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. 

CHILD-BRIGHT Network Patient-Oriented research Discussions

CHILD-BRIGHT is proud to launch its inaugural Patient-Oriented research Discussions (PODs) series! This initiative aims to enhance the exchange of ideas between all stakeholders within our network. We will meet regularly to discuss and explore content related to patient engagement in research, including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials that relate to patient-oriented research. Each session will be hosted by a presenter who will pick the topic and resource(s) for discussion, and will consist of a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity.

Our current scheduled sessions include:

To join, please complete the registration form below and sign up for your choice of sessions.

We look forward to exploring these topics with you!

Welcome to the 2021 CHILD-BRIGHT Summer Studentship Cohort!

We are thrilled to welcome 14 new students to our 2021 CHILD-BRIGHT Summer Studentship Program!

Every year, CHILD-BRIGHT helps train a new cohort of students in patient-oriented research (POR) by supporting our project and program teams as they hire students for the summer. For the 2021 offering, we earmarked over $50,000 to support these students, who will be working with eight of our research project teams.

Meet this summer’s cohort:

PARENT-EPIQ

Amarpreet will be cleaning and analyzing data collected from Parent-EPIQ’s questionnaire, which was sent to parents of children born very preterm and other key stakeholders to help answer the question: “What early childhood outcome measures are meaningful to parents of children born very preterm?” With assistance from the research team and statistician, Amarpreet will then analyze the results and write an abstract.

SPORT

As a member of the Cerebral Palsy (CP) Discovery Lab, Rachel will focus on data collected from previous intensive two-week camps investigating the use of Transcranial Direct Current Stimulation (tDCS) paired with constraint therapy in children with Hemiplegic CP to improve hand function. She will be involved in data cleaning and statistical analysis in order to contribute to a peer-reviewed manuscript.

PIUO 

Deena and Isobel will focus on a substudy within PIUO to describe the characteristics of children with neurological impairment presenting with neuroirritability requiring hospitalization at the Hospital for Sick Children and the Children’s Hospital of Eastern Ontario, respectively, and to describe the clinical care they receive. Matthew will plan, conduct and complete a literature search providing evidence for the prevalence of patient-partners in pediatric health literature, specifically as co-authors with accreditation for research publications.

Strongest Families ND

Ting will help establish a Knowledge Translation (KT) plan and study for the survey results of the Life Beyond Trauma research study. At the end of the study, Ting will analyze the data of the KT study and will write a manuscript for publication in an academic journal. 

Jooay

This summer, Sarah, Claire, and Antonina will be responsible for data collection and information extraction to be included in the Jooay App, as well as data entry and data analysis using app analytics. They will also support a number of key knowledge translation activities related to the Jooay App.

Mega Team

Shi Ping and Eisha will learn how to conduct research study visits, gather consent from participants, as well as interact with study participants and families. They will also learn about methods and processes of data collection and the importance of incorporating patient-partners in the research study.

CCENT

Laura will complete a chart review of NICU admissions at Mount Sinai for one calendar year, to identify medical indicators of high-risk infants. She will conduct data analysis to identify potential early signs—from the child’s time in the NICU—that could help predict if a child will need to be referred to the complex care program, and if so, to help identify the opportune time for when these referrals should be made. She will summarize the findings in a manuscript. Meanwhile, Clara will focus on data analysis and visualization as well as assist with a meta-analysis of CCENT’s 16 measures administered over an 18-month period to capture outcomes such as stress, mental health, and experience of care delivery.

ReadyOrNot

Claire will conduct a review to identify key issues and policies that need to be improved  relative to the health care transition of youth from the pediatric to adult care settings. She will also work with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She will take on a leadership role within this group, where she will co-facilitate meetings, prepare materials, consolidate discussion questions, and incorporate feedback from the PFAC into the team’s work.

As part of the program, the summer students start by completing the Patient-Oriented Research Curriculum In Child Health (PORCCH), a series of free online training modules, co-funded by CHILD-BRIGHT, to learn about the basics of POR. PORCCH is designed to build knowledge and skills for authentic patient-oriented research in child health.

The students are then engaged in a mix of live and asynchronous learning sessions, with a new resource or activity introduced every week. CHILD-BRIGHT patient-partner Kent Cadogan Loftsgard will be returning this year to facilitate a webinar in which he will share some of his insights about effective patient engagement in the research process.

This year, the students will also be working in groups to write a plain-language summary of a research article published by a CHILD-BRIGHT researcher. Not only will the students be able to practice their scientific communication skills, but the end result will be lay-friendly article summaries that will be published in CHILD-BRIGHT’s forthcoming KT Library, where they will be available to researchers, policy makers, patients, and families.

Stay tuned to read these lay summaries at the end of the summer!  In the meantime, to see more of our CHILD-BRIGHT youth in action, watch the recording of our latest webinar:  Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth.

Apply now for the 2021 CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

We are excited to launch the 2021 competition for the CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

The competition aims to enhance the training experience of graduate students and postdoctoral fellows working on patient-oriented research (POR) projects focused on brain-based developmental disabilities in children. The funding support is meant to enrich current POR practices or help increase patient engagement throughout the research project.

For 2021-22 a total of $50,000 in funds are available (with an expected maximum of $10,000 awarded to each successful applicant) for a project that is to be completed within 18-24 months.

Applications are due by September 5, 2021

Wondering what kind of projects are eligible for this award? Read about the recipients of the 2020 Graduate Fellowship Awards and the projects they’re working on!

Visit the competition page for full details, including eligibility requirements and the application procedure. Good luck! 

2021 Virtual Symposium Discussion: Brainstorming Together on How to Support the Continued Funding of Child Health Research in Canada

How can the CHILD-BRIGHT community rally to support the continued funding of critical child health research in the realm of neurodevelopmental disability? As part of our recent 2021 CHILD-BRIGHT Virtual Symposium, Katie Griffiths, a personal support worker who runs the Patchwork Half Heart community and a parent-partner in our MATCH study, along with Patrick D. Lafferty, who has extensive experience providing strategic planning to organizations, co-facilitated a discussion aimed at brainstorming answers to this question.

“Through my journey I have learned how little research funding there is for children’s health,” Katie Griffiths observed. The time for uptake of this research is also lengthy. On average it takes nearly two decades before a scientific discovery can be adopted into clinical practice. However, as illustrated by the rapid development of the COVID-19 vaccines over the last year, when priorities align and sufficient resources at a local and international level are made available, the research community can address complex problems much more quickly, including ensuring the continued funding of important child health research.

“The opportunities are there,” Patrick Lafferty noted. “The question is how to get the right people in the room to brainstorm […] a model that can be taken to all sorts of constituencies.”

During the symposium brainstorming session, 20 participants raised a variety of topics, including the importance of further enhancing public involvement in the research process, and more broadly publicizing successes to generate awareness. In addition, the participants discussed learning from past successful social media campaigns (such as the ALS Ice Bucket Challenge) to leverage non-traditional funding opportunities and made the case for funding a national diagnostic strategy that would yield financial returns and support further innovative research initiatives. Key takeaways included a call to action to consider unique funding strategies and subsequently engaging committed stakeholders who would move the effort forward.

CHILD-BRIGHT has taken note of these takeaways and is now evaluating the issues raised for future brainstorming sessions, events, and research priorities.

The 2021 report, Inspiring Healthy Futures: A Vision for Children, Youth and Families In Canada, identifies five Interlinked priorities to measurably improve the health and wellbeing of children and youth In Canada. Research is recognized within the framework as a critical contributor to health and wellbeing, but must be integrated seamlessly into Canadian policy and practice to truly influence child health outcomes.  

With this in mind, let’s dream together as we consider the future work of CHILD-BRIGHT. Let’s consider questions never asked and strategies never tried as we continue engaging patients and families, funders, researchers, and key decision makers in this critically important work.

What do you believe we can do to help to continue to fund critical research into brain-based developmental disability in children? Share your thoughts in the comments below.