Research Roundtable Sessions

"Research gives us hope!"

A parent shared this statement during an initial planning meeting for Family Engagement Day, planting the seed for our Research Roundtable theme!

The afternoon of Family Engagement Day will include lively roundtable discussions focused on research as it relates to this moving concept. The purpose of this session is to foster a dynamic, multi-directional flow of ideas among families, youth, community representatives, researchers and students.

Each research group discussion will be co-facilitated by a family member or youth. Each session will be one hour, and all attendees will have the opportunity to attend two discussions during the day.

Discussions will include a short research presentation (10 minutes) and the opportunity for participants to ask and answer a series of pre-established questions related to the theme of “Research gives us hope”. For example, how do family attendees see your research relating to their hopes for the future? Where do you hope your research will lead? Where do families hope this research will lead? How do families hope to learn more about this research? 

Session Topics

1) Secret Agent Society - Operation Regulation: An emotion regulation intervention for youth with ASD

Facilitator: Priscilla Burnham Riosa

Mental health problems are common among youth with ASD and difficulties managing emotional experiences may contribute to these issues. There is evidence that cognitive behaviour therapy can address difficulties in anxiety, but often youth struggle with a mix of emotions, including anger and sadness. Because emotion regulation deficits are central to many emotional and behavioural problems, we wanted to see if we could target broader emotion regulation deficits using a mindfulness-based cognitive behavioural therapy program. The purpose of this round table discussion is to review the results of our ongoing research trial of the Secret Agent Society - Operation Regulation, a spy-themed intervention for youth with ASD 8-12 years of age, aimed at improving their emotion regulation, and to gain feedback from families about the project.

2) Grandparents and Childhood Disability 

Facilitator: Radwa Elsharawi

The resilience and coping abilities of parents of children with disability are known to be important predictors of the child’s development and progress. The support of grandparents is an important resource that is often utilized; however, the role of grandparents is largely overlooked in previous research. Our first step is to review what is currently known about grandparents of children with disability and our ultimate goal is to provide an opportunity to promote the recognition of the role of grandparents by healthcare professionals and their inclusion in support programs.

3) Enhancing Parent Engagement and Participation in Occupational Therapy Services using the Partnering For Change Service Delivery Model

Facilitator: Jennifer Kennedy

Partnering for Change (P4C) is the name of an innovative model for delivering rehabilitation services to children in schools. This model focuses on relationship building between students, parents, teachers and therapists, and building the capacity of educators and parents by problem-solving together, identifying and demonstrating strategies that enable successful student participation and then explaining how, why, and when particular strategies work. While P4C has been highly successful in eliminating wait lists, providing timely service to children, and building relationships with educators, parental involvement was more limited and is an area that needs work. We are looking for input from families concerning possible barriers and facilitators to their engagement and participation in the therapy when it is provided in school settings.   

4) Development of an inventory of goals in non-ambulatory children and adolescents with cerebral palsy treated with botulinum toxin A

Facilitator: Linda Nguyen

Children and adolescents with cerebral palsy often receive botulinum toxin A treatment to reduce muscle tone. It is important to identify meaningful goals in order to assess the effectiveness of this treatment. We believe that families have valuable contributions to share during the goal setting process with healthcare professionals. We would like to understand what kinds of goals are relevant and meaningful to families in the context of botulinum toxin treatment, what information or resources would families find helpful for goal setting. We are proposing creating an inventory of goals that could be used by families and the supportive healthcare professionals could facilitate the goal setting discussion.

5) Educators' Experiences: How Job-embedded Coaching can Facilitate an Inclusive Classroom

Facilitator: Kathy Wlodarczyk

According to the American Psychiatric Association (2013) approximately 10% of school–aged children have a neurodevelopmental disability. Although many students receive support, others are unidentified and experience challenges that interfere with academic and social participation. Canadian educational policy advises that all students receive appropriate specialised instruction in an inclusive classroom with age–related peers. Two independent research projects (Partnering for Change & Learning for All) were delivered in local schools to facilitate with identifying students who need support and educating educators about how to better support students. This research examines educator's experiences being coached by either an occupational therapist or a special education teacher in the classroom setting to better understand the challenges students face, and adjust teaching practice to better meet students' needs.

6) Physical activity and cardiovascular health: what should I know as I grow older?

Facilitator: Patrick McPhee

Children, youth and adults with cerebral palsy (CP) have lower levels of physical activity than the general population. Physical activity is thought to have a positive effect on quality of life for persons with CP. Conversely, lower levels of physical activity may be associated with an increased risk of health problems later in life. My research within CanChild aims at further understanding the relationship between physical activity and cardiovascular health in persons with CP as they grow older.

7) Evaluating positive outcomes and well-being from participation in sports and recreational activities for children and youth with developmental disabilities

Facilitator: Vivian Lee

Traditional interventions for children and youth with developmental disabilities (DD), are costly and often require long waits. Recently, families have turned to community-based sports and recreational programs to provide their children with some social, emotional, and physical health-related support. However, little is known about the efficacy of participation in sports and recreational activities on positive outcomes. Additionally, it is yet unclear what outcome variables are of most interest to families. The purpose of this study is to work with families to design an evaluation process that investigates the efficacy and outcomes associated with participation in community-based sports and recreational programs.

8) Preparing high schoolers with ASD for the workforce: a community-academic partnership

Facilitator: Briano Di Rezze

The majority of adults with ASD are unemployed or underemployed. Early work experiences are important for future employment success. McMaster University has a wide range of jobs on campus that could provide different opportunities for youth to have meaningful work experiences. A current partnership with researchers from McMaster (CanChild and MacART) with Woodview Mental Health and Autism Services and Hamilton-Wentworth District School Board has been awarded funding for a pilot program that integrates work experiences at McMaster and peer-supported training for teenagers with ASD prior to their co-op education.

9) Liberi Exergames - Action-based Exergames for Children with Cerebral Palsy

Facilitator: Alex MacIntosh

The Liberi Exergame are interactive, multi-player exercise based video games that incorporate the pedaling of a recumbent bicycle into gameplay. The aim of the game is to bring a sense of fun and social engagement to those with motor disabilities such as Cerebral Palsy and to promote improvements in physical fitness and cardiovascular health. 

10) Making your own way: New knowledge from the perspective of parents of children with autism navigating intervention

Facilitator: Stephen Gentles

How do Ontario parents of children with autism make their own way to the interventions they feel are needed to address the concerns they have related to autism? Making your own way is a process that begins before diagnosis and can stretch over a parent’s lifetime. In a recent qualitative study, the researcher interviewed 32 parents and 9 professionals to document the initial years of this process from the parent’s perspective. Discover some highlights of this research, and contribute your own ideas on how to translate the findings into change that is meaningful to future parents who undergo this journey.

11) Family-Researcher Collaboration: Bringing the Family's Voice to Research

Facilitators: Bob Palisano & Tina Hjorngaard

Parents and families are key stakeholders in research related to children and youth with disabilities. Although family-centered services are recognized as best practice, advocacy for engaging families in research is still emerging. Including parents on the research team may better address consumer priorities, ensure interventions are feasible and acceptable to children and families, and lead to dissemination of findings in ways that enhance use by families and practitioners. Family-researcher collaboration, however, is not without challenges. The facilitators will: a) provide background knowledge on including parent stakeholders as members of the research team, b) share their research team’s experiences, and d) engage participants in discussion of challenges to family-researcher collaboration and solutions to challenges. 

12) Parents’ participation and engagement in children’s rehabilitation services

Facilitator: Michelle Phoenix

This work explores how parents view participation and engagement in their child’s therapy (occupational, physical and speech therapy) services.  Organization, service provider and family factors that promote or decrease service use are examined. The policy and procedure documents related to non-contact or missed appointments from children’s treatment centres in Ontario are used to understand the rehabilitation context and stimulate discussion.

13) The intersection of physical and mental health: what needs to be done?

Facilitator: Mark Ferro

Young people with chronic physical health conditions typically have more emotional and behavioural problems compared to others their age. Research has identified some biological and psychosocial processes that link physical and mental health; however, little is known about what can be done to best support positive mental health in young people with chronic physical health conditions. 

14) The WHO’s ICF: Introducing a New Tool for Parents of Children with Cerebral Palsy 

Facilitator: Pranay Jindal

This project is being developed by our research group to explain to parents “What is the ICF?”, and “How can parents use the ICF ideas to engage more effectively in the management of their child’s Cerebral Palsy?” We have developed and will show 5 video modules to introduce the components of ICF. The presentation will demonstrate and discuss these videos with people. 

15) Distance training and education for families raising children with Fetal Alcohol Spectrum Disorder (FASD): Strongest Families FASD

Facilitator: James Reynolds

Although considerable research and clinical resources have been put toward increasing diagnostic capacity for FASD, the need for services and supports for diagnosed children and their families remains largely unmet.

Parents and caregivers of children with FASD are often confronted with significant behavioural challenges without adequate resources and information to help them manage these symptoms, a problem that is compounded in rural communities, where access to specialized healthcare programs is extremely limited.

Parent and caregivers of children diagnosed with FASD who have significant behavioural challenges, ages 4-12, are currently being recruited into a two-arm randomized trial. The trial is designed to evaluate the effectiveness of the web-based Strongest Families FASD parenting intervention on child behaviour and caregiver distress, compared to a control group receiving access to a static resource webpage (i.e., a list of FASD specific websites, readings, videos and organizations).