Program
October 21, Saturday | Training Day 1
October 22, Sunday | Training Day 2 & Opening Ceremony (Evening)
| TIME (ET) | SESSION DETAILS |
|---|---|
| 8:00 am | Breakfast |
| 9:00 am | Exploring Family Voices: Youth Engagement Panel Speaker: Kelsey Seguin, Samantha Bellefeuille, Linda Nguyen, Amanda Doherty-Kirby Moderator: Samantha Noyek |
| 10:30 am | Break |
| 10:45 am | Exploring Entrepreneurship in FER and Leadership Speaker: Donna Thomson, Kristina Mangonon McGuire, Alicia Hilderley, Connie Putterman, Andrea Cross Moderator: Alice Soper |
| 12:00 pm | Lunch |
| 1:00 pm | Examples of Successful Commercialization Models Moderator: Jessica Hanson |
| 2:00 pm | Solutions Rooms: KBHN Training Program-Paving the Path Forward Moderator: Alexandra Minuk, Samantha Micsinszki |
| 3:00 pm | Break |
| 3:15 pm | Canadian Neurodevelopmental Research Training Platform (CanNRT) Speaker: Samantha Micsinszki, Michelle Phoenix, Konstandina Bakopanos, Ellie-Anna Minogianis, Mackenzie Salt |
| 4:30 pm | Registration Opens / Networking |
| 5:00 pm | Closing Remarks Speaker: Jennifer Zwicker, James Reynolds |
October 23, Monday | Conference Day 1
October 24, Tuesday | Conference Day 2
Speakers
David Plamondon
Spending each day using my privilege to create a better path for those coming behind me and creating equitable access to opportunities.
Donna Thomson
Donna Thomson is a caregiver, author and activist. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity.
Dr. Andrea Cross
Andrea is a postdoctoral fellow at CanChild Centre for Childhood Disability Research and the Department of Pediatrics and an Assistant Professor (part-time) in the School of Rehabilitation Science at McMaster University. Patient-Oriented Research (POR) and Implementation Science are foundational to her program of research.
Dr. Argel Aguilar Valles
Dr. Argel Aguilar-Valles received his Ph.D. in Neuroscience from McGill University in 2011. He completed two postdoctoral fellowships at the Scripps Research Institute (Florida Campus) in 2012 and at McGill University in 2018.
Dr. Carmen Rasmussen
Carmen Rasmussen is an Associate Professor in the Department of Pediatrics at the University of Alberta. Her research is focused on cognitive and behavioural development among children with neurodevelopmental difficulties. She also studies the effectiveness of cognitive interventions for children.
Dr. Chaya Kulkarni
Dr. Chaya Kulkarni is the Director of Infant Mental Health Promotion (IMHP) at The Hospital for Sick Children (SickKids). IEMHP is a national organization which improves outcomes across the lifespan through translating and promoting the science of early mental health into practice with families during pregnancy, infancy, and early childhood.
Dr. James Reynolds
Dr. James Reynolds is a graduate of Queen’s University (B.Sc., 1982, Ph.D, 1987). His thesis research investigated the neurochemical mechanisms underlying heavy metal toxicity. Subsequently, he completed postdoctoral training at the Addiction Research Foundation and the University of Toronto.
Jeffrey McCrossin
Jeffrey McCrossin is a Ph.D. candidate at the School of Social Work at McGill University where he also completed an M.Sc.(A.) in Couple and Family Therapy (2019).
Dr. Jennifer Zwicker
With broad interests in the impact of health and social policy on health outcomes, Dr. Zwicker’s recent research utilizes economic evaluation and policy analysis to assess interventions and inform policy around the allocation of funding, services and supports for children and youth with developmental disabilities and their families.
Dr. Jonathan Lai
Jonathan Lai (MSc, PhD) is the Executive Director at the Autism Alliance of Canada. He holds an Adjunct Faculty Position in Health Services Research at the Institute of Health Policy, Management and Evaluation (IHPME) in the Dalla Lana School of Public Health at the University of Toronto.
Dr. Michelle Phoenix
Dr. Phoenix is an Assistant Professor in the School of Rehabilitation Science at McMaster University, a CanChild Scientist and an Adjunct Scientist at Holland Bloorview Kids Rehabilitation Hospital.
Dr. Penny Corkum
Dr. Corkum is a Professor in the Department of Psychology and Neuroscience at Dalhousie University. She is cross-appointed in Psychiatry as well as being on Scientific Staff at IWK Health Centre and Capital District Health Authority.
Dr. Peter Rosenbaum
Peter Rosenbaum, MD, FRCP(C), DSc (HC) graduated in medicine from McGill University in Montreal, Canada in 1967, and undertook residency training at Toronto’s Hospital for Sick Children (1968-70) and a Research Fellowship at the Wolfson Centre, Institute of Child Health, University of London (1970-73).
Dr. Ryan D’Arcy
Dr. Ryan C.N. D’Arcy, Ph.D., Eng.L., is a neuroscientist and entrepreneur. He is the co-founder, President, and Chief Scientific Officer of HealthTech Connex a brain health technology company. He also holds Professorship appointments at Simon Fraser University and the University of British Columbia, where he serves as a BC Leadership Chair in neuroimaging and neurotechnology.
Dr. Samantha Micsinszki
Samantha Micsinszki is a registered nurse with a PhD from the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto. Her doctoral work examined factors associated with sleep quality in parents of children with Autism Spectrum Disorder.
Dr. Sarah J. Macoun
Sarah is a Registered Psychologist and Associate Professor in Clinical Psychology (Pediatric Neuropsychology) at the University of Victoria (UVic) with expertise in cognitive rehabilitation, neuropsychological intervention/assessment, and neurodevelopmental disabilities.
Dr. Tatiana Ogourtsova
Dr. Ogourtsova is an occupational therapist with MSc and PhD in neurorehabilitation and two postdoctoral trainings in neurodevelopmental disabilities/pediatrics.
Dr. Vivian Lee
Dr. Vivian Lee, Ph.D. is a Postdoctoral Fellow working with Dr. Weiss in the Department of Psychology at York University. Her research focuses on the emotional and mental health of children and youth with autism and other intellectual disabilities.
Elizabeth Chambers
Elizabeth Chambers, Parent Partner
Ellie-Anna Minogianis
Ellie-Anna Minogianis, Training Program Manager, Canadian Neurodevelopmental Research Training Platform
Filomena Pietrangelo
Filomena Pietrangelo, Physical Therapist, CRIR-JRH Feil and Oberfeld Research Centre CISSS Laval
Dr. Genevieve Currie
Dr. Genevieve Currie is a family partner researcher, and nurse researcher focused on families’ experiences in caring for children with neurodevelopmental disorders (NDDs), as well as family engagement in health care and research.
Geoff Pradella
Geoff has 25 years of international experience in business, government, non-profits and higher education, complemented by an extensive track record of community service and volunteer board engagements.
Greta Heathcote
Greta Heathcote, Family Research Partner, University of Calgary
Training Days - October 21 & 22
October 21 & 22 | Training Days
Please note that this registration fee only applies to the Training Days event scheduled for October 21-22. It does not include registration for the Conference Days happening from the Opening Ceremony on the evening of October 22 to 24. Participants who wish to attend the Conference Days must also select the Conference Day fees in addition to the Trainee Days fee. Included in-person event experiences are: participation to all trainee day programming sessions scheduled for October 21 and 22; catered breakfast, lunch, and networking breaks on October 21 and 22; and participation to all trainee planned social events.
Opening Remarks - October 21
October 21, Saturday | Opening Remarks
Welcome to KBHN Training Days. Join us to explore the 2-day schedule and the invited speakers.
KBHN National Training Program Evaluation: Where We Are and Where We Are Going - October 21
October 21, Saturday | KBHN National Training Program Evaluation: Where We Are and Where We Are Going
Join us to explore the KBHN National Training Program and the recent findings from its strategic analysis. The presenters, including current KBHN trainees and persons with lived experience, will draw on the results of an environmental scan, survey, and semi-structured interviews to offer in-depth insight into the training program, including strengths and areas of need. As part of the presentation, attendees will have the opportunity to reflect on their own experiences with the KBHN training program, and discuss how to ensure opportunities are aligned with trainees’ diverse needs.
Advancing Equity, Diversity, Inclusion, and Justice via Relationships and Research - October 21
October 21, Saturday | Advancing Equity, Diversity, Inclusion, and Justice via Relationships and Research
Michelle Phoenix, Assistant Profession in the School of Rehabilitation Science (SRS) and CanChild Scientist at McMaster University is working to advance equity, diversity, inclusion and justice through her role as Co-Chair of the SRS Anti-Racism, Anti-Bias, Anti-Oppression Committee. Michelle will share research, reflection and resources about her experiences integrating EDIJ into education, research and service. She will provide opportunities for dialogue, reflection and planning to encourage everyone to advance EDIJ in their own work and life.
Supporting Equity, Diversity, Inclusion and Decolonization - October 21
October 21, Saturday | Supporting Equity, Diversity, Inclusion and Decolonization
Join David Plamondon, Senior Advisor of Indigenous Relations and Initiatives to learn about how Mitacs is actively working to create more equitable access to the Innovation and Research Ecosystem for Indigenous Peoples and other equity-deserving groups across Canada and abroad. This presentation will include a brief overview of the model of intern co-funding support that Mitacs provides, engaging Indigenous Peoples in research and innovation projects, and the newly launched Inclusive Innovation Action Plan.
Evidence-Informed Policy for Children and Youth with Neurodevelopmental Disabilities - October 21
October 21, Saturday | Evidence-Informed Policy for Children and Youth with Neurodevelopmental Disabilities
This workshop aims to discuss approaches for bridging the gap between research and policy, focusing on improving outcomes for children with neurodevelopmental disabilities and their families. Recognizing the importance of evidence-based approaches, the workshop will discuss policy analysis approaches and strategies for developing inclusive and effective policy documents. Participants will gain insight into crafting policy documents to communicate key priorities and research to decision-makers. Through interactive discussions, the workshop will not only foster a deeper understanding of the complex challenges involved when translating research into policy, but also provide attendees the tools to develop their own policy communications.
Participants will gain a deeper understanding of the intersection between research and policy impacting children and youth with neurodevelopmental disabilities. They will be equipped with actionable tools and strategies to influence policy decisions and foster collaboration with decision-makers. Ultimately, the workshop will encourage the exchange of ideas and contribute to the development of more informed, inclusive, and effective policy development.
Networking BINGO break - October 21
October 21, Saturday | Networking BINGO break
Take your conference networking to the next level with the exciting Networking Bingo Break! The bingo card contains fun challenges and conversation prompts that will break the ice and spark discussions. Get ready to dive into some fun, engaging conversations with other trainees. From industry insights to personal anecdotes, you’ll be amazed at how quickly you connect with fellow attendees. Get ready to Bingo your way to meaningful connections and win some exciting prizes to take home!
Implementation Science Skills - October 21
October 21, Saturday | Implementation Science Skills
During this implementation science workshop, we will explore pathways we can use to create change. We will unpack barriers/facilitators and then map them to a framework to select effective change strategies. We will delve into the importance of collaboration and trust in this work. This highly interactive workshops will help you apply implementation science concepts to neurodevelopment disabilities research.
Exploring Family Voices: Youth Engagement Panel - October 22
October 22, Sunday | Exploring Family Voices: Youth Engagement Panel
This panel explores youth engagement from the different perspectives of family members, including siblings and parents. We highlight examples of youth engagement projects, including: i) the Youth Engagement in Research (@youth_in_research) Instagram account, ii) COVID time capsule, iii) Youth Engagement in Research (YER) project, iv) Sibling Youth Advisory Council (SibYAC) and sibling studies; and v) CHILD-BRIGHT’s National Youth Advisory Panel (NYAP); vi) a study about the journeys of fathers of children with cerebral palsy. Youth with lived experience were engaged as collaborators, co-researchers and/or leaders in all projects.
Exploring Entrepreneurship in FER and Leadership - October 22
October 22, Sunday | Exploring Entrepreneurship in FER and Leadership
Entrepreneurship is a critical competency for leaders in patient-oriented research, but what exactly do we mean by ‘entrepreneurship’ and why is it so important? In this session, FER Course and Leadership Academy co-developers Donna Thomson, Connie Putterman, and Andrea Cross will introduce leadership in the context of patient-oriented research, focusing on moving beyond traditional leadership and building competencies in areas such as compassion, communication, advocacy, self-awareness, and entrepreneurship. Using a real-life example of leadership in practice, FER graduates Kristina McGuire and Alicia Hilderley will show us what this looks like within their work and what they are doing to advocate for FER in their organization through the development of FERN (Family Engagement in Research Network) at the University of Calgary. They share reflections on the skills they’ve honed and what’s been valuable to them along this journey of implementing FER in practice. Learners will be invited to ask questions and explore what entrepreneurship means in their own leadership spaces.
Examples of Successful Commercialization Models - October 22
October 22, Sunday | Examples of Successful Commercialization Models
Unfortunately, there isn’t one path that promises successful commercialization. There are many factors to be considered, and the approach to each will vary based on your product, your team, and your goals – and that’s just the start. Dave Thomas will present an overview of a few approaches, providing key tips and ways to streamline your efforts to provide the best chance of getting your innovation into the hands of those who need it.
Solutions Rooms: KBHN Training Program-Paving the Path Forward - October 22
October 22, Sunday | Solutions Rooms: KBHN Training Program-Paving the Path Forward
This session will follow up on the KBHN National Training Program Evaluation presentation, providing attendees with an opportunity for in-depth discussion about key findings. In small groups, attendees will receive a set of findings from the program evaluation to discuss with the goal of generating recommendations relative to the future of the training program. Attendees will be able to submit their recommendations along with any other insights they have about the training program for inclusion in the final program evaluation report.
Canadian Neurodevelopmental Research Training Platform (CanNRT) - October 22
October 22, Sunday | Canadian Neurodevelopmental Research Training Platform (CanNRT)
CanNRT is a collaborative training environment that supports sustainable and equitable pathways for Canadian early career researchers and trainees through cross-sector learning, mentorship and connectivity. Come learn about the Platform and interact with current Fellows, faculty and members of our leadership groups. Drinks and canapés will be served during this networking event. Pre-registration is required.
Conference Day - October 23 & 24
October 23 & 24 | Conference Days
Included in-person event experiences are access to: the Opening Ceremony; to all sessions and activities in the conference program for October 23 and 24; Poster Sessions; sponsor and exhibitor booths; event mobile App; catered breakfast, lunch, and networking breaks; on demand session video recordings post event.
Virtual Conference Days
Included virtual event experiences are: livestream access to all sessions held in the main Ballroom for October 23 and 24; access to virtual posters; access to sponsor and exhibitor virtual booths; access to virtual event platform; access to on demand session video recordings post event.
Clinician-Caregiver Collaboration in Interventions for Caregivers - October 23
October 23 | Clinician-Caregiver Collaboration in Interventions for Caregivers
There is a dearth of interventions to support the wellbeing of family caregivers of individuals with neurodevelopmental disorders, who often have the responsibility of not only providing direct care for their family member, but also play various roles, including carrying out interventions at home or being an advocate outside the home. Our team has been studying the use of Acceptance and Commitment Training (ACT), a mindfulness and values-based intervention, to support caregiver well being. One of the unique features of our program is the collaboration of clinicians and caregivers in the co-design and co-delivery of the intervention. We have also developed a comprehensive program to train and support clinician and caregiver facilitators.
In this panel, we will explore: 1) the benefits and challenges of clinician and caregiver collaboration in the design and delivery of the intervention; and 2) strategies, best practices and resources/policies to support, optimize and sustain clinician and caregiver partnerships. Our panelists will involve diverse perspectives, including organizational leadership, caregiver facilitators, clinician facilitators, ACT coaches and researchers, with varying degrees of experience and expertise with the intervention. As our model has been highly valued by clinicians, caregivers, and recipients of the intervention, we believe this will have relevance and implications to other caregiver interventions, training, and research initiatives.
Indigenous Communities Promoting and Supporting Infant and Early Mental Health through Community-Led Models
October 23 | Indigenous Communities Promoting and Supporting Infant and Early Mental Health through Community-Led Models
Through a collaboration between Indigenous communities and Infant and Early Mental Health Promotion (IEMHP), innovative models for strengthening knowledge and skill specific to infant and early mental health were created. These models of capacity-building engage both community members and professionals to collectively support young children. Unique to these models is the embedding of Indigenous culture which guided content, structure and delivery of all elements. The programs aim to build knowledge and understanding about infant and early mental health and draw attention to the important role both professionals and non-professionals play in supporting the wellbeing of young children. The initiatives focus on the strengths of service providers, families and communities while building an awareness that everyone has something valuable to contribute in supporting future generations. This session examines the collaborative process used to build relationships and support the integration of the science of infant and early mental health through an Indigenous lens. Participants will hear about the importance of engaging both professionals and community members to create a system of change. Two innovative programs will be explored:
- Nurturing the Seed – A program providing professionals with training on infant and early mental health including the use of developmental support plans that are responsive to a child’s needs in a family-friendly and culturally-informed way.
- Natural Helpers – An 8-week hybrid program designed for all community members to enhance knowledge about infant and early mental health and build community capacity through increased interest and commitment to better support very young children.
These initiatives demonstrate the benefits of sharing the science of infant and early mental health with ALL members of a community and doing so through an Indigenous lens. We will highlight preliminary evaluation results and plans for future evaluation strategies based on learnings from the projects to date.
Navigating Childhood Disability Policy in Canada: Discussing perspectives from Families and Case Law
October 23 | Navigating Childhood Disability Policy in Canada: Discussing perspectives from Families and Case Law
As a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), Canada has committed to protecting the rights of all Canadians with disabilities. Despite this commitment, Canadian children and youth with disabilities often experience barriers to participation in society resulting in higher rates of poor physical and mental health outcomes, lower educational achievement and fewer economic opportunities than youth without disabilities. Parents and caregivers of youth with disabilities also face a high burden of care, resulting in financial and social challenges, and increased parental stress. The care needs of a disabled child often require that family members forgo paid employment outside the home.
This symposium will provide a short overview of disability policy in Canada including laws (such as the Accessible Canada Act, Bill C-22, and Bill C-35), plans of action, and provision of government-funded disability programs by health, education, social services, and economic ministries. The panel will then discuss ways in which disability policy falls short and the practical realities and challenges experienced by children and youth with disabilities, their families, and care teams. Our discussion will center on two main topics:
- Barriers experienced by parents/caregivers when applying for and accessing government-funded disability programs, sourced from interviews with families
- Implications of current disability policy failing to adequately address the consequences of unpaid carework provided by parents/caregivers. The presumption in most provincial programs that family caregivers ought to be unpaid stands in contrast to personal injury damages awards and public insurance benefits, such as no-fault automobile insurance, which fully reimburse family carework. This means that children born able-bodied who become disabled by an injury are more likely to have access to funding for family caregivers than children born with their disabilities.
We will conclude with a discussion of our recommendations for solutions to these issues that can help to ensure children and youth with disabilities and their families are able to receive the support they require.
Building Systems, Breaking Down Silos: Intersectoral collaboration to support access to care for infants, children and their families
October 23 | Building Systems, Breaking Down Silos: Intersectoral collaboration to support access to care for infants, children and their families
Infancy to early childhood is critical for healthy brain and social-emotional development and an optimal time to identify and address early signs of mental health issues. However, access to care is often complicated and barriers can lead to inequitable care access, delivery and wellness outcomes for infants and young children. Care pathways help families and service providers by taking the guesswork out of what services are available and how to access them to ensure early intervention.
The Knowledge Institute on Child and Youth Mental Health and Addictions and Infant and Early Mental Health Promotion are working with communities across Ontario to strengthen cross-sector partnerships that support streamlined pathways for infant and early mental health care.We will share outcomes from our pilot project where we partnered with cross-sector infant and early mental health service providers to create, implement and evaluate mental health care pathways for prenatal to age six.
Through facilitated activities, we will showcase our new pathway resource guide: “From building blocks to care pathways: Working together to support access to infant and early mental health care.” This guide leverages the latest evidence on how to plan, develop and implement care pathways with a focus on resources that build on community strengths and support families in accessing the right care in a timely manner. We will outline the processes and considerations that all communities should integrate into planning to sustain care pathways for effective and coordinated infant and child mental health services.
Poster Session 1
October 23 | Poster Session 1
Join our poster event on 2 days to learn about the most recent research to support children with neurodevelopmental disabilities and their families.
All attendees are invited to share their research and network at the Poster Session. Posters were selected from abstract submissions based on relevance to early identification, early intervention and effective treatment and family support related to neurodevelopmental disorders.
Neurodevelopmental disorders (NDDs) such as autism spectrum disorder (ASD), and attention deficit hyperactivity disorder (ADHD), are characterized by diverse cognitive deficits that vary within and between diagnoses. Early identification of cognitive deficits is fundamental to improving academic, emotional and behavioural outcomes in children. Creyos has pioneered online cognitive testing in adults, providing information on a number of cognitive domains including working memory, attention, verbal abilities, and reasoning. We developed audiovisual instructions to make these tasks more suitable to children with and without NDDs. We then implemented the tasks in an online sample of children ages 4-16 with ADHD (n = 83), ASD (n = 37), and typically developing (TD) children (n = 86), to determine whether unique cognitive profiles would emerge. Results revealed four tasks reflective of working memory and attentional processes, which correctly classified approximately 53-60% of each diagnostic group. Group differences were largely in-line with our current understanding of cognitive impairments in NDDs. The ADHD group had lower scores on attentional tasks, while the ASD group had lower scores on reasoning and more attempts across all tasks, compared to the TD group. Results suggest that the Creyos task battery is feasible to implement in these populations of children.
BACKGROUND: Growing access to sophisticated computational technology in research and healthcare settings has facilitated the use of powerful computer science techniques, including machine learning. Though more common in clinical and research fields, research into autism spectrum disorder (ASD) has yet to fully leverage this technology.
OBJECTIVE: (1) Generation of supervised machine learning classifiers using 12-month infant sibling data from two Canadian longitudinal studies (n=465; n=90), and (2) assessment of classifier performance at predicting 36-month ASD diagnosis.
Methods: Supervised machine learning classifiers using logistic regression and support vector machines were generated in R/RStudio employed different combinations of demographic and 12-month data from the Autism Observation Scale for Infants and the Mullen Scales of Early Learning. Factor analysis (informed by principal axis parallel analysis) was used to reduce item-level AOSI data dimensionality during modelling to mitigate model overfitting. Classifier performance was assessed by their ability to predict 36-month ASD diagnosis in participants from two Canadian cohort studies.
RESULTS: Machine learning classifiers had fair performance. The best performing models had an accuracy of 76-77%, with Area Under the Curve (AUC) ranging between 0.73 and 0.76. While model sensitivity was extremely poor (0-0.19), specificity was excellent (0.94-1.0).
CONCLUSION: Though best-performing classifiers performed below recommended levels for early screening, their performance was moderately improved relative to those generated by previous studies. Further exploration into feature selection, extraction or inclusion of 12-month data is recommended. This may facilitate refinement of machine learning models capable of predicting ASD at 36-months.
Background: Mobile health (mHealth) is an emerging field that could significantly reduce health inequities by providing more accessible
services for children with disabilities. Many mobile applications (mobile apps) incorporate gamification elements such as feedback, points, and stories to increase engagement and motivation; however, little is known about the possible uses and benefits of mobile-based gamification in mobile apps for children with disabilities.
Objective: This scoping review aimed to identify and synthesize the existing evidence on the use of gamification in mobile apps for children with disabilities.
Methods: We searched MEDLINE, PsycINFO, CINAHL, Embase, the ACM Digital Library, and IEEE Xplore to identify papers published between 2008 and 2022.
Results: Thirty-two studies reporting on 29 unique gamified mobile apps were included. The gamification strategies that provided fun and playfulness, feedback on performance, and reinforcement were frequently used; social connectivity was less commonly used as a gamification strategy. Most mobile apps developed for children with disabilities used few gamification tactics. Two main reasons for integrating gamification elements into mobile apps were described in 12 studies: increasing user engagement and motivation and enhancing intervention effects.
Conclusions: There is great potential in the use of mHealth apps to promote health outcomes for children with disabilities. Research in the field is in its infancy, but this review indicates that there is a positive trend in the use of gamified mobile apps to provide more equitable access to health initiatives and promote more engagement in health and rehabilitation interventions.
Siblings of children with autism are considered to have an increased likelihood (IL) of autism. Significantly, there has been shown to be a delay in phenotypic presentation of IL siblings. The present longitudinal; study sought to characterize the change in diagnosis of younger IL siblings of children with autism at ages 2, 3, 5, and 8, and to determine if diagnosis status changed, persisted, or remitted over time (n=234). Autism characteristics were measured using the Autism Observation Scale for Infants (AOSI) and Autism Diagnostic Observation Schedule (ADOS) assessments and the Autism Diagnostic Interview – Revised (ADI-R) parent interview. The clinical characteristics of children diagnosed at ages 3, 5, and 8 were compared using measures of central tendency. The main findings were (1) across the age groups, 80% of the children’s diagnostic status remained stable (i.e. were diagnosed at age 2, and kept their diagnostic status at ages 3 and 5), (2) there was a 14% change in diagnostic status (defined as a child that was not diagnosed at age 2, but were diagnosed later on at age 3 or 5), and a 5% were varying, and 1% who were diagnosed with autism at age 2 did not meet criteria at later ages, and (3), there tends to be more diagnostic variation in females than in males. These results suggest that diagnostic status is stable across ages 2, 3, 5, and 8 for children with an IL for autism.
Robotic walking in the community: long-term use of the Trexo Home, a prospective observational study
Background: Access to robotic walking is typically limited to clinical settings for children with mobility limitations. The opportunity for family-initiated home and community use has been introduced by the Trexo Home, an overground robotic walker. Long-term Trexo Home use has not been studied.
Purpose: To describe users and examine Trexo Home use over a six-month period.
Methods: This is an on-going prospective observational study. Participant age, gender, diagnosis, and motor function (via the Gross Motor Function Classification System [GMFCS] Family Report Questionnaire) were collected and summarized using descriptive statistics. Total steps and average cadence (steps/min) during Trexo Home use were calculated for months one, three, and six. A repeated measures ANOVA analyzed change over time
Background. While there is some research to support that in-person mindfulness interventions can improve the mental health of people with intellectual disabilities (ID), the impact of virtual mindfulness interventions on the mental health of people with ID and their caregivers has yet to be examined. Virtual mindfulness may be especially helpful for people with ID who experienced a disruption in supports during COVID, including sport programming such as Special Olympics (SO). As such, this study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. Method. Forty-four SO athletes and their caregivers (n = 29) participated in a six-week adapted virtual mindfulness intervention. Athletes completed mindfulness and wellbeing questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were also conducted. Results. The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete wellbeing and mental health, and caregiver stress and mindfulness post-intervention. All improvements were maintained at the three-month follow-up. Qualitative results revealed that caregivers and athletes learned new mindfulness skills that they were using in their everyday lives and that they enjoyed participating in the group with their family members. Conclusions. Virtual mindfulness groups may be an effective intervention in improving the wellbeing of adults with intellectual disability, as well as their caregivers. Future work should explore how SO can effectively integrate mindfulness in SO programming.
Advances in proton radiation therapy (PRT) have improved survival rates for childhood brain cancer and reduced negative cognitive outcomes, yet the risk of adverse neurodevelopmental outcomes remains high. Attention and executive function (A/EF; i.e., cognitive processes associated with learning and goal-directed behaviour) are especially vulnerable to PRT, predisposing children to lifelong neurodevelopmental conditions affecting cognitive, academic, psychological and social function. In collaboration with Radiation-Oncology at Mayo Clinic Rochester, we pilot-tested a novel A/EF cognitive intervention, Dino Island (DI), using a multiple-baseline case study design in 3 children receiving PRT for brain tumours. DI uses evidence-based process-specific, and compensatory remediation approaches within a game-based format to promote brain plasticity, strengthen cognitive abilities, and maximize generalization. The present study investigated the implementation and feasibility of DI in a hospital context as delivered by hospital support personnel. Pre-, post-, and follow-up parent reports on the BASC-3, PedsQL, BRIEF-2, and Vineland-III were collected for participants (n = 3, age = 7 years). Results suggested initial improvements in behaviour and quality of life. Feedback from the primary interventionist indicated that DI was engaging, user-friendly, and had clinical merit. Parents also reported improvements in their child’s behaviour, adaptive skills, and emotional control, although they expressed a desire to be more involved in the intervention and to continue DI at home. Specific cognitive and behavioural results and follow-up data will be expanded on for the poster.
Family engagement in research (FER) represents a shift in how researchers approach issues in childhood disability or pediatric chronic disease wherein the patient and family are valued members of the research team and can influence all stages of the research process through a partnership model. Families are uniquely positioned to share what is meaningful and impactful to their lives. It is vital that clinicians are involved in this partnership as it seeks to directly influence clinical practice. Our knowledge mobilization project was designed to address an identified gap in knowledge about FER for medical students, residents and research trainees. We created a workshop that is designed to teach learners about the fundamentals of FER, distinguish between different patient roles across the involvement matrix, and describe how to apply the principles of FER in their own practice. This is accomplished through an interactive presentation with breakout activities, an infographic, and an educational resource list. Equipping learners with the knowledge and skills to meaningfully collaborate with patients and families has far-reaching implications. Recognizing the value of FER,learners may be empowered to actively partner with patients and families in future clinical and research endeavours, ultimately enhancing research quality and patient care. When learners understand how to engage effectively, they can also strengthen their relationships with patients and families, leading to better communication, increased trust, and improved healthcare experiences. Overall, learners will gain a deeper understanding of how to navigate the complexities of clinical and research interactions while promoting patient-centered, evidence-based care.
Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Sibling relationships are one of the most long-lasting and influential relationships in a human’s life. Living with a brother or sister who has a life-threatening condition significantly impacts siblings’ physical and psychosocial well-being. Studies showed that siblings’ health and well-being were mostly reported by parents. No reviews to date have examined the healthy siblings’ self-reported experiences throughout the disease process. This scoping review aimed to summarize and map current research examining healthy siblings’ self-reported experience of living with a brother or sister with a progressive, life-threatening condition to identify the knowledge gaps and provide direction for future research. Studies were identified through five major electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Only 10 studies examined neurodevelopment, genetic, and metabolic conditions such as Mucopolysaccharidosis (MPS), Batten disease, and Duchenne Muscular Dystrophy (DMD). A total of four broad themes that highlighted siblings’ experiences were identified across studies: 1) family functioning, 2) psychological well-being, 3) social well-being, and 4) coping. Siblings experienced challenges and difficulties throughout the child’s illness, yet there have been very few studies that examined siblings’ psychosocial trajectories. Future research should incorporate longitudinal designs to better understand the changes in siblings’ experiences and consider exploring the roles of extended family members and the community in providing siblings with additional support. The significance of longitudinal studies can also help shed light on siblings’ resilience and inform how support may be directed at building siblings’ strengths.
Background: Children with developmental disabilities (DD) are at a high risk of experiencing mental health issues, particularly, during life transitions (e.g., adolescence). The ability to withstand challenges (i.e., resilience) emerges as an essential competence for youth with DD and their families to navigate these vulnerable transition periods.
Purpose: To explore the concept of resilience in youth with DD and their families (identify significant factors, existing interventions, practice gaps).
Methods: A scoping review was conducted following the Arksey & O’Malley framework, including a comprehensive search, selection, extraction, and data synthesis using a narrative approach and resilience frameworks. Results: Following the initial search (n=1,191 citations), review by titles/abstracts, and by full-text, seventy-two studies were included. Interventions studies (n=6) addressed individual (82.1% of studies), school/peers and community (83.3%), and family (n=60%) resilience factors, including self-regulation (6/6 studies), cooperation/communication (5/6), peer relationships (4/6), and home/community relationships/supports (3/6). No interventions were found to address the youth’s confidence and home participation, and only one program targeted parenting skills. Assessment studies (n=60) revealed a lowered resilience in youth with DD and their caregivers. Protective factors (e.g., caregivers’ problem-solve abilities, their emotional health; teens’ social/emotional assets, community supports) emerged to significantly affect the overall youth/family’s resilience and other outcomes (e.g., substance abuse, behavioral issues, academic and social struggles, anxiety/depression).
Conclusion: Lowered resilience in adolescents with DD and their families can negatively impact other important life-domains. The few existing interventions and the identified gaps warrant the development of comprehensive resilience-supporting programs for this population.
Fetal Alcohol Spectrum Disorder (FASD) is the most common neurodevelopmental disorder in the world, affecting 1-5% of North Americans. The vitamin A hypothesis of FASD postulates ethanol-induced retinoic acid (RA) deficiency during development results in prenatal alcohol exposure (PAE) phenotypes. Accordingly, alcohol or RA-metabolic genes as well as RA-regulated developmental genes may represent risk or resilience variants influencing PAE outcomes. Additionally, many rare neurodevelopmental disorders which involve RA signaling phenocopy FASD. Taken altogether, allelic variants within the RA network genes may be genetic biomarkers influencing PAE outcomes. To test this hypothesis, variant analysis using a gene candidate approach on RA-network genes was competed on whole exome sequencing data of 23 FASD diagnosed individuals, while allele frequencies obtained from NCBI served as controls. Overall, FASD individuals had higher risk allele frequencies within the RA network and were deficient in resilience alleles when compared to controls. Discovered risk variants in alcohol metabolism genes were associated with variations in alcohol consumption, dependence and clearance rate. Variants altering enzymatic activity of RA metabolism genes were also identified. PAE risk variants in several genes within RA controlled pathways, in addition to known pathogenic variants for neurodevelopmental disorders with shared phenotypes to FASD, were also enriched in the FASD cohort. This research is the first to associate these variants with FASD, and may help identify new mechanisms of PAE and diagnostic tools.
Background: Care Coordination (CC) supports children with neurodevelopmental disorders and medical complexity (NDD-MC) and their families in managing unmet care needs. This study explored how CC affects costs of care, QoL, and care integration for children with NDD-MC and their families.
Method: Findings from a multilevel-mixed methods study from the University of Calgary and the CC team at Alberta Children’s Hospital were examined. Data was collected from administrative datasets, pre-post surveys, interviews, and embedded multiple-case studies.
Results: Costs of care. Caregivers reported a decrease in average physician claims cost per child (-27.8%), emergency department visits (-31.87%), and in-patient stays (-50%). Before CC caregivers lacked knowledge of NDD-MC resources even when already enrolled into disability support programs. By equipping caregivers with information specific to their children’s NDDs, CC improved management of chronic health condition. Care Integration. Access to services at school remained challenging. 80% of caregivers reported improvements in caregiver involvement and preparedness of care teams in care planning. Family engagement and the support of care coordinators improved QoL for 58%.of participants. QoL. Flexibility in meeting changing care needs by CC improved family QoL; however, some caregivers reported no improvements in QoL. These caregivers struggled with stress, lack of support, and other QoL challenges.
Conclusion: Study findings showed high variability in outcome measures. Discussion of the individual and contextual factors impacting CC interventions will support a more informed and responsive health care system for children with NDD-MC
Social camouflaging is the process whereby autistic individuals conceal or compensate for autistic traits to socially assimilate with their neurotypical peers. Research suggests that social camouflaging may be associated with mental health problems in autistic youth, including anxiety and depression. Little is known about the cognitive precursors and consequences of social camouflaging except that there appears to be an inconsistent and complex relationship between the two. To investigate the current state of the literature in this area we conducted a systematic review following PRISMA guidelines. This poster will focus on a subset of results from a larger review. 1505 studies with a focus on social camouflaging including both youth and adult populations were screened. 8 quantitative and 5 qualitative studies focused specifically on the relationship between social camouflaging and cognitive traits/neurological correlates. 5 quantitative studies found a significant relationships between cognitive/neural predictors and social camouflaging in the areas of executive function, IQ, self-representation, functional connectivity, and grey matter volume. 6 quantitative studies did not yield significant results. Qualitative reports indicated an association between social camouflaging and cognitive fatigue, with impacts on daily living, educational success, and learning. The findings of this review indicate a bidirectional relationship between social camouflaging and cognitive and neurological correlates. More details regarding these associations, their clinical consequences, and implications for treatment in autistic youth will be discussed.
The federal government is working on creating a national autism strategy, to improve the health and wellbeing of Autistic people across Canada. The Canadian Academy of Health Sciences assessed evidence and practices to inform the development of a national autism strategy. Their report identified significant gaps in our knowledge regarding Autistic adults. The most critical missing information is around the needs and quality of life (QoL) of Autistic adults.
The objective of this project was to develop a national survey to gather the perspectives of Autistic adults (aged 30+) across Canada on QoL and to learn about their overall needs using a collaborative co-design approach. Co-design refers to involving people from the patient community at all stages of the research process. A survey was developed, by selecting questions from existing QoL questionnaires on a pre-determined list of QoL topics. Ten Autistic adults of various ages, abilities, and backgrounds were consulted and they suggested changes to wording, additional questions, questions to be removed, and how to market the survey to the community.
The survey ran from June 19th to August 18th and received 1915 responses. Respondents were recruited through community and service organizations along with social media and internet advertising. Results are expected later in 2023.
This process has been challenging, but at the same time rewarding and impactful. This survey will inform the upcoming national autism strategy and involves the community every step of the way.
Universal Design for Learning (UDL) is a simple framework designed to increase inclusive educational planning and instruction for teaching across subjects and levels (Clapp, 2017; Ok et al., 2017). While there is robust evidence related to integrating UDL concepts into teacher training coursework (Griful-Freixenet et al., 2021), use of university-school partnerships for this topic and the effects of such efforts has not been fully examined. Using a parallel mixed methods approach including quasi-experimental nonequivalent control group pretest-posttest design and post-activity written reflections two sections of one class learned about UDL, practiced UDL lesson planning, and performed a UDL lesson plan critique in one of two conditions—partnership (using a teacher submitted lesson plan) and no partnership (library sourced lesson plan). The research questions included examination of: (1) effects on student UDL beliefs and self-efficacy after instruction, lesson planning, and lesson plan critique and 2) student perceptions of the partnership or control lesson plan critique activity(3) participating teachers’ perspectives and experiences with UDL and the project? The results suggest that pre-service teachers’ understandings and application skills related to UDL principles were significantly improved over the course of instruction. In addition, pre-service teachers positively described the university-school partnership and expansion of their UDL application skills through the lesson plan activity. Pre-service teachers gained a greater sense of self-efficacy and confidence through the instruction and partnership as demonstrated in both quantitative and qualitative analysis.
Fragile X syndrome (FXS) is the leading monogenic cause of Autism. Seizures, hyperactivity, and anxiety are common symptoms of FXS. No cure currently exists for FXS, and drug development has suffered many failures in clinical trials based on promising preclinical findings. Thus, effective translational biomarkers of treatment outcomes are needed. Recently electroencephalography (EEG) has been proposed as translational biomarker in FXS. Being X linked trait, FXS is more prevalent in males than females. Recent studies with FXS male participants and rodent models showed an increase in gamma EEG power. However, there is not enough research with female FXS patients or models. Therefore, we aim to compare EEG power between wild type (WT) and fmr1 KO (KO) female mouse models at P40 (juvenile) and P70 (adult) ages. A stand-alone Open-Source Electrophysiology Recording system for Rodents (OSERR) is employed. Behavioral tests including light and dark (LD), open field tests (OFT) and freezing test (FR) are conducted. EEG activity is recorded in the home cage (HC) and later in LD, OFT and FR chamber. Following that, the power of the EEG signal in various frequency bands is computed using MATLAB codes. Our initial results show a significant increase in alpha, beta and gamma EEG power in KO females mouse models as compared to WT controls, and this difference is more pronounced at P40. Overall, our findings suggest that alterations in EEG signal in the FXS model depend on both sex and age.
Communication, Collaboration & Connection - Fostering Engagement for Improved and Equitable Outcomes
All people are entitled to an equalitarian, rights-based approach to research and health services through communication, collaboration and connection. Partnerships play a key role in harmonizing methods and data sources globally and at the National level. Research engagement fosters the bridge that connects the lived experience to the evidence-based outcomes that empower individuals directly impacted by those outcomes. The voice of lived experience is essential to ensuring effective communication. Effective communication is crucial to assisting researchers and health service professionals share their findings with the scientific community and the general public. It allows resources that are represented clearly and accurately, facilitating the replication and validation of their results. Fostering connection, and maintaining equitable, rights-based approaches, and connecting with accessible translational materials, engagement pathways, and individualized resources, can promote a more collaborative and inclusive service culture, which can help to address complex problems and improve the relevance and applicability of research findings and health service outcomes.Providing an equalitarian, individualized platform of engagement minimizes the direct cost and time efficiency that enables connection, collaboration, and communication, and allows for rights-based connection with the lived experience. Collaboration can remove barriers by bringing together individuals with different backgrounds, expertise, and perspectives to work towards a common goal. This can lead to a more comprehensive understanding of the subject matter, increased creativity and innovation, and the ability to address complex challenges and barriers.
Emerging empirical evidence is demonstrating an association between social camouflaging and negative consequences on the mental health and well-being of autistic individuals. Social camouflaging is a subset of behaviours used by autistic individuals to mask or compensate for autism and behave in a socially normative manner. Most research on social camouflaging has focused on autistic adults, and studies of the impacts of camouflaging in youth are scant. The current findings present a subset of results from a larger systematic review. Following PRISMA guidelines, 1505 studies were initially screened and 38 met final criteria. Of these, 10 studies focused on mental health consequences related to social camouflaging in autistic youth using various quantitative, qualitative, and/or mixed-method methodologies. Four main themes were identified including: (1) mental well-being, (2) personal identity, (3) social outcomes, and (4) age of diagnosis and support needs. Results indicated that higher levels of camouflaging are associated with anxiety, depression, exhaustion, personal identity struggles, difficulty forming authentic relationships, and the inability to access necessary resources to succeed. Implications for future policy and clinical practice will be discussed, particularly as these pertain to co-morbid mental health disorders and personal/social difficulties in autistic youth. In addition, considerations and implications for autism diagnostics in youth within clinical and research contexts will be presented.
Research regarding FASD has focused primarily on the effects that make life harder, those that lead to negative outcomes.
The research literature on what goes right, what leads to better outcomes, the ‘how and why’ of attaining a good quality of life is comparatively very short.
Whitecrow Village programs have focused on finding and enhancing those elements, the ‘what, why, and how’ that contribute to stable family life, physical and emotional health, strong community contributions.
Alcohol is rarely, if ever, the only adverse contributor to the brain and body differences of FASD. In the same way, clinical knowledge of deficits does not address the effects of adverse social conditions, or the positive effects of supportive social conditions for those with FASD and those at risk of FASD. Our model offers clinical knowledge and experiential learnings simultaneously, to families, individuals and professionals, resulting in practical and positive change for all involved.
This presentation regards the foundation of an implementation research project – finding what works and then doing it. Over 25 years we have experienced the positive outcomes of our families and of our staff with FASD who have designed, participated in, and offered the Whitecrow Village model.
Research regarding FASD has focused primarily on the effects that make life harder, those that lead to negative outcomes. The research literature on what goes right, what leads to better outcomes, the ‘how and why’ of attaining a good quality of life is comparatively very short.
Whitecrow Village programs have focused on finding and enhancing those elements, the ‘what, why, and how’ that contribute to stable family life, physical and emotional health, strong community contributions.
Alcohol is rarely, if ever, the only adverse contributor to the brain and body differences of FASD. In the same way, clinical knowledge of deficits does not address the effects of adverse social conditions, or the positive effects of supportive social conditions for those with FASD and those at risk of FASD. Our model offers clinical knowledge and experiential learnings simultaneously, to families, individuals and professionals, resulting in practical and positive change for all involved.
This presentation regards the foundation of an implementation research project – finding what works and then doing it. Over 25 years we have experienced the positive outcomes of our families and of our staff with FASD who have designed, participated in, and offered the Whitecrow Village model.
Accommodation is a human right and an avenue to full participation and respect for all people in society, including but not limited to research. Just as disability varies from person to person, so to o will the act and provision of accommodation vary.
The Accessibility Accommodations in Patient-Oriented Research Partnerships booklet was created to assist in conversation and brainstorming when discussing accommodations in research partnerships. The booklet provides family members, people with lived disability experience, clinicians, and researchers with different ideas and types of accommodations and can be used as a springboard to creativity, conversation, and collaboration about the topic of individual accommodations (e.g., accommodations related to communication, built environment, meetings, conferences, technology etc.). The booklet was created by a 4-member team, all of whom live in Ontario, Canada and identify as either having disabilities and/or neurodivergencies in varied ways. It was created as part of CanChild, McMaster University, and Kids Brain Health Networks’ Family Engagement in Research course -Winter 2023 session. Accommodation can and should change as needed to ensure full participation in research partnerships. This booklet will be presented as a tool not only for those entering new research teams and partnerships but also for those who are already in established research teams. It is believed that this is a tool that can and should be utilized at any and all stages of research.
One in every twelve Canadians is living with at least one rare disease and 95% of those diseases have no targeted treatment. There is a pressing need to meet the immediate needs of individuals living without targeted treatment options. Involving parents in the development of care management strategies, especially in pediatric rare diseases, can assist in attaining and applying diverse and innovative expertise. With a focus on Fragile X syndrome (FXS), the most common inherited cause of intellectual disability and autism in males, our aim was to understand the decisions and processes leading to successful parenting moments for mothers raising biological sons diagnosed with FXS.
A qualitative study using Cognitive Task Analysis (CTA) methodology. We used concept mapping for knowledge elicitation, analyzing the maps to identify the cognitive effort and knowledge. Reflexive thematic analysis identify themes related to care strategies. N=7 mothers from Canada, USA, and Australia.
Mothers apply a great deal of complex cognitive effort in caring for their sons with FXS and have developed expertise in recognizing cues, and making decisions or judgement calls. These findings generated 3 themes related to successful parenting events: (1)Follow the spark (2)Be kind to yourself (3)Recognize the Champions that surround you.
The elicitation of expert tacit knowledge using CTA provides a rich understanding of the cognitive processes that underlie successful care management and positive health outcomes in FXS. This knowledge can aid in the development, modification, and adaptation of complex intervention strategies and knowledge in FXS and rare diseases more broadly.
Background: While developmental disabilities (DD) occur in approximately 1-3% of the population, nearly 50% of this population experiences mental health concerns. Previous research has shown that people with DD experience many barriers, such as stigma, exclusion, and communication difficulties, to accessing mental health care. Mindfulness-based interventions are growing in popularity to enhance mental health and have been applied with a wide range of populations. Many protocolized mindfulness programs make use of abstract approaches, such as visualization or meditation, which may be inaccessible to some populations, such as those with DD, resulting in limited uptake.
Purpose: The aim of this study was to identify ways to improve accessibility of mindfulness interventions for people with DD.
Methods: This three-phase qualitative study involved a critical review, focus groups with clinicians, and interviews with people with DD and their caregivers about their experiences with mindfulness.
Findings: The preliminary findings identified ableist assumptions and their potential effects on the delivery of mindfulness programs for people with DD. Further, it identified ways in which mindfulness was adapted to make it accessible, and how accessible mindfulness was experienced by the providers and recipients.
Implications for practice: The study results inform adaptations of mindfulness programs to support implementation of accessible mindfulness programs for individuals with DD, with the ultimate aim of contributing to improved mental well-being for this population that they may live their best lives. The findings of this study will be of relevance to those with an interest in mental health for individuals with DD.
Background: Neurodevelopmental disabilities (NDD) are a group of disorders that affect brain development and function. These disabilities can have a significant impact on an individual’s daily life that affects their inclusion in society and may require specialized services and supports, particularly for youth who are transitioning from pediatric to adult services. The lack of data and information on health outcomes for individuals with NDD has been identified as a significant challenge. Without comprehensive information, it is challenging to develop effective strategies to support individuals with complex needs and to ensure that services are delivered equally.
Purpose: Identify the barriers that youth with NDD face when transitioning from pediatric to adult services.
Methods: The study will utilize a mixed methods approach. Quantitative analysis will use an administrative dataset (n~100,000) from British Columbia and will identify pre-transition (15-18 years) and post-transition (19-25 years) factors impacting access to adult services. Semi-structured interviews (n~13) will be conducted with service providers and decision-makers in CLBC.
Findings: Qualitative research findings will be used to inform the discussion of the quantitative findings. Results may indicate whether there is a significant change in service utilization in the transition period.
Conclusion: The discussion of this study lies in its potential to provide a robust understanding of the service utilization patterns of individuals with NDD during the transition period. Overall, the impact of this study could be significant in improving the lives of individuals with NDD and their families.
In 2022, three organizations (Holland Bloorview Kids Rehabilitation Hospital, the Children’s Hospital of Eastern Ontario, and McMaster Children’s Hospital) got together to address the unmet needs of hundreds of children in the province of Ontario. The new Extensive Needs Integrated Pathway provides specialized intensive clinical services to children with multiple neurodevelopmental, behavioural, and medical needs, and social vulnerabilities. This service provides individualized, wraparound intervention for children with unmet needs. This session will describe the process of standing up Ontario’s first integrated behaviour health pathway.
Service Goals: Increase child/youth, family skills and capacity to support functioning and participation in home, school and community.Reduce high-risk behaviours of children/youth, minimize the likelihood of crises and family breakdown.Develop and implement integrated service plans, with existing community service providers. Reduce reliance on Complex Special Needs funding, repeated Emergency Department visits and inpatient admissions.
The service is designed to reduce barriers to accessing timely, evidence-based, and trauma-informed treatment. The partnership is supported by shared governance structures and working groups focused on clinical, evaluative, and process-oriented aspects.
Year 1 key learnings:
Collaborative approaches for multi-organizational partnerships across diverse regions with unique mechanisms of health and social service access, coordination and delivery. Engagement strategies for stakeholders including children and families, community-based health and social service providers, advocacy groups, service access and coordination sites.Strategies for multi-organizational teams to implement shared service models, care delivery, and outcome measurement.
LEAN techniques for rapid program development, launch, and refinement.
Despite being highly prevalent within the population of children with neurodevelopmental disorders (NDDs) or concerns, those with diagnosed intellectual disabilities (IDs) and/or limited-to-no expressive language concerns are poorly represented within cognitive intervention research. Those with IDs and/or expressive language concerns are purported to represent distinct groups for which intervention goals, design, and protocols need special consideration. We administered the Dino Island Cognitive Intervention Program (DI) to children with diagnosed intellectual disability and/or significant expressive language concerns via a case-control design. The program utilizes a tablet-based ‘serious game’ format to target A/EF using a series of exercises that adult cognitive coaches and children complete together (3-4x per week for 30-60 minutes). Coaches and children also engage in between-session skill development and practice. Coaches receive psychoeducational training online and receive additional support. Behavioral, cognitive, and practical adaptations were made to the intervention program between participants in response to qualitative and quantitative results. Implications for intervention appropriateness across groups and factors will be discussed as well as recommendations for adaptations to similar intervention programs and studies.
Background: Family caregivers (hereinafter referred to as caregivers) of individuals with neurodevelopmental disabilities (NDDs) report higher levels of stress, anxiety, and depression than other caregivers (1,2,3), yet few evidence-based mental health interventions are available to them. There is growing evidence that Acceptance and Commitment Training (ACT), an evidence-based intervention which aims to increase psychological flexibility, may benefit caregivers of people with NDDs (4,5,6,7,8,9).
Objective/Methods: We sought to understand the effectiveness of implementing our group-based ACT model (10), jointly facilitated by caregivers and clinicians in partnership, at 10 sites across Canada. Specifically, we examined feasibility, acceptability and change in psychological and ACT process variables.
Results: All 10 partnered teams successfully ran at least one ACT workshop for caregivers of people with NDDs, with 94 of 139 participants consenting to be part of the research evaluation which involved completing an online survey before the intervention, after the intervention, and again 8 weeks later.
Preliminary results revealed high levels of satisfaction with the groups overall, as well as significant improvements in caregiver participants’ self-reported levels of depression, stress, isolation and overall well being, as well as ACT process measures including self compassion, resilience and cognitive fusion (i.e., getting stuck with thoughts).
Implications: Findings provide evidence of the feasibility and beneficial impact of our partnered ACT intervention, as implemented by caregivers and clinicians in the community. While there remain challenges to scale and spread programs of this kind, these efforts represent an important first step.
Background: Parenting programs for families of children with neurodisabilities are recommended as standard care because they often target child behavior problems that are tied to both child and parent well-being. Despite the family environment being the context in which skills learned through parenting programs are implemented, study outcomes typically focus on child and parent factors without consistently examining the family unit.
Purpose: The purpose of this scoping review is to identify how family-level outcomes are measured in the context of parenting programs for families of children living with neurodisabilities and comorbid behavior problems.
Methods: Scoping review methodology was used to identify and synthesize evidence related to parenting programs for families of children living with neurodisabilities that included some measurement of family well-being.
Findings: Twenty-nine studies of parenting programs that involved some measure of family well-being were included in this review. The results highlight the diversity in which family-level outcomes and family characteristics are conceptualized. General family functioning was the most frequently measured construct, though several disability-specific family measures were also identified.
Conclusions: Future research on parenting programs should include family-level outcomes beyond child and parent well-being. Researchers are encouraged to contextualize results based on the underlying theoretical frameworks that help to explain the family-related construct being measured.
Background: Knowledge translation (KT) initiatives that facilitate the implementation of evidence-based (EB) rehabilitation practice can optimize patient outcomes. However, the dissemination and implementation of KT strategies can be challenging due to the feasibility and effectiveness of mobilization efforts. This project aims to describe KT strategies promoting evidence-based rehabilitation for children with cerebral palsy (CP) and understand the contextual impact of healthcare settings on effective implementation.
Methods: Following a realist review approach, we analyzed and synthesized included evidence from six databases. All study designs were considered, and studies were included if they addressed KT strategies for pediatric CP rehabilitation. Data were extracted on study characteristics, KT strategy, organizational characteristics, outcomes, barriers/facilitators, and key findings.
Results: The included evidence (n=21) demonstrated that multidisciplinary approaches to KT could enhance EB practice for children with CP and often include both online resources and in-person training (n=19, 90%). Additionally, using knowledge brokers or champions (n=14, 67%) may increase clinicians’ EB knowledge uptake. Leadership and organizational support emerged as key mechanisms contributing to a KT approach’s effectiveness. Common barriers to sustaining KT strategies included a high employee turnover and a lack of funding and resources. Studies indicated that contextual factors need to be sought out and leveraged to optimize the impacts of KT interventions.
Conclusion: Our work offers practical recommendations for healthcare organizations to inform the development and implementation of a KT strategy to support EB rehabilitation. It provides valuable insights into the contextual factors influencing the effectiveness of KT implementation strategies in rehabilitation settings.
Introduction: The aim of this scoping review was to synthesize the evidence on the indirect impacts of the COVID-19 pandemic on children/youth with autism, fetal alcohol spectrum disorder (FASD), and their caregivers.
Methods: MEDLINE, Embase, Global Health, PsycINFO, Scopus, and the grey literature were searched for relevant studies published between January 2020 to September 2021. Indirect impacts were extracted and categorized by theme and key findings were summarized under each theme.
Results: Out of 163 full-text studies assessed, 54 met the eligibility criteria for children/youth with autism and their caregivers and none for FASD. The included studies (mostly conducted during the early months of the pandemic) explored various impacts of the COVID-19 pandemic including mental health (n=36), condition-associated features including disruptive behaviours (n=26), material circumstances such as education (n=21), health behaviours including sleep (n=16), social health including social lives (n=8), and quality of life (n=3). Findings demonstrated that autistic children/youth and their caregivers were adversely affected by the indirect effects of the response measures enacted early on in the pandemic. Compared to their non-autistic counterparts, autistic children/youth were found to have worse mental health, and caregivers of autistic children and youth had worse mental health, work-life balance, and quality of life.
Conclusion: These findings highlight the importance of examining the differential impacts of the pandemic on autistic children/youth and their caregivers and ultimately, will help inform the response measures and services/supports required as the pandemic evolves as well as, the planning needed for pandemic preparedness.
Dino Island is a cognitive rehabilitation tool that combines a tablet-based, neuroscientifically-developed game with metacognitive coaching. There are often barriers to receiving clinical services including cost, scarcity of clinician time, and proximity to clinicians, and these barriers are especially prevalent in remote or rural communities. The DI program was intentionally developed with accessibility in mind and, along with that, delivery in remote locations.
The requirements for DI delivery are an adult willing to act as “coach” (i.e., complete training and deliver the program), ample time (i.e., ~1-3hrs per week), and necessary technology (i.e., a tablet with the Dino Island app and power source).
This pilot study investigated the feasibility of Dino Island for children with cerebral malaria within a remote, resourced-limited community in Malawi, Africa. Cerebral malaria is common in Malawian youth and has significant neurodevelopmental sequelae such as poorer attention and memory. To date there has been no follow-up care available to address these concerns. The intervention was deployed using a within-hospital train-the-trainer model, whereby critical care nurses trained family members to deliver DI to their children upon returning home to their remote villages. Significant adaptations to training procedures and protocols were required to accommodate cultural/linguistic differences and resource barriers. Results from ten families suggest satisfactory acceptability and feasibility and illuminate areas for improvement in broadening use of the DI program across settings. The poster will expand upon translational value of the program in such a unique setting as well as future directions for investigating efficacy and sustainability.
Background: Family engagement in research is increasingly recognized as a crucial element for conducting research that is relevant for families and ethical in nature, with strong practice implications. Despite this recognition, there is a lack of practical tools to help researchers embark on meaningful engagement activities that will benefit both family partners, and the research process.
Description of project: For the Family Engagement in Research Certificate Program (Kids Brain Health Network/McMaster), a patient partner and research trainee co-created a one-page handout to help researchers conduct family engagement activities in a meaningful, ethical and practical manner throughout the course of a research project. Informed by a scoping review on the important elements of family engagement, existing tools to facilitate family engagement, and lived-experience, the handout provides the values and guiding principles that researchers should strive to adhere to when planning to engage families in research projects followed by a series of reminders for researchers to engage families in every stage of the research process – beginning from the brainstorming stage to the knowledge dissemination stage.
Implications for practice: Both family partners and researchers working in a variety of research disciplines and content areas will benefit from the practical guidance presented in an easy to remember format, for meaningful, practical and authentic partnerships in research.
Recommendations: Wide dissemination of our practical handout as a quick reference guide for family engagement in research, will build capacity amongst both family partners and researchers to conduct meaningful, practical, and authentic research partnerships.
It is estimated that 4% of Canadian preschoolers suffer from significant speech or language delay (CASLPA, 2005). The ability to identify potential disorders and provide active intervention is crucial to the short and long term wellbeing of a child (Speech-Language and Audiology Canada, 2014). The Babbly App is an AI powered smartphone app which can monitor early speech milestones and suggest appropriate activities to stimulate speech and language learning.
This study will evaluate the usability and feasibility of the Babbly App for promotion of speech and language development of infants, evaluate if use of the app may promote speech development, and if the AI predictions correlate to a child’s speech milestones using standard assessments.
Infant/parent dyads will upload the child’s speech sounds weekly to the app for AI analysis and complete the app’s suggested activities. Parents will complete questionnaires about their experiences and the MB-CDI for their child every 2 months for 6 months.
Usage and AI analysis data will be collected from the app.Recruitment and data collection are ongoing at this point. Many families are on wait lists for SLP services in our communities. Using this or similar apps may be an option for parents to support language building activities and monitor milestones, or to reassure parents that their child is on track for language learning. AI analysis of infant sounds may eventually aid primary care providers in monitoring for delay and facilitate early detection and referral.
Background: There is growing interest in virtual care provision to improve patient access to quality care, and while the utilization of virtual care services has increased substantially, an evaluation of this care modality is lacking. Our team led an evaluation of virtual care services offered to children across Ontario, focused on the processes and outcomes of a variety of virtual care services.
Purpose: This evaluation addresses a key knowledge gap in our understanding of the provision of virtual care services for children.
Methods: This evaluation was informed by the Quintuple Aim Framework which focuses on: Population Health, User Experience, Provider Experience, Cost and Equity. Data were collected from 44 organizations, 194 service providers, and 909 parents/caregivers of children who have received virtual care in Ontario. Participants completed unique online questionnaires.
Findings: This work consistently revealed that virtual care is not one-size fits all. Our findings provide consensus on the types of services, and aspects of care, that are not as compatible with a virtual setting compared to others. This work summarizes barriers circumvented by virtual care, and those that remain, and highlights agreement between those providing care and those receiving it, that a hybrid approach to future care for children would be optimal.
Conclusions: A targeted approach to providing specific aspects of care virtually, as outlined in this report can inform the allocation of virtual care resources to ensure its provision remains equitable and cost effective.
Background: International clinical practice guidelines emphasize the need to provide early manual interventions for children with Hemiplegic Cerebral Palsy (HCP) before two years of age to maximize functionality. These interventions include play-based therapies such as Baby-Constraint Induced Movement Therapy (CIMT) and Hand-Arm Bimanual Intensive Therapy (HABIT) delivered by caregivers. Access to these evidence-based therapies is currently limited across Canada but the reasons for these inequities are poorly understood.
Aim: This project aims to identify the barriers and facilitators involved in the delivery of Baby CIMT/HABIT programs across Canadian provinces from the perspectives of caregivers, occupational therapists, and healthcare administrators.
Methods: To assess the barriers and facilitators involved in the implementation of intensive hand therapies, stakeholder groups (caregivers, occupational therapists, and healthcare administrators) were invited to co-develop three Likert scale response option surveys for each of the three different stakeholder/participant groups. Surveys were co-designed with caregiver and knowledge-user partners using the Consolidated Framework for Implementation Research. Additional feedback on wording was received from piloting the survey to engaged partner contacts. Using stratified purposive sampling, we aim to recruit one stakeholder from each participant group from two sites in each province and territory (26 sites total) for a minimum of 78 participants. Survey responses will be analyzed using descriptive statistics and identified barriers and facilitators will be mapped to evidence-based implementation strategies.
Implications: Identifying the barriers and facilitators will help to inform and design implementation strategies. Findings will assist increased delivery of Baby CIMT/HABIT programs across Canada.
Background: Subdural hematomas (SDH) are commonly reported in neonates. Cranial ultrasound (CUS) is the first-line imaging modality for assessment of neonatal intracranial hemorrhage and has also been proven to demonstrate posterior fossa SDH. We present a case of posterior fossa SDH in an unwell newborn that CUS failed to diagnose and was subsequently confirmed on magnetic resonance imaging (MRI).
Description: A term infant born vaginally after a delivery complicated by breech presentation and difficult head extraction was admitted to the NICU due to moaning. Following admission, he was noted to have extensive bruising, but no neurological concerns and anterior fontanelle was flat. However, he had an acute drop in hemoglobin 8 hours following admission. CUS through anterior and mastoid fontanelle approach was performed and was reported as unremarkable. Over the next 24 hours, baby had worsening of neurological signs and a repeat CUS was performed that showed acute hydrocephalus with no intracranial hemorrhage. An MRI confirmed the diagnosis of posterior fossa SDH with mass effect.
Neurosurgery was consulted and no surgical intervention was required during the hospital stay. However, a ventriculoperitoneal shunt was inserted following discharge for worsening hydrocephalus. Infant had no neurological sequelae at 10 months of age.
Conclusions: The case highlights the limited sensitivity of CUS for diagnosis of posterior fossa SDH. MRI should be strongly considered if a high index of suspicion exists for intracranial hemorrhage, despite unremarkable CUS findings. Appropriate and timely imaging and follow-up monitoring is essential to optimize the neurodevelopmental outcome.
Introduction: Despite commitments to the UN Convention on the Rights of Persons with Disabilities in reducing barriers to participation through access to services, children with Neurodevelopmental Disabilities (NDD) and their families experience challenges getting support to meet their needs. Access to services is a modifiable barrier to improve overall health capacity from childhood onwards and achieving UN goals.
Purpose: To describe disparities in access to early childhood disability support programs for youth with NDD and their families in British Columbia.
Hypothesis: Disparities in access to services and supports for children with NDD and their families are related to personal and environmental factors.
Methods: Mixed-methods study to identify factors impacting access to disability supports in British Columbia.Quantitative: Retrospective longitudinal cohort study of children with NDD aged 0 to 18 using linked administrative data. Descriptive and regression modelling analyses will be performed.Qualitative: Thematic data analysis on 24 semi-structured interviews of service providers and decision-makers from childhood disability services.Reviewed-approved by REB, University of Calgary (REB 20-1872; REB20-1872_MOD1).
Findings/results: Initial thematic analysis reveals emerging data patterns related to service awareness, eligibility criteria, access to services, and changing needs. Preliminary quantitative analyses indicate sample sizes are large enough to have power to detect relatively small effects in regression model variables of interest.
Conclusion or implications for practice: Through our co-design approach with an advisory council, findings can inform recommendations to improve realized access to services and improve outcomes for children with NDD and their families.
A review of Canadian Cerebral Palsy (CP) Registry found the mean age of diagnosis in British Columbia (BC) is ~25 months, later than what clinical guidelines enable. Early diagnosis is known to inform and facilitate CP-specific early intervention, maximizing the first years of neuroplasticity for optimal child development. This online survey aimed to examine barriers and facilitators of CP diagnosis among BC pediatric physicians. The Theoretical Domains Framework (TDF) guided development of an online survey. 60 responses were analyzed. 64% of respondents were currently diagnosing CP. Key barriers related to the TDF domains of Knowledge, Skills, Beliefs about Capabilities, and Environmental Context and Resources. Knowledge gaps included understanding the proportion of children with CP that are born premature versus full term (66%), and age at which predicting the severity of CP is most accurate (46%). Skills gaps pertained to the use and interpretation of clinical assessments for diagnosis (61%), and recognizing motor type, topography, and severity of CP (32%). Confidence barriers included uncertainty about ruling out other causes of motor delay (48%), making a false positive diagnosis (36%), diagnosing children under two (48%), and/or those who present with low tone (55%). Access to education/training was a key barrier related to Environmental Context and Resources. Facilitators included agreement on the importance of early diagnosis (91%) and recognizing CP diagnosis as part of their professional role (87%). Results have informed upcoming implementation plans to increase use of guidelines by pediatricians and improve access to early intervention for children at risk of CP.
Individual Orals #1
October 23 | Individual Orals #1
ORAL PRESENTATIONS:
- Moving forward: Mobilizing knowledge to co-develop the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit)
- Caring for a Child with Prader-Willi Syndrome: A Narrative Inquiry
- Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children with Medical Complexity
- Co-designing solutions to enhance access and engagement in pediatric telerehabilitation
- KidsAction Coaching in Action with Challenger Baseball-Jays Care Foundation
Supporting diverse families of children with neurodevelopmental disabilities- insights from community-based research
October 23 | Supporting diverse families of children with neurodevelopmental disabilities
Insights from community-based research
Navigating behavioural and mental health services for children and youth with neurodevelopmental disabilities can be incredibly disorienting, and often lead to high frustrations and stress for parents and families. Importantly, there is a growing awareness of the inequities experienced by families from diverse communities who face more barriers to accessing adequate care. There is an urgent need to act and co-create collaborations with community partners that can utilize research expertise to find solutions to real-world problems faced by diverse families across Canada. This symposium will provide insights from 4 community-based research projects and bring together the perspectives of researchers and community partners who have an interest in supporting families.
FASD & Me - Strengthening My Community: Leveraging the value of peer support and community to improve outcomes for youth with FASD
October 23 | FASD & Me – Strengthening My Community
Leveraging the value of peer support and community to improve outcomes for youth with FASD
The FASD & Me program aims to decrease stigma, build understanding, and develop actionable resources that are accessible to parents, caregivers, and youth with FASD themselves. FASD & Me resources celebrate children and youth with FASD and their families; equip members of their communities to better support them by strengthening understanding of the unique strengths and challenges of individuals with FASD; and dispel myths and stereotypes.
The FASD & Me: For Teens pilot was added in 2023, providing peer mentoring opportunities to teens with FASD and enabling these youth to gain a better understanding of FASD while developing self-advocacy skills to share with extended family, community members, and potential employers. Peer support, mentoring, and community connections are enhancing lives at all stages through innovative community-inspired approaches.
From basic science to community, new perspectives from developmental neuroscience
October 23 | From basic science to community, new perspectives from developmental neuroscience
There is a movement towards fostering greater researcher-family partnerships within the realm of neurodevelopmental research. These partnerships are important because they have the potential to create better research questions that have stronger and more applicable outcomes for the community. These kinds of partnerships have formed more readily between researchers in applied, health, and clinical settings, yet researchers from the basic sciences (e.g., cognitive and neuroscience) have yet to have as many opportunities to make direct connections with families. In this panel discussion, neuroscientists from Carleton University will describe their work and its applicability to neurodiverse children and youth, and their families.
Weathering the Storm: Strengthening outcomes for families experiencing AFCCA (Aggression toward Family/Caregivers in Childhood/Adolescence)
October 23 | Weathering the Storm: Strengthening outcomes for families experiencing AFCCA (Aggression toward Family/Caregivers in Childhood/Adolescence)
Aggression towards Families/Caregivers in Childhood and Adolescence (AFCCA) can be experienced by families impacted by neurodevelopmental disabilities and complex trauma; and this issue has been aggravated by the COVID pandemic. Early indicators support the hypothesis that combining peer supports, supportive communities, and effective evidence-based interventions can significantly change outcomes for both youth and their parents/caregivers, and potentially mitigate the need for more costly, intensive interventions in later developmental stages.
Research often takes 10+ years to be implemented into clinical practice; these projects show how implementation can be accelerated through effective, meaningful family and community engagement in all stages of research and application.
Individual Orals #2
October 23 | Individual Orals #2
ORAL PRESENTATIONS:
- Community Training and Implementation of the Social ABCs, an Intervention for Toddlers with Autism: Spread, Scale, Sustainment
- Implementation of a Novel Family-Centered Program within an Ontario Autism Service Setting: Baseline Findings from a Mixed Methods RCT
- The Ultimate Research Partner Guide to the Applicant Profile CV
- Genetically programmed retinoic acid deficiency during gastrulation phenocopies developmental defects due to acute PAE in FASD
- The Journey of Becoming and Being a Father to a Child With Cerebral Palsy
Innovative programs meeting the needs of students with NDDs in the classroom
October 23 | Innovative programs meeting the needs of students with NDDs in the classroom
There are many students, including those neurodevelopmental disorders (NDDs), who require support to be successful in today’s classrooms. To be able to provide this support, educators need ongoing access to evidence-based practices. Dr.McGonnell, teacher and psychologist, will open the symposium with an introduction to the current context of these needs and to the importance of evidence-based interventions being accessible to teachers so they can better meet the needs of students with NDDs. Dr.Corkum, child psychologist and researcher, will discuss the development, evaluation, and implementation of the ASSIST (Accessible Strategies Supporting Inclusion for Students by Teachers) program, an online program to provide classroom teachers with professional development on how to work effectively with children with NDDs, including ADHD, ASD, and LD. This presentation will highlight lessons learned from a national implementation study.
Drs. Rasmussen and Pei will discuss the implementation and evaluation of the Math Interactive Learning Experience (MILE), which was originally developed for children with FASD. MILE supports math learning by building underlying cognitive skills critical to math while as well as supporting the development of problem-solving strategies that facilitate emotional regulation.
This presentation will 1) highlight adaptations made to the MILE program to allow for classroom-wide implementation and 2) introduce the website-hosted training that supports asynchronous MILE training. Dr.Timmons will discuss the findings a four year-longitudinal mixed-methods study evaluating the effectiveness of an outreach program designed to build capacity of educators to support students with FASD. This presentation will highlight the importance of a collaborative approach to program evaluation while highlighting how practitioners can leverage the results to increase access to equitable learning opportunities for students with FASD globally. The symposium will conclude with discussant Adelee Penner, community partner and educator, reflecting on key points, including EDI considerations, from an educational perspective.
The F-words Implementation Journey: From Publication to Global Impact
October 23 | The F-words Implementation Journey: From Publication to Global Impact
Implementation is a central component of CanChild’s ‘F-words for Child Development’ Research and Knowledge Translation Program. Our collaborative implementation work to date has catalyzed our understanding and the momentum of F-words implementation globally and resulted in numerous learnings and subsequent projects/initiatives. This presentation provides an overview of our implementation efforts and highlights the essentiality of Implementation Science to move evidence-based innovations into practice.
The Importance Telling and Sharing Your Story - Using Digital Storytelling to Foster Healing and Resilience
October 23 |The Importance Telling and Sharing Your Story
Using Digital Storytelling to Foster Healing and Resilience
Stories connect us to each other. Stories are a compelling and meaningful way of sharing wisdom, not just data. Join Kristy Wolfe as she shares what digital storytelling is, what is involved in the process and how it can be used within the context of knowledge translation. This interactive session includes digital story examples, space for conversation and opportunities to reflect on how your research project could benefit from digital storytelling.
Guests will learn:
- what a digital story is and why it matters
- the process of creating a digital story
- identifying key moments and uncovering lessons
- the impact of sharing digital stories
Plenary Session: Mobilizing Knowledge and Changing Practice
October 24 |Plenary Session: Mobilizing Knowledge and Changing Practice
The gap between knowledge creation and knowledge uptake means that research innovations frequently do not reach their intended audience. The Kids Brain Health Network has positioned itself to be an instrument of change in this equation, with a focus on the skills and pathways necessary for implementation of research innovations into practice. In this exciting plenary session, KBHN has invited three change leaders from the areas of research, advocacy and policy who will bring a multisectoral lens to the discussion of what it takes bridge the gap between knowledge creation and uptake to improve outcomes for children with neurodevelopmental disabilities.
October 24 | “Nothing About Us Without Us”: Equitable and Accessible Youth Engagement in Research
This session will briefly explain the Youth Engagement in Research Project results. However, more importantly, by utilizing our experience as a research team, we will demonstrate an accessible patient partnership. We will cover our team’s journey, from creating the research idea to disseminating knowledge. We hope those who attend will leave with a more robust understanding and appreciation of how to develop research projects that, from the start, focus on patient engagement in a way that helps not only further research but also continues to push back against the ableist foundations of research.
21st Century Philosophies for Developmental Disability: Exploring Approaches and Applications in Practice and Policy
October 24 | 21st Century Philosophies for Developmental Disability: Exploring Approaches and Applications in Practice and Policy
‘Developmental Disability’ is undergoing a profound sea change. In this symposium, we will propose a uniquely Canadian approach to ‘developmental disability’ that is having international impact on the field of child health and development. We will share updated information on CanChild’s F-words for Child Development; Family-Centred Services; family engagement in research; and non-categorical approaches to functioning. We will then discuss next steps for working with policy makers and organizations to update and, in some cases, redesign systems of care need to meet these contemporary views. Importantly, we will challenge the traditional approach to services based on diagnosis, and propose and support alternate ways to think, plan and act.
Re-balancing the Wheel in the diagnosis, intervention and prevention of FASD and related NDD
October 24 | Re-balancing the Wheel in the diagnosis, intervention and prevention of FASD and related NDD
This presentation looks at the accomplishments and the challenges of two community based clinics delivering services for FASD and other NDD’s related to adversity. Both clinics opened more than 15 years ago serving youth and families in small but diverse communities–one in the inner city and one in a rural indigenous community. Both view health and healing in a larger social context in terms of strengthening relationships and restoring balanced environments to promote the development of youth gifts. In both communities there were social and economic barriers to accessing diagnostic and intervention services leading to youth health inequities. This in turn perpetuated a cycle of social and economic disadvantage among youth and families living with Neurodevelopmental disabilities that needed accommodations. The Eastern Door opened in 2006 and was the first multi-disciplinary team offering assessment for FASD and related ND conditions in Atlantic Canada. With ED practice there has been an increase in protective factors: earlier diagnosis and implementation of accommodations in school and family supports at home. This has in turn has led to decrease in prevalence and success of individual youth and young adults living with FASD and part of the ED. The ED just won the Korczac prize awarded by social pediatricians at the Pediatric Conference in Halifax.
The Richer initiative (Responsive, Interdisciplinary, Intersectoral Child and Community Health Education and Research) developed as collaborative interdisciplinary partnerships of primary health providers to build evidence based services for socially isolated and materially disenfranchised families in Vancouver’s DTES. It has led to a critical difference in the vulnerability of the children in the area. RICHERS interdisciplinary research to practice model has been recognized internationally for its development of an effective health service delivery model linking services across sectors.
Prioritizing children in policy: Lessons learned from a scoping review of national autism strategies around the world
October 24 | Prioritizing children in policy: Lessons learned from a scoping review of national autism strategies around the world
This session presents select findings from an in-depth international scoping review of national autism strategies with the overarching aim of informing the development of Canada’s own federal autism framework. Using the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) as an organizational framework, panelists will talk about why a national autism strategy is essential and discuss both quantitative findings and qualitative findings of the review. Panelists with lived experience will provide critical context for the panel discussion, offering their perspectives and priorities. Drawing on diverse areas of expertise, panelists will speak to the topics of awareness-raising; health, habilitation, and rehabilitation; political participation; education; employment; intersectionality; and research, statistics, and data collection, which is followed by a question and answer session.
Building an Evidence-Informed Knowledge Translation Resource to Promote Healthy Outcomes in Individuals with FASD: Development and Process
October 24 | Building an Evidence-Informed Knowledge Translation Resource to Promote Healthy Outcomes in Individuals with FASD: Development and Process
This presentation will characterize the three developmental phases we have undertaken to build COMPASS. In the first section, we will summarize the results of a secondary data analysis of a large national database of individuals with FASD across the lifespan, through which neurodevelopmental periods and their relationship to interventions and recommendations were identified. The second section will describe the developmental process of building a pilot version of COMPASS using the Towards Healthy Outcomes framework, an evidence-based framework developed to help support consistent and strength-based intervention planning across the lifespan. In the third section of the presentation, we will summarize evidence collected through the Tool pilot. We will highlight community-based collaborative processes woven through all COMPASS development and implementation aspects. One of our clinic partners, Dr. Valerie Temple, will provide information on her role in supporting our research team, the challenges and the importance of developing an evidence-based resource that effectively communicates knowledge and recommendations for best practice.
Poster Session 2
October 24 | Poster Session 2
Join our poster event on 2 days to learn about the most recent research to support children with neurodevelopmental disabilities and their families.
All attendees are invited to share their research and network at the Poster Session. Posters were selected from abstract submissions based on relevance to early identification, early intervention and effective treatment and family support related to neurodevelopmental disorders.
Children with Autism Spectrum Disorder (ASD) exhibit an attentional deficit during learning tasks. Thus, teachers ensure they monitor the attentional behavior of ASD children to provide attentional support. The approach to monitoring attentional behaviors is mostly based on subjective measures which could be biased as children with ASD display attentional behavior differently. This research investigates objective measures of attentional behaviors peculiar to children with ASD by leveraging machine learning models and unobtrusive technologies: Person-specific and generalized machine learning models using facial expression and eye movement. Forty-six children (ASD n=20) and typically developing (TD n=26) took four different attention tasks, each using a desktop virtual reality application simulating a real classroom and we tracked their eye movement and facial expression in real-time. The generated data were preprocessed and fed into Support Vector Machine to classify attention and inattention. The evaluation of model demonstrated that the participant-specific model achieves better performance (AUC=0.998) than the generalized model (AUC=0.626). In addition, the comparison of the two models showed that the gaze-based model (AUC = 0.998) performed better than the face-based model (AUC = 0.957). Similarly, in the TD group, the gaze-based model (AUC = 0.950) performed better than the face-based model (AUC = 0.934). This study showed that children with ASD exhibit attentional behavior differently with unique eye movements and facial expressions. Also, eye movement behavior provides more information on attentional behavior than facial expressions. These findings stress the direction of model design from traditional one-size-fits-all models to personalized models in children with ASD.
Children with neurodevelopmental disorders (NDDs) or attention and executive functioning (A/EF) deficits are at increased risk of associated difficulties in personal, social, or academic functioning. Evidence supports the use of parent-mediated interventions to reduce maladaptive behaviors in children and utilizing a family-systems based approach within a cognitive intervention program can help facilitate real-world skill transfer. However, less is known about what predictors of intervention adherence are essential for clinicians and families to consider when evaluating group-based interventions. This study investigated child-, parent-, and family-based indicators of intervention adherence and overall readiness across three areas of intervention engagement/fidelity. Participants included 24 child-parent dyads with children ages 5-11 years (M = 7.83, SD = 3.71) having a diagnosed or suspected NDD. The Dino Island Parent-Child Cognitive Intervention Program (DI) utilizes a tablet-based ‘serious game’ to target A/EF using a series of exercises that parents and children complete together (3-4x per week for 30-60 minutes), and parents and children also engage in between-session skill development and practice. Parents receive psychoeducational training online and attend weekly parent support groups on the Teleroo® platform. Children completed a comprehensive battery of performance-based cognitive measures and parents completed a series of informant and self-report measures. Relationships between child-, parent-, and family-specific factors and intervention adherence will be discussed. Implications for intervention appropriateness across groups and factors will be discussed as well as recommendations for screening and onboarding protocols in similar intervention programs and studies.
Background: Missed appointments, defined as appointments missed without prior notification, are problematic in children’s rehabilitation services. Attempting to balance finite resources and manage waitlists, many CTCs in Ontario use policies and service delivery models which discharge families from services after missing a specified number of appointments. This does not provide opportunities to explore the cause of missed appointments. Clinically applicable findings from two studies presenting alternate approaches to the management of missed appointments are discussed.
Project 1 presents results of a policy analysis aiming to examine how the language of policy reveal discourse(s) around missed appointments, potentially impacting access to services and develops equitable policy recommendations. Clinical implications: This study analyzed 38 documents related to the management of missed appointments from 18 CTCs. Policy trends and recommendations to support equitable policy development will be shared.
Project 2 presents results of a case study aiming to develop, implement, and evaluate the Readiness Support Program (RSP) to support families who miss appointments and reduce the rate of missed appointments. Clinical implications: RSP was implemented at a CTC with 375 referrals over one year. 21 interviews were completed with clinicians and families. The rate of missed appointments was 6.09% prior to RSP implementation and 4.18% during implementation. Interviews shed light on the complexity in families’ lives and the balance between equity and efficiency in service provision.
Recommendations: Revised policies and processes for supporting families who miss appointments should be considered to increase equity, access and engagement in services.
Introduction/Background: A Learning Health System (LHS) is one in which science, informatics, incentives, and culture are aligned for continuous improvement, innovation and promotion of best practices for various stakeholders.
The Pediatric LHS for Neurodevelopmental Disorders (NDDs) is a collaborative co-design project initiated as a pilot at the Ron Joyce Children’s Health Centre (RJCHC) in Hamilton, to inform the creation of a Pan-Canadian Pediatric LHS for Neurodevelopment.
Description: The purpose this work is ultimately to break down the many silos that currently exist and hinder optimal healthcare for children with diverse needs.
The pilot will focus on children/youth 0-12 years receiving care at RJCHC, and will emphasize collaboration, co-design, and concurrent evaluation throughout its development. The evaluation of this system will be guided by the Quintuple Aim Framework for healthcare improvement, which focuses on five main domains: Population Health, User Experience, Provider Experience, Cost and Equity. The evaluation will promote continuous improvement in an adaptable and scalable system that is patient centred.
Implications: This project has the capacity to inform a significant change to the healthcare of children and their families across Canada, particularly those with NDDs. This work aims to generate a system that drives positive patient outcomes and delivers high-quality healthcare services that are rooted in the child and family experience. The collaborative, co-design approach, along with utilization of and improvement of existing healthcare infrastructure, will effectively breakdown siloed care.
There is a growing emphasis on the use of economic evaluation to inform funding of programs and services for children. Clinical, funding, and policy decision-makers increasingly rely on evidence from economic evaluation to support investment decisions. Basic principles of pediatric cost-effectiveness analysis (CEA) are presented in terms of data collection and measures, costing, outcome evaluation, analysis and knowledge translation. Principles are expounded with a focus on early interventions for autism and brain-based disorders. The economic evaluations ongoing as part of the CHILD BRIGHT SPOR research network are highlighted.
There is a need for objective, physiological measurements of brain health in both research and clinical settings for children with neurodevelopmental disabilities (NDD). Electroencephalography (EEG) is an increasingly popular tool to provide such indicators and to provide neurophysiological markers of longitudinal intervention guidance. The NeuroCatch Platform rapidly records and analyzes event-related potential responses using a portable EEG device to offer insights into key aspects of cognitive brain health. Researchers and clinicians have been increasingly interested in utilizing such tools as they are low-cost, non-invasive, and accessible to diverse populations and settings. Though the standardized scanning procedure is clearly outlined in the NeuroCatch manual, specific considerations must be made when working with children with NDDs. These children may present with behavioural and/or sensory difficulties and struggle with novel experiences, all factors that can make it difficult to successfully capture EEG data. The following poster will offer insights into our experiences with utilizing the NeuroCatch Platform with children with NDDs, and the lessons learned in optimizing the assessment environment to maximize child cooperation and successful scan completion. Ensuring a positive overall experience for the child and family is essential for establishing rapport and completing follow-up assessments, as well as eliminating noise in data collection to ensure accurate measures of cognitive brain health. We provide specific techniques and recommendations in the areas of pre-test preparation, child and parent involvement, technical considerations, and researcher approaches.
Background: Compared to children born at term, children born very preterm (≤32 weeks gestational age) are 6-8x more likely to have Developmental Coordination Disorder (DCD). DCD is a common neurodevelopmental disorder that significantly affects a child’s ability to learn and perform daily motor activities. Term-born children with DCD show white matter differences on MRI compared to typically-developing children, but it is uncertain if preterm-born children with/at risk of DCD show similar findings. Purpose: To investigate white matter microstructure (as measured by diffusion tensor imaging) of preterm-born children with/at risk of DCD compared to preterm-born and/or term-born children without DCD.
Methods: We conducted a systematic review of four databases (MEDLINE, CINAHL, EMBASE, PsycINFO). Two independent reviewers screened abstracts and full-texts using Covidence. Results: Of the 1482 screened articles, 12 met our inclusion criteria (n=7 comparing preterm-born children with/without DCD; n=4 comparing preterm children with DCD to term-born children; n=1 both comparisons). Compared to groups without DCD, very preterm-born children (3-11 years) with/at risk DCD showed differing whole-brain structural connectome properties, with higher network segregation, and significantly different anisotropy and diffusivity measures in various brain regions, including the corticospinal tract, thalamic radiations, cerebellum, and corpus callosum.
Discussion: Findings suggest that preterm-born children with/at risk of DCD have altered white matter properties compared to preterm and term-born children without DCD. Conclusion: Diffusion tensor imaging is a valuable tool for investigating the differing white matter characteristics of children with/at risk of DCD and may ultimately help identify those best suited for early intervention.
This project is a collaboration between a community-based project at Adopt4Life and Queen’s University to evaluate the implementation of a training program. Aggression toward Family/Caregivers in Childhood & Adolescence (AFCCA) is a pattern of behaviour in childhood or adolescence, characterized by aggressive behaviour by a child or adolescent towards family members and is sometimes experienced by individuals with neurodevelopmental disabilities.Adopt4Life implemented AFCCA training to support and guide caregivers and service providers in addressing aggression in the home. The training aimed at reducing the stigma associated with AFCCA, raising awareness of the issue, and teaches therapeutic and practical strategies.MethodsTo explore the satisfaction of the AFCCA training program, a post survey was undertaken.The specific aims of this survey were to:I. Evaluate the overall satisfaction of the participants,II. Determine if the participants found the strategies presented to be applicable and relevant in their home or practice, andIII. Determine if the implementation of suggested improvements to the training session are required.A mixed method data-analysis was undertaken to evaluate the quantitative and qualitative data. The quantitative data demonstrated a lack of diversity in participants, as majority were 45–54-year-old white women or female leaning and expressed a high satisfaction to the AFCCA training sessions. The importance of providing emotional support to family members and the implementation of practical strategies such as creating a circle of care were the most important findings.In conclusion, the participants expressed an overall high satisfaction, applicableness, and relevancy for the AFCCA training session.
This poster presents a storytelling tool for researchers and people with lived experience who are collaborating to co-design research. The tool was created by a group of experience experts and researchers as part of the Family Engagement in Research Course. Storytelling is an ancient form of communication that is universal across all cultures. Stories help us build memories, share empathy and perspectives, and humanize issues. By sharing stories, we can establish connection, trust, and safety, which are all essential when building relationships and an effective team. Using the tool can help to understand each other’s motivations, passions, and expectations toward the project. The tool includes a step-by-step guide of leading team members through a first session of introductions at the beginning of a research project, explains the benefits of storytelling and provides a set of targeted prompts with example stories. The tool is presented in the broader context of family engagement in research, emphasizing the value of including diverse experiences and expertise when producing and communicating knowledge.
ContextAccess to services, supports and systems and their fragmentation is a persistent issue for youth with neurodevelopmental disabilities and their families, increasing their barriers to societal participation. An integrated approach grounded in strong supports, backed by a solid service base and informed by sound policy can enable these individuals to navigate their daily life effectively. This integrated research project aims to address these issues and to improve the design and access to supports, services and systems essential to the well-being of youth with NDD across childhood and into adulthood.
We describe three areas of focus and research projects addressing them:
1.Supports: Through a micro-level lens (people and lived experiences), this initiative examines peer-to-peer mentorship models to create knowledge to reduce mental health challenges among youth.
2.Services: Working at a mezzo level (partnerships and resource sharing), this initiative addresses service gaps by advancing service availability through province-wide navigation capacity building, and trialling innovative models in diverse communities.
3.Systems: From a macro level perspective (disability rights and policy), this initiative aims to evaluate the eligibility and integration of services and supports to improve access to cross-ministry government programs.
Implications for Practice
The integrative approach will generate evidence, advance knowledge, and influence policy-making in the above areas, thus improving access to supports and services for youth and their families. The audience will learn about the importance of
collaborative, cross-sectoral work to enable better access to timely supports and services meeting the needs of youth and families.
Background: Canadian youth with disabilities and their families experienced significant challenges during the COVID-19 pandemic, due in part to the implementation of pandemic policy that failed to consider their needs. Moving forward, policy needs to be co-developed with stakeholders and individuals with lived experience to ensure it is equitable and inclusive. The objective of this project is to prioritize disability-inclusive policy as we move beyond the COVID-19 pandemic.
Methods: We will use an adapted Nominal Group Technique (NGT) process in virtual focus groups across Canada to prioritize recommendations. Focus groups will be comprised six to eight individuals from the following three categories: youth with disabilities, parents/caregivers of youth with disabilities, and representatives from community/non-profit organizations. We will use snowball and maximum variation sampling approaches to recruit participants. The NGT process will involve participants discussing, asking questions about, providing feedback on, and ranking a list of recommendations resulting from an earlier phase of this study.
Results: Focus groups will be held May-July 2023 and will produce a ranked list of disability-inclusive policy recommendations based on participant consensus. Recommendations will be targeted to many government ministries, including social services, health, and education, at both the provincial and federal level.
Conclusion and Implications: Ranked recommendations generated by this study will be disseminated to government, advocacy groups, and community organizations. These recommendations will have the ability to support an equitable policy response from governments that will enhance accessibility, inclusivity, and support for youth with disabilities and their families across Canada.
Introduction: Minority-language speakers (M-LS) face disparities in accessing healthcare services relative to majority-language speakers, particularly those with medical conditions like autism. Children/youth with autism represent 2% of Canadians and often have significant healthcare needs. However, little is known regarding the barriers M-LS on the spectrum face in accessing healthcare services in Canada.
Methods: This partner-engaged research will examine barriers to healthcare for M-LS across six Canadian sites: Maritimes, Québec, Ontario, Prairies, British Columbia, and Nunavut. This study is led by a pan-Canadian Working Group of stakeholders, with personal and/or professional experience with M-LS on the spectrum. They include members of Autism Alliance of Canada, researchers, caregivers, adults on the spectrum, clinicians and community organizations.
Focus Groups: First-hand experiences will be captured via a series of focus groups (total of 165 participants). Participants identify as the following: caregivers of children (between 0-6 years old) on the spectrum who are M-LS, adults on the spectrum who are M-LS, and clinicians, healthcare administrators and community organizations working with children on the spectrum who are M-LS. Semi-structured interviews will explore barriers/facilitators to accessing healthcare.
Data Analysis: Interviews will be videotaped and transcribed. Codes will be developed to identify themes based on responses. Using NVIVO, qualitative data analyses will examine barriers/facilitators nationwide, and compare responses across sites.
Conclusion: Findings will inform how autism service delivery can be more accessible and supports the advancement of an equitable National Autism Strategy. Policy briefs will be developed for provincial governments across the six participating sites.
Background: The Social ABCs is a parent-mediated intervention developed for toddlers 12-36 months who have emerging autism spectrum disorder (Brian et al., 2016; 2017; 2022). We have identified a need to refine the Social ABCs for use with infants 6-15 months.
Objective: To describe the development of the Infant Social ABCs. We present (1) parent fidelity (2) babies’ responsivity and (3) parent-satisfaction and self-efficacy.
Methods: Adaptations involved changes to the Social ABCs curriculum, coaching strategies, program duration, and session length. We delivered virtual coaching to six dyads (two more are in progress). Infants were aged 9-15 months and showing clinically significant signs of ASD. Video-recordings of infant-parent interactions were coded at baseline and post using established coding schemes and also novel indices. Parents reported on satisfaction and self-efficacy at post.
Results: Video-coded data (3 to date) revealed increases in parent fidelity from baseline (M = 27.6% vs. 74.9%,). Increases were observed in infants’ responsivity (M = 26.6% vs. 47.7%;), rate of checking-in with parent (M = 2.17% vs. 3.9%;), and shared smiling (M = 16.0% vs. 30.3%;). Paired samples t-tests revealed a significant effect for parent fidelity (p = .03). Trends approached significance for gains in infant responsivity (p = .08), check-ins (p = .11), and shared smiling (p = .09). Notably, babies were rarely sharing smiles at baseline despite caregivers offering loving smiles. Shared smiling increased for some, but not all infants, despite increased check-ins.
Background: Fragile X Syndrome (FXS) is the most common form of inherited autism and intellectual disability. There is no cure for FXS. Evidence in the literature has implicated the dysregulation of protein synthesis as a key mechanism of FXS. The extracellular signal-regulated kinase (ERK) signaling pathway has established critical roles in protein synthesis and synaptic plasticity. However, there are conflicting reports in the literature on synaptic levels of ERK and protein synthesis, and a lack of investigation in females. ERK signaling is also of interest for potential therapeutics. PD0325901(PD) is a selective ERK inhibitor with demonstrated reversal of core deficits in a FXS mouse model in our lab.
Methods: I validated a reliable method of isolating synaptosomes, subcellular fractions of synaptic terminals, from mice brain tissue and a method of quantifying de novo protein synthesis levels, Surface Sensing of Translation (SUnSET).
Aims & Results: My research aims to first quantify and compare ERK pathway activation and protein synthesis levels in synaptosomes between the FXS model and wildtype mice. My initial data demonstrated downregulation of de novo protein synthesis in both sexes of the FXS model, and prominent sex differences in ERK pathway activation. My second aim evaluates the effects of PD administration on protein synthesis levels in synaptosomes. There were no significant differences in protein synthesis rates with PD treatment.
Conclusion: My results indicated that the relationship between ERK pathway activation and protein synthesis rates at the synapse is likely complex. Future investigations will expand to include other signaling pathways.
Introduction: Attention-deficit/hyperactivity disorder (ADHD) affects executive functioning. Mega Team (MT), a computerized cognitive rehabilitation, targets these functions, but its cost-effectiveness is unknown. Understanding its impact on resource use and health outcomes can inform treatment and policy decisions.
Purpose: This study estimated the incremental cost per quality-adjusted life-year (QALY) gained for MT compared with treatment-as-usual (TAU) in children with ADHD from the perspectives of the family, public payer, and society over a six-month horizon.
Methods: Children(6-12 years) received MT or TAU. Resource use was measured at baseline and six months. Health-related quality of life was measured using the Health Utilities Index(HUI) at baseline, five weeks, and six months to determine QALYs. Costs for each service were determined by multiplying the frequency, duration, and unit price. From each payer perspective, total costs per child, mean and median costs per group were calculated before unblinding trial data. Differences in costs and QALYs between groups will be tested using independent t-tests.
Findings: Children(n=185) were predominantly male(76.2%) with a mean age of 9.8 years. At baseline and six months, the most reported resources across both groups were health services, school support, and medications. Costs for each group will be symmetrized. The incremental cost-effectiveness ratio (ICER) will be calculated as the incremental cost per QALY gained for MT compared to TAU.
Conclusion: This cost-effectiveness analysis will provide evidence to inform treatment decisions for children with ADHD and public funding decisions for this intervention.
Background: Neurodevelopmental disabilities (NDD) have been increasing in prevalence, with concurrent demand for governmental supports and services to improve wellbeing. To access these services, an individual must have an NDD diagnosis. The type, or absence, of diagnosis impacts access to services. Diagnosis-based criteria are often used, however specific
classification of NDD is not well defined beyond classical DSM definitions. There has been little exploration of whom gets diagnosed with NDD and whether supports are accessed.
Aim: To describe a classical NDD definition and a functional needs neurodisability-based definition and contrast utilization of program supports in British Columbia.
Methods: A review of the literature was conducted to ascertain different methods of defining NDD using diagnosis codes. Trained clinicians evaluated the codes, and a consensus discussion led to a final definition.
Using these codes, individuals with classical NDD diagnoses and with neurodisability-based diagnoses were determined using linked administrative data. Access rates for several governmental disability programs were then calculated for this cohort using population data from British Columbia.
Results: Using a broader, neurodisability-based definition doubles the prevalence of NDD compared to the classical diagnosis-based definition. There is not universal realized access to governmental supports, even for those diagnosed at a young age.
Conclusions: How NDD gets classified has a large effect on the number which can potentially access governmental supports. There is a gap between potential and realized access of services using different definitions, indicating that some who likely have an NDD are not obtaining supports.
Background information: This infographic and checklist explores and identifies common facilitators for both researchers and family partners when engaging in research. It is designed to strengthen partnerships, ensure inclusivity, create transparency and clarity, and open up more opportunities for researchers and family partners to engage in projects together. Description of the project: The aim of this knowledge translation (KT) tool is to ensure that the integrated team is successful in creating a safe space for engagement, facilitating each team member’s full and equitable participation in the project and clarity of their roles and expected contributions. This tool explores four shared facilitators to help create a positive research experience for researchers and families: (1) Create An Inclusive Environment; (2) Address Logistical Concerns; (3) Define Roles and Activities; (4) Use Simple Language. Each of these facilitators is outlined in plain language and includes practical guidelines for its application along with checklists. The printable combined checklist for all facilitators is presented on the last page.Implications for practice: Integrated research teams can utilize this KT tool at all stages of research projects and use it as a focal point to ensure each team member’s positive experience across the four domains. Recommendations: Roles, expectations, or circumstances of team members may change over the course of the project. We recommend addressing this KT tool regularly, individually and as a team, to identify potential areas of improvement and to further facilitate positive engagement and long-lasting equitable relationships within the research team.
Introduction: Autistic children have been historically underrepresented in the co-design process of developmental tools. One of the primary challenges they face is in the realm of collaborative play due to limitations in social and communication skills.
Purpose: This study presents a co-design methodology for the development of a multisensory tool to facilitate collaborative play among autistic children. The research aimed to incorporate the perspectives of researchers, specialists, and end users in the development process, thereby creating a product that is more in tune with the unique needs of the autistic children.
Methods: The co-design methodology followed in this study was developed based on a contextual inquiry study including 18 autistic children. These sessions took place in a disability center and an inclusive school in Qatar. The research methodology was implemented in sequential and interconnected stages which involved logistics setup, familiarization, pair interaction, co-design, and testing.
Findings: Although not all phases were achieved, the co-design methodology provided valuable insights into the unique needs and capabilities of autistic children in collaborative play. The process allowed the stakeholders to effectively contribute to the development of the multisensory tool.
Conclusion: This study demonstrates the potential of a co-design methodology in creating more effective and inclusive tools for facilitating collaborative play among autistic children. Future research should aim to validate and enhance this approach to ensure its adaptability to varying contexts and user needs. This study underscores the importance of incorporating the voices of traditionally underrepresented demographics in the co-design process.
Easy Read: Language is an accessible and inclusive method of presenting complex information in an accessible format. It goes beyond using plain language. Accessibility advocates are increasingly promoting the use of Easy Read Language to engage persons with neurodevelopmental disabilities and their caregivers when accessing services. While this accessibility solution is undoubtedly welcomed by the end-users as it promotes the readability of digital and print documents, very little is known about its actual use in research and about its actual effects in improving their engagement in the research process.
In response: to this research gap, this poster presents the findings of a scoping review of 12 papers aiming to shed light on the current usage of easy-read language and its effectiveness in engaging children with neurodevelopment disabilities and their families in research.
Based on the findings, this poster proposes recommendations on how to increase and improve the use of easy-read language in research to advocate for better engagement, accessibility, and inclusivity for all families and children with developmental disabilities.
Brain computer interfaces (BCI) non-invasively detect intentional changes in brain activity to allow users to interact with their environment. Although the training of the user to generate these changes is a key determinant of successful BCI performance, how the brain changes during this learning process in children with severe disabilities has not been characterized. The present study aims to characterize such changes as children with quadriplegic cerebral palsy learn to control a BCI-operated power mobility system.
Two pediatric patients (male, age 11; female, age 7) with quadriplegic cerebral palsy have been analyzed within the BCi-Move study, in which children with severe physical disabilities learn to operate a power mobility wheelchair over 12 sessions using BCI. Continuous EEG recordings were collected using the commercial-grade EPOC Flex Cap. Imaginary part of coherency was used to calculate functional connections between EEG channels, and a proportional threshold or minimum spanning tree was applied. Graph theory metrics were then calculated and compared between Session 01 and Session 12 for each participant.
Degree centrality and betweenness centrality changes showed early general trends of centrality that decreased in the posterior regions of the brain and increased in the frontal regions. Clustering coefficient calculations showed identifiable changes throughout the network, but no detectable patterns between participants.
Preliminary data has been analyzed, and data acquisition and analysis are ongoing. Exploring brain network changes in children participating in the BCi-Move trial will offer insight into how the brain may reorganize with continuous BCI training.
Introduction and Purpose: Individuals on the autism spectrum commonly have Decreased Sound Tolerance (DST), leading to negative reactions and distress when exposed to aversive sounds. This project aims to evaluate the effect of different intervention techniques on the comfort level of autistic individuals in the presence of aversive sounds.
Methods: We compared masking the aversive sounds with music and white noise, or selectively suppressing the aversive sound with an Artificial Intelligence-based technique. The testing sessions are conducted in two different studies: 1) auditory-only and 2) auditory plus visual stimuli in a virtual reality (VR) environment.
Testing sessions for study 1 were conducted with n=10 autistic adults who reported DST (Two sounds were played: siren; dog barking).
Data collection for study 2 is ongoing (projected n=20 autistic youth with DST). The evaluation metrics include subjective evaluations through user feedback and exit interviews.
Results: Preliminary results from study 1 indicated that the comfort level of participants was increased while using the filtering intervention technique compared to masking with music or white noise. For siren, improvements in comfort ratings relative to baseline (M=3.72) were found for white noise (M=2.67), music (M=2.78), and filtration (M=2.61;ps)
Background: Auditory hypersensitivity is a prominent symptom in Fragile X Syndrome (FXS), the most prevalent monogenic cause of autism and intellectual disability. FXS arises through the loss of the protein encoded by the FMR1 (Fragile X Messenger Ribonucleoprotein 1) gene, FMRP, required for normal neuronal circuit excitability. In the brainstem, FMRP is necessary for normal development of acoustic reactivity, and its loss has been implicated in audiogenic seizures (AGS) in Fmr1 knock-out (KO) mice, modelling auditory hypersensitivity and seizures in FXS patients.
Purpose: The present study investigated the correlation between auditory brainstem function of Fmr1 KO mice and behavioral expression of AGS during early (postnatal day P19, infancy) and late (P33, adolescence) auditory development.
Methods: We tested responsiveness of select auditory pathway elements through Auditory Brainstem Response amplitudes; and neural synchronization to amplitude envelopes of modulated acoustic stimuli through Auditory Steady State Responses. AGS was scored for severity during 5-minute exposure to loud sound.
Results: During infancy, higher AGS activity in Fmr1 KO mice was accompanied by increased responsiveness to acoustic stimuli and stronger neural synchronicity in the lower auditory brainstem. With age, both AGS susceptibility and exaggerated acoustic stimulus-evoked activity in the lower auditory brainstem subsided.
Conclusion: Our findings support evidence that AGS activity relies upon hyperexcitability in the auditory system, particularly in the lower brainstem, possibly due to delayed maturation. A better understanding of FXS-related circuit and behavioral symptoms of auditory processing across development provides the potential to identify therapeutic strategies to achieve auditory function recovery in FXS.
Background: There is growing recognition of the importance engaging families in childhood disability research around the world. In 2018, a Canadian-based 10-week online course on Family Engagement in Research (FER) was co-created with researchers and families. Since then, 13 cohorts and 361 family members and researchers have been trained from 18 countries. Over the past two years, it has been scaled to the Netherlands by collaboratively adapting and piloting the FER Course.
Description: This presentation provides an overview of the adaptation of the FER Course to the Dutch context. First, we will highlight how the FER Course fills a training gap in family engagement in child health research. Next, we will describe the adaptation and translation process to create a Dutch version of the course. This includes the methods, challenges, and lessons learned by the researchers and family members involved in this process. Then, we will compare the findings from two separate pilot studies on the Canadian and Dutch cohorts. The studies demonstrate similar findings, offering anecdotal evidence of the feasibility and scalability of the FER Course across cultural contexts.
Implications: Our goal is for FER training to become more widely available by culturally adapting the course, rather than ‘re-inventing the wheel’. The presentation is an opportunity to deliver this message on an international stage and to initiate partnerships with researchers and families interested in family engagement in child health research.
Children with neurodevelopmental disorders (NDDs) experience attention and executive function (A/EF) difficulties, which negatively impact life trajectories. Traditional A/EF assessments utilize performance-based tasks (PBs) and/or informant measures, but these approaches are often limited or poorly correlated. Neuroimaging tools, such as electroencephalography (EEG), have emerged as a promising approach to evaluating A/EF in children. The NeuroCatch® Platform is a portable EEG device that provides rapid, objective, physiological measurements of brain function. It employs three validated event-related potentials (ERPs; N100, P300, and N400), with P300 being most closely associated with A/EF. This study aimed to address the gap in the literature examining the association between PBs, informant reports, and ERPs in assessing A/EF in children. Forty children (ages 5-12 years) with NDDs were assessed with a comprehensive battery of A/EF PBs, informant measures, and the NeuroCatch® Platform. Preliminary results revealed limited correlations between PBs and informant reports, except for working memory. N100/N400 amplitudes/latency and P300 amplitudes were significantly related to PBs of working memory, inhibition, and/or attention, but not informant reports. P300 latency correlated with PBs and informant reports, particularly for working memory and attention. Triangulation of assessments is important for accurate diagnoses and prognoses. This study highlights both similarities and differences in the relationship between PBs, informant measures, and ERPs. Specific associations between these measures and their potential for triangulating A/EF assessments will be discussed.
Background: Children with disabilities are at a high risk of developing mental health issues with detrimental consequences. Clinicians have reported a high demand for this population to receive early and targeted interventions.
Objectives: To map-out and describe existing and locally-available services/resources, and to explore mental health “red flags”, barriers/facilitators, and impact of care from the perspectives of pediatric clinicians and caregivers of children with disabilities. Methods: A mixed-method study design, including an environmental scan, surveys, and semi-structured interviews was undertaken. Results: Several locally-available services (n=81) were identified, where 47% had specific admission criteria (e.g., age) and fewer provided online family-centered (20%) and follow-up (16%) supports. Gaps emerged for certain population groups, including children with cerebral palsy (0% of targeted services). Pediatric rehabilitation specialists (n=16) and caregivers (n=8) identified common “red flags”, including behavioral changes, academic “slide”, negative self-talk, among others. Over 80% of clinicians reported being unprepared to manage mental health issues and having little information on existing resources. Only 28.5% of caregivers felt that they are adequately informed about services, and 50% were not satisfied with care received. For 42.8% of families, mental health services were declined for not meeting the admission criteria. Lack of access and long waitlists were the most common reported barriers. Proposed solutions included targeted care for children across different ages, with emphasis on transition stages (e.g., adolescence); broader admission criteria; and family-centered approaches. Conclusion: Findings could contribute to the development of an action plan to ameliorate mental health care for this population.
Background: Physical activity (PA) has many benefits and has been associated with improving sleep and constipation. Robotic walking may facilitate PA for children unable to walk who are known to have limited PA.
Purpose: To evaluate PA and related outcomes following one month of robotic walking.
Hypothesis: Activity levels will increase and sequalae of inactivity will decrease following 1-month of robotic walking.
Methods: As part of a larger prospective cohort study, parent-proxies filled out the Habitual Activity Estimation Scale (HAES), Patient-Reported Outcomes Measurement Information System (PROMIS®) for Physical Activity and Sleep Disturbance t-scores following 1-month of Trexo robotic walking. Descriptive statistics (median change and range) are presented for these preliminary results. A weeklong bowel movement diary was completed before and during the first month of training.
Results: Seven participants (ages 4-21) who are unable to ambulate independently in community settings were included. There were six participants who reported improvements in physical activity in both measures: HAES precent active time increased on weekdays 9.2 (5.7-14.0) & and PROMIS PA increased 0.9 (0.4-17.4). Results for changes 2.1 (-4.7-3.4) in sleep disturbance were inconsistent. Four families completed bowel diaries at both time points with increased frequency and/or decreased medication use in all 4 participants.
Conclusion: Robotic walking may improve PA and bowel function in individuals with mobility impairments. Data collection after a longer training duration and in more participant is needed to determine if robotic walking has an impact on PA and related outcomes.
Background: Persons with disability (PWD) in Canada experience systemic barriers to full participation in society, such as unequal participation in the labour force, workplace, and education, social services and support needs. Only 49% of PWD in Canada have a job compared to 79% employment rate of people without disabilities. This rate is even lower in Quebec and only 40% of PWD have a job.
Purpose: The objective of this project is to identify relevant evidence on accessibility to employment for youth with disabilities in the province of Quebec.
Methods: We conducted an environmental scan of Quebec policies and programs and a rapid review of
research articles about employment of youth with disabilities in Quebec. The environmental scan identified best practices recommendations, programs, national strategies, action plans, policies, guidelines, and regulations in Quebec at the provincial, regional, and municipal level. Scientific articles included practices/programs or research projects about accessible youth employment that were conducted primarily in the province of Quebec.
Conclusion: Several programs and recommendations exist to support the employment journey of youth with disabilities. Some research projects identified barriers and facilitators to accessible youth employment in the province of Quebec. The findings can be used by federal/provincial and local governments and organizations to develop standards, guidelines and policies to optimize employment outcomes for youth with disabilities. This review can also inform the development of resources to provide knowledge to youth with disabilities and their families about their rights, and describe different available employment programs which could promote their employability.
Introduction: Children with severe physical limitations often lack the volitional movements required to control existing access technology power mobility such as a joystick or switches.
Purpose: To determine how BCI technology can provide such children exploration of movement through personalized power mobility goals.
Methods: Methods are informed by parent feedback and priorities, fitting with patient- and family-centered values. Personal mobility goals are identified and ranked, then participants complete a 12- session training program of customized, playful activities to develop both power mobility and BCI skills aligned with their goals. The BCI technology uses an imagined action paradigm, requiring training of personalized “mental commands” at the beginning of each session. At the end of each session, the participant’s perceived workload (modified NASA-TLX) and their power mobility skill progression (ALP) are collected. Pre- and post-study participation levels are documented.
Results: Data collection is ongoing. Family feedback facilitated an instrument substitution as well as accommodations in the study regime. Thus far, participants have shown an improvement in learning power mobility skills using BCI and there was a reduction in the mean mental demand using BCI as an access method. Participants indicated frustration primarily due to technical issues.
Implications for Practice: Early results suggest that BCI technology can enable power mobility exploration, and that power mobility can be motivating for BCI skill development. Further research is required to remove technical barriers and reduce duration of BCI training.
Introduction. Pain and emotional well-being information of youth with developmental disabilities are often overlooked. Two systematic reviews are reported, which separately identify i) self- and observer- reported pain assessment in youth with brain-based developmental disabilities (BBDD); ii) methods to obtain direct self-expression of emotional well-being from youth with motor and communication disabilities.
Methods. Comprehensive searches were conducted (August 2019: emotional well-being; August 2022: pain-assessment). Both reviews adhered to PRISMA guidelines. Eligibility criteria of the earlier review consisted of English peer-reviewed articles including youth 5-25 years-old, which used assessment methods alternative to speech, paper and pencil report, or standardized keyboard use (e.g., eye-gaze assistive devices) and well-being information (e.g., quality of life). Eligible studies of the latter review were English peer-reviewed articles assessing pain in youth 3-24 years-old with any BBDD (e.g., Autism).
Results. Of 10,986 non-duplicate articles in the earlier review; 49 studies were included. Most studies used high-technology (i.e., computer-based) for self-expression. Familiar partners (e.g., parents) supported youth self-expression in eighteen studies. Pain specific information was not reported. Of 10,372 non-duplicate articles in the latter review, 707 articles were included. Findings revealed a narrow focus on pain intensity (n=304;47%) and observer-report (n=175;32%). Minimal studies assessed well-being outcomes alongside acute (n=7) and chronic (n=21) pain intensity.
Conclusion. Together these reviews inform one another and significantly add to the literature in diverse fields. Novel self-report approaches may be used to support pain assessment. Future researchers may integrate pain assessment within the more holistic understanding of well-being.
In the Pediatric Intensive Care Unit, parents of comatose children suffering from severe brain diseases are left to wonder if their child will ever awaken. While no physical signs of consciousness may be visible, these children may have some retained cognitive function (seen via EEG in response to verbal commands), a condition known as cognitive-motor dissociation (CMD). Despite its occurrence in 20% of adults with disorders of consciousness (DoC) like coma and its potential for predicting good outcomes and enabling simple communication via brain-computer interfaces (BCIs), children have been entirely neglected from CMD and BCI research. Detection of brain networks responding to parental comfort in these children may be one way to uncover new EEG markers that can aid early outcome prediction and potentially enable family communication in the most critical of circumstances. In this work, video/EEG data was collected from a 13-year-old DoC patient.
Three video-states (parental comfort, presence, and absence) were correlated with EEG analysis using the Highcuhi Fractal Dimension (HFD), a complexity measure. Two distinct HFD value clusters were identified: higher HFD and parental presence were associated with one cluster, lower HFD and parental absence with the other. This preliminary research suggests parental comfort may stimulate detectable EEG changes in children with acute DoC, potentially serving as a prognostic marker and eventually aiding BCI-based communication.
This work is critical to enhancing family connection and communication in these critical circumstances. Future studies can further explore the utility of HFD and other EEG features in this regard.
Background: Family engagement in research (FER) is a growing field in Canada with leadership roles being established to support meaningful engagement of patients and families at project, organizational, and systems levels. However, there are limited training opportunities to support emerging FER leaders in their efforts to promote meaningful engagement in their organizations or communities. To address this training gap, family leaders and researchers co-developed the FER Leadership Academy.
Description: This presentation provides an overview of the FER Leadership Academy and the process of its co-development and co-facilitation. We draw upon our interdisciplinary team’s reflections on the co- development and implementation of the first two cohorts (21 family and researcher graduates to date). The course is grounded in five core competency areas for FER leadership, drawn from multiple sources of literature, lived experience and expertise: self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship. The course includes weekly synchronous sessions, small group mentorship, and an individual project in the form of a FER Leadership Learning/Action Plan and Elevator Pitch. Using examples of course activities and assignments, we describe how participants build knowledge and skills in the identified FER leadership core competencies.
Implications: The FER Leadership Academy is supporting leaders who are championing meaningful family engagement at a national and international level. In this presentation, we will share the FER Leadership Academy model, discuss how the five competencies relate to FER leadership, and describe how they can be used to ground capacity building efforts in this area.
Background: Pediatric stroke is a neurological injury caused by the occlusion or rupture of cerebral blood vessels and can be classified as perinatal
Introduction: The number of youth living with childhood-onset disabilities and requiring transitional support to adult community and rehabilitation services is increasing; however, the facilitators and barriers to undertaking and sustaining these services are not well established.
Purpose: To explore the facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care.
Methods: Qualitative descriptive study. Interview data were collected with youth (n = 11) and family caregivers (n = 7). Data were coded and analyzed using thematic analysis.
Results: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access.
Conclusions: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. A parallel project funded by KBHN is currently occurring among younger, pre-transition youth and their parents. These foundational projects contribute important considerations for the development and implementation of evidence-based, patient- and family-informed transition interventions.
Background: There is evidence to suggest that clinical practice has outpaced the literature regarding mindfulness in pediatric rehabilitation. The aim of this study was to explore the experiences of occupational therapists who opt to incorporate mindfulness into their clinical practices with children and youth.
Methods: Hermeneutic phenomenology was adopted as the methodology of the study. The theoretical framework made use of a Heideggerian-informed phenomenology of practice. Eight North American occupational therapists participated in 90–120-minute semi-structured interviews. The interviews elicited first-hand accounts of mindfulness with paediatric clients, including those with developmental disabilities. Interviews were transcribed verbatim and analyzed using Finlay’s four-step approach.
Results: Six themes were identified in the data: drawing from personal practice, enhancing participation, fostering healthy habits, adapting for children with disabilities, keeping it playful, and doing with. Many participants identified specific considerations for children with developmental disabilities, such as Down Syndrome and Autism.
Conclusion: The findings of this study offer insights for therapists who are considering incorporating mindfulness into their practices with children and youth. Further, insights with regard to adaptations to mindfulness for children with developmental disabilities are particularly salient in the work. This research will be of interest to clinicians, families and caregivers striving to address the unique needs of children with developmental disabilities.
Background: Parent-training interventions have a growing evidence-base for treating children with neurodevelopmental disabilities (NDD). The Strongest Families Neurodevelopmental (SF-ND) Parenting Program is a virtual parent-training intervention that aims to improve health outcomes for children and families.
Rationale: There is a need to better understand the healthcare and social service usage of this target population, the associated costs, and health-related quality of life.
Objectives: To study and compare the resource use for the SF-ND coached intervention to the self-managed and control groups, as well as the incremental cost for the SF-ND coached and the self-managed intervention, compared to the information-only group per quality-adjusted life year gained from the payer perspectives of families, the public sector, and society.
Methods: This study followed 330 caregivers over three 5-month periods. Three groups were studied: 1) SF-ND coached; 2) self-managed; and 3) information-only. Resource use data were collected using the Resource Use Questionnaire to determine total costs per child. Effectiveness was measured using the Health Utility Index. The incremental cost effectiveness ratio summarized the findings as the ratio of the difference in mean cost per family between groups to mean effectiveness between groups.
Results: Results available to date indicate that the estimated mean cost per family over 10 months from the familial payer perspective was $2508 CAD (SD $7001) for the SF-ND coached group and $1757 (SD $2554) for the control group.
Conclusion: These findings add to the growing evidence base for economic evaluations of NDD programs for children.
Introduction: Up to 88% of autistic children have motor difficulties that interfere with daily life, yet they are rarely the focus of therapy. These children likely have a co-occurring condition called developmental coordination disorder (DCD). There is an effective therapy to help children with DCD learn motor skills, but it is largely unknown if this treatment is effective for children with autism. Purpose: This study aimed to assess the effectiveness of Cognitive Orientation to Occupational Performance (CO-OP) intervention in improving motor skills in children with co-occurring autism spectrum disorder (ASD) and DCD. The research also investigated whether the motor gains were sustained three months after therapy.
Methods: The study employed a randomized waitlist-controlled trial with 26 children (ages 8-12y) diagnosed with ASD (without intellectual disability) and suspected/diagnosed DCD in the greater Vancouver area. The treatment group received CO-OP intervention once a week for ten weeks, focusing on three child-selected motor goals. The waitlist group received the intervention three months later. Outcome measures included the Canadian Occupational Performance Measure (COPM), Performance Quality Rating Scale (PQRS), and the Bruninks-Oseretsky Test of Motor Proficiency 2nd ed. (BOT-2).
Results: The analysis revealed significant improvements in all outcome measures (p < 0.0125). Follow-up showed notable improvements in self-rated performance and satisfaction on COPM, as well as motor quality on PQRS. Overall improvements from pretest remained evident despite a slight decline at follow-up.
Conclusion: CO-OP intervention effectively improved motor skills in children with co-occurring ASD and DCD, indicating its potential as a valuable therapeutic approach.
Introduction: Previous research suggests that individual therapist characteristics including gender, education, and experience delivering mental health (MH) services are important predictors of their confidence, knowledge-level, and intentions to provide evidence-based MH interventions for autistic children in community-based settings (Nakamura et al., 2011; Roudbarini et al., 2022).Purpose:To explore these relationships within a unique sample of community-based MH and developmental service therapists trained to deliver an evidence-based socioemotional intervention, Secret Agency Society: Small Group Program (SAS:SG) for autistic children.
Hypothesis: Therapists with more education and experience will report higher confidence, knowledge, and intention to work with autistic clients with MH and socioemotional difficulties.
Methods: Therapists (N=31) were recruited from an ongoing study evaluating the SAS:SG across three agencies. Therapists were trained to deliver SAS:SG (90.3% women, Mage=32.03 years, SDage=7.95 years), completing surveys before and after training.
Results: Preliminary results suggest that therapists with more professional experience felt more knowledgeable (r=.60,p=
Background: Assessment and implementation of home-based parent-led interventions have proven challenging due to the lack of adequate communication platforms. Fidelity assessment and parent coaching are critical components of home-based delivery and clinical trials, necessitating secure platforms that facilitate information gathering and sharing. Past trials of a cognitive rehabilitation program for children with neurodevelopmental disorders indicated a 17% loss of fidelity data and high levels of attrition (45%) Description: Teleroo2™️ (an innovative digital health platform designed to facilitate team communications for children with complex needs) was utilized to support families better and assess implementation. Families in clinical trials were onboarded to Teleroo2™️, which permitted resource sharing, videoconferencing, fidelity assessment, and one-on-one conversations with a 24-hour response time. While delivering the intervention, parents participated in 1-hour weekly group sessions, focused on questions/concerns shared through Teleroo2™️. Video calls were recorded for coding of parent concerns, questions, and comments, to identify intervention facilitators and barriers.
Implications: Teleroo2™️ provided an integrated approach to parent-researcher communication. Parents expressed that they felt supported and satisfied with the information and support/communications delivered by the research team. The platform was user-friendly, with a 100% first-time onboarding success rate. Rates of attrition and loss of fidelity data were significantly reduced with this implementation. Success with Teleroo2™️ was indicated by frequent messaging, document sharing, and active engagement in video calls with participants throughout the study. The benefits of using Teleroo2™️ for clinical trials, barriers, and facilitators, will be expanded on in the poster.
Introduction: One in ten children worldwide has a disability. Among them, cerebral palsy (CP) represents the most prevalent physical disability, which affects 3/1000 children. One third of children with CP cannot ambulate independently, and yet there exists no gold standard intervention to address the balance and postural control impairments that underlie these mobility challenges. Robotic gait training is a promising new intervention for addressing mobility impairments. The Trexo robotic gait trainer is one such device, which can facilitate over-ground mobility among children of any ability.
Purpose: This in-process study will examine the feasibility, usability, and impact of an intensive and structured Trexo training program for children with mobility impairments who are referred for clinical rehabilitation at the Alberta Children’s Hospital.
Methods: This study will examine feasibility by assessing the number of enrolled participants and duration of training time and clinician time; usability via System Usability Scale scoring completed by rehabilitation clinicians; and impact via the Goal Attainment Scale to assess whether patient and family functional goals were met through program completion. Data collection is ongoing, with initial results expected by fall 2023.
Implications: Exciting innovations in technology and rehabilitation practices are needed to address the unique functional and mobility needs of the heterogenous population of children with CP and other neuromotor disorders. This project aims to kickstart a new clinical program through which the novel Trexo robotic gait trainer can positively impact patient and family quality of life through achievement of individualized functional goals.
Better Nights, Better Days for Children with Neurodevelopmental Disorders Program: So What Happens After the RCT?
October 24 | Better Nights, Better Days for Children with Neurodevelopmental Disorders Program: So What Happens After the RCT?
Sleep problems are highly prevalent and impactful on children with NDDs and their families. Dr. Corkum, child psychologist and researcher, will introduce the Better Nights, Better Days for Children with NDDs (BNBD-NDD) program, an online, transdiagnostic, self-guided behavioural sleep intervention. She will review the steps taken to develop this program and the preliminary results of a Canada-wide randomized controlled trial (RCT). Alzena Ilie, Clinical Psychology PhD student, will discuss the results of exit interviews with 20 parents who completed the RCT of BNBD-NDD. This presentation will highlight the barriers and facilitators that affect the Reach, Effectiveness, Adoption, Implementation, and Maintenance of the program. Katie Vaughan, BNBD-NDD Project Manager, will discuss how feedback from parents who participated in the RCT and exit interviews was used to modify the BNBD-NDD program. This presentation will highlight the modification process, as well as preliminary findings of the ongoing implementation study. Mya Dockrill, incoming Clinical Psychology PhD student, will discuss how an EDI lens can be applied to the BNBD suite of programs. This is particularly relevant given that there is a higher prevalence of sleep problems among children from racial and ethnic minorities, resulting in the need for equitable and inclusive access to sleep health care. Jocelyn Paul, a Mi’kmaw Clinical Psychology PhD student, will share the results of a scoping review examining the current literature about sleep and Indigenous peoples and discuss the next steps including learning circles and usability studies. The results of these studies will be used to determine if BNBD is able to be modified to be culturally appropriate and usable in this population. The symposium will conclude with lived experience discussant, Connie Putterman, reflecting on key points from the perspective of a parent of a child with NDD and insomnia.
The Family Engagement in Research Training Program: An Opportunity to Connect, Collaborate, and Co-Create Solutions to Common Challenges in Patient-Oriented Research
October 24 | The Family Engagement in Research Training Program: An Opportunity to Connect, Collaborate, and Co-Create Solutions to Common Challenges in Patient-Oriented Research
In 2018, family partners and health service researchers at CanChild Centre for Childhood Disability Research at McMaster University partnered with Kids Brain Health Network to launch the Family Engagement in Research (FER) Course. Over the past five years, this 10-week online course for researchers and family members/caregivers with lived/living experience has evolved into an internationally recognized multi-faceted training program. Our program is unique in that it is designed to nurture connections, collaboration, and co-creation, and to build trusting relationships between people with lived/living experience and researchers. We achieve this by enabling co-learning in a safe and welcoming environment. In this workshop, we will facilitate roundtable interactive solutions-focused discussions about strategies to address two common barriers to engagement identified from graduates and instructors of the FER Course: i) readiness to partner in research for family partners and researchers; and ii) creating psychologically safe spaces and welcoming environments for partnership. Workshop presenters and small group facilitators include FER Course developers, instructors, coordinators, knowledge brokers, and graduates who are both researchers and family partners. Workshop participants will be invited to join an ongoing FER Community of Practice to support continued connection, collaboration, and co-creation opportunities. This workshop can lead to the identification of strategies and development of collaborative working groups that will support the advancement of best practices in family engagement in research across Canada.
Individual Orals #3
October 24 | Individual Orals #3
ORAL PRESENTATIONS:
- The forgotten caregivers: A qualitative study exploring the experience of fathers of children with medical complexity
- The Role of Emotion Regulation and Joint Attention in the Emergence of Autism Spectrum Disorder: An Infant Siblings Study
- Using Machine learning to identify clinical and socioeconomic predictors of acute care use among medically complex children in Alberta
- Exploring the relationship between emotion and features of eye-gaze in youth with severe motor and communication impairment (SMCI) and typic
- Comparative Strengths and Challenges on Face-to-Face and Computer-Based Attention Tasks in Autistic and Neurotypical Toddlers
Pediatric Cognitive Rehabilitation: Implementation lessons learned across diverse contexts
October 24 | Pediatric Cognitive Rehabilitation: Implementation lessons learned across diverse contexts
Attention and executive functions (A/EF), critical for academic success and quality of life, are almost universally disrupted in children with neurodevelopmental disorders (NDDs). Untreated A/EF problems lead to long-term mental health/behavioural, academic, and occupational/social difficulties, in addition to lower quality of life. While a number of cognitive rehabilitation programs have sought to address the needs of children with NDDs, those currently available are typically ineffective, expensive, or inaccessible to those in remote communities or without access to specialized professionals. Dino Island is an innovative cognitive intervention for children with NDDs that is designed to bridge this significant treatment ‘gap’. It combines the appeal of tablet-based gaming with the effectiveness of an in-person, interventionist-child structure. We will discuss the unique implementation considerations of Dino Island in three distinct contexts: parent/home delivery, therapist/hospital-based delivery, and international remote delivery (Malawi, Africa). Our symposium will focus on unique considerations for delivering cognitive rehabilitation across these distinct contexts in addition to community impacts, successes, and lessons learned.
KBHN Keynote – Fraser Mustard Lecture
October 23 | Fraser Mustard Lecture: Childhood Disability in the 21st Century: Can We Create a Canadian Model for the World?
The Fraser Mustard Lecture has been a signature event at the Kids Brain Health Network’s annual conference since 2012. This lecture is dedicated to the memory of Fraser Mustard, a world-renowned clinician and researcher who pioneered research on the importance of early child development. Each year, KBHN invites an individual who has made significant contributions to advancing the science of early brain development and/or the well-being of children from the perspective of research, clinical practice, or policy and advocacy, to deliver the Fraser Mustard Lecture.
Early Detection and Evidence-Based Early Interventions for Better Outcomes in Young Children with Cerebral Palsy
October 23 | Early Detection and Evidence-Based Early Interventions for Better Outcomes in Young Children with Cerebral Palsy
International clinical practice guidelines exist for early identification and early evidence-based interventions for young children with cerebral palsy (CP). Adoption of these guidelines requires integrated knowledge mobilization and implementation science strategies to support a change in practice. For early detection, different approaches are required for neonatal follow-up medical specialists who see children who are at higher risk for developing CP (e.g., born pre-term) compared to community-based primary care physicians where children will present during their well-baby care visits with motor impairments. For early intervention, a knowledge gap exists for rehabilitation professionals, where there is a need for them to familiarize themselves with different therapy options and the evidence behind these approaches to support them as they move towards ‘best’ practice. Purpose: To present progress on knowledge mobilization and implementation science strategies to support early identification and intervention for young children with CP across Canada. For Early Detection, an overview of the EDIT-CP Toolkit (Early Detection section), including early attributes that can be detected by primary care providers and caregivers will be provided. Moreover, the progress on current implementation strategies will be summarized. For Early Intervention, an orientation to the Early Intervention section of the EDIT-CP Toolkit, which includes evidence-based information on more than 20 interventions, will be offered. The implementation strategies and the perspectives of a clinical partner will also be presented. These tools will assist physicians and rehabilitation specialists in expediting diagnosis and providing early interventions that are evidence-informed to ensure better outcomes.
