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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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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.

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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 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.