce the core elements of IS, KM, and EDI-DI within the context of CHILD-BRIGHT's patient-oriented research work

3. To outline how IS, KM, and EDI-DI align with each other and patient-oriented research to support more effective and equitable impact(s)

4. To provide the opportunity for network members to ask questions of how the core elements of IS, KM, and EDI-DI apply to their research efforts

5. To direct attendees to resources that help further develop capacity in IS, KM, or EDI-DI.

Facilitators

Janet Curran, Stephanie Glegg, and Nomazulu Dlamini 

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Join us for our second Learning Series webinar of 2022! Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

When: Wednesday, April 20, 2022
Time: 12:00 p.m EDT / 9:00 a.m. PDT

Who isn’t on social media these days? Data suggests that over 87% of all Canadians engage with social media platforms in some capacity. On average these users spend nearly two hours a day scrolling through an endless stream of content and posts. As such, these platforms provide an excellent opportunity for patient-oriented research (POR) projects to engage and interact with patient-partners. How then can research teams best leverage these available tools to promote and enhance patient engagement within the lifecycle of POR projects? Join us this session to explore some of the more popular platforms that can enhance your engagement efforts along with a number of key practical strategies that can help inform your approach.

Session Objectives

1. Profile the most popular social media platforms used in Canada 

2. Detail the user base demographics of each platform and outline what each is well suited for

3. Explore a number of key practical strategies that can enhance your project’s use of social media including:

• Inclusive design tips to enhance social media accessibility

• Leveraging tools to reach a target audience more directly

• Tips to communicate science more broadly using social media platforms.

Speakers

• Amanda Doherty-Kirby

• Rakhee Chowdhury

• Brooke Allemang

• Bryn Robinson

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To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity.

Join us to discuss our fourth topic.

When: Thursday, March 24, 2022
Time: 8:00 - 9:30 a.m. PST / 11:00 a.m. - 12:30 p.m. EST

Research suggests that simulation is a powerful tool that allows learners the opportunity to recreate challenging situations and to learn from these experiences in a safe and controlled setting.  

In this session we will use a simulated scenario to explore how expectations may differ between family/youth partners and other members of the research team around how, when and where research findings are shared. This situation was chosen because family partners may be eager to share and implement research findings with their peers and community, while researchers are often required to share findings through publications and formal presentations.  As teams co-develop knowledge translation strategies, the method of sharing information, the audience, and the timing should be discussed, acknowledged and agreed upon by all team members.  

Session objectives: 

1. Explore how to construct appropriate knowledge translation (dissemination of results) activities and products to ensure the priorities of everyone on the team are adequately addressed, while ensuring the integrity of the research process is upheld. 

2. Develop strategies to successfully navigate co-authorship discussions with family/youth partners. 

3. Reiterate the importance of having key discussions (goal of the study; expectations; limitations) at the beginning of the partnership to reduce confusion and disappointment. 

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Join us for our first Learning Series webinar of 2022! Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

When: Monday, March 21, 2022
Time: 11:00 a.m-12:30 p.m. EDT / 8:00-9:30 a.m. PDT

During this informative session, participants will be introduced to the core principles of Trauma Informed Care and explore how this approach can better inform medical research.

Specifically, we will explore:

• What is Trauma Informed Care?

  • Safety

  • Choice

  • Collaboration

  • Trust and Connection

  • Empowerment

• What considerations are there for Trauma Informed Care specific to medical research? 

  • Trauma History and Trauma Response

  • Window of Tolerance

  • Psychoeducation

  • Re-traumatization

  • Language

  • Dissemination

  • Supports

  • Deficit Versus Strength

  • Validation of participants

  • Culture and Colonization
    
    

Speakers

Nicole Ward

Nicole Ward (she/her) is a registered social worker in Calgary, Alberta.  Nicole has been in front line social work roles for the last 15 years and is currently working on a multi-disciplinary team, focused on the safety of children. Nicole holds a Bachelor of Arts and a Bachelor of Social Work and is currently in her final semester at University of Calgary, where she will obtain a Master of Clinical Social Work with a focus on Trauma Informed Practice.

Nicole’s involvement with the CHILD-BRIGHT Network began in 2018, after joining the Parent-EPIQ research project as a parent advisor with the Neonatal Follow up Clinic at Alberta Children’s Hospital.  Nicole’s advocacy with NICU families was born out of a personal experience as the mother of both a full-term baby and a further birth experience of a micro preemie.  This experience fueled a passion for multiple volunteer and advocacy roles within the NICU community.

Outside of Nicole’s busy work schedule and commitment to life-long learning, she enjoys traveling home to Newfoundland with her partner, 9-year-old-daughter, and 5-year-old son.

Krista Andrews

Krista Andrews is a registered social worker who has dedicated much of her career to the area of child protection and believes that this comes with a responsibility to constantly consider opportunities for decolonization.  Krista resides in Mohkinstsis, also known as Calgary.  This Treaty 7 area is the traditional territory of the Blackfoot people and is situated where the Elbow River meets the Bow.  In the spirit of reconciliation, Krista would like to acknowledge that she lives, works, and thrives on the land that is the traditional territory of the Blackfoot Confederacy, which is made up of the Siksika, Kainai and Piikani people.  The area is also home to Tsuut’ina First Nation, Stoney Nakota First Nation, the Metis Nation Region 3, and many others who make their homes in the Treaty 7 region of Southern Alberta.

Krista holds a Bachelor of Social Work from the University of Calgary and will convocate this spring with a Master of Clinical Social Work, with a specialization in Trauma Informed Practice. Krista has a genuine appreciation for research, leadership, and learning through travel opportunities.  Prior to the current pandemic, Krista found opportunities to mix these passions and presented her research findings at international conferences such as the Women as Global Leaders conference in Dubai and the Joint World Conference on Social Work and Social Development in Hong Kong. As the mother of a now 19-year-old, Krista is looking forward to the future when she and her daughter can again travel freely and explore the world.

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Parents of children with neurodevelopmental disorders often experience traumatic events in the care of their children. However, these experiences are not widely documented or recognized by health care providers and researchers. The Life beyond Trauma program was designed to explore trauma and post-traumatic stress disorder (PTSD) in such parents and to test the trauma-focused intervention approach Narrative Exposure Therapy (NET) in a virtual setting with the parents. We will introduce outcomes and lessons learned from this program delivering NET via video calls using trained paraprofessionals. 

When: Wednesday, February 23, 2022
Time: 11 a.m. - 12 p.m. EST

Learning Objectives:

1. Learn about trauma and post-traumatic stress disorder (PTSD) symptoms in parents of children with neurodevelopmental disabilities.

2. Learn about Narrative Exposure Therapy (NET), a trauma-focused program for parents with PTSD.

3. Learn about outcomes and lessons learned from a research project delivering NET via video calls using trained paraprofessionals.

Speakers

Patrick McGrath

Patrick McGrath, OC, PhD, FRSC, FCAH is a practicing clinician at the Centre for Medical and Psychological Health, a Researcher at IWK Health Centre and an Emeritus Professor of Psychiatry at Dalhousie University. He also co-founded the Strongest Families Institute, joined the Board of Directors of the Strongest Families Institute from inception, and has been Chair of the Board since then. His research, mentorship, and health care leadership have been recognized by an appointment to the Order of Canada and election to the Royal Society of Canada and the Canadian Academy of Health Sciences. With Dr. Pottie, he won the Manning and Governor General Awards for Innovation for his work with the Strongest Families Institute. His extensive career has included being a clinician, a researcher, an administrator, and a social entrepreneur.

Donna Thomson

Donna Thomson is a caregiver, author, and advocate. Her experience was shaped by caring for her son who has cerebral palsy and is medically complex. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). Donna is a co-designer and co-instructor of The Family Engagement in Research Course and the facilitator of the Caregiving Essentials Course, both at McMaster University. Donna is a co-author of Time to be Counted: COVID-19 and Intellectual and Developmental Disabilities — an RSC Policy Briefing. For the Ontario Ministry of Health, Donna sat on The Expert Group on Home and Community Care and on the Working Group on Complex Care for Adults with Developmental Disabilities.

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

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our third topic:

When: Thursday, January 27, 2022
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

The intent of patient-oriented research is to involve patient-partners in all phases of a research project. When it comes to data analysis and the interpretation of findings, patient-partners are less frequently engaged in the process. In this session we will adopt a co-learning approach and explore how to promote authentic patient participation in this area. After providing some context, participants will engage in a number of small-group discussions to further explore several key topics, which include:

• Whether engaging patient-partners in data analysis, interpretation of findings, or both, is worth doing and doable.

• The complementary roles and skills of researchers and patient partners

• How researchers and patient-partners can anticipate the time and iterative process required

References:

Cashman S.B., Adeky S., Allen A.J. 3rd, et al. The power and the promise: working with communities to analyze data, interpret findings, and get to outcomes. Am J Public Health. 2008 Aug;98(8):1407-17. https://doi.org/10.2105/AJPH.2007.113571

Domecq, J.P., Prutsky, G., Elraiyah, T. et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14, 89. https://doi.org/10.1186/1472-6963-14-89 

Forsythe L.P., Ellis L.E., Edmundson L., et al. Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned. J Gen Intern Med. 2016;31(1):13-21. https://doi.org/10.1007/s11606-015-3450-z

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Worldwide, the defining global health crisis of the COVID-19 pandemic altered ways in which health care services are being delivered. Many Canadian rehabilitation specialists are confronted with the adoption of telerehabilitation practices. This precipitated shift in the model of health care delivery is undoubtedly substantial and further complicated by the lack of guidelines and misalignment with best evidence. 

Given the pressing need of children and youth with developmental disabilities and their families for continuity of care, telerehabilitation is currently being implemented and used based on trial-and-error, rather than on evidence. With the aim to support practicing clinicians, optimize telerehabilitation practices and their impacts, and promote best practices, we sought to systematically review the state of the evidence and determine the effectiveness of telerehabilitation in improving child/youth-related and parent-related outcomes among children/youth with developmental disabilities and their families. 

In this webinar, we will present the results of our systematic review. Existing strategies will be outlined, along with their features: target population (e.g., autism spectrum disorders, cerebral palsy), platforms used (e.g., videoconferencing vs. calls vs. use of passive web), recipient (e.g., child vs. parent), focus (e.g., behavioral outcomes, language and communication, motor abilities), and discipline (e.g., occupational therapy, speech therapy, physical therapy, etc.). The effectiveness and levels of evidence for existing telerehabilitation approaches will be presented. 

When: Wednesday, January 26, 2022
Time: 11 a.m. - 12 p.m. EST

Learning Objectives

1. Learn about the evidence on telerehabilitation interventions for children and youth with developmental disabilities and their families.

2. Learn about the evidence on telerehabilitation assessments for children and youth with developmental disabilities and their families.

3. Appreciate a parent’s perspective in receiving telerehabilitation services for their child with disabilities.

Speakers

Tatiana Ogourtsova, PhD OT

Tatiana Ogourtsova is Assistant Professor at the School of Physical and Occupational Therapy at McGill University, and a Site Researcher in Pediatrics at the Research Center of the Jewish Rehabilitation Hospital (CISSS Laval, site of the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR)). Tatiana Ogourtsova’s research aims to improve the lives of children with brain-based developmental disabilities and their families. Her research interests include health coaching for children with disabilities and their families, novel interventions to support live transitions, new methods of healthcare services delivery including the use of telerehabilitation and telehealth, knowledge translation, and patient-oriented research methodology.

Annette Majnemer, OT PhD, FCAHS

Annette Majnemer is Vice-Dean of Education at the Faculty of Medicine and Health Sciences at McGill University, and a Senior Scientist at the Research Institute of the McGill University Health Centre. Annette Majnemer’s research interests focus primarily on early identification of strategies for children at high risk of disability and the intrinsic and extrinsic factors that influence outcomes in children and youth with developmental disabilities. She is also studying knowledge translation strategies that promote best practice for children with developmental challenges. She currently leads CHILD-BRIGHT, a pan-Canadian patient-oriented research network (SPOR) focused on children with brain-based disabilities.

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To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our second topic.

When: Thursday, November 25, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

In this session we will provide an overview of a select number of resources aimed at developing capacity in patient-oriented research (POR) and outline the benefits & drawbacks of each. Selected resources include:

POR Training Programs:

• Patient-Oriented Research Curriculum in Child Health (PORCCH)

• Family Engagement in Research Course (FER)

• Patient-Oriented Research Training and Learning – Primary Health Care Online Modules (PORTL-PHC)

• FYREworks (Family/Youth/Researcher Education)

• Partners in research Course(PiR)

POR Toolkits & Resources:

• Learning Together Simulations

• The Involvement Matrix

• Workbook to guide the development of a Patient Engagement In Research
  (PEIR) Plan

• SCPOR Patient-Oriented Research Level of Engagement Tool

• Methods of Patient & Public Engagement - A Guide

• Recommendations on Patient Engagement Compensation

• CHILD-BRIGHT: Guidelines for Patient-Partner Compensation

• CIHR Jargon Buster

The goal of the session is to highlight select resources that can be used to familiarize researchers and patient-partners to the basic elements of POR and promote authentic engagement within the research team. During the session, audience members will also be encouraged to share any specific POR capacity-development assets that they have found particularly useful in the context of their own work.

In addition to the resources featured above, the PODs team wanted to share a more extensive compilation of available resources with the broader community. Please find the linked spreadsheet here.  It is meant to be an editable resource with the intention to crowdsource additional tools, resources, and training programs that would be beneficial to POR teams.

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Children with severe neurological impairment frequently experience pain, often cannot tell us where it hurts, and standard approaches offer little relief. In this webinar, we will review pain in this context. We will provide new ways to think about pain and approaches to assessment and management in this highly vulnerable population when good therapy doesn’t seem to be working. 

Tim Oberlander and Hal Siden have been working in this field for a long time and often find themselves stuck in therapeutic ‘rabbit holes’. They look forward to having a thoughtful conversation on this topic that is so important to many families and clinicians alike. 

When: Wednesday, November 10, 2021
Time: 11 a.m. - 12 p.m. EST

Learning Objectives:  

1. Describe the subtleties of pain and irritability behaviours in children with neurological impairment. 

2. Describe how the pathway, which is core to the study, grew out of our clinical and research experience.   

3. Show how research and clinical work synergize in improving our understanding and care of children (and others) with complex conditions.

Speakers

Harold Siden 

Hal Siden is a Clinical Professor in the Department of Pediatrics at the University of British Columbia. He is also the Medical Director for Canuck Place Children's Hospice, and Division Head, Palliative Medicine at BC Children's Hospital, both located in Vancouver, British Columbia. Hal has expertise in pediatric palliative care and pain management. He has worked for 20 years with children living with complex conditions and life-threatening diseases. He has a particular interest in pain assessment and pain management. Pain is not well understood in children who are cognitively normal, and is very poorly understood in children with neurological conditions; finding new treatments and tools for assessing pain is therefore important and much of his research is focused in this area. 

Tim Oberlander

Tim Oberlander is a physician-scientist whose work bridges developmental neurosciences and community child health. As a clinician he manages complex pain in children and has a particular interest in managing pain in children/youth with developmental disabilities. As a researcher, his primary interest has been in studying how early life experiences shape stress/pain and related neurobehavioral outcomes during childhood. His work extends from molecular/genetic studies to population epidemiological studies that characterize neurodevelopmental pathways that reflect risk, resiliency and developmental plasticity. Outcome measures include studies of pain reactivity, attention, mood and executive functions across early childhood. The goal of Tim’s work is to understand how and why this happens.  

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Babies with congenital heart disease are at greater risk of suffering brain injury and impaired brain growth. There is a significant gap in understanding the physiologic changes in cardiovascular and cerebral hemodynamics. The combination of serial cardiovascular and brain MRI has provided an opportunity to study the relationship between prenatal and postnatal physiology and brain development. It is likely that an improved understanding of the physiology that results in abnormal cerebral metabolism will lead to identifying the risk factors for abnormal brain development in congenital heart disease.

When: Wednesday, October 6, 2021
Time: 11:00 a.m. - noon p.m. EST

Learning objectives:

1. Review the epidemiology and phenotype of neurodevelopmental outcomes in congenital heart disease

2. Discuss the putative aetiologies of abnormal brain development in CHD

3. Consider the role of abnormal cardiovascular physiology in this pathogenesis and review how this might be mitigated

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To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our first topic.

When: Thursday, September 23, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

Patient engagement throughout the research process takes effort and time. Incorporating a POR perspective in a graduate-student led project presents unique challenges that can be addressed by employing high-level strategies that promote stakeholder buy-in. During this session we will outline various approaches that can set the stage for productive and authentic engagement.

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Join us again this year as we host free webinars as part of our annual Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the first of our 2021 sessions:

When: Tuesday, August 3, 2021
Time: 1:00 p.m-2:00 p.m. EDT / 10:00-11:00 a.m. PDT

The session will focus on diversity, accessibility, and accommodation considerations when engaging youth in patient-oriented research. The major session objectives are:

• Defining inclusion, diversity, equity, and accessibility, and how these differ from accommodations

• Detailing the importance of providing accommodations when engaging youth-partners with lived experience

• Providing some advice to both researchers and youth-partners on best practices to encourage self-identification and disclosure

• Offering examples of where/how previous efforts in inclusion, diversity, equity, accessibility, and accommodations were successful or challenging based on the facilitators’ personal experiences

• Providing the audience an opportunity to ask questions related to inclusion, diversity, equity, accessibility, and accommodations in patient-oriented research that engages with youth-partners.

PRESENTERS:

• Logan Wong, National Youth Advisory Panel (NYAP) Chairperson, CHILD-BRIGHT Network

• Shafniya Kanagaratnam, NYAP Member, CHILD-BRIGHT Network

• Gillian Backlin, NYAP Member, CHILD-BRIGHT Network

• Julia Tesolin, Administrative Assistant, CHILD-BRIGHT Network

• Corinne Lalonde, Citizen Engagement Program Coordinator/Project Manager, CHILD-BRIGHT Network

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We are inviting all patients, families, trainees, staff, and faculty to attend our 2021 CHILD-BRIGHT Virtual Symposium: Let’s Dream Together as we Look Forward with Project Updates, Posters, and Questions. With this year's theme, we aim to feature updates from CHILD-BRIGHT research projects, exhibit posters from patient-oriented research projects investigating childhood brain-based neurodisability, and brainstorm solutions to patient engagement issues raised.

The Symposium will take place on May 26, 2021 and is scheduled for 11:00 a.m. - 2:30 p.m. EDT.

This is an ideal venue for all health professionals, researchers, and patients/families to share project updates in an interdisciplinary setting to highlight the extensive, ongoing, and innovative activities in patient-oriented research. Further, it is a great space in which to share patient-oriented research questions within the community and receive input.

Tune in to the Virtual Symposium

On May 26 as of 11 a.m. EDT, click on the link below to access the Virtual Symposium platform. Unsure how to navigate the platform? Consult the Navigation Guide here to help orient you to the platform.

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WHEN: THURSDAY, DECEMBER 10, 2020
TIME: 12:30 – 2:00 p.m. EST
9:30 – 11:00 a.m. PT
10:30 – 12 p.m. MT

In health research, institutional research ethics boards (REBs) ensure that clinical research studies adhere to ethical standards that protect participating research subjects. However, the term “research subject” is limiting and does not encompass the role of patient-partners as key collaborators who are engaged throughout the research process to align research outputs with priorities that are important to patients and families. Within CHILD-BRIGHT, our patient-partners include both children with a brain-based developmental disorder as well as their parents or informal caregivers. In this session we will explore the ethical considerations that apply to the relationship between researcher and patient-partner, as well as what role – if any – REBs can play in facilitating ethical engagement.

MODERATOR
Jennifer Johannesen

PANELISTS
Elizabeth Stephenson (chair, SickKids Research Ethics Board)
Franco Carnevale (ethicist)
Gillian Backlin (NYAP member)
Thierry Lacaze-Masmonteil (clinical researcher; director of MICYRN)
Antonia Palmer (parent, founder of Neuroblastoma Canada)

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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

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When: Wednesday, November 18, 2020
Time: 12:30 – 2:00 p.m. EST

CHILD-BRIGHT’s 2020 Policy Forum will take place virtually and will highlight the issues surrounding access to care and/or services (e.g. health care, education, recreation, etc.) that have been exacerbated by COVID-19 as experienced by children with brain-based developmental disabilities and their families. The forum, which will take place on November 18, will feature a multi-stakeholder panel and provide a platform to connect patients and families, service providers, policy makers, and researchers in open dialogue to explore what these gaps are, and possible strategies to improve access moving forward.

In preparation for the forum and ahead of our time together on November 18, we will engage participants in reflecting on their experiences that highlight various barriers that have impeded access to care and/or services. Please feel free to submit feedback via our survey by November 14. The feedback generated will be anonymously relayed to the assembled panelists in preparation for the Policy Forum.

On November 18, during the 90-minute Policy Forum, the panel will discuss the issues raised and explore possible solutions at the local and national level. Through a moderated Q&A period, audience members will also be able to interact with the panelists to further inform the discussion and explore the role that research evidence plays in supporting the policy decision-making process.

Ultimately, the goal of the Policy Forum is to mobilize knowledge to action to advance solutions to the highlighted challenges.

Panel members:

• Al Etmanski, Author and Advocate

• Arlene Reid, Winnipeg School Division Trustee

• Jeff Butler, Assistant Deputy Minister of Student Support and Field Services, Ontario Ministry of Education

• Lilian Kitcher, CHEO Parent Navigator

• Mai Luu Thuy, Pediatrician and Clinician-Scientist, CHU Sainte-Justine Research Center

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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.

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Materials referenced during the webinar

NYAP tip sheet: EN | FR
Examples of engagement of young people in research: PDF

Co-facilitated by members from CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) and CanChild’s Sibling Youth Advisory Council (SibYAC), this session will highlight various practical strategies that teams can use when engaging with youth and sibling partners on research projects. 

When: Monday, October 19, 2020
Time: 2:00 - 3:00 p.m. EDT | 11:00 a.m. - noon p.m. PDT

Session objectives include:

1. Defining what authentic engagement of youth in the research process looks like

2. Outlining some best practices for youth engagement

3. Providing a platform for facilitators to anecdotally reflect on and relay their experiences of being involved in research

4. Providing feedback to audience members who may be experiencing challenges engaging with youth members.

5. Offering examples of where/how previous efforts have successfully incorporated youth involvement.

FACILITATORS

• Gillian Backlin, National Youth Advisory Panel Member, CHILD-BRIGHT Network

• Hanae Davis, Postdoctoral Fellow and SibYAC Member

• Jessica Havens, SibYAC Member and Patient and Family Advisory Council (PFAC) for the CHILD-BRIGHT Network READYorNot Brain-Based Disabilities Project

• Linda Nguyen, PhD Candidate and Graduate Trainee for the CHILD-BRIGHT Network READYorNot Brain-Based Disabilities Project, and SibYAC Member

• Samantha Bellefeuille, SibYAC Member

• Corinne Lalonde, Citizen Engagement Program Coordinator, CHILD-BRIGHT Network