Announcing the recipients of the 2021 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research

CHILD-BRIGHT is delighted to announce the recipients of the 2021 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research.

The fellowship is designed to enhance the training experience of graduate students and postdoctoral fellows who are engaged in patient-oriented research (POR) relating to brain-based developmental disabilities in children. It also aims to increase patient engagement throughout the process by enriching current POR practices or augmenting the research project.

POR is integral to evidence-informed health care and CHILD-BRIGHT is proud to support the POR projects of the following six recipients:

1. Adapting in-home data collection for families of children with severe neurological impairment 

Recipient: Katelynn Boerner 

Project Summary: As a co-investigator of the Living Lab at Home (LLAH) research initiative, led by PIUO Co-Principal Investigator Tim Oberlander, Katelynn has been helping develop a platform for researchers to gather data about potential markers for patient distress at home. Katelynn is now seeking to understand how to adapt this platform to better serve families of adolescents with severe neurological impairment (SNI). 

With this project, Katelynn aims to answer four research questions: (1) How do families of adolescents with SNI feel about in-home data collection, and will they engage in it? (2) What adaptations would be required to make this type of data collection feasible for, and reduce burden on, families? (3) What are these families’ research priorities? (4) Can the information gathered through this project be adapted into a platform for conducting community-based research for families across the developmental spectrum? 

2. HEIGHTEN: Home-based Early Intensive Hemiparesis Therapy: Engaging Nurture

Recipient: Alicia Hilderley

Project Summary: Early intervention is increasingly recognized as critical for optimizing the long-term health and wellbeing of infants and toddlers with hemiplegic cerebral palsy (HCP), or CP affecting one side of the body. However, questions remain about the ideal format. Coaching caregivers to deliver upper limb therapy at home seems promising. This format could allow for a higher therapy dose at lower cost, make therapy more easily accessible for families, and encourage lasting improvements in hand and arm function.

With this project, working under the supervision of SPORT Principal Investigator Adam Kirton, Alicia aims to answer two research questions: (1) Is a home-based upper limb therapy program for infants and toddlers with HCP feasible for, and acceptable to, caregivers and therapists? (2) Is this program effective in achieving functional goals and in improving arm/hand function for infants and toddlers with HCP?

3. The Examination Under Anesthesia (EUA) Project: Optimizing care and minimizing trauma in children and youth with severe neurodevelopmental disorders and behavioural complexity requiring sedation

Recipient: Aaron Ooi

Project Summary: Parents of children and youth with brain-based developmental disabilities and behavioural complexity have often voiced their frustration with the difficulties in coordinating care between health services for their child. Such difficulties in coordination often results in inequitable access to medical examinations and investigations that frequently require anesthesia.  The process for accessing such procedures is also frequently traumatic for patients, caregivers, families and staff, as even for simple procedures such as blood tests, multiple adults can often be required to restrain the child.

With this project, and working under the supervision of PIUO project Co-Investigator Anamaria Richardson, Aaron aims to record accounts of the lived parental experiences in these situations and amplify their narratives. It is hoped that these narratives will subsequently inform decision makers at a management and operations level in planning for, and improving, current sedation services for these patients.

4. Enhancing access and engagement in pediatric telerehabilitation for children with neurodevelopmental disabilities and their families

Recipient: Meaghan Reitzel

Project Summary: COVID-19 restrictions have limited access to in-person children’s rehabilitation services. Service providers have pivoted to supporting families using telerehabilitation platforms to provide therapeutic services remotely. Although convenient, using these platforms can continue to present barriers for children and families needing to access crucial services.

With this project, Meaghan aims to co-design and evaluate innovative solutions that will enhance the accessibility of, and engagement in, telerehabilitation for children with brain-based developmental disabilities. In collaboration with patient-partners (parents of a child with a  brain-based developmental disability) and a knowledge user partner (KidsAbility), Meaghan will: (1) examine the patterns of missed telerehabilitation visits; (2) develop and implement innovative solutions to enhance access and engagement in telerehabilitation; (3) evaluate the implementation of solutions at a Children's Treatment Centre in Ontario.

5. Codesigning and evaluating a workplace disability disclosure decision-aid and planning tool for autistic youth and young adults to enhance self-determination and decision-making skills

Recipient: Vanessa Tomas

Project Summary: Canadian youth and young adults on the autism spectrum face underemployment (i.e., lower pay/hours, tasks that are below their intellectual potential) and shockingly low employment rates despite their willingness to work. Disclosing their autism and/or related needs at work may improve employment outcomes, but the decision-making process around whether and how to disclose can be complex. As part of her doctoral research, Vanessa worked to better understand the workplace disclosure experiences of Canadian autistic youth and adults. Her findings revealed the need for a disclosure decision-aid and planning tool that is sensitive to intersectional identities and cultivates decision-making and self-determination skills, which she now aims to co-design and evaluate in collaboration with four autistic youth and young adult partners.

With this project, Vanessa aims to answer the research question: What is the usability, feasibility, and perceived impact of such a disclosure decision-aid and planning tool for autistic youth and young adults when it comes to enhancing decision-making and self-determination skills?

6. Improving Decision Making in the Neonatal Intensive Care Unit – a Quality Improvement Initiative 

Recipient: Maya Dahan

Project Summary:  Maya is working on a tool to help medical teams working in the neonatal intensive care unit (NICU) collect, document, and transfer the essential information that clinicians need to know to best support newborn babies and families. This tool will standardize information-gathering and develop a process for its implementation based on parental and medical team input. It is particularly important for this information to be well documented and transferred in the NICU, because most infants in the NICU are hospitalized for a prolonged period of time and are cared for by different care providers. Without standardization, there is significant opportunity for errors and omissions that can negatively impact the family’s partnership with the medical team.  

With this project, working under the supervision of CCENT Principal Investigator Paige Church, Maya aims to enhance communication between families of infants and the NICU staff about the family’s context, values, and goals and how they affect their decision-making process. In so doing, she hopes to shed light on how an interdisciplinary team can improve their communication with families around their context, values, fears, and goals while creating a framework for improvement. 

Announcing the Recipients of the 2020 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research

We are delighted to announce the recipients of the 2020 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research. 

The fellowship is designed to enhance the training experience of graduate students and postdoctoral fellows who are engaged in patient-oriented research (POR) relating to brain-based disabilities in children. It also aims to increase patient engagement throughout the process by enriching current POR practices or augmenting the research project. 

POR is integral to evidence-informed health care, and CHILD-BRIGHT is proud to support the POR projects of the following seven recipients of our inaugural fellowship:  

1. Towards an Understanding of Families' Experiences of Language Assessment in Children Growing Up with Cerebral Palsy and Complex Communication Needs

Recipient: Jael Bootsma

Project Summary: Since children’s rehabilitation therapists have identified the implementation of family-centred care in practice as an area for improvement, a critical examination of assessments of spoken language comprehension is needed. One promising accessible assessment tool, the Computer Based instrument for Low motor Language Testing (C-BiLLT), can be used to examine receptive language in children with complex communication needs.  

With this project, Jael aims to answer the research question: “What can we learn from the experiences of families and expert users about the family-centeredness of assessing spoken language comprehension using the C-BiLLT in children who have cerebral palsy and complex communication needs?”  

2. Supporting Children with Special Needs in Schools: a Guided Stakeholder-oriented Knowledge Translation Intervention to Optimize Collaboration Between Occupational Therapists and Teachers

Recipient: Lina Ianni

Project Summary:  Participation of children with disabilities in mainstream education is restricted, and although rehabilitative services are provided in inclusive school settings to support these children, service is often limited.  

This project explores the use of interprofessional collaboration (IPC) models as new methods of service delivery to address this issue. These models involve different professional stakeholders (e.g. school occupational therapists and elementary school teachers) who are key to ensuring students’ successful participation in school.  

With this project, Lina aims to answer the research question: “Could a guided knowledge translation intervention enhance IPC knowledge, attitudes and practice behaviours of school occupational therapists and elementary school teachers involved in supporting students with disabilities who are integrated in mainstream schools?”

3. Perspectives of Immigrant Teens with neurodisabilities Preparing for the Adult health care Transition (PITPAT)

Recipient: Sandra Abdel Malek 

Project Summary: Health care transition, or the shift from pediatric to adult services, can be a challenge for many individuals with brain-based disabilities (BBD). Much of our current knowledge about this transition comes from perspectives of parents and adolescents in western contexts. However, different cultural environments play an important role in a person’s experience of disability, and little is known about the experience of adolescents with BBD who have immigrated to a western country like Canada.  

Given that the milestones associated with adulthood are often perceived differently in various cultures, Sandra “aims to explore the lived experiences of immigrant adolescents with BBD as they prepare to make the transition from pediatric to adult health care.” 

4. Implementation and Evaluation of “Learning Together” Simulations to Support Researchers, Parents, Youth, and Trainees to Engage in Pediatric Rehabilitation Research

Recipient: Samantha Micsinszki

Project Summary: In Canada, few training opportunities exist to provide practical applications of the knowledge and skills needed to engage in authentic and meaningful partnerships in children’s rehabilitation research. 

A suite of four simulations called “Learning Together” may have the potential to address this problem. These simulations were co-designed by youth with disabilities, parents of children with disabilities, trainees, staff, and researchers.  

Samantha aims to determine if researchers, staff, trainees, youth with disabilities, and parents of children with disabilities demonstrate improved knowledge and attitudes about authentic and meaningful partnership after completing the simulations.  Samantha will also examine whether participants report improved self-perceived ability to engage in POR after completing the simulations. 

5. Building Sibling Partnerships in the BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study

Recipient: Linda Nguyen 

Project Summary: During the transition from childhood to adult health care, youth with brain-based disabilities (BBD) often rely on family support from parents and siblings to assist them. To be able to provide that support, siblings require knowledge and skills. However, limited resources are available to inform and guide siblings during this process.  

Given the need for knowledge on how sibling relationships can influence the process of health care transition for youth with BBD, Linda plans “to develop a deeper understanding of typically developing siblings’ experiences, roles, and responsibilities in their relationship with their sibling with a BBD.” 

6. Cognitive Interventions for Children and Youth with Neurodevelopmental Problems

Recipient: Jala Rizeq 

Project Summary: Youth with disorders that impact neurodevelopment often have difficulties with executive functioning and emotional regulation. To date, several interventions have shown promise in improving these functions, particularly video and game-based interventions.  

However, these improvements have yet to be demonstrated while looking at clinical symptoms (e.g. academic performance, emotional regulation and behavioural problems).  

Jala aims to determine whether improvements gained in executive functions through cognitive training with children with neurodevelopmental/brain-based disorders transfer to improvements in daily life outcomes.  

7. Co-occurring Physical Disabilities and Mental Health Problems in Youth: Current Practices, Emerging Needs and Future Directions in Pediatric Rehabilitation

Recipient: Stephanie Tremblay 

Project Summary: Youth aged 15 to 24 with physical disabilities who are preparing for transition from the pediatric to adult heath care systems often have complex needs and can experience both physical and mental health problems. However, receiving complete, integrated care within one organization is not always common practice. In addition, mental health is often overlooked or treated separately from physical health by different health professionals, which complicates treatment coordination.  

Stephanie aims to “examine the organization and delivery of pediatric rehabilitation services for youth with neurological and neuromuscular disorders and co-occurring mental health problems.” This work will identify current rehabilitation practices, procedures and needs from the perspectives of both service providers (therapists, managers) and young patients and their families.  

We are currently accepting applications for our 2021 Graduate Fellowship in Patient-Oriented Research! If you are a graduate student or postdoctoral fellow engaged in POR focused on brain-based disabilities, apply now for the opportunity to receive up to $10,000 to enhance your POR learning experience. Find out more on this page.