Family Research Rounds Videos

Turning Lived Experience into Research For A Book

After 20 years of being a full-time complex care parent to her son Nicholas, Donna Thomson embarked on a research journey to better understand the meaning of a life devoted to caring. Two years of intensive research led to the publication of her book The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving and later, another co-written book with professor and researcher Dr. Zachary White: The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver. Join Donna and Rachel Martens as they reflect on what it means to become a citizen-researcher. Donna Thomson is a caregiver, author and educator. She is a co-designer and co-instructor of the Family Engagement in Research course as well as the FER Leadership Academy at CanChild. She also facilitates the free online course, Caregiving Essentials at McMaster Continuing Education.

Scootering is More Than Fun - A Clinical Research Story

Scootering is a functional activity that is feasible for families, can promote fitness, and provide fun with friends - to contribute to future health and well-being. Join us to discuss how fun activities in everyday life can promote therapy goals! 

Marilyn Wright is a CanChild Clinical Consultant and an Assistant Clinical Professor at the School of Rehabilitation Sciences, McMaster University, and a physiotherapist at McMaster Children's Hospital.

Weathering the Storm: The Complex Issue of Aggression Toward Families / Caregivers in Childhood and Adolescence (AFCCA)

AFCCA’ describes a pattern of behaviour characterized by aggressive behaviour toward family members or other caregivers, causing significant harm (physical and/or psychological) to the child/adolescent, the person(s) the behaviour is directed toward, and witnessing family members. AFCCA is frequently unreported and not yet widely discussed, as families often experience stigma and shame when seeking help. Join Maude Champagne and Tracy Moisan as they share research highlighting the breadth of this issue in Canada followed by an overview of two ground-breaking Canadian initiatives developed to improve outcomes for families experiencing AFCCA.

How can we influence policy to make a difference for Canadians with disabilities? Lessons learned from a research study on inclusivity of COVID-19 policies across Canada 

In this talk, we will draw from our recent work to provide an overview of the current state of disability policy in Canada and tangible strategies for influencing policy through advocacy. We will share findings from our research, which explored the inclusivity of COVID-19 policies in Canada and uncovered experiences of youth with disabilities and their families both before and during the COVID-19 pandemic. We will also share the ways in which the results of our research can be translated into meaningful policy changes that can improve support for individuals with disabilities across Canada. 

• Brittany Finlay is a Research Associate with the Disability Policy Research Program at the School of Public Policy. Her work primarily focuses on analyzing the design and delivery of disability policy in Canada. 

• Jennifer Zwicker is the Director of Health Policy at the School of Public Policy and an Associate Professor with the Faculty of Kinesiology at the University of Calgary. She is also a Canada Research Chair (II) in Disability Policy for Children and Youth and the Deputy Scientific Officer for Kids Brain Health Network.

• Keiko Shikako is an Associate Professor with the School of Physical and Occupational Therapy at McGill University. She is also a Canada Research Chair in Childhood Disabilities: Participation and Knowledge Translation.

What do today's parents want and need from healthcare services?

The ways in which healthcare professionals interact with, and provide services to, families affect parents’ experiences with the healthcare sector. In 1996 researchers at CanChild developed a model of family-centred service and a tool (called Measure of Processes of Care, or MPOC) to measure parents’ experiences with the delivery of health services. However, since then much has changed in healthcare. In this study we are learning what today’s parents want, need and expect from healthcare services. During this presentation we will be sharing what we heard from parents about how service providers can best meet the needs of today's families. 

Dr. Peter Rosenbaum is a developmental pediatrician at McMaster University and co-founder of CanChild Centre for Childhood Disability Research, as well as one of the developers of the original MPOC tool. 

Ms. Elizabeth Chambers is a parent, teacher and advocate

Life Beyond Services: Rebalancing natural and formal supports for people with disabilities and their families

The time is ripe in Canada for a fundamental transformation in the relationship between formal and natural support in disability that is rooted in the understanding that both kinds of support are critical. The Life Beyond Services project seeks to understand how we might configure a system of care for persons with developmental disabilities that recognizes the interdependence of formal and natural support and the centrality of family and other natural supports found within one’s community. This presentation will share how the project team has initially structured this research project and will share some of our initial findings around understanding disability-related support in Canada.

Heather Plyley (She/Her/Hers) is a PhD student in the Department of Sociology at Queen’s University. Her research is situated within the interdisciplinary fields of Fat Studies and Disability Studies, and she is a research assistant on the Life Beyond Services project. 

Donna Thomson is the mother of two grown children, one of whom has multiple disabilities. She is an author, instructor at McMaster University and parent partner on the research project, Life Beyond Services.

Heather Aldersey is an Associate Professor in the School of Rehabilitation Therapy at Queen’s University who studies family support and community inclusion globally. She is academic team member on the Life Beyond Services project.

Enhancing Caregiver Wellbeing: A Collaborative Acceptance and Commitment Training (ACT) Intervention

This talk will introduce the audience to a collaborative ACT intervention for family caregivers of people with neurodevelopmental disabilities. We will offer examples of ACT exercises and reflect on the importance of caregiver-clinician partnerships in service delivery, including its impact on caregiver participants.

Johanna Lake is a Clinician Scientist and Clinical Psychologist at the Azrieli Adult Neurodevelopmental Centre at CAMH. Lee Steel is the proud parent of two adult children. Her eldest son was diagnosed with a neurodevelopmental disability when he was a toddler 27 years ago. Lee is the Family Advisor at the Azrieli Adult Neurodevelopmental Centre at CAMH.

A brief history of accessible clothing 

This is an overview of accessible clothing designs that existed in the US and Canada from roughly 1950-1975.  It describes why this period was so important in the long history of disability and dress, yet remains largely unknown today.

Shared Decision-Making: Advancing decision-making research from a parent's perspective

Dr. Francine Buchanan will present her research on the decision-making processes of physicians and parents and how that research informed a new model of shared decision-making for children with medical complexity

Talking About Disability Rights for Children in Canada

There is often very little education on the status of disability rights for children in Canada. Since 2018, there have been a variety of initiatives attempting to move the needle when it comes to policy. This introductory session with Rachel Martens will highlight some of the work so far and share some resources.

Employment: the Gold Standard for Inclusion

Jennifer Crowson (Diversity & Inclusion Specialist) and Ingrid Muschta (Special Projects & Innovation Director) from the Ontario Disability Employment Network (ODEN) shared findings of their research for the Youth Success Strategy and discussed how to create an environment where competitive employment is seen a viable possibility and the natural progression for students who have a developmental disability once they leave the school system, similar to their peers without a disability.

So much to learn: Lessons families have taught me in clinical neuroscience research

Dr. Adam Kirton, a pediatric neurologist at Alberta Children's Hospital, shares the ways in which families have informed his work in clinical neuroscience research.

Using TikTok for Research

Rachel Martens, CanChild Research Engagement Strategist, hosted an informal chat about why TikTok (social media app) is an emerging space for disseminating research knowledge. She shared current best practices on TikTok and ways to use videos between social media channels.

Building Research Communities Through Social Media: Developing Trust While Building Stakeholder Capacity

Approaches to social media networking in research rarely consider the nuanced and meaningful nature of human connection. This can make for a daunting task when considering how to connect with people with lived experience. This is an informal conversation about best practices and approaches to engage stakeholders in research studies using social media.