2021 CHILD-BRIGHT Virtual Symposium
CHILD-BRIGHT Network | Réseau BRILLEnfant
The 2021 CHILD-BRIGHT Virtual Symposium is an ideal venue for all health professionals, researchers, and patient-partners to share project updates in an interdisciplinary setting. The virtual event will highlight the extensive, ongoing, and innovative activities in patient-oriented research projects that are investigating childhood brain-based disability.
Please be sure to register to receive up-to-date information leading up to the session!
We will kick off the event with a video update and Q&A session with the CHILD-BRIGHT research projects. This will then be followed by a poster session. Below you'll find posters organized by theme and time. You can also find posters using the search field and keywords to the right. Click on any poster to view its full-size version. At the designated timeslot, click the blue button to watch the presenter’s live presentation via videoconference. Check out the Platform Navigation Guide to orient yourself to the features of the Virtual Poster Session interface. If you have any difficulties during the day, please see us at the CHILD-BRIGHT Virtual Helpdesk !
More info: https://www.child-bright.ca/events/2021/3/18/2021-symposium
Filter displayed posters (132 keywords)
Patient-oriented research (3)
knowledge translation (3)
COVID-19 (2)
Children with disabilities (2)
Leisure (2)
Online activities (2)
Pain (2)
Parents (2)
Participation (2)
patient-oriented research (2)
qualitative research (2)
training (2)
show more...
Acceptance and Commitment therapy (1)
Accessibility (1)
Attention deficit hyperactivity disorder (ADHD) cognitive rehabilitation (1)
Best Practice (1)
Brain-computer interface (1)
Cerebral palsy (1)
Children with medical complexity (1)
Clinical trials (1)
Co-design (1)
Consent (1)
Cost-effectiveness analysis (1)
Diagnosis (1)
Emotional well-being (1)
Engagement (1)
Evidence Synthesis (1)
Evidence-Based (1)
FASD (1)
Family (1)
Family Engagement (1)
Family Engagement in Research (1)
Family Liaison (1)
Fetal Alcohol Spectrum Disorder (1)
Funding (1)
Gabapentin (1)
Intervention (1)
Laesa Kim (1)
Maternal hyperoxygenation (1)
Neonatal intensive care unit (1)
Neurodevelopment (1)
Neurodisability (1)
Neurological Impairment (1)
Non-invasive brain stimulation (1)
Outcome Measures (1)
Pandemic (1)
Parent Partner (1)
Parent Partners (1)
Partnership (1)
Patient Oriented Research (1)
Patient-Partner Experience (1)
Pediatrics (1)
Perinatal stroke (1)
Power Imbalance (1)
Pregnancy (1)
Prematurity (1)
Prenatal Alcohol Exposure (1)
Research (1)
Stakeholder (1)
Stroke (1)
Support Group. (1)
Training (1)
Transition to adulthood (1)
Trauma (1)
Virtual care (1)
Wheelchair (1)
Work-family balance (1)
actigraphy (1)
activity book (1)
advisory committee (1)
assessment (1)
autism spectrum disorder (ASD) (1)
barriers (1)
barriers and facilitators (1)
birthweight (1)
brain injury (1)
brain-based developmental disabilities (1)
cerebral palsy (1)
child health (1)
childhood disability (1)
congenital heart disease (CHD) (1)
cost-utility analysis (1)
development (1)
economic evaluation (1)
education (1)
employment status (1)
enablers (1)
end-user evaluation (1)
families (1)
family engagement (1)
fathers of children with disabilities (1)
feasibility (1)
functioning (1)
gastrojejeunostomy tubes (1)
health care transition (1)
health-care experiences (1)
health-related quality of life (1)
healthcare professionals (1)
home use (1)
hospital transition (1)
interactions with health-care professionals (1)
language (1)
meaningful engagement (1)
measurement (1)
medical complexity (1)
motor function (1)
motor mapping (1)
neurodevelopmental conditions (1)
neurodevelopmental disabilities (1)
neurodevelopmental disability (1)
pain (1)
parent partner (1)
parent well-being (1)
parenting stress (1)
parents and caregivers (1)
participant recruitment (1)
partnership (1)
patient engagement (1)
pediatrics (1)
perinatal stroke (1)
prematurity (1)
qualitative (1)
rehabilitation (1)
safety and feasiblity (1)
self-report (1)
service use (1)
single ventricle (1)
technology transfer (1)
user-centred design (1)
usual care (1)
white matter (1)
youth (1)
Show Posters:
Tracks
▼ 1. Program, Project Video Updates and Q&A Back to top
Project Updates and Q&A
CHILD-BRIGHT Network | Réseau BRILLEnfant
Abstract
Welcome to the 2021 CHILD-BRIGHT Virtual Symposium!
Today’s session is divided into two components:
(1) CHILD-BRIGHT Project Video Updates + Q&A (8-9:30 AM PDT/11 AM-12:30 PM EDT)
Join us for a series of short recordings from CHILD-BRIGHT’s research projects. Hear about the project teams’ accomplishments and their hopes and dreams for the work moving forward. Following these short presentations, representatives from projects will be on hand for a Q&A. Click the “Chat with Presenter” button below to access the webinar at 8 AM (PDT)/ 11AM (EDT).
(2) Live Poster Presentations (9:30-11:30 AM PDT / 12:30-2:30 PM EDT)
For the remainder of the symposium, you have the option to attend a series of Poster Sessions organized into 5 major themes as well as 2 Brainstorming Sessions. The agenda to the left outlines the schedule for poster presentations, which have been arranged by theme. Please explore the presentations that you are interested in attending. At the listed time when the presenter will be available, you can connect directly to the presentation via the “Chat with Presenter” button.
Today’s session is divided into two components:
(1) CHILD-BRIGHT Project Video Updates + Q&A (8-9:30 AM PDT/11 AM-12:30 PM EDT)
Join us for a series of short recordings from CHILD-BRIGHT’s research projects. Hear about the project teams’ accomplishments and their hopes and dreams for the work moving forward. Following these short presentations, representatives from projects will be on hand for a Q&A. Click the “Chat with Presenter” button below to access the webinar at 8 AM (PDT)/ 11AM (EDT).
(2) Live Poster Presentations (9:30-11:30 AM PDT / 12:30-2:30 PM EDT)
For the remainder of the symposium, you have the option to attend a series of Poster Sessions organized into 5 major themes as well as 2 Brainstorming Sessions. The agenda to the left outlines the schedule for poster presentations, which have been arranged by theme. Please explore the presentations that you are interested in attending. At the listed time when the presenter will be available, you can connect directly to the presentation via the “Chat with Presenter” button.
Presented by
CHILD-BRIGHT Network | Réseau BRILLEnfant
<pierre.zwiegers@child-bright.ca>
Institution
Keywords
▼ 2. Community Engaged Research & Partnership Back to top
Assessment of usual transition care of youth with brain-based disabilities: A Feasibility Study
Samantha Dong (1), Barb Galuppi (2), Jan Willem Gorter (2,3) , and on behalf of the READYorNot™ Brain-Based Disabilities Project Team
Abstract
Background:
Healthcare transition from pediatric to adult-centered care is often associated with poor health outcomes for youth and young adults with brain-based disabilities (BBD). As current transition care interventions do not significantly improve the quality of life for this population, there is a need for innovative and effective solutions. To address these gaps, the READYorNOT™ Brain-Based Disability Project team has developed the MyREADY Transition™ BBD App with and for transitioning youth. A randomized controlled trial (RCT) is currently underway to evaluate the benefits of the App compared to usual transition care. A survey designed for healthcare professionals (HCP) will be used to measure usual care.
Aim: To determine the feasibility of the HCP usual care survey and to describe usual transition care.
Methods: HCP from Hamilton RCT sites were asked to answer four open-ended feasibility questions about the usual care survey. The survey contains items on transition services/tools and the GotTransition® Six Core Elements Current Assessment (CA). Qualitative content analysis and descriptive statistics were employed to ascertain the feasibility and usual care outcomes, respectively. Results: Five out of nine HCP from four McMaster Children’s Hospital clinics completed the survey. For feasibility outcomes of the survey, there were mixed responses on whether it captures usual transition care; it took an average of 19 minutes to complete; it was easy to complete with minor difficulties; and HCP gave recommendations for improvements to the survey. For usual transition care outcomes: the median (range) for the total CA score is 12.3 (10-15) on a scale of 18 to 32.
Conclusion: By attaining feedback from HCP, the research team can make informed adaptations to the survey before its use in the RCT study. The median CA score suggests there is a basic implementation of the Six Core Elements (i.e., transition policy, tracking and monitoring, readiness, planning, transfer of care, and transfer completion) across the four clinics.
Aim: To determine the feasibility of the HCP usual care survey and to describe usual transition care.
Methods: HCP from Hamilton RCT sites were asked to answer four open-ended feasibility questions about the usual care survey. The survey contains items on transition services/tools and the GotTransition® Six Core Elements Current Assessment (CA). Qualitative content analysis and descriptive statistics were employed to ascertain the feasibility and usual care outcomes, respectively. Results: Five out of nine HCP from four McMaster Children’s Hospital clinics completed the survey. For feasibility outcomes of the survey, there were mixed responses on whether it captures usual transition care; it took an average of 19 minutes to complete; it was easy to complete with minor difficulties; and HCP gave recommendations for improvements to the survey. For usual transition care outcomes: the median (range) for the total CA score is 12.3 (10-15) on a scale of 18 to 32.
Conclusion: By attaining feedback from HCP, the research team can make informed adaptations to the survey before its use in the RCT study. The median CA score suggests there is a basic implementation of the Six Core Elements (i.e., transition policy, tracking and monitoring, readiness, planning, transfer of care, and transfer completion) across the four clinics.
Presented by
Samantha Dong
<dongy58@mcmaster.ca>
Institution
(1) School of Rehabilitation Science, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; (2) Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; (3) Department of Pediatrics, McMaster University
Keywords
Transition to adulthood, healthcare professionals, usual care, feasibility
Coached, Coordinated, Enhanced Neonatal Transition (CCENT): A multi-centre mixed-methods pragmatic randomized controlled trial
Dr. Julia Orkin (1), Kayla Esser (1), Kate Robson (3), Dr. Nathalie Major (2), Blossom Dharmaraj (1), Dr. Paige Church (3) and Dr. Eyal Cohen (1)
Abstract
Introduction:
Medical and technological advances have resulted in increased neonatal intensive care unit (NICU) survivors in Canada, including babies born with extreme prematurity or genetic conditions. Parents experiencing a prolonged NICU hospitalization often have increased stress, anxiety, and depression. Enhanced parental support in unit may reduce stress and subsequently improve long term parent and child health outcomes.
The Coached, Coordinated, Enhanced Neonatal Transition (CCENT) program is a novel bundled intervention for parents of high-risk infants delivered by a nurse navigator (NN) who provides 1) coaching and psychosocial support within an Acceptance and Commitment Therapy (ACT) framework, 2) care coordination, and 3) anticipatory education around the care for a medically complex infant. Research question: Does the implementation of a nurse navigator providing support and parental coaching using an ACT framework for parents of high-risk neonates decrease parental stress compared to standard neonatal follow-up care?
Status update: CCENT is active at 7 Canadian NICUs, and has completed recruitment with a total of 238 participants enrolled. Data collection and follow up is underway, with 12-month data anticipated to be available March 2022.
Qualitative interview themes: Preliminary themes from the first 10 qualitative interviews are: the role of the nurse navigator in providing emotional and baby care support, the importance of having contact with someone who understands the NICU experience, parent use of ACT and mindfulness, the hospital to home transition, and parent stress during the NICU admission and first year of life.
Challenges to date: Increased participant attrition since COVID-19, finding meaningful engagement for patient and parent-partners during data collection phase.
Valuable lessons in patient-oriented research: Quarterly check-ins with Family Advisory Committee, inclusion of Youth Patient Partner in 2020. FAC had valuable input in study design, development of interview guide, and family resource toolkit.
Knowledge translation: Commentary published in Pediatrics and Child Health (2021), posters shared at national research conferences, CHILD-BRIGHT/CHC webinar (More than Medical), SickKids ACT symposium presentation, SickKids Mindfulness rounds presentation, Canadian Premature Babies Foundation livestream.
The Coached, Coordinated, Enhanced Neonatal Transition (CCENT) program is a novel bundled intervention for parents of high-risk infants delivered by a nurse navigator (NN) who provides 1) coaching and psychosocial support within an Acceptance and Commitment Therapy (ACT) framework, 2) care coordination, and 3) anticipatory education around the care for a medically complex infant. Research question: Does the implementation of a nurse navigator providing support and parental coaching using an ACT framework for parents of high-risk neonates decrease parental stress compared to standard neonatal follow-up care?
Status update: CCENT is active at 7 Canadian NICUs, and has completed recruitment with a total of 238 participants enrolled. Data collection and follow up is underway, with 12-month data anticipated to be available March 2022.
Qualitative interview themes: Preliminary themes from the first 10 qualitative interviews are: the role of the nurse navigator in providing emotional and baby care support, the importance of having contact with someone who understands the NICU experience, parent use of ACT and mindfulness, the hospital to home transition, and parent stress during the NICU admission and first year of life.
Challenges to date: Increased participant attrition since COVID-19, finding meaningful engagement for patient and parent-partners during data collection phase.
Valuable lessons in patient-oriented research: Quarterly check-ins with Family Advisory Committee, inclusion of Youth Patient Partner in 2020. FAC had valuable input in study design, development of interview guide, and family resource toolkit.
Knowledge translation: Commentary published in Pediatrics and Child Health (2021), posters shared at national research conferences, CHILD-BRIGHT/CHC webinar (More than Medical), SickKids ACT symposium presentation, SickKids Mindfulness rounds presentation, Canadian Premature Babies Foundation livestream.
Presented by
Kayla Esser
<kayla.esser@sickkids.ca>
Institution
1 The Hospital for Sick Children, Toronto, Ontario; 2 Children’s Hospital of Eastern Ontario, Ottawa, Ontario; 3 Sunnybrook Health Sciences Centre, Toronto, Ontario
Keywords
Neonatal intensive care unit, Acceptance and Commitment therapy, parenting stress, prematurity, hospital transition
Family (& Work) Matters: Family-related work decisions and well-being of parents of children with neurodevelopmental disabilities.
Karen Turner, BA, CCRP; Arla Day, PhD; Patrick McGrath, PhD
Abstract
Background and Purpose:
Caring for children with neurodevelopmental disabilities who also experience challenging behaviours (e.g., emotion regulation) may involve more intense caregiving responsibilities, which can impact parents’ work experiences—in terms of changing jobs, reducing work hours, or stop working altogether to care for their child. However, work also can be a source of respite from caregiving responsibilities (Joseph & Joseph, 2019) because there are psychological benefits to paid employment. Working parents of children with disabilities tend to report a higher level of well-being than those who are not working (Olsson & Hwang, 2006). Despite these studies, there is little research that examines the ongoing relationships of work for parents with disabilities. Therefore, the goal of this study is to examine the extent to which work and family factors (e.g., support, control, salience) may enhance or deteriorate wellbeing and work-family conflict for parents of children with neurodevelopmental disabilities and challenging behaviours.
Methods: We engaged a small group of parents with lived experience, who provided guidance on the research question and development of study materials. Their involvement continues through all phases of the research project. We use longitudinal data from the Strongest Families Neurodevelopmental study, matched with new data examining work and family factors and well-being. Study participants from the Strongest Families study who have agreed to be contacted and to have their data used for future studies (~333) are invited to participate. Matched data (including demographics, measures of child health and behaviour, parent well-being, and employment status) provides longitudinal data of employment status and well-being.
Results: We expect (a) employment status is positively related to well-being; (b) role salience moderates the relationship between employment status and outcomes, such that alignment results in greater well-being and lower conflict; (c) parents with fewer resources and more family demands will be more likely to be underemployed or unemployed.
Conclusions: By better understanding the various work and family factors that affect parents’ employment status, conflict, and well-being, we seek to identify how we can better support individuals and protect their well-being, both in their parental and work roles.
Methods: We engaged a small group of parents with lived experience, who provided guidance on the research question and development of study materials. Their involvement continues through all phases of the research project. We use longitudinal data from the Strongest Families Neurodevelopmental study, matched with new data examining work and family factors and well-being. Study participants from the Strongest Families study who have agreed to be contacted and to have their data used for future studies (~333) are invited to participate. Matched data (including demographics, measures of child health and behaviour, parent well-being, and employment status) provides longitudinal data of employment status and well-being.
Results: We expect (a) employment status is positively related to well-being; (b) role salience moderates the relationship between employment status and outcomes, such that alignment results in greater well-being and lower conflict; (c) parents with fewer resources and more family demands will be more likely to be underemployed or unemployed.
Conclusions: By better understanding the various work and family factors that affect parents’ employment status, conflict, and well-being, we seek to identify how we can better support individuals and protect their well-being, both in their parental and work roles.
Presented by
Karen Turner
<karen.turner@iwk.nshealth.ca>
Institution
Saint Mary’s University, IWK Health Centre
Keywords
Work-family balance, childhood disability, parent well-being, neurodevelopmental disability, employment status
Health economics evaluation platform within CHILD-BRIGHT
Wendy J. Ungar, PhD (1,2), Jennifer D. Zwicker, PhD (3,4), Myla E. Moretti, PhD (2,5), Patrick Berrigan, MA (3), Brittany Finlay, MPP (3), Kate Tsiplova, MSc (1)
Abstract
Economic evaluation assesses the value of new interventions. Measuring cost-effectiveness and evaluating effects on quality of life for patients and their caregivers contribute to an understanding of value to inform policy and funding. The objectives of the health economic evaluation platform within CHILD-BRIGHT are: (1) to support select CHILD-BRIGHT projects for economic evaluation; (2) to develop capacity for evaluation by establishing successful collaborations with project teams and selecting and integrating valid and feasible health economic instruments in data collection processes; (3) to establish procedures for data assembly and transfer; and (4) to conduct full economic evaluations in collaboration with project teams to study the incremental cost per unit of benefit gained for promising interventions in developmental disability. The process for economic evaluation includes data collection, costing of interventions and services used by families, defining comparator groups and outcomes, conducting a cost-utility and/or cost-effectiveness analysis and knowledge dissemination. The primary data collection instruments are the Resource Use Questionnaire (RUQ) and the Health Utility Index (HUI). The RUQ is designed to collect service use, family out-of-pocket costs and time losses related to the child’s disability. The HUI is a generic health status and health-related quality of life measure and is used to calculate quality-adjusted life years (QALYs), which is the primary measure of effectiveness. The relevant direct health and non-health costs and productivity losses (indirect costs) associated with caregiver time losses are included in the analysis. Prices for interventions and directs costs are obtained from study partners, public and private fee schedules, patient reported out-of-pocket costs, collective agreements and published sources. For all projects selected for potential economic evaluation, the analysis will be undertaken using patient-level data from clinical trials for the public payer, family and societal perspectives. Currently, the recruitment and data collection are ongoing for all projects with ongoing support from the health economics platform. Guidelines on data collection and quality checks have been distributed to select projects and costing for some projects will begin in late
Presented by
Kateryna Tsiplova
<kateryna.tsiplova@sickkids.ca>
Institution
Program of Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto
Keywords
Cost-effectiveness analysis, cost-utility analysis, economic evaluation, service use, health-related quality of life
Maternal Hyperoxygenation in Congenital Heart Disease (MATCH): Interim Findings
Fu-Tsuen Lee (1,2), Liqun Sun (2), Joshua van Amerom (2), Adrienn Szabo (2), Natasha Milligan (2), Amandeep Saini (2), Lindsay Freud (2), Edgar Jaeggi (2), Tim Van Mieghem (3), John Kingdom (3), Steven Miller (4) Mike Seed (2,5)
Abstract
Introduction:
Fetuses with single ventricles (SV) have impaired brain development during prenatal life, which may be due to their abnormal blood flow patterns and reduced oxygenation of the developing brain. Children with SV heart disease often have challenges with their development, and our research aims to improve early brain growth and maturation and prevent brain injury.
Purpose: We sought to use maternal hyperoxygenation (MH) to improve fetal brain oxygenation and therefore brain growth and maturation in fetuses with SV.
Objective/Aims: As the initial step in conducting a clinical trial, our objective is to assess the safety and feasibility of MH in pregnancies diagnosed with fetal SV.
Study Participants/Protocol: We invited pregnant mothers with a fetal SV diagnosis to participate in our study at SickKids. Consented participants self-administered a continuous supply of 40% fraction of inspired oxygen via nasal prongs up to 24 hours/day from mid-gestational diagnosis until delivery. In addition to routine care, participants received additional research visits and weekly phone calls to ensure maternal-fetal well-being.
Progress Update: We are currently in the recruitment phase. We have enrolled 15 pregnant mothers to date, 14 who have completed the intervention, with an expected sample size of 30 to finish our study. No participants have withdrawn from the study.
Interim Findings: Our pregnant mothers achieved a daily mean 18 hours of oxygen per day for 68 days from diagnosis until delivery. No serious adverse events were associated to our intervention; there was no fetal demise or premature closure of the ductus arteriosus. Compared to non-intervened SV controls cared at our centre, delivery outcomes such as gestational age at birth and APGAR scores at 1 and 5 minutes were similar. At birth, we found a significant decrease in birthweight but has not raised any clinical concerns. On the other hand, our routine pre-operative brain MR imaging revealed a significant reduction in brain injury, in particular injuries associated with poor neurodevelopmental outcome.
Conclusions: Our interim assessment revealed MH is feasible and is not associated with any serious adverse events in pregnancies with a fetal SV diagnosis. Our findings raise the possibility that MH represents a neuroprotective strategy in fetuses with SV; however, we will be closely monitoring fetal growth.
Purpose: We sought to use maternal hyperoxygenation (MH) to improve fetal brain oxygenation and therefore brain growth and maturation in fetuses with SV.
Objective/Aims: As the initial step in conducting a clinical trial, our objective is to assess the safety and feasibility of MH in pregnancies diagnosed with fetal SV.
Study Participants/Protocol: We invited pregnant mothers with a fetal SV diagnosis to participate in our study at SickKids. Consented participants self-administered a continuous supply of 40% fraction of inspired oxygen via nasal prongs up to 24 hours/day from mid-gestational diagnosis until delivery. In addition to routine care, participants received additional research visits and weekly phone calls to ensure maternal-fetal well-being.
Progress Update: We are currently in the recruitment phase. We have enrolled 15 pregnant mothers to date, 14 who have completed the intervention, with an expected sample size of 30 to finish our study. No participants have withdrawn from the study.
Interim Findings: Our pregnant mothers achieved a daily mean 18 hours of oxygen per day for 68 days from diagnosis until delivery. No serious adverse events were associated to our intervention; there was no fetal demise or premature closure of the ductus arteriosus. Compared to non-intervened SV controls cared at our centre, delivery outcomes such as gestational age at birth and APGAR scores at 1 and 5 minutes were similar. At birth, we found a significant decrease in birthweight but has not raised any clinical concerns. On the other hand, our routine pre-operative brain MR imaging revealed a significant reduction in brain injury, in particular injuries associated with poor neurodevelopmental outcome.
Conclusions: Our interim assessment revealed MH is feasible and is not associated with any serious adverse events in pregnancies with a fetal SV diagnosis. Our findings raise the possibility that MH represents a neuroprotective strategy in fetuses with SV; however, we will be closely monitoring fetal growth.
Presented by
Fu-Tsuen (Kelvin) Lee
<kelvin.lee@sickkids.ca>
Institution
1. Department of Physiology, Faculty of Medicine, University of Toronto; 2. Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto; 3. Department of Obstetrics and Gynecology, Mount Sinai Hospital, University of Toronto; 4. Division of Neurology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto; 5. Department of Diagnostic Imaging, Hospital for Sick Children, University of Toronto
Keywords
Maternal hyperoxygenation, single ventricle, brain injury, birthweight, safety and feasiblity
Mega Team and its Effects on Emotional and Behavioural Regulation in ADHD, ASD, and CHD
Taha Arsad, Navi Dhaliwal , Jala Rizeq, Victoria Lishak, Renee Sananes, Anne-Claude Bedard, Jennifer Crosbie
Abstract
Video games are defined by the challenges they present to gamers. These challenges can include reacting quickly enough to something on screen (ex. Blocking an enemy attack), solving a puzzle (ex. Finding your way through a maze), or completing a memory-based task (ex. Solving a memory challenge in order to unlock a chest), to name a few. Video games provide a virtual environment for children to practice a variety of skills and, with careful design, may be a useful tool to train highly important cognitive skills known as executive functions. These skills include working memory, flexible thinking, and self-control, and are used by children in a variety of daily contexts (executive functions). These skills are particularly impacted in children diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/or a Congenital Heart Disease (CHD). Our study aims to determine if a video game based intervention (MegaTeam) can be used to improve these cognitive abilities. We are measuring the success of the intervention by assessing our study participants’ cognitive skills at 3 timepoints: Their first visit (Visit 1), 5 weeks from their first visit (Visit 2), and 6 months from their first visit (Visit 3). During the 5 weeks between the first two visits, those randomly assigned to the treatment group play the MegaTeam cognitive intervention, and those assigned to the treatment as usual group do not. Comparing cognitive task performance and behavioral ratings from parents and teachers between visits 1 and 2 will tell us if the MegaTeam intervention has short-term improvement effects on their cognitive abilities, and visit 3 will be used to determine any long-term cognitive effects. Given the popularity of video games with children, we hope that this intervention proves to be an effective and accessible form of cognitive treatment for kids with ADHD, ASD, and/or CHD. Our study is currently in its recruitment phase, and we have recruited 169 participants to-date. While COVID-19 has certainly impacted enrollment, social media recruitment has allowed us to maintain a steady stream of new participants in our various target populations as we continue to explore new recruitment strategies.
Presented by
Taha Arshad
<taha.arshad@sickkids.ca>
Institution
The Hospital for Sick Children
Keywords
Attention deficit hyperactivity disorder (ADHD) cognitive rehabilitation, congenital heart disease (CHD), autism spectrum disorder (ASD)
Motivations Study - Exploring the experience of participating in a Patient Oriented Research Study
Laesa Kim (1,2); Hal Siden, MD, MHSc, FRCPC (2,3); Karen Cook, PhD, RN (4); Anne-Mette Hermansen, MA (2)
Abstract
Derived from our experience of recruiting children with medical complexity for research studies, the “Motivations Study” will help us understand the complex barriers to research participation for parents of a child with a serious illness. In this qualitative research study we are asking parents important questions about what research means to them and why or why not they have chosen to participate in it. This line of questioning moves beyond the standard feedback form that asks participants whether their experience in a study was positive or negative, towards a deeper understanding of how
research participation is understood and experienced from the point of view of a parent deeply engaged in the health care of their medically complex child.
We recognize that only a qualitative methodology will enable us to gain a deeper understanding of this issue. We have chosen a qualitative research approach, known as Interpretive Phenomenological Analysis (IPA) as the foundation for this study. This methodology will allow us to reflect on the deeper meaning of participating in research through the collection of individual narratives of such experiences. We are conducting semi-structured interviews with 15 families to gather a plethora of rich stories about these individual’s experiences participating in research or perhaps - not participating.
Importantly, we have also chosen for our staff Family Liaison, a parent-partner in our larger program of research, to be the study lead. Our Family Liaison plays an invaluable role in bridging clinical and academic research agendas with the realities of the families that enter our research program. As our Family Liaison is herself the parent of a child with medical complexity and carries with her years of experience navigating the health care system, she is uniquely positioned to connect with study participants from a shared context. We believe that this shared context will create meaningful conversation and allow us a deep understanding of what moves parent to give their time, energy and medical charts for the benefit of researchers, or prevents them from doing so.
We recognize that only a qualitative methodology will enable us to gain a deeper understanding of this issue. We have chosen a qualitative research approach, known as Interpretive Phenomenological Analysis (IPA) as the foundation for this study. This methodology will allow us to reflect on the deeper meaning of participating in research through the collection of individual narratives of such experiences. We are conducting semi-structured interviews with 15 families to gather a plethora of rich stories about these individual’s experiences participating in research or perhaps - not participating.
Importantly, we have also chosen for our staff Family Liaison, a parent-partner in our larger program of research, to be the study lead. Our Family Liaison plays an invaluable role in bridging clinical and academic research agendas with the realities of the families that enter our research program. As our Family Liaison is herself the parent of a child with medical complexity and carries with her years of experience navigating the health care system, she is uniquely positioned to connect with study participants from a shared context. We believe that this shared context will create meaningful conversation and allow us a deep understanding of what moves parent to give their time, energy and medical charts for the benefit of researchers, or prevents them from doing so.
Presented by
Laesa Kim
<Laesa.Kim@bcchr.ca>
Institution
1 Parent Partner; 2 BC Children’s Hospital Research Institute; 3 Department of Pediatrics, University of British Columbia; 4 Faculty of Health Disciplines, Athabasca University
Keywords
Patient-oriented research, qualitative research, parent partner
Pain Detectives: Optimizing the management of pain and irritability in children with severe neurological impairment
Ketchum K (1, 11), Hermansen AM (1), Andrews G (1), Pawliuk C (1), Dewan T (9), Gnanakumar V (10), Orkin J (4,5), Richardson A (1), Vadeboncoeur C (6,7,8), Holsti L (1,3), Carleton B (1,2), Oberlander T (1,2), Siden H (1,2)
Abstract
Our goal at the Siden Lab is to improve the assessment and treatment of pain and irritability in children with complex health conditions and multiple disabilities who have limited communication and cognition. The origins of this discomfort are complex and poorly understood, so we use the term Pain and Irritability of Unknown Origin (PIUO) to describe them. We believe that lack of a standardized approach to investigating PIUO may be contributing to pain persistence in the kids we see. To address this, our team developed a
systematic approach to investigating PIUO, which we call the PIUO Pathway. The goal of the PIUO Pathway is to efficiently identify treatable causes of pain and irritability.
We are currently testing the efficacy of the PIUO Pathway. Participants are children who have a severe neurological impairment (SNI), extremely limited communication and mobility function, and are experiencing PIUO. We start by asking questions about the child’s health status, previous investigations and treatments. We also ask about the impact of the child’s PIUO on the family’s quality of life. Children are randomly assigned to the Pathway or Waitlist arms of the trial, and we work with the families to identify or exclude any sources of pain and irritability through structured history taking, physical examination, laboratory investigations and pharmacological interventions.
We cannot always identify the source of pain using the PIUO Pathway. Moreover, in children with complex neurological conditions, pain and irritability are not always due to disease or injury, but instead may be due to generalized irritability of the central nervous system. Kids that are still experiencing PIUO after going through the Pathway are eligible to participate in our drug trial, which investigates the efficacy of gabapentin in relieving PIUO. Gabapentin was originally used as an anti-seizure medication, but has since become more known as an effective treatment for chronic, complex pain. We hope that gabapentin can be proven to be beneficial in relieving these kids’ pain, the nature of which we still do not fully understand.
We are currently testing the efficacy of the PIUO Pathway. Participants are children who have a severe neurological impairment (SNI), extremely limited communication and mobility function, and are experiencing PIUO. We start by asking questions about the child’s health status, previous investigations and treatments. We also ask about the impact of the child’s PIUO on the family’s quality of life. Children are randomly assigned to the Pathway or Waitlist arms of the trial, and we work with the families to identify or exclude any sources of pain and irritability through structured history taking, physical examination, laboratory investigations and pharmacological interventions.
We cannot always identify the source of pain using the PIUO Pathway. Moreover, in children with complex neurological conditions, pain and irritability are not always due to disease or injury, but instead may be due to generalized irritability of the central nervous system. Kids that are still experiencing PIUO after going through the Pathway are eligible to participate in our drug trial, which investigates the efficacy of gabapentin in relieving PIUO. Gabapentin was originally used as an anti-seizure medication, but has since become more known as an effective treatment for chronic, complex pain. We hope that gabapentin can be proven to be beneficial in relieving these kids’ pain, the nature of which we still do not fully understand.
Presented by
Katie (Katherine) Ketchum
<katherine.ketchum@ucdconnect.ie>
Institution
1 British Columbia Children's Hospital Research Institute, Vancouver, Canada; 2 Department of Pediatrics, University of British Columbia, Vancouver, Canada; 3 Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada; 4 Department of Pediatrics, University of Toronto, Toronto, Canada; 5 Complex Care, Hospital for Sick Children, Toronto, Canada; 6 Department of Pediatrics, University of Ottawa, Ottawa, Canada; 7 Children’s Hospital of Eastern Ontario, Ottawa, Canada; 8 Roger Neilson House, Ottawa, Canada; 9 Department of Pediatrics, University of Calgary, Calgary, Canada; 10 Physical Medicine and Rehabilitation, Alberta Children’s Hospital, Calgary, Canada; 11 Medical student, University College Dublin, Dublin, Ireland
Keywords
Pediatrics, Neurological Impairment, Pain, Gabapentin
Parent Partnership in Neurodiversity Research
Jeanine Lebsack and Jaime Winkler
Abstract
Parents of neurodiverse and medically complex children face barriers and lived experiences that are devastating to an individual and family's mental health. Life Beyond Trauma raises awareness of the consequences of post-traumatic stress on parents and caregivers. Our goal is to improve the well-being of parents, caregivers and their families by sharing our lived experiences that benefit the research study.
Presented by
Jeanine Lebsack and Jaime Winkler
<jsacks@sasktel.net>
Institution
CHILD-BRIGHT
Keywords
Parents, Trauma, Research, Parent Partners
Parental perspective about the health and development of their preterm child
A-A Milette (1), LL Richter (2), CJ Bourque (1), A Janvier (1), K Robson (3), P Church (3), A Synnes (2), TM Luu (1)
Abstract
What is known:
Preterm birth outcome studies and clinical follow-up have traditionally focused on neurodevelopment. A previous study by our research team showed that parents of preterm children also value other outcome measures.
Our question: What positive and negative aspects of their very preterm child’s health and development do parents perceive to be most important and how does the parental perspective relate to the child’s level of neurodevelopmental impairment (NDI)?
What we did: This is the second of a 4-step approach where parents will identify meaningful outcomes and co-create definitions of NDI. In this step, parents of children born ˂29 weeks gestational age and seen at two Canadian neonatal follow-up clinics from 2018-2020 were invited to complete an online survey about their level of agreement with statements about their child’s health and development. Parental responses in relation to their child’s level of NDI (categorized as mild/moderate or severe according to standard medical definitions from the Canadian Neonatal Follow Up Network, CNFUN) were examined.
What we found: 199 parental responses were obtained for 166 preterm children (67% of eligible children). Of these children, 55% had no NDI and 45% had mild/moderate or severe NDI. Parents of children with NDI were most concerned about their child’s development (62%), physical health (50%), and future (58%). Presence of NDI was associated with more parental concerns. Overall, parents rated their child’s health as high (median=8; range 3-10). The health of children with no NDI was rated higher than children with NDI (p<0.01). Regardless of level of NDI, most parents considered their child as being happy and having a positive personality.
What is next: These results, combined with more parental feedback, will be used to revise reported outcomes and definitions in CNFUN. Proposed changes will be validated by parents. Why it matters: Parents of preterm children have a balanced perspective on their child’s health and developmental outcomes. Integrating parental views when developing core sets of outcome measures for neonatal follow-up is critical.
Our question: What positive and negative aspects of their very preterm child’s health and development do parents perceive to be most important and how does the parental perspective relate to the child’s level of neurodevelopmental impairment (NDI)?
What we did: This is the second of a 4-step approach where parents will identify meaningful outcomes and co-create definitions of NDI. In this step, parents of children born ˂29 weeks gestational age and seen at two Canadian neonatal follow-up clinics from 2018-2020 were invited to complete an online survey about their level of agreement with statements about their child’s health and development. Parental responses in relation to their child’s level of NDI (categorized as mild/moderate or severe according to standard medical definitions from the Canadian Neonatal Follow Up Network, CNFUN) were examined.
What we found: 199 parental responses were obtained for 166 preterm children (67% of eligible children). Of these children, 55% had no NDI and 45% had mild/moderate or severe NDI. Parents of children with NDI were most concerned about their child’s development (62%), physical health (50%), and future (58%). Presence of NDI was associated with more parental concerns. Overall, parents rated their child’s health as high (median=8; range 3-10). The health of children with no NDI was rated higher than children with NDI (p<0.01). Regardless of level of NDI, most parents considered their child as being happy and having a positive personality.
What is next: These results, combined with more parental feedback, will be used to revise reported outcomes and definitions in CNFUN. Proposed changes will be validated by parents. Why it matters: Parents of preterm children have a balanced perspective on their child’s health and developmental outcomes. Integrating parental views when developing core sets of outcome measures for neonatal follow-up is critical.
Presented by
Lindsay Richter
<lrichter@bcchr.ca>
Institution
1 Université de Montréal 2 University of British Columbia 3 Sunnybrook Health Sciences Centre
Keywords
Prematurity, Neurodevelopment, Parents, Family Engagement, Outcome Measures
Patient Oriented Research: A qualitative study of research involvement of parents of children with neurodevelopmental disabilities
Emma Vanderlee, RN, MScN, Megan Aston, PhD, Karen Turner, BA, Patrick McGrath, PhD, Lucyna Lach, PhD
Abstract
Background and Purpose:
Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. Having parents of children with a neurodevelopmental condition contribute meaningfully to all aspects of the research process will help to ensure that stakeholder (parents) interests are considered and respected, that the program is maximally sensitive to the
needs of children with neurodevelopmental disabilities and their families, and that there is an increased likelihood of successful implementation and positive outcomes. This was the goal of the Strongest Families Neurodevelopmental team when they included a Parent Advisory Committee, made up of parents and caregivers to complete their research project. Therefore, the purpose of our research was to examine the experiences of parents who participated on the Advisory Committee. We wanted to explore why parents participated, how they engaged, why they chose to be members of the Advisory Committee and why they did or did not continue. We also
examined the experiences of researchers.
Methods: The qualitative study was completed using feminist poststructuralism and discourse analysis to explore how personal experiences were socially and institutionally constructed through relations of power. Semi-structured interviews were done with 6 parents and 2 researchers.
Results: Four themes emerged from the data: 1) “Feeling valued and adding meaningful contribution” 2) “Personal connections empower parents” 3) “Respectful researchers facilitate inclusion” and 4) “Parents stayed involved with support from researchers.” Descriptions of each theme will be presented as well as quotes from parents and researchers.
Conclusions and Implications: Personal, authentic, in-person interactions between researchers and parent advisors can help facilitate successful research relationships. Our research found that feeling valued, creating personal connections, being respectful and offering support were key to positively engaging parent advisors. All of these practices created a new research discourse. Recommendations regarding working with parent advisors will be presented and how these themes were shared with the research team including parents.
Methods: The qualitative study was completed using feminist poststructuralism and discourse analysis to explore how personal experiences were socially and institutionally constructed through relations of power. Semi-structured interviews were done with 6 parents and 2 researchers.
Results: Four themes emerged from the data: 1) “Feeling valued and adding meaningful contribution” 2) “Personal connections empower parents” 3) “Respectful researchers facilitate inclusion” and 4) “Parents stayed involved with support from researchers.” Descriptions of each theme will be presented as well as quotes from parents and researchers.
Conclusions and Implications: Personal, authentic, in-person interactions between researchers and parent advisors can help facilitate successful research relationships. Our research found that feeling valued, creating personal connections, being respectful and offering support were key to positively engaging parent advisors. All of these practices created a new research discourse. Recommendations regarding working with parent advisors will be presented and how these themes were shared with the research team including parents.
Presented by
Emma Vanderlee
<emmakai_13@icloud.com>
Institution
Dalhousie University, IWK Health Centre, McGill University
Keywords
Patient-oriented research, advisory committee, neurodevelopmental conditions, parents and caregivers, families
Separated by distance, united by technology: a home-based brain-computer interface program for children with severe neurological disabilities and their families
Dion Kelly (1,2,3), Erica Floreani (1), Danette Rowley (4), Eli Kinney-Lang (1,2,3), Zeanna Jadavji (1,2,3), Ephrem Zewdie (1,2,3), Ion Robu (4) & Adam Kirton (1,2,3,4)
Abstract
Introduction:
Imagine being cognitively aware but having no functional control over
your body. Unfortunately, this is the case for many children with severe neurological disabilities. They are deprived of fundamental human rights, including communication and recreation. Brain-computer interfaces (BCIs) offer a means for such children to control external devices using only their brain signals, thereby introducing new opportunities for interaction. BCIs can function by collecting, analyzing, and translating brain signals into commands to control things like a computer cursor or communication device. A major limitation with BCI research to date is that nearly all studies have been conducted in adults and in laboratories, neglecting real-world applications to achieve the goals of disabled children.
Methods: By engaging end-users within our clinical pediatric BCI program, we are investigating the feasibility of home-based BCI for children with severe quadriplegia. After completing a survey, families receive a personalized BCI at Home Package. Families have the option to attend live virtual sessions or instead, use the BCI system at their leisure with remote support available anytime. After a familiarization period, families and researchers collaboratively set home-based BCI goals using patient-centered measurement questionnaires. New equipment and applications tailored to the families’ needs occur periodically, with ongoing assessments of goal achievement to evaluate perceived outcomes.
Results: Five families have been enrolled thus far, with children ages 8-15 years (median age = 13). The first has been using BCI at home since August 2020. Three families have opted for virtual sessions, while two families have been using BCI leisurely. Each child has defined unique preferred BCI activities including painting, video games, skill-enhancing games, and driving a remote-controlled car. All families have reported that home-based BCI use has enhanced engagement and interaction for their child. Families have also reported feeling “part of the team”.
Impact: Given the current health climate and challenges with mobility, a home-based BCI program appears feasible and may increase BCI accessibility and interaction for severely disabled children and their families. This project will also contribute to the advancement of practical BCI systems and applications that suit the needs of pediatric users with complex needs.
Methods: By engaging end-users within our clinical pediatric BCI program, we are investigating the feasibility of home-based BCI for children with severe quadriplegia. After completing a survey, families receive a personalized BCI at Home Package. Families have the option to attend live virtual sessions or instead, use the BCI system at their leisure with remote support available anytime. After a familiarization period, families and researchers collaboratively set home-based BCI goals using patient-centered measurement questionnaires. New equipment and applications tailored to the families’ needs occur periodically, with ongoing assessments of goal achievement to evaluate perceived outcomes.
Results: Five families have been enrolled thus far, with children ages 8-15 years (median age = 13). The first has been using BCI at home since August 2020. Three families have opted for virtual sessions, while two families have been using BCI leisurely. Each child has defined unique preferred BCI activities including painting, video games, skill-enhancing games, and driving a remote-controlled car. All families have reported that home-based BCI use has enhanced engagement and interaction for their child. Families have also reported feeling “part of the team”.
Impact: Given the current health climate and challenges with mobility, a home-based BCI program appears feasible and may increase BCI accessibility and interaction for severely disabled children and their families. This project will also contribute to the advancement of practical BCI systems and applications that suit the needs of pediatric users with complex needs.
Presented by
Dion Kelly
<dion.kelly@ucalgary.ca>
Institution
1 University of Calgary; 2 Alberta Children’s Hospital Research Institute; 3 Hotchkiss Brain Institute; 4 Alberta Health Services
Keywords
Brain-computer interface, user-centred design, home use, end-user evaluation, technology transfer
▼ 3. Clinical Research & Supports Back to top
Actigraphy to measure real-life performance for children with hemiparesis in rehabilitation trials
Anna Bourgeois, Megan J. Metzler, Adrianna Giuffre, Asha Hollis, Ephrem Zewdie, Adam Kirton
Abstract
BACKGROUND AND OBJECTIVES:
Perinatal stroke results in hemiparetic cerebral palsy (HCP) and lifelong disability for millions. Rehabilitation aims to improve function in the context of everyday life but outcome measures are often applied in contrived institutional environments. Actigraphy is a promising solution where bilateral watch-like devices could allow the inconspicuous collection of continuous movement data of arm movement in real life. We hypothesized that actigraphy-derived metrics of arm asymmetry and movement variability in children with perinatal stroke and HCP could detect functional changes within an intensive upper extremity motor rehabilitation trial.
STUDY PARTICIPANTS AND SETTING: Children with HCP aged 8-19 years (n=34, mean age±SD, #males) participated in a randomized trial across three pediatric ambulatory rehabilitation sites. Inclusion criteria included a confirmed perinatal ischemic stroke (term birth) with perceived limitations in function without severe hemiparesis or spasticity.
MATERIALS AND METHODS: Participants were fitted with bilateral Actiwatches for a 48-hour period before camp, post 1-week and post 6-months. Primary outcome was the Actigraphy Movement Asymmetry Index (AMAI) in addition to mean movement counts, the Assisting Hand Assessment (AHA), and Jebsen Taylor Test of Hand Function (JT). Differences in actigraphy metrics across time points were examined with a repeated measures ANCOVA adjusted for age. Relationships with standardized motor tests were examined using Pearson correlations.
RESULTS: Procedures were well tolerated with no adverse events. AMAI correlated with AHA at all timepoints (baseline: r= 0.354, p=0.047; post 1-week: r= 0.400, p=0.026; post 6-months: r=0.383, p=0.049, Figure 1). Correlations were identified between AHA change scores and day affected mean score with sedentary activity removed (r=0.359 p=0.047) and between mean night change and JT change (r=0.562 p= 0.046) with and without sedentary movement (r=0.675 p= 0.011).
CONCLUSION AND SIGNIFICANCE: Actigraphy is feasible in pediatric HCP trials. Metrics may reflect real-life movement of children with HCP and be able to demonstrate interventional change that is associated with yet distinct from traditional outcome measures. As an unbiased, real-world method of motion data collection, bilateral actigraphy may be an important addition to HCP clinical trials.
STUDY PARTICIPANTS AND SETTING: Children with HCP aged 8-19 years (n=34, mean age±SD, #males) participated in a randomized trial across three pediatric ambulatory rehabilitation sites. Inclusion criteria included a confirmed perinatal ischemic stroke (term birth) with perceived limitations in function without severe hemiparesis or spasticity.
MATERIALS AND METHODS: Participants were fitted with bilateral Actiwatches for a 48-hour period before camp, post 1-week and post 6-months. Primary outcome was the Actigraphy Movement Asymmetry Index (AMAI) in addition to mean movement counts, the Assisting Hand Assessment (AHA), and Jebsen Taylor Test of Hand Function (JT). Differences in actigraphy metrics across time points were examined with a repeated measures ANCOVA adjusted for age. Relationships with standardized motor tests were examined using Pearson correlations.
RESULTS: Procedures were well tolerated with no adverse events. AMAI correlated with AHA at all timepoints (baseline: r= 0.354, p=0.047; post 1-week: r= 0.400, p=0.026; post 6-months: r=0.383, p=0.049, Figure 1). Correlations were identified between AHA change scores and day affected mean score with sedentary activity removed (r=0.359 p=0.047) and between mean night change and JT change (r=0.562 p= 0.046) with and without sedentary movement (r=0.675 p= 0.011).
CONCLUSION AND SIGNIFICANCE: Actigraphy is feasible in pediatric HCP trials. Metrics may reflect real-life movement of children with HCP and be able to demonstrate interventional change that is associated with yet distinct from traditional outcome measures. As an unbiased, real-world method of motion data collection, bilateral actigraphy may be an important addition to HCP clinical trials.
Presented by
Anna Bourgeois
<anna.bourgeois@ucalgary.ca>
Institution
Calgary Pediatric Stroke Program, Alberta Children’s Hospital; Department of Kinesiology, University of Calgary; Department of Clinical Neurosciences, Alberta Children’s Hospital Alberta Children’s Hospital Research Institute; Pediatrics and Community Health Sciences, Cumming School of Medicine, University of Calgary
Keywords
Stroke, cerebral palsy, actigraphy, rehabilitation
Characterizing the effects of tDCS-enhanced motor learning using robotic TMS motor mapping in typically developing children
Giuffre A, Zewdie E, Wrightson JG, Carlson HL, Kuo H-C, Babwani A, Kirton A
Abstract
Introduction:
The developing brain is highly capable of reorganizing itself after brain injuries, such as perinatal stroke. We have shown that non-invasive brain stimulation can enhance motor function in healthy children using conventional transcranial direct current stimulation (tDCS) and a more focal approach, high-definition tDCS (HD-tDCS). Transcranial magnetic stimulation (TMS) can safely and non-invasively produce cortical motor maps, individualized representations of primary motor cortex (M1) topography, that may reflect developmental and interventional plasticity. We aimed to characterize the effects of tDCS-enhanced motor function on cortical representations of hand muscles measured using robotic TMS.
Methods: Right-handed healthy children (n=24, 12-18 years) received five consecutive days of tDCS, HD-tDCS, or Sham while training their left hand on the Purdue Pegboard Task (PPT). 3T MRI acquired T1-weighted anatomical images were transferred to a robotic TMS neuronavigation system. Motor mapping was performed at baseline (Pre), day 5 (Post), and at 6-weeks retention time (RT). A 12x12 (7mm spacing) grid was placed bilaterally centered on M1. Four single-pulse TMS stimulations (120% resting motor threshold) were delivered per grid-point. Motor evoked potentials (MEP) in the first dorsal interosseous (FDI) of the left (LFDI) and right-hand (RFDI) were recorded and analyzed offline with map volume (MEP amplitude x grid size) as the primary outcome.
Results: Bilateral motor maps were collected in all but two participants due to time constraints. Linear mixed modeling showed a significant main effect of time on LFDI map volume (F=3.518, p=0.040) but not on group (F=0.425, p=0.660) while controlling for left-hand (trained) PPT scores. RFDI map volume showed a significant interaction of time and group (p=0.024) between tDCS and Sham (p=0.033) from RT-Post and Post-Pre time-points. In the HD-tDCS group, map volume showed a decreasing trend with time, though no significant interactions were found.
Conclusion: Robotic TMS motor mapping is safe and well-tolerated in children. tDCS-enhanced motor learning may alter motor map volume, a potential biomarker of interventional plasticity. Understanding such motor system neurophysiology in healthy children may help advance neuromodulatory therapies for children with motor disabilities.
Methods: Right-handed healthy children (n=24, 12-18 years) received five consecutive days of tDCS, HD-tDCS, or Sham while training their left hand on the Purdue Pegboard Task (PPT). 3T MRI acquired T1-weighted anatomical images were transferred to a robotic TMS neuronavigation system. Motor mapping was performed at baseline (Pre), day 5 (Post), and at 6-weeks retention time (RT). A 12x12 (7mm spacing) grid was placed bilaterally centered on M1. Four single-pulse TMS stimulations (120% resting motor threshold) were delivered per grid-point. Motor evoked potentials (MEP) in the first dorsal interosseous (FDI) of the left (LFDI) and right-hand (RFDI) were recorded and analyzed offline with map volume (MEP amplitude x grid size) as the primary outcome.
Results: Bilateral motor maps were collected in all but two participants due to time constraints. Linear mixed modeling showed a significant main effect of time on LFDI map volume (F=3.518, p=0.040) but not on group (F=0.425, p=0.660) while controlling for left-hand (trained) PPT scores. RFDI map volume showed a significant interaction of time and group (p=0.024) between tDCS and Sham (p=0.033) from RT-Post and Post-Pre time-points. In the HD-tDCS group, map volume showed a decreasing trend with time, though no significant interactions were found.
Conclusion: Robotic TMS motor mapping is safe and well-tolerated in children. tDCS-enhanced motor learning may alter motor map volume, a potential biomarker of interventional plasticity. Understanding such motor system neurophysiology in healthy children may help advance neuromodulatory therapies for children with motor disabilities.
Presented by
Adrianna Giuffre
<adrianna.giufffre1@ucalgary.ca>
Institution
University of Calgary, Calgary Pediatric Stroke Program
Keywords
Non-invasive brain stimulation, motor function, motor mapping, development
Conceptualization of Emotional Well-being for Children and Youth with Severe Motor and Communication Impairments
Samantha Noyek, Maude Champagne, Claire Davies, Beata Batorowicz, Nora Fayed
Abstract
Background: Children and youth with severe motor and communication impairments (SMCI) are unable to provide direct emotional self-expression through typical speech, writing with a paper and pencil, or using a standard keyboard. Children and youth with SMCI cannot be easily understood by unfamiliar people; primarily use a mobility aid to get around; and have difficulty handling objects. As a result, their emotional expressions can be missed or overlooked by peers and caregivers who do not know the child. Conceptual models or description of the essential components of their emotional indicators and overall emotional wellbeing is missing from the literature. This information is needed for rehabilitation scientists to measure, study, or develop solutions and interventions for their emotional wellbeing.
Purpose: To describe the indicators and components of emotional experiences for children and youth (5-25 years old) with SMCI. The project involved two components: phase 1 (photo/video data collection) and phase 2 (qualitative interviews).
Methods: Phase 1: Primary caregivers of children and youth with SMCI were involved in photo/video data collection to identify indicators and components of emotional well-being. Online video meetings were conducted to discuss photos/videos with primary caregivers. Phase 2: Qualitative interviews were conducted with other people who know primary child and youth participants well, to further understand emotional experiences of children and youth (e.g., siblings, teachers, respite workers).
Results: Nine child/youth participants were recruited. Twenty-nine qualitative interviews were conducted, transcribed, and coded using NVivo12 software. A conceptualization of emotional well-being for this population has been developed consisting of nine themes, encompassed by four domains: i) Core Attributes, ii) Personal Experience, iii) Surroundings, and iv) Expression and Reception. Findings highlighted the importance of familiar persons insight regarding child/youth emotional expressions and the positive characteristics of children and youth with SMCI which is neglected from the literature.
Conclusions: Emotional experiences of children/youth with SMCI are diversely expressed. Insights from primary caregivers and other familiar individuals, can be amplified to positively impact the care and participation of children/youth with SMCI.
Purpose: To describe the indicators and components of emotional experiences for children and youth (5-25 years old) with SMCI. The project involved two components: phase 1 (photo/video data collection) and phase 2 (qualitative interviews).
Methods: Phase 1: Primary caregivers of children and youth with SMCI were involved in photo/video data collection to identify indicators and components of emotional well-being. Online video meetings were conducted to discuss photos/videos with primary caregivers. Phase 2: Qualitative interviews were conducted with other people who know primary child and youth participants well, to further understand emotional experiences of children and youth (e.g., siblings, teachers, respite workers).
Results: Nine child/youth participants were recruited. Twenty-nine qualitative interviews were conducted, transcribed, and coded using NVivo12 software. A conceptualization of emotional well-being for this population has been developed consisting of nine themes, encompassed by four domains: i) Core Attributes, ii) Personal Experience, iii) Surroundings, and iv) Expression and Reception. Findings highlighted the importance of familiar persons insight regarding child/youth emotional expressions and the positive characteristics of children and youth with SMCI which is neglected from the literature.
Conclusions: Emotional experiences of children/youth with SMCI are diversely expressed. Insights from primary caregivers and other familiar individuals, can be amplified to positively impact the care and participation of children/youth with SMCI.
Presented by
Samantha Noyek
<11sen5@queensu.ca>
Institution
Queen’s University
Keywords
Emotional well-being, child health, self-report, qualitative research
Contralesional White matter supports language processing in perinatal stroke
Geeraert, B.L., Carlson, H.L., Kirton, A.
Abstract
INTRO:
Perinatal stroke occurs in 1:1100 births and is a common cause of lifelong disability. Children with perinatal stroke can develop low to near-normal language ability, depending upon lesion location and neuroplastic recruitment of undamaged tissue. Diffusion tensor imaging (DTI) can probe white matter microstructure to understand reorganization of cognitive networks following early injury. We applied DTI to investigate contralesional white matter in the language network of children with perinatal stroke. We hypothesized that contralesional tracts connecting key language regions would be associated with language skill.
METHODS: Children aged 6-18 years with perinatal stroke underwent a 3T MRI scan and neuropsychological exam. DTI: b=750s/mm2, 32 directions, 3 b=0s/mm2 volumes, 2.5mm isotropic voxels, 60 slices. Verbal memory and expressive language were assessed by the California Verbal Learning Test – Children’s Version (CVLT-C) and Developmental Neuropsychological Assessment Word Generation – Initial Letter (WG) tasks. The arcuate fasciculus (AF) and uncinate fasciculus (UF) were segmented in the contralesional hemisphere using RecoBundlesX5. Mean DTI metrics (fractional anisotropy [FA], mean diffusivity [MD], axial diffusivity [AD], radial diffusivity [RD]) were calculated for each tract. Linear mixed models were run in Jamovi6 for each tract to examine associations between FA, MD, AD, RD and CVLT-C or WG, controlling for age and sex.
RESULTS: 24 participants (13.4 ± 3.3y, 9F/15M) were recruited. FA and RD in the AF were associated with CVLT-C. FA, MD, and AD in the AF, and MD and RD in the UF were associated with WG. Models explained 6-23% of variance in language scores, as described in Table 1, with a mean variance of 16.8%. No age or sex effects were observed.
DISCUSSION: Contralesional white matter plays an important role in language processing in children with perinatal stroke. Broadly, markers of higher maturity were associated with better language task performance. Higher RD (indicating less myelin) was linked to higher CLVT-C scores in the AF, indicating there are exceptions to this rule. The role of the AF was emphasized by links to CVLT-C and WG, while the uncinate fasciculus was linked only to WG. This may be due to higher prevalence of damage to the arcuate in perinatal stroke.
METHODS: Children aged 6-18 years with perinatal stroke underwent a 3T MRI scan and neuropsychological exam. DTI: b=750s/mm2, 32 directions, 3 b=0s/mm2 volumes, 2.5mm isotropic voxels, 60 slices. Verbal memory and expressive language were assessed by the California Verbal Learning Test – Children’s Version (CVLT-C) and Developmental Neuropsychological Assessment Word Generation – Initial Letter (WG) tasks. The arcuate fasciculus (AF) and uncinate fasciculus (UF) were segmented in the contralesional hemisphere using RecoBundlesX5. Mean DTI metrics (fractional anisotropy [FA], mean diffusivity [MD], axial diffusivity [AD], radial diffusivity [RD]) were calculated for each tract. Linear mixed models were run in Jamovi6 for each tract to examine associations between FA, MD, AD, RD and CVLT-C or WG, controlling for age and sex.
RESULTS: 24 participants (13.4 ± 3.3y, 9F/15M) were recruited. FA and RD in the AF were associated with CVLT-C. FA, MD, and AD in the AF, and MD and RD in the UF were associated with WG. Models explained 6-23% of variance in language scores, as described in Table 1, with a mean variance of 16.8%. No age or sex effects were observed.
DISCUSSION: Contralesional white matter plays an important role in language processing in children with perinatal stroke. Broadly, markers of higher maturity were associated with better language task performance. Higher RD (indicating less myelin) was linked to higher CLVT-C scores in the AF, indicating there are exceptions to this rule. The role of the AF was emphasized by links to CVLT-C and WG, while the uncinate fasciculus was linked only to WG. This may be due to higher prevalence of damage to the arcuate in perinatal stroke.
Presented by
Bryce Geeraert
<blgeerae@ucalgary.ca>
Institution
University of Calgary, Cumming School of Medicine, Alberta Children’s Hospital Research Institute, Hotchkiss Brain Institute
Keywords
Perinatal stroke, white matter, language
Exploring the Experiences of Health Workers Recruiting for Clinical Trials in Mental Health
Athena Milios, Megan Aston, Emily Marshall, Patrick McGrath
Abstract
Most clinical trials fail to recruit the planned number of research participants, thus leading to underpowering of trials and sometimes outright failure of the studies. Recruitment for clinical research in mental health is often conducted by front-line mental health workers because they have direct contact with patients on a daily basis. The main objective of this study was to examine the recruitment experiences of mental health workers to identify and explore enablers and barriers to the recruitment of study participants. The secondary objective was to identify strategies for improving recruitment to mental health trials. The final objective was to identify strategies to improve mental health workers’ engagement in mental health trials (in order to increase recruitment). If mental health workers are not engaged and active in recruitment activities, then recruitment may be less effective, and the trials may not be able to proceed as planned.
The participants recruited for the current study were mental health workers involved in recruitment for mental health clinical trials. An interview guide was developed to conduct semi-structured qualitative interviews. Qualitative descriptive methodology was used to guide data collection. Data from the transcribed telephone interviews were analyzed using inductive thematic analysis. Four different types of enablers and barriers to recruiting for mental health trials were produced from the data, through the process of thematic analysis: health worker-related enablers and barriers (e.g., the attitudes, beliefs, and expectancies of health workers regarding mental health trials), participant-related enablers and barriers (e.g., ease of access for participants), study design-related enablers and barriers (e.g., inclusive eligibility criteria), and collaboration-related enablers and barriers (e.g., regular visits from the research team). Enablers and barriers also vary depending on the type of research trial being recruited for (e.g., e-mental health trials vs face-to-face mental health trials). Findings aligned with previous research on enablers and barriers to recruitment that had been investigated in trials looking at interventions for a variety of physical health conditions. They revealed insights into how health workers can most effectively be involved and engaged in recruitment for mental health clinical trials.
Presented by
Athena Milios
<athena.milios1@gmail.com>
Institution
Department of Psychiatry, Dalhousie University; Centre for Research in Family Health (CRFH), IWK Health Centre
Keywords
Clinical trials, participant recruitment, enablers, barriers, patient-oriented research
FATHERS MATTER: Enhancing healthcare experiences among fathers of children with developmental disabilities
Ogourtsova Tatiana, PhD OT (1,2,3*); O’Donnell E. Maureen, MSc MD FCFP (4,5); Chung Derrick (6); Gavin Frank (6); Bogossian Aline, PhD SW (8); & Majnemer Annette, PhD OT FCAHS (2,3,6,7)
Abstract
Background:
Being a parent of a child with a developmental disability (DD, e.g. cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological distress, physical health problems, financial difficulties, social isolation, as well as struggles with respect to traditional parenting roles. In relation to the latter, fathers’ involvement in caregiving in today’s society is increasing and is highlighted by its importance and positive contribution to their child’s development. However, fathers of children with DD report feeling excluded and marginalized by health-care providers (HCPs) when arranging for and getting involved in health-care services for their children. Currently, there is limited evidence as to what factors influence those experiences. We aimed to explore barriers to and facilitators of positive and empowering healthcare experiences, from the perspectives of fathers of children with DD and HCPs.
Methods: A mixed-method approach including quantitative (survey) and qualitative (semi-structured interview) strategies was used. Participants were fathers of children with DD and HCPs working in childhood disability. Data analysis consisted of using descriptive statistics and an inductive-thematic analysis of emergent themes.
Results: Fathers (n=7) and HCPs (n=13, 6 disciplines) participated. Fathers indicated that while they were moderately to very much satisfied with their interactions with HCPs, they reported that HCPs were only sometimes attentive to them during interactions. Fathers also revealed that positive interactions with HCPs in relation to their child had multiple benefits. Several themes related to barriers and facilitators of optimal interactions and parent-professional relationships emerged. These included session-factors (time, attention), personal-factors (knowledge of the condition, child and health-care system, acceptance versus denial, previous experiences, culture, stereotypes, pre-existing beliefs, stress levels, working schedule), and family dynamics. Participants offered several insights into the different strategies that can be implemented to promote optimal interactions between fathers and HCP.
Conclusion: We identified several barriers, facilitators, and improvement strategies for optimal interactions and enhanced parent-professional relationships from the perspectives of fathers and HCPs. These can be integrated by existing clinical settings in efforts to enhance current clinical practices and improve child- and parent-related outcomes.
Methods: A mixed-method approach including quantitative (survey) and qualitative (semi-structured interview) strategies was used. Participants were fathers of children with DD and HCPs working in childhood disability. Data analysis consisted of using descriptive statistics and an inductive-thematic analysis of emergent themes.
Results: Fathers (n=7) and HCPs (n=13, 6 disciplines) participated. Fathers indicated that while they were moderately to very much satisfied with their interactions with HCPs, they reported that HCPs were only sometimes attentive to them during interactions. Fathers also revealed that positive interactions with HCPs in relation to their child had multiple benefits. Several themes related to barriers and facilitators of optimal interactions and parent-professional relationships emerged. These included session-factors (time, attention), personal-factors (knowledge of the condition, child and health-care system, acceptance versus denial, previous experiences, culture, stereotypes, pre-existing beliefs, stress levels, working schedule), and family dynamics. Participants offered several insights into the different strategies that can be implemented to promote optimal interactions between fathers and HCP.
Conclusion: We identified several barriers, facilitators, and improvement strategies for optimal interactions and enhanced parent-professional relationships from the perspectives of fathers and HCPs. These can be integrated by existing clinical settings in efforts to enhance current clinical practices and improve child- and parent-related outcomes.
Presented by
Tatiana Ogourtsova
<tatiana.ogourtsova@mail.mcgill.ca>
Institution
1 Jewish Rehabilitation Hospital - Research, Department of Pediatrics, Laval, Quebec, Canada; 2 Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montreal, Quebec, Canada; 3 McGill University, School of Physical and Occupational Therapy, Faculty of Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada; 4 Provincial Health Services Authority, Vancouver, British Columbia, Canada; 5 University of British Columbia, Faculty of Medicine, Department of Pediatrics, Vancouver, British Columbia, Canada; 6 The Research Institute of the McGill University Health Center, Montreal, Quebec, Canada; 7 Montreal Children’s Hospital, Montreal, Quebec, Canada; 8 University of Montreal, School of Social Work, Montreal, Quebec, Canada
Keywords
fathers of children with disabilities, health-care experiences, qualitative, barriers and facilitators, interactions with health-care professionals
Providing Support to Families of Children and Youth with FASD
Pascal Gagné
Abstract
Offering support can take many forms and be provided in many ways across regions and for different target populations. Since 2018 and throughout different funding cycles, Health Nexus Support Groups have provided support to individuals with FASD and their families by meeting in person or virtually to provide FASD education, share latest information and resources, listen to stories and build resilience. Through reporting and informal conversations, Health Nexus assessed evidenced-based standards to guide FASD support group leaders. This communication assesses four elements crucial to designing effective support groups: 1) recognizing signs of success to nurture relationships and improve practice; 2) clarifying the role of support groups and their purpose; 3) determining which behaviour contrives sharing or have negative impacts on participant experience; 4) establishing clear rules for groups to ensure high ethical standards in service delivery. Results from our evaluation of support group activities indicate that quality of life is a major factor of appraisal of support groups to establish its value in terms of socioeconomic impact. This is manifest through quotes from participants and statistics relative to attendance and surveys that show that people will appreciate support groups where they feel comfortable, build rapport with support group leaders and other participants, and support each other through their individual journeys. They do not benefit from support groups when their experience is dampened by negative communication patterns. Effective support groups give people hope and make them more resilient because they are equipped with strategies and tools to cope with challenges, but most importantly, because they learn to appreciate the joys and gifts of neurodiversity. Groups can run smoothly with rules that structure discussion, enable turn taking, self-regulation and positive group dynamics. In order to do so, group evaluation, openness to feedback and introspection is critical to keep group activities flexible and responsive to community needs. This enables group leaders to rethink their activities (in-person or virtual/roundtable or learning by doing, etc.), address different topics (housing, transition to adulthood, sexuality, etc.), or provide help in multiple ways (counselling, coaching, teaching skills, etc.). This enables capacity building within the FASD community.
Presented by
Pascal Gagné
<p.gagne@healthnexus.ca>
Institution
Health Nexus
Keywords
Best Practice, Evidence-Based, FASD, Prenatal Alcohol Exposure, Support Group.
▼ 4. Knowledge Translation & Exchange Back to top
Child and Family Engagement in Child Health and Disability Evidence Syntheses: A Scoping Review
Lucy Wang (a), Dr. Samantha Micsinszki, PhD (a, b, c), Christina Gilman (d), Michelle Goulet-Barteaux (d), and Dr. Michelle Phoenix, PhD (a, b, c)
Abstract
Though stakeholder engagement in research has become increasingly popular, child and family engagement in child health and disability evidence syntheses represents a gap in the literature that is not well understood nor standardized. The purpose of this scoping review is to describe how children with disabilities and their families are engaged in evidence syntheses. This scoping review followed the protocol established by Arksey and O’Malley (2005) to investigate this gap in the literature. We partnered with two parents of children with disabilities who joined the project at the data extraction stage and have provided their perspective, input, and feedback on elements of data extraction and results in interpretation through meetings and email correspondence. Engagement with parent partners on this research provided valuable learning opportunities and areas of growth. A systematic search of five electronic databases identified 1860 unique articles. A total of 369 articles were screened at full-text and nine met the inclusion criteria. Most articles included parents of children/youth with disabilities in consultative roles where their unique life experiences helped to contextualize research findings. These roles often occurred during the stages of identifying the research question and/or analyzing/reporting the results. Few articles included engagement at the study selection and charting the data stages where rote tasks are dominant. Themes emerged about what children/youth with disabilities and their families felt was important about stakeholder engagement and areas to improve, such as the availability and accessibility of engagement opportunities, as well as the consistency of researcher stakeholder communication and information exchange. These results were consistent with the perspectives and experiences of our parent partners. Findings from this scoping review will help guide future child and family engagement in evidence syntheses and improve the stakeholder engagement landscape for children with disabilities and their families. Researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses, maintain consistent communication, and improve information accessibility for children/youth with disabilities and their families.
Presented by
Lucy Wang
<wangl123@mcmaster.ca>
Institution
(a) CanChild, McMaster University, (b) School of Rehabilitation Science, McMaster University, (c) Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, (d) Parents Partnering in Research Group
Keywords
Stakeholder, Family, Engagement, Evidence Synthesis, Neurodisability
E. GRIFFITHS - Complex Congenital Heart Defect
Katie Griffiths
Abstract
EG is single ventricle physiology and is one year old. He is developmentally on track and proceeds to recover beautifully.
EG was part of the MATCH study through Sick Kids Hospital in Toronto from Jan 2020 to May 2020 and followed closely post-birth. He received pre and post surgery imaging which detected a small stroke in the right thalamus and narrowing in the vessels on the right side of his brain. Due to lack of pre-surgery imaging, many cases aren't as easily detected. This as well as the amazing in utero images we received were the first pros to participating.
EG was a normal pregnancy for the most part. The only complication was hyperemesis, which was present in mom's previous pregnancy. EG also had a very normal delivery and was pink and screaming at birth. He required no additional interventions outside of the standard prostaglandin (PGE) pre surgery. In regards to mom's experience with MATCH, hyper-oxygenation is one of the lowest risk and easiest studies participated in.
There were varying degrees of nasal irritations and sleep difficulties as well as work related challenges. In home the cords were cumbersome but manageable. It was felt that these were minor and tolerable for the short duration of the study, especially considering the possible advantages to participating.
The staff working on the study demonstrated compassion, knowledge and excellent problem solving skills. When a problem arrived they approached it quickly and with understanding. They were able to troubleshoot with participants and provide comfort.
In summary EG's experience with MATCH and CHILD-BRIGHT in general has been overly positive. It is also evident by the condition of EG at birth and the status of his recovery that this study has a degree of success.
EG's parents express gratitude for the research and efforts made towards children health as a whole. Participating meant extra opportunities for EG and they dedicate EGs excellent quality of life partly to the MATCH study.
EG was part of the MATCH study through Sick Kids Hospital in Toronto from Jan 2020 to May 2020 and followed closely post-birth. He received pre and post surgery imaging which detected a small stroke in the right thalamus and narrowing in the vessels on the right side of his brain. Due to lack of pre-surgery imaging, many cases aren't as easily detected. This as well as the amazing in utero images we received were the first pros to participating.
EG was a normal pregnancy for the most part. The only complication was hyperemesis, which was present in mom's previous pregnancy. EG also had a very normal delivery and was pink and screaming at birth. He required no additional interventions outside of the standard prostaglandin (PGE) pre surgery. In regards to mom's experience with MATCH, hyper-oxygenation is one of the lowest risk and easiest studies participated in.
There were varying degrees of nasal irritations and sleep difficulties as well as work related challenges. In home the cords were cumbersome but manageable. It was felt that these were minor and tolerable for the short duration of the study, especially considering the possible advantages to participating.
The staff working on the study demonstrated compassion, knowledge and excellent problem solving skills. When a problem arrived they approached it quickly and with understanding. They were able to troubleshoot with participants and provide comfort.
In summary EG's experience with MATCH and CHILD-BRIGHT in general has been overly positive. It is also evident by the condition of EG at birth and the status of his recovery that this study has a degree of success.
EG's parents express gratitude for the research and efforts made towards children health as a whole. Participating meant extra opportunities for EG and they dedicate EGs excellent quality of life partly to the MATCH study.
Presented by
Katie Griffiths
Institution
Sick Kids Hospital - MATCH Study
Keywords
Patient-Partner Experience
Identifying best measures to assess pain in youth with brain-based developmental disabilities: A systematic review protocol
Kailyn Turner1, Stacy Grainger-Schatz*, Katelynn Boerner2, Chantelle Bouck*, Tammie Dewan1, Dacey Doyle*, Violeta Faulkner1, Lara Genik3, Mahrukh Kaimkhani1,Diane Lorenzetti1, Carly McMorris1, Meghan McMurtry3, Tim Oberlander2, & Kathryn Birnie1
Abstract
Background:
Pain is a common secondary condition that compromises daily function and quality of life for youth with brain-based developmental disabilities. Quality pain assessment is foundational for effective pain management, yet it is often challenging and may be overlooked in this vulnerable population due to potential differences in cognitive and/or communication abilities.
Objectives: To conduct a systematic review to: (1) identify and evaluate the quality of existing measures for assessing pain and related functioning in children with brain-based developmental disabilities; and (2) make evidence-informed recommendations regarding use of existing measures to facilitate assessment of pain.
Methods: Patient partners contributed to the design and scope of the review. Inclusion criteria: (1) peer-reviewed scientific articles published in English (i.e., empirical studies, review articles, commentaries, editorials); (2) youth aged 3 to 24 years old with brain-based developmental disabilities; (3) any type of pain (e.g., acute, chronic, nociceptive, neuropathic, nociplastic; IASP, 2020); (4) behavioural or patient-reported pain assessment measures (e.g., self-report, behavioural observation). Exclusion criteria: (1) grey literature (dissertations, conference abstracts); or (2) neurological and/or physiological pain assessment measures. The review protocol is registered with PROSPERO: CRD42021237444.
Preliminary Work: MEDLINE, EMBASE, CENTRAL, PsycINFO, CINAHL, and Web of Science were searched between April 9-16, 2021 and identified 9122 unique abstracts. Abstract screening is underway. Data extraction will capture use of measures assessing pain and functioning (e.g., emotional, physical, school, social) across populations and quality of available evidence.
Implications: This review will identify knowledge gaps to prioritize for future research, and provide guidance for assessing pain and related functioning in youth with brain-based developmental disabilities. This will enable improved identification, prevention, and treatment of pain in populations at-risk for poorly managed pain.
Objectives: To conduct a systematic review to: (1) identify and evaluate the quality of existing measures for assessing pain and related functioning in children with brain-based developmental disabilities; and (2) make evidence-informed recommendations regarding use of existing measures to facilitate assessment of pain.
Methods: Patient partners contributed to the design and scope of the review. Inclusion criteria: (1) peer-reviewed scientific articles published in English (i.e., empirical studies, review articles, commentaries, editorials); (2) youth aged 3 to 24 years old with brain-based developmental disabilities; (3) any type of pain (e.g., acute, chronic, nociceptive, neuropathic, nociplastic; IASP, 2020); (4) behavioural or patient-reported pain assessment measures (e.g., self-report, behavioural observation). Exclusion criteria: (1) grey literature (dissertations, conference abstracts); or (2) neurological and/or physiological pain assessment measures. The review protocol is registered with PROSPERO: CRD42021237444.
Preliminary Work: MEDLINE, EMBASE, CENTRAL, PsycINFO, CINAHL, and Web of Science were searched between April 9-16, 2021 and identified 9122 unique abstracts. Abstract screening is underway. Data extraction will capture use of measures assessing pain and functioning (e.g., emotional, physical, school, social) across populations and quality of available evidence.
Implications: This review will identify knowledge gaps to prioritize for future research, and provide guidance for assessing pain and related functioning in youth with brain-based developmental disabilities. This will enable improved identification, prevention, and treatment of pain in populations at-risk for poorly managed pain.
Presented by
Kailyn Turner
<kailyn.turner@ucalgary.ca>
Institution
1University of Calgary, AB 2University of British Columbia, BC 3University of Guelph, ON *Patient/Parent Partner
Keywords
Pain, assessment, measurement, functioning, brain-based developmental disabilities
MEGA-Mess Activity ebook for children with disabilities
Helen L. Carlson, Jacquie Hodge, Megan Metzler, Lisa Carsolio, Adam Kirton
Abstract
In their everyday lives, children with cerebral palsy (CP) rarely have the opportunity to meet a peer with similar physical disabilities. We are developing the MEGA-Mess Activity ebook, an electronic activity book featuring children who participated in the Stimulation for Perinatal Stroke - Optimizing Recovery Trajectories (SPORT) trial in Calgary, Edmonton, or Toronto. Each page in the activity book will showcase a child with CP highlighting their success stories for other children who also have physical disabilities. Each child can submit a favourite recipe, scientific experiment, craft or sport activity (or all four) that other children can do. Their page will also feature a short biography. We encourage sharing things they would like to tell other kids, what they do for fun, their hobbies, favourite movies, and more in the hopes that getting to know each other through fun activities will
extend the social benefits of the SPORT camp to many others who could not attend.
All of the activities submitted will be tested by other kids and families from SPORT prior to incorporation into the book to ensure activities are fun and at the appropriate skill level. Activities will also be reviewed by Therapy Specialists to maximize therapeutic aspects and to ensure safety. Anticipated outcomes include getting kids with CP using their hands, developing basic cooking skills, developing curiosity in art and science and showcasing children with CP to peers. In addition, the book will feature success stories of older kids and adults with CP who have interesting careers or have had great successes in their pursuits. We anticipate this will inspire and motivate the younger generation of children just starting their journey, engage our SPORT participants to help others with disabilities, and provide families with needed resources (e.g., peer/parent support groups, Jooay app).
Initial submissions (N=6) have been from Calgary and Edmonton and we hope to collect a total of twenty-five submissions for publication in this book. We will market and advertise via social media, parental support groups, clinics, newsletters, media releases, and research institutes. The ebook will be accessible online free of charge.
All of the activities submitted will be tested by other kids and families from SPORT prior to incorporation into the book to ensure activities are fun and at the appropriate skill level. Activities will also be reviewed by Therapy Specialists to maximize therapeutic aspects and to ensure safety. Anticipated outcomes include getting kids with CP using their hands, developing basic cooking skills, developing curiosity in art and science and showcasing children with CP to peers. In addition, the book will feature success stories of older kids and adults with CP who have interesting careers or have had great successes in their pursuits. We anticipate this will inspire and motivate the younger generation of children just starting their journey, engage our SPORT participants to help others with disabilities, and provide families with needed resources (e.g., peer/parent support groups, Jooay app).
Initial submissions (N=6) have been from Calgary and Edmonton and we hope to collect a total of twenty-five submissions for publication in this book. We will market and advertise via social media, parental support groups, clinics, newsletters, media releases, and research institutes. The ebook will be accessible online free of charge.
Presented by
Helen Carlson
<helen.carlson@ahs.ca>
Institution
Department of Pediatrics, University of Calgary
Keywords
Cerebral palsy, perinatal stroke, activity book, knowledge translation
Meeting youth where they are at: Co-creation of integrated knowledge translation videos for the READYorNot™ Brain-Based Disabilities Study Trial
Linda Nguyen* (1), Jessica Havens* (2), Kinga Pozniak* (3), Barb Galuppi (4), Sonya Strohm (4), Alicia Via-Dufresne Ley (5), Nadilein Mahlberg (4), Adrienne Kovacs (6), Ronen Rozenblum (7), Ariane Marelli (8), Jan Willem Gorter (9)
Abstract
Patient and family engagement is increasingly incorporated in health research to ensure greater impact. At previous CHILD-BRIGHT symposiums, we shared our experiences partnering with the Patient and Family Advisory Council (PFAC) to co-create the MyREADY Transition™ Brain-Based Disabilities App and to prepare for the READYorNot™ Brain-Based Disabilities Trial.
At the 2021 Virtual Symposium, we will apply the CHILD-BRIGHT integrated Knowledge Translation (iKT) tool to showcase our process to co-create a research video series as an iKT product to explain research concepts in youth-friendly language.
KT Goal: Participant recruitment is underway for our trial, and we wanted to increase knowledge about the study, as well as engagement and enthusiasm for research among youth.
Activity Description: Based on a preliminary scan of websites and consultation with the Child and Youth Advisory Council (CAYAC) at Alberta Children’s Hospital, we identified a need to develop resources to help explain research to youth (e.g., what it means to be part of a control group or intervention group).
Engagement Mechanism: We formed a subgroup of PFAC and researchers to:
i. Brainstorm ideas: We identified questions about research that could be explained to youth, such as: How does research work? What does the READYorNot™ Brain-Based Disabilities Trial mean for youth? What does it mean to be a research participant and why is it important?
ii. Design the storyboards and scripts: The series is comprised of nine short videos, each approximately 30-60 seconds, to describe various aspects of research. For example, How does a randomized controlled trial work? and Why did we make the App? Together, we drafted and revised scripts with graphics to illustrate the aims of each video.
iii. Create the videos: We collaboratively worked together to record narrations and create the videos. Draft videos were shared with the full team for feedback. The final video series is currently available online on our study website. Youth can select specific videos or play the videos sequentially.
Significance: The research video series co-created with PFAC is a shining example of co-development of an iKT product to address barriers and share the importance of youth participation in research.
At the 2021 Virtual Symposium, we will apply the CHILD-BRIGHT integrated Knowledge Translation (iKT) tool to showcase our process to co-create a research video series as an iKT product to explain research concepts in youth-friendly language.
KT Goal: Participant recruitment is underway for our trial, and we wanted to increase knowledge about the study, as well as engagement and enthusiasm for research among youth.
Activity Description: Based on a preliminary scan of websites and consultation with the Child and Youth Advisory Council (CAYAC) at Alberta Children’s Hospital, we identified a need to develop resources to help explain research to youth (e.g., what it means to be part of a control group or intervention group).
Engagement Mechanism: We formed a subgroup of PFAC and researchers to:
i. Brainstorm ideas: We identified questions about research that could be explained to youth, such as: How does research work? What does the READYorNot™ Brain-Based Disabilities Trial mean for youth? What does it mean to be a research participant and why is it important?
ii. Design the storyboards and scripts: The series is comprised of nine short videos, each approximately 30-60 seconds, to describe various aspects of research. For example, How does a randomized controlled trial work? and Why did we make the App? Together, we drafted and revised scripts with graphics to illustrate the aims of each video.
iii. Create the videos: We collaboratively worked together to record narrations and create the videos. Draft videos were shared with the full team for feedback. The final video series is currently available online on our study website. Youth can select specific videos or play the videos sequentially.
Significance: The research video series co-created with PFAC is a shining example of co-development of an iKT product to address barriers and share the importance of youth participation in research.
Presented by
Linda Nguyen, Jessica Havens, and Kinga Pozniak
<nguyel7@mcmaster.ca>
Institution
1 CanChild Centre for Childhood Disability Research, McMaster Autism Research Team, School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada; 2 Patient Partner, Alberta, Canada; 3 Parent Partner, Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; 4 Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; 5 Research Institute, McGill University Health Centre, Montreal, Québec, Canada; 6 Knight Cardiovascular Institute, Oregon Health and Science University, Portland, Oregon, USA; 7 Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts, USA; 8 McGill Adult Unit for Congenital Heart Disease Excellence, Montreal, Québec, Canada; 9 Department of Pediatrics, CanChild Centre for Childhood Disability Research, and School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada
Keywords
Patient-oriented research, family engagement, knowledge translation, health care transition
Power Imbalance in Family Engagement in Research: a Knowledge Translation Tool
Berna Elias, Catrine Demers, Delphine Gaudin-Drouelle & Maude Champagne
Abstract
Power imbalance in Family Engagement in Research (FER) is a reality that can occur unconsciously and at times, consciously. The research team or family members might not be aware of this dynamic. It is an invisible mechanism that can be embedded in the system, the structure, or the culture. Power imbalance in FER generates unwanted feelings from families within the relationship which will impact the partnership-building process and possibly the outcome of the project. Yet, to our knowledge, this important topic is not highlighted in any knowledge translation tool. Our goal was to create this tool, for our final project at the FER course at McMaster university, to help researchers wanting to partner with families in research. The results are a combination of an infographic that provides a quick and clear insight into power imbalance in research and a complementary list of reflective questions aiming to support the research team to become aware of any possible power imbalance in their practices. This tool is not an exhaustive list but rather an overview of the most important elements that can come into play. The infographic provides information on how power imbalance can occur in FER, how it impacts the partnership in FER, what are the factors that the research team can look at when they want to detect power imbalance in research, and how to prevent power imbalance in research throughout the stages of research. The complementary list of questions supports the research team in their self-reflection practice to ensure a shared power environment for an equal partnership in research. This resource was created in English and French to ensure its accessibility to a diverse audience that includes both English and French speakers. We hope that this resource will support researchers not only to become aware of power imbalance, but to help them reflect on their practices to build a strong and equitable relationship with families. We hope that this tool can contribute to creating a safe space for families to be engaged as equal partners in research.
Presented by
Berna Elias and Catrine Demers
<berna.elias@umontreal.ca>
Institution
Université de Montréal (Canada), University of Alberta (Canada), University of Western Brittany (France), Queens University (Canada)
Keywords
Power Imbalance, Family Engagement in Research, Partnership
WeeWheel: Enhancing Knowledge Translation of Pediatric Mobility through Tailored Resources
Rushton PW, Best KL, Ouellet B, Robert M, Routhier F, Kirby RL, Barwick M, Lafleur E, Côté A-A, Fortin-Haines L, Paré I, Dib T, Rice C, Nadeau C, Héroux D
Abstract
Background:
The Wheelchair Skills Program (WSP) is clinically effective but is underutilized in pediatric rehabilitation. Occupational therapists (OTs) have identified barriers to its use in this context, including lack of awareness of the need for wheelchair skills training, perceived complexity of the WSP, and lack of pediatric-specific training materials. To address these barriers, the objective of this study was to develop WSP knowledge transfer tools for the pediatric population (i.e., a storybook, instructional posters and a training workbook).
Method: Design: We used an iterative user-centered design approach. The first phase involved the development of the WSP educational resources related to a pediatric-relevant subset of WSP skills, and the second phase involved evaluation of the tools through focus groups and interviews. Participants: Eight OTs who worked in pediatric contexts, and 5 pediatric manual wheelchair users (PMWUs). Data Collection: The focus groups and interviews were conducted virtually with OTs and PMWUs, respectively, using a stakeholder-specific guide. Our focus group guide was piloted with our research team and the interview guide was piloted with our PMWU patient partner. Data Analysis: The Framework Method was used to deductively analyze the data.
Results: The OTs and PMWUs expressed satisfaction with the tools, described them as usable, relevant and feasible to integrate into wheelchair skills training. Both stakeholder groups provided suggestions on how to improve the tools (e.g., adjusting the head position of the character [OTs]; additions of details in the illustrations [PMWUs]). The OTs and PMWUs had several ideas for how to use the 3 tools (e.g., the storybook would be useful to help with the transition from stroller to wheelchair [OTs] and to raise awareness at school [PMWUs]).
Conclusion: Evidence suggests the WSP knowledge transfer tools seem to address barriers to wheelchair skills training in pediatrics previously identified by OTs. Our next steps will involve finalizing and sharing the tools using traditional dissemination activities (e.g., publication and presentation), social media dissemination activities (e.g., via the WSP website [www.wheelchairskillsprogram.ca]) and include additional skills. This project will ultimately facilitate future efforts to implement the WSP into pediatric rehabilitation contexts and improve wheelchair skills training among PMWUs.
Method: Design: We used an iterative user-centered design approach. The first phase involved the development of the WSP educational resources related to a pediatric-relevant subset of WSP skills, and the second phase involved evaluation of the tools through focus groups and interviews. Participants: Eight OTs who worked in pediatric contexts, and 5 pediatric manual wheelchair users (PMWUs). Data Collection: The focus groups and interviews were conducted virtually with OTs and PMWUs, respectively, using a stakeholder-specific guide. Our focus group guide was piloted with our research team and the interview guide was piloted with our PMWU patient partner. Data Analysis: The Framework Method was used to deductively analyze the data.
Results: The OTs and PMWUs expressed satisfaction with the tools, described them as usable, relevant and feasible to integrate into wheelchair skills training. Both stakeholder groups provided suggestions on how to improve the tools (e.g., adjusting the head position of the character [OTs]; additions of details in the illustrations [PMWUs]). The OTs and PMWUs had several ideas for how to use the 3 tools (e.g., the storybook would be useful to help with the transition from stroller to wheelchair [OTs] and to raise awareness at school [PMWUs]).
Conclusion: Evidence suggests the WSP knowledge transfer tools seem to address barriers to wheelchair skills training in pediatrics previously identified by OTs. Our next steps will involve finalizing and sharing the tools using traditional dissemination activities (e.g., publication and presentation), social media dissemination activities (e.g., via the WSP website [www.wheelchairskillsprogram.ca]) and include additional skills. This project will ultimately facilitate future efforts to implement the WSP into pediatric rehabilitation contexts and improve wheelchair skills training among PMWUs.
Presented by
Paula Rushton
<paula.rushton@umontreal.ca>
Institution
Université de Montréal, Université Laval, Dalhousie University, University of Toronto, CHU Sainte-Justine Research Center
Keywords
Wheelchair, training, knowledge translation, pediatrics
▼ 5. Training & Capacity Building Back to top
Improving education and process around care for children with gastrojejunostomy tubes
Esther J. Lee, Tessa Diaczun, Heather Lovelace
Abstract
ISSUE: The number of children with gastrojejunostomy (GJ) tubes has increased exponentially since 2010, yet resources do not exist to provide education or ongoing support to caregivers and there is no standard education provided at the time of GJ insertion. This quality improvement project will improve the care for children with GJ tubes via education and referral pathway.
BACKGROUND: Most children with GJ tubes have medical complexity. We know that care for children with medical complexity may be not optimal in the current health care system as we did not anticipate the increase in this population.
AIM STATEMENTS:
PHASE A
1. Ensure standardized education material for children & caregivers on GJ care by September 2021. 2. Ensure that 95% parents and caregivers of children with GJ tubes will receive standardized education on GJ care and management at time of GJ insertion or scheduled GJ change by December 2021. 3. Ensure family/caregiver and health care professionals are engaged throughout the project
PHASE B
4. Develop a standardized referral pathway at Children's and Women's Hospital (BC) for any patient being considered for a GJ tube by Mar 2022.
PROGRESS:
Completed • Environmental scan and stakeholder engagement via focus group and emails • Semi structured interviews with caregivers of children with medical complexity • Confirmed protected time for GJ clinical expert to have time to improve education material and process
In progress • Baseline data collection with IR • Development of education material and process • Initial meetings with core stakeholders re: referral pathway
RESULTS so far:
From focus group with various teams: • Education is not reliable - only one dedicated part time clinician, no specific resource on GJs, no standard education pathway, no standard process for validation of skills
From family/caregivers interviews: • Lack of education at time of GJ insertion • GJ insertion done at an early age and children have them for a long time • Many complications with the GJ and variable comfort in troubleshooting by caregivers • No one likes to go to the ER • Educational material preferred online in written and video format • Caregivers want access to a clinician with GJ expertise everyday
CHALLENGES • Managing expectations of various stakeholders who may not know how difficult it is to implement any changes in a complex system • How to have ongoing feedback from family/caregivers without imposing too much on their time and to have voice from family/caregivers with diverse backgrounds • How to make creative improvements in a system that is not able to offer any new resources
VALUABLE LESSONS: Although time consuming and challenging, the initial engagement and focus group with stakeholders are important to have buy in to make changes in the system
BACKGROUND: Most children with GJ tubes have medical complexity. We know that care for children with medical complexity may be not optimal in the current health care system as we did not anticipate the increase in this population.
AIM STATEMENTS:
PHASE A
1. Ensure standardized education material for children & caregivers on GJ care by September 2021. 2. Ensure that 95% parents and caregivers of children with GJ tubes will receive standardized education on GJ care and management at time of GJ insertion or scheduled GJ change by December 2021. 3. Ensure family/caregiver and health care professionals are engaged throughout the project
PHASE B
4. Develop a standardized referral pathway at Children's and Women's Hospital (BC) for any patient being considered for a GJ tube by Mar 2022.
PROGRESS:
Completed • Environmental scan and stakeholder engagement via focus group and emails • Semi structured interviews with caregivers of children with medical complexity • Confirmed protected time for GJ clinical expert to have time to improve education material and process
In progress • Baseline data collection with IR • Development of education material and process • Initial meetings with core stakeholders re: referral pathway
RESULTS so far:
From focus group with various teams: • Education is not reliable - only one dedicated part time clinician, no specific resource on GJs, no standard education pathway, no standard process for validation of skills
From family/caregivers interviews: • Lack of education at time of GJ insertion • GJ insertion done at an early age and children have them for a long time • Many complications with the GJ and variable comfort in troubleshooting by caregivers • No one likes to go to the ER • Educational material preferred online in written and video format • Caregivers want access to a clinician with GJ expertise everyday
CHALLENGES • Managing expectations of various stakeholders who may not know how difficult it is to implement any changes in a complex system • How to have ongoing feedback from family/caregivers without imposing too much on their time and to have voice from family/caregivers with diverse backgrounds • How to make creative improvements in a system that is not able to offer any new resources
VALUABLE LESSONS: Although time consuming and challenging, the initial engagement and focus group with stakeholders are important to have buy in to make changes in the system
Presented by
Esther J. Lee
<Esther.Lee@canuckplace.org>
Institution
BC Children’s Hospital
Keywords
Children with medical complexity, gastrojejeunostomy tubes, education
Integrating parent-partners as research team members: Creating the role of Family Liaison
Anne-Mette Hermansen, Laesa Kim, Hal Siden
Abstract
In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory Group reviews our project proposals and protocols and participating families provide feedback on their experience after graduating from one of our studies. However, in learning about patient-oriented research strategies through our engagement with the CHILD-BRIGHT network, we have come to realize that in order to fully partner with families, specifically parents of children participating in our research, we need to have an embedded team member who acts as a parent-partner in all our endeavours. Therefore we have created the role of Family Liaison as a fixed part of our team makeup and hired Laesa Kim to fill this position.
Laesa’s job goes beyond that of advisor for two important reasons: She holds a paid position within our staff group and her contribution to our program supersedes that which can be expected of volunteer committee members. The Family Liaison is a bridge between researchers and participants, not just in the connections she makes when translating the research objectives and protocols to participants, but also in bringing a parent or patient perspective to every stage of study design and roll out.
Along with Laesa’s specific job description comes expectations of rather unique credentials to successfully fill the role. Laesa shares in the lived experience of our participants as the mother of a medically complex child, with years of learning to understand and navigate health care systems. Her experience coupled with a disposition for connecting with health care providers as well as fellow parents of children needing health care while understanding and advocating for the specific needs of this population, positions her perfectly to fill this role.
We will describe the value of the Family Liaison within our team as an integral part of our research program while showing the power of investing in patient-oriented research strategies to advance our projects.
Laesa’s job goes beyond that of advisor for two important reasons: She holds a paid position within our staff group and her contribution to our program supersedes that which can be expected of volunteer committee members. The Family Liaison is a bridge between researchers and participants, not just in the connections she makes when translating the research objectives and protocols to participants, but also in bringing a parent or patient perspective to every stage of study design and roll out.
Along with Laesa’s specific job description comes expectations of rather unique credentials to successfully fill the role. Laesa shares in the lived experience of our participants as the mother of a medically complex child, with years of learning to understand and navigate health care systems. Her experience coupled with a disposition for connecting with health care providers as well as fellow parents of children needing health care while understanding and advocating for the specific needs of this population, positions her perfectly to fill this role.
We will describe the value of the Family Liaison within our team as an integral part of our research program while showing the power of investing in patient-oriented research strategies to advance our projects.
Presented by
Anne Mette Hermansen
<ahermansen@bcchr.ca>
Institution
BC Children’s Hospital Research Institute, UBC
Keywords
Family Liaison, Patient Oriented Research, Parent Partner, Laesa Kim
Reflections on the lessons learned about meaningful engagement through the development of Learning Together simulations
Samantha Micsinszki*, Beth Dangerfield*, Angel Chu, Dolly Menna-Dack, Nadia Tanel, Kathryn Parker, Michelle Phoenix (* denotes co-presenters)
Abstract
Including children and youth with disabilities and their families as partners in research is important so that the work is relevant to the populations it serves. However, working together on research teams can be challenging and researchers and family partners may lack the skills to engage in meaningful partnerships. Most training programs to date have been offered asynchronously and are self-paced. There is a lack of training programs that include both researcher and family perspectives in an accessible and inclusive environment. We developed “Learning Together” as a suite of simulation based co-designed training videos (modules) that can be offered synchronously with a trained facilitator to guide group learning on important real-world challenges that can occur in patient-oriented research. The simulations were co-designed by an interdisciplinary team and then video recorded with standardized patient actors. This presentation will focus on the experiences of our team members in working collaboratively throughout the project. We will reflect on the challenges, successes, and lessons learned throughout the process of co-designing this work, both on the simulation build day and as a research team. Partnership on the research team included two family partners (co-investigators) who were involved throughout the research project. As a research team, we found that it can be difficult to schedule team meetings and research activities that were a good fit for everyone. Although family partners want to be involved in the process, they may struggle to find time given other competing priorities (e.g., work, parenting, etc.). Challenges related to the simulation build included a lack of role clarity (e.g., “participant” vs. “partner”) and understanding of the co-design process. Logistics, such as timing of the simulation build day, coordinating multiple co-build sessions, and integrating standardized patient actors into the co-design process can be difficult. We learned to be responsive to unexpected changes and to ensure that everyone is starting at the same place. We are currently exploring how the Learning Together modules can be used to improve knowledge and attitudes about authentic and meaningful partnership in research and improve learners’ ability to engage in patient-oriented research.
Presented by
Samantha Micsinszki and Beth Dangerfield
<micsinss@mcmaster.ca>
Institution
McMaster University School of Rehabilitation Science; CanChild Centre for Childhood Disability Research; Holland Bloorview Kids Rehabilitation Hospital.
Keywords
Co-design, partnership, meaningful engagement, training
Training Service Providers on Early FASD Diagnosis and Intervention to Build Capacity Across Sectors
Pascal Gagné
Abstract
Health Nexus is launching its new FASD Training for Service Providers Across sectors titled “FASD: A Shared Responsibility.” The training, funded by the Government of Ontario aims to provide evidence-based information and best practices to health care professionals, clinicians, educators, community workers and many more. It meets a longstanding need in Ontario to supply service providers with an advanced training opportunity to build capacity for FASD service delivery and intersectoral collaboration.
The training has four modules: 1) why we should care; 2) the cost of misdiagnosis; 3) trauma and resilience; 4) opportunities for success. This online, self-guided training walks participants through FASD diagnosis guidelines, how to notice red flags, the financial and emotional cost of (not) getting a diagnosis, and useful interventions to improve quality of life and manage challenging behaviour. It distinguishes between trauma and FASD to enable more inclusive and culturally safe work environments. Finally, it presents many case studies to equip service providers with tools and strategies.
The design of this training with community partners and stakeholders led to a productive dialogue on gaps in FASD service delivery, but also on how to reduce stigma while addressing difficult topics. The advisory committees (consisting of consultants, caregivers and individuals with FASD) provided developers with many tips to educate physicians, clinical specialists, and other experts in their respective field. This meant moving beyond FASD101 to address insidious myths like: FASD is not a real disability; FASD is rare; alcohol can be consumed during pregnancy; people will grow out of their disability; people with FASD can, but they won’t…
To tackle misinformation and disinformation, several pedagogical strategies were used: citations and reference; testimonies from individuals, caregivers, and service providers; reflective questions and knowledge assessment questions; scenarios and case studies; and quizzes to evaluate knowledge retention.
The main takeaway: the importance of making small changes in current practices to accommodate for the disability. But when it comes to noticing FASD and raising awareness, a paradigm shift is required: FASD is more than a singular neurodevelopmental disability. It is a frequent, systemic issue with major socioeconomic costs.
The training has four modules: 1) why we should care; 2) the cost of misdiagnosis; 3) trauma and resilience; 4) opportunities for success. This online, self-guided training walks participants through FASD diagnosis guidelines, how to notice red flags, the financial and emotional cost of (not) getting a diagnosis, and useful interventions to improve quality of life and manage challenging behaviour. It distinguishes between trauma and FASD to enable more inclusive and culturally safe work environments. Finally, it presents many case studies to equip service providers with tools and strategies.
The design of this training with community partners and stakeholders led to a productive dialogue on gaps in FASD service delivery, but also on how to reduce stigma while addressing difficult topics. The advisory committees (consisting of consultants, caregivers and individuals with FASD) provided developers with many tips to educate physicians, clinical specialists, and other experts in their respective field. This meant moving beyond FASD101 to address insidious myths like: FASD is not a real disability; FASD is rare; alcohol can be consumed during pregnancy; people will grow out of their disability; people with FASD can, but they won’t…
To tackle misinformation and disinformation, several pedagogical strategies were used: citations and reference; testimonies from individuals, caregivers, and service providers; reflective questions and knowledge assessment questions; scenarios and case studies; and quizzes to evaluate knowledge retention.
The main takeaway: the importance of making small changes in current practices to accommodate for the disability. But when it comes to noticing FASD and raising awareness, a paradigm shift is required: FASD is more than a singular neurodevelopmental disability. It is a frequent, systemic issue with major socioeconomic costs.
Presented by
Pascal Gagné
<p.gagne@healthnexus.ca>
Institution
Health Nexus/University of Ottawa
Keywords
Diagnosis, Intervention, Fetal Alcohol Spectrum Disorder, Pregnancy, Training
“Recreated Experiences” of Individuals with Complex Communication Needs
Samantha Noyek, Elizabeth Delarosa, Maude Champagne, Claire Davies, Beata Batorowicz, Nora Fayed
Abstract
Background:
Individuals with complex communication needs may face difficulties describing extensive subjective or experiential information through i) speech, ii) writing using a pencil and paper, iii) typing using a standard computer keyboard. Although patient reported outcome measures and patient reported experience measures can capture information about this group through proxy-report, we cannot solely rely on the responses of a single proxy for experiential information. Comprehensive approaches to understand the lived experiences of individuals whose self-report is difficult to capture due to profound motor, communication, and/or cognitive impairments, do not exist.
Purpose: To provide guidance to other disability researchers on how to study subjective, but highly important experiences directly from individuals with profound, motor, communication, and/or cognitive impairments. We describe our “recreated experiences” method which enables experiences of this population to be heard through comprehensive insight, combining visual data and qualitative interviews.
Methods: We present three strategies that together enable a recreated experiences method: i) Photo and video data collection via a primary guardian ii) Qualitative interviews with the primary guardian focused on photo/video data iii) Qualitative interviews with familiar people of the primary individual whose experiences we are attempting to recreate. We suggest a reflexive analytical approach to enrich the understanding of recreated experiences of the primary individual. Analyses considered multiple perspectives, from researchers unfamiliar to the primary individual with various educational, professional, and personal experiences.
Results: Our method is described through a case study example. Each strategy of our method specifically generates diverse knowledge which contributes to the recreated experience.
Conclusions: Our method highlights the importance of furthering research to understand the experiences of individuals who cannot traditionally self-express; lending insight upon possibilities for enhancing care, participation opportunities, and overall well-being. The methodological approach provides a toolkit for other childhood disability researchers to include children and adults with complex communication in research about their subjective experiences.
Purpose: To provide guidance to other disability researchers on how to study subjective, but highly important experiences directly from individuals with profound, motor, communication, and/or cognitive impairments. We describe our “recreated experiences” method which enables experiences of this population to be heard through comprehensive insight, combining visual data and qualitative interviews.
Methods: We present three strategies that together enable a recreated experiences method: i) Photo and video data collection via a primary guardian ii) Qualitative interviews with the primary guardian focused on photo/video data iii) Qualitative interviews with familiar people of the primary individual whose experiences we are attempting to recreate. We suggest a reflexive analytical approach to enrich the understanding of recreated experiences of the primary individual. Analyses considered multiple perspectives, from researchers unfamiliar to the primary individual with various educational, professional, and personal experiences.
Results: Our method is described through a case study example. Each strategy of our method specifically generates diverse knowledge which contributes to the recreated experience.
Conclusions: Our method highlights the importance of furthering research to understand the experiences of individuals who cannot traditionally self-express; lending insight upon possibilities for enhancing care, participation opportunities, and overall well-being. The methodological approach provides a toolkit for other childhood disability researchers to include children and adults with complex communication in research about their subjective experiences.
Presented by
Samantha Noyek
<11sen5@queensu.ca>
Institution
Queen’s University
Keywords
▼ 6. COVID-19: Research & Virtual Care Back to top
Ensuring equity and inclusion in virtual care best practices for youth with pain and medical complexity
Gillian Backlin (1,2), Isabel Jordan (1), Laesa Kim (1), Justina Marianayagam (1,3), Tieghan Killackey (5), Corinne Lalonde (2), Frank Gavin (1,2), Tim Oberlander (4), Hal Siden (4), Jennifer Stinson (5), & Kathryn Birnie (6)
Abstract
Background:
The COVID-19 pandemic necessitated a rapid and large-scale shift to virtual care. We conducted a rapid systematic review in May 2020 to identify best
practices for virtual care for youth with chronic pain and their families. This knowledge synthesis was summarized in a 1-page infographic (available at
www.partneringforpain.com/virtual-care) and highlighted recommendations for leveraging and implementing virtual care, selecting platforms, and knowledge gaps. Although youth with medical complexity often experience pain, their perspectives were not represented in the available scientific literature.
Objectives: The goal of this knowledge translation activity was to ensure that virtual care recommendations for pediatric chronic pain are equitable and inclusive of youth with medical complexity and their families.
Methods: We conducted 4 online consultation sessions with 3 youth with pain and medical complexity, 5 parents/caregivers, and 6 health professionals. Patient partners co-designed and co-facilitated each of the consultation sessions. Each session asked about individuals’ experiences with virtual care and their feedback on the identified best practices for virtual care for youth.
Findings: Youth, parents/caregivers, and health professionals commented on benefits and challenges of virtual care, and identified considerations related to consistency of providers, accessibility, information sharing, patient preference/choice, and integration with face-to-face care and across care settings (e.g., home-based therapies, community providers).
Implications: Findings from these consultation sessions will ensure that the unique needs of youth with medical complexity and their families will be addressed in uptake and engagement in virtual care solutions for chronic pain.
Objectives: The goal of this knowledge translation activity was to ensure that virtual care recommendations for pediatric chronic pain are equitable and inclusive of youth with medical complexity and their families.
Methods: We conducted 4 online consultation sessions with 3 youth with pain and medical complexity, 5 parents/caregivers, and 6 health professionals. Patient partners co-designed and co-facilitated each of the consultation sessions. Each session asked about individuals’ experiences with virtual care and their feedback on the identified best practices for virtual care for youth.
Findings: Youth, parents/caregivers, and health professionals commented on benefits and challenges of virtual care, and identified considerations related to consistency of providers, accessibility, information sharing, patient preference/choice, and integration with face-to-face care and across care settings (e.g., home-based therapies, community providers).
Implications: Findings from these consultation sessions will ensure that the unique needs of youth with medical complexity and their families will be addressed in uptake and engagement in virtual care solutions for chronic pain.
Presented by
Gillian Backlin and Isabel Jordan (patient partners)
<kathryn.birnie@ucalgary.ca>
Institution
1 Patient Partner, 2 CHILD-BRIGHT NYAP, 3 Northern Ontario School of Medicine, 4 BC Children’s Hospital/University of British Columbia, 5 The Hospital for Sick Children/University of Toronto, 6 University of Calgary
Keywords
Virtual care, pain, medical complexity, patient engagement
Participation in leisure through Inclusive Online Activities
Mehrnoosh Movahed, Ishana Rue*, Tamara Sogomonian*, Paul Yoo*, Annette Majnemer, Keiko Shikako-Thomas
Abstract
Background:
Participation of children in leisure activities is a key determinant of their physical and mental health. Studies showed that children with disabilities are at a higher risk of exclusion in several forms of social participation including leisure activities. The COVID-19 pandemic has further limited children's participation in leisure activities. As a result, children with disabilities may be less active while feeling more isolated and stressed. With massive health campaigns including self-isolation, social distancing, and stay-at-home recommendations, online communities and activities are becoming more popular, and connections are taking on growing importance.
Aims:
The objective of this study is to identify factors that may affect the participation of children with disabilities in online activities.
Methods: Semi-structured interviews were conducted by phone/internet with two groups of participants; 1. service providers offering inclusive online leisure activities, 2. parents of children with disabilities who have engaged in online leisure activities. The open-ended questions focused on the description of the online activity offered, what adaptations were made to transform it into the online format, and what has made it inclusive or not for children and youth with disabilities. Interpretative descriptive qualitative analysis was conducted.
Results: Fifteen interviews were conducted. The features that could prevent or facilitate children’s participation in online activities were categorized based on the characteristics of activities, children and their families, and organizations. Additionally, required accommodations and resources were identified.
Conclusion: This study identified important characteristics of inclusive online activities for children with disabilities and provided suggestions on how to make future online activities inclusive; individual and general accommodations, awareness and access to information, stakeholders involvement, financial and technology resources, variety of accessible activities (in different communication platforms and formats) and training of the facilitators to meet children’s needs should be considered in every activity. The findings can inform guidelines for the development of future inclusive online activities which can be used by different stakeholders.
Results: Fifteen interviews were conducted. The features that could prevent or facilitate children’s participation in online activities were categorized based on the characteristics of activities, children and their families, and organizations. Additionally, required accommodations and resources were identified.
Conclusion: This study identified important characteristics of inclusive online activities for children with disabilities and provided suggestions on how to make future online activities inclusive; individual and general accommodations, awareness and access to information, stakeholders involvement, financial and technology resources, variety of accessible activities (in different communication platforms and formats) and training of the facilitators to meet children’s needs should be considered in every activity. The findings can inform guidelines for the development of future inclusive online activities which can be used by different stakeholders.
Presented by
Mehrnoosh Movahed
<mehrnoosh.movahed@mcgill.ca>
Institution
School of Physical and Occupational Therapy, McGill University; * in alphabetical order
Keywords
Children with disabilities, Participation, Accessibility, Leisure, Online activities
Reflections on conducting patient-oriented research during a global pandemic
1 Patrick Jachyra; 1 Yona Lunsky; 2 Noah Barnett, Austin; 2 Cosgrove; 2 Sheldon Gaboury; 2,3 Windemere Jarvis; 2,3 Evdokia Anagnostou
Abstract
The global COVID-19 pandemic has impacted the lives of individuals across the world. The onset of the pandemic has also impacted research and has contributed to unique challenges, opportunities, and limitations to conducting patient-oriented research. Drawing on a study exploring how healthcare professionals can optimally initiate and foster conversations about mental health among youth with neurodevelopmental disabilities, we draw on our experiences to share some of our major learnings throughout the COVID-19 pandemic.
In this presentation, we offer a series of reflections on how the pandemic has challenged the conduct of our research study in many different ways and prompted us to re-think some of our research practices. Despite the challenges that have come with the pandemic, we also reflect on how the pandemic also has provided unique opportunities to make research practices more accessible using virtual platforms when conducting patient-oriented research. We conclude the presentation by drawing on our learnings to highlight potential avenues on how to support patient-oriented research during a pandemic.
Presented by
Patrick Jachyra
<patrick.jachyra@camh.ca>
Institution
1 Centre for Addiction and Mental Health, 2 Province of Ontario Neurodevelopmental Disorders Network, Bloorview Research Institute, 3 Holland Bloorview Kids Rehabilitation Hospital
Keywords
COVID-19, neurodevelopmental disabilities, youth, patient-oriented research
Use of a leisure activity mobile app for children with disabilities following the addition of online activities during COVID-19
Paul Yejong Yoo, Mehrnoosh Movahed*, Ishana Rue*, Annette Majnemer, Keiko Shikako-Thomas *In alphabetical order
Abstract
Background/Objectives:
Participation of children with disabilities in leisure activities is found to have key health benefits and is a human right as per the United Nations. Children with disabilities face participation restrictions in comparison to typically developing children. With the SARS-CoV-2 (COVID-19) global pandemic and subsequent public health measures, facilities providing the listed leisure activities on Jooay, a free mobile and web-based app listing leisure opportunities for children with disabilities, were closed. The objective of this study was to describe the usage of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the usage of the Jooay app.
Methods: Retrospective study which compared the Jooay app usage between March 2020 and February 2021 to the usage between March 2019 and February 2020, by Jooay users. IBM SPSS 27 was used to perform a Spearman rank correlation analysis between the number of online activities available to users and the app usage from May 2020 to February 2021.
Results: Active usage of the Jooay app from March 2020 to February 2021 dropped an average of 64.2% compared to that of 2019-2020. Largest monthly drop in usage was observed in May 2020 (88.8%). There was a strong, positive correlation between the number of active users and the number of online activities listed on the app (rs = 0.900, P = .01).
Conclusions: The usage of Jooay decreased during the COVID-19 pandemic. The subsequent listing of online activities on the app had a strong, positive correlation with the usage of the Jooay app. The provision of online leisure opportunities during the pandemic could lead to increased participation, which is essential and beneficial for the physical and mental wellbeing of children with disabilities and their families.
Methods: Retrospective study which compared the Jooay app usage between March 2020 and February 2021 to the usage between March 2019 and February 2020, by Jooay users. IBM SPSS 27 was used to perform a Spearman rank correlation analysis between the number of online activities available to users and the app usage from May 2020 to February 2021.
Results: Active usage of the Jooay app from March 2020 to February 2021 dropped an average of 64.2% compared to that of 2019-2020. Largest monthly drop in usage was observed in May 2020 (88.8%). There was a strong, positive correlation between the number of active users and the number of online activities listed on the app (rs = 0.900, P = .01).
Conclusions: The usage of Jooay decreased during the COVID-19 pandemic. The subsequent listing of online activities on the app had a strong, positive correlation with the usage of the Jooay app. The provision of online leisure opportunities during the pandemic could lead to increased participation, which is essential and beneficial for the physical and mental wellbeing of children with disabilities and their families.
Presented by
Paul Yoo
<paul.yoo@mail.mcgill.ca>
Institution
McGill University
Keywords
Children with disabilities, Participation, Online activities, COVID-19, Pandemic, Leisure
▼ 7. Brainstorming Sessions Back to top
Brainstorming #1: Informed Consent/Assent Forms
Carrie Costello
Abstract
Consent is not informed if the participant can't read or understand the form. How do we make consent and assent forms in child health appropriate to an inclusive audience (and oh yah, still make it through Research Ethic Boards)?
In this Zoom room, hosted by Mathias and Gillian (CHILD-BRIGHT National Youth Advisory Panel) and Carrie (CHILD-BRIGHT parent liaison), we are looking to compile a list of suggestions, ideas and examples of consent and assent forms that work. Ideas from researchers, youth, parents and trainees all welcome! Come help us figure out how to make consent truly informed.
In this Zoom room, hosted by Mathias and Gillian (CHILD-BRIGHT National Youth Advisory Panel) and Carrie (CHILD-BRIGHT parent liaison), we are looking to compile a list of suggestions, ideas and examples of consent and assent forms that work. Ideas from researchers, youth, parents and trainees all welcome! Come help us figure out how to make consent truly informed.
Presented by
Carrie Costello, Mathias Castaldo, and Gillian Backlin
Institution
Keywords
Consent
Brainstorming #2: How to involve the community to support the funding of important child health research?
Katie Griffiths and Patrick Lafferty
Abstract
In general, child health research is underfunded. What strategies can the community employ to better advocate for additional funding opportunities and secure brighter futures?
In this session Katie Griffiths and Patrick Lafferty will challenge the audience to explore the role that the community can play in advocating for research funding dollars.
In this session Katie Griffiths and Patrick Lafferty will challenge the audience to explore the role that the community can play in advocating for research funding dollars.
Presented by
Katie Griffiths & Patrick Lafferty
Institution
Keywords
Funding