2022 CHILD-BRIGHT Virtual Symposium

Background and Rationale: Neurodevelopmental disorders (NDDs), such as attention deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), impact executive functioning (EF) that manifests in emotional and behavioural dysregulation. Mega Team (MT) is a game-based cognitive rehabilitation intervention that targets executive functions in children with NDDs. Current cognitive rehabilitation options are expensive, inaccessible, and limited in their established impact. It is important to assess the effectiveness of MT relative to its costs and to costs incurred through overall service use.

Objective: The objective of this randomized controlled trial (RCT) is to investigate the effects of MT on executive functioning abilities after 6 months in children with ADHD and ASD. A cost effectiveness analysis (CEA) is conducted alongside the RCT to measure the incremental cost per quality-adjusted life-years (QALYs) gained for MT in ADHD and ASD when compared to usual care from the perspectives of the family, the Ontario public payer, and society over a 6-month time horizon.

Methods: Participants are children aged 6-12 years in Ontario who meet the diagnostic criteria for (1) ADHD (sub-study 1) or (2) ASD (sub-study 2). Within each sub-study, children are randomized into one of two intervention arms: MT or treatment-as-usual (TAU). MT is administered over 5 weeks. At baseline and at 6 months, participants are asked to complete cognitive and academic tasks to assess executive functioning, self-regulation, and academic performance.

The primary measure of resource use and cost is the Resource Use Questionnaire for Developmental Conditions (RUQ-DC), administered to caregivers of children with developmental conditions. Respondents report healthcare and non-healthcare service use, frequency, duration, and out-of-pocket costs. Costs are summed per participant and aggregated by intervention group for each payer perspective and for every time period. Costs are then standardized to 6-months to allow for comparisons between groups. The primary measure of effectiveness is health-related quality of life, estimated as quality-adjusted life-years (QALYs) and derived from the Health Utilities Index (HUI). The HUI is administered at baseline, at 5 weeks, and at 6 months.

Conclusion: This CEA will inform funding, treatment, and potentially policy decisions for children with ADHD and ASD.

Roaa Shoukry

1. Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada 2. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada 3. Department of Psychiatry, The Hospital for Sick Children, Toronto, Canada 4. Neurosciences & Mental Health, The Hospital for Sick Children, Toronto, Canada 5. Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada 6. The Centre for Addiction and Mental Health, Toronto, Canada 7. Department of Cardiology, The Hospital for Sick Children, Toronto, Canada 8. Ontario Institute for Studies in Education, University of Toronto, Toronto, Canada 9. School of Public Policy, University of Calgary, Calgary, Canada10. Faculty of Kinesiology, University of Calgary, Calgary, Canada

Pediatric Rehabilitation, Cost Effectiveness Analysis, E-health Intervention, Neurodevelopmental Disability

Play is essential for every child, but children with disabilities face challenges finding adapted activities. The Jooay App is a mobile-Health tool created to help children and youth with disabilities to identify and engage in community-based leisure activities like sports, arts, and camps in their communities. Currently used by over 4,200 rehab and education professionals, families, and youth across Canada, Jooay does not yet include game-like features that can help users to engage with the app and adopt healthier lifestyles. The app could benefit over 800,000 children and families who have a disability in Canada, but implementation strategies are necessary to address the variables that can support implementation.

This project will expand Jooay's Knowledge Broker Networks and implement game-like features in the Jooay app to increase participation in community leisure activities as a critical outcome for professionals, families, and youth with disabilities, to inform the development and implementation of disability-inclusive mobile technology, and to raise the profile and awareness of adaptive and inclusive activities for children with disabilities across Canada.

In phase 2, we will use the Consolidated Framework for Implementation Research (CFIR) to implement and evaluate the scale-up and expansion of the app users through the expansion of knowledge brokers (KBs) networks and stakeholder dialogues. Participants will be Health care providers: primary (GPs, pediatricians) and tertiary (rehabilitation specialists), educators: physical education and classroom teachers, community representatives, families, and caregivers of children (any age, any disability), and youth with disabilities (14-24 years old).

We hope to identify key strategies to make apps inclusive and support the implementation of inclusive technology that promotes healthy behaviors for YWD and better understand the knowledge broker networks that can support participation and inclusion in the community for children and youth with disabilities. The objectives of this study are aligned with the United Nations Sustainable Development Goals and the Convention on the Rights of Persons with Disabilities, as it will create a mobile app that can help Canadian YWD to participate, support their involvement in the community, and promote equity in society.

Ebrahim Mahmoudi Kojidi <ebrahim.mahmoudikojidi@mail.mcgill.ca>

1. McGill University; 2. University of Brasilia, Ecole de Technologie Superieur (ETS), 3. University of British Columbia; 4. University of Montreal; 5. Ontario Tech University; 6. Patient/community partner, 7. University of Alberta

Implementation, Participation, E-health Intervention

Background: In this project, we worked collaboratively with young adult partners to plan and conduct a stakeholder dialogue. The dialogue aimed to understand the perspectives of stakeholders about policies on transition from pediatric to adult healthcare in Canada, identify what is missing in current healthcare transition policies, and provide recommendations about future policy changes to support healthcare transition. Our previous review of the literature found a general paucity of transition policy, with varying guidelines and practices between provinces and healthcare providers, particularly with respect to age of transfer to adult care.

Methods: A stakeholder dialogue was planned and co-facilitated by CHILD-BRIGHT's READYorNot(TM) Brain-Based Disabilities Project, young adult members of the Patient and Family Advisory Council (PFAC) in collaboration with the CHILD-BRIGHT Policy Hub. Participants for the dialogue were recruited from Alberta, Ontario, Quebec, and the Maritimes. During the dialogue, participants were introduced to patient vignettes that describe youth who are preparing for healthcare transition, and guiding questions were used to elicit interactive discussion about recommended changes related to healthcare transition policies. Transcripts from the dialogue were analyzed using conventional content analysis.

Results: The nine participants in the stakeholder dialogue included three youth partners, one parent partner, two researchers, and three healthcare providers. Stakeholders spoke about inconsistent practices and a lack of adherence to the practices that did exist, as well as a lack of training and resources for healthcare professionals to support transition. They also discussed that transition needs to be a gradual process, recognizing the whole person. Stakeholders agreed on these top three policy recommendations:

1. A transition planning program that starts a few years before transition and builds self-competencies.

2. A more flexible age of transfer since chronological age does not necessarily indicate developmental age or readiness.

3. Holistic transition that includes social and educational factors.

Currently, we are finalizing the policy brief and dissemination plan.

Linda Nguyen, Claire Dawe-McCord, & Michael Frost

1. Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada, 2. Bachelor of Health Sciences Program, McMaster University, Hamilton, Ontario, Canada, 3. School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada, 4. CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada, 5. Patient and Family Advisory Council, READYorNot(TM) Brain-Based Disabilities Project, CHILD-BRIGHT Network, 6. McGill University Health Centre, Montreal, Quebec, Canada, 7. Centre of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, The Netherlands, 8. Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada

Youth, Neurodevelopmental Disability, Health and Social Services, Hospital Transition

Background: Advancements in treatments and health outcomes for children are driven by clinical trial findings. Efforts in Canada are ongoing to increase family-centered clinical trial design and conduct for pediatric clinical trials; however, a critical knowledge gap that remains is how best to communicate trial results back to children and their families. We hypothesized that children and their families have unique knowledge needs and preferences for receiving trial results. We launched an initiative to co-develop a freely accessible tool for communicating trial results with youth and families: CommuniKIDS.

Methods: We developed CommuniKIDS by conducting (1) An environmental scan of the literature to identify available evidence on best practices and considerations for research results communication in child health/disability populations; (2) Three virtual workshops with youth and parents to characterize their specific informational needs and preferences for receiving trial results using the generic trial results template developed by Clinical Trials Ontario (CTO) as the starting point for CommuniKIDS; and (3) Pilot-testing and surveying a broad pan-Canadian group of pediatric trialists and Research Ethics Board (REB) members.

Results: Our literature search identified diverse recommendations for sharing pediatric trial results, encompassing aspects of content, format, and timing, which were used to inform the development of the workshops; no best-practices or any existing pediatric trial templates were identified. The virtual workshops confirmed the importance and value of sharing pediatric trial results with youth and families. Both groups indicated similar preferences for receiving trial results (i.e., directly by email) and content (i.e., overall favourable impressions of the CTO template). Feedback led to important modifications to the generic CTO template for youth and families, including the addition of a "summary of results" section, clarification of side effects, and differentiating between short and long-term child health outcomes.

Conclusions: Co-developing CommuniKIDS revealed the unique needs and preferences of youth and their families, and further justified the importance of sharing trial results back to youth and families - a sentiment also echoed by pediatric trialists and REB members. CommuniKIDS is a useful tool that could be used to facilitate dissemination of trial results back to youth and their families.

Nancy Butcher

The Hospital for Sick Children; University of Toronto; Clinical Trials Ontario; University of Ottawa

Knowledge Translation, Child Health

Background: Children with brain-based developmental disabilities are more likely to have mental disorders such as depression and disruptive behaviour. Without treatment, these disorders will persist into adulthood. Treatments with growing evidence are parent training interventions. Parent training aims to change parental behaviour and improve communication with their child. The Strongest Families Neurodevelopmental (SF-ND) Parenting Program is one such intervention. SF-ND aims to remove barriers to care and improve outcomes for children and their families.

Rationale: The base program ("Strongest Families - Parenting the Active Child Program') demonstrated effectiveness in clinical trials involving typical developing children. SF-ND includes revised content on neurodevelopmental disabilities (NDD). This cost effectiveness analysis (CEA) aims to understand the healthcare and social service usage of children and their families enrolled in the program, as well as the costs associated with these services across families, public payers, and society. Objectives: To study the incremental cost for the SF-ND coached intervention and the self-managed intervention, compared to the information-only group per quality-adjusted life years (QALY) gained from the perspectives of families, public taxpayers, and society.

Methods: This study enrolled parents of Canadian children with one or more NDD and followed them over three timepoints: intake; five months; 10 months post-randomization. The study looked at three groups receiving different forms of engagement: 1) internet-based programming with group telephone coaching; 2) solely internet-based programming; or 3) static resource webpage. The Resource Use Questionnaire (RUQ) collected resource use data and captures the total costs per child, while the Health Utility Index (HUI) measures the effectiveness and overall utility. The analysis will provide a mean effectiveness and cost per child, which will be represented by an Incremental Cost Effectiveness Ratio (ICER).

Results: Analysis is ongoing, with over 300 children enrolled in the study, most of whom were diagnosed with Autism Spectrum Disorder (ASD). The findings from this research hopes to provide a better understanding of and add to the growing evidence-base of cost-effectiveness of parent-focused programs. In addition, these findings can influence policies regarding access-to-care for parents, as well as mitigate costs for some, or all levels of payers.

Aranie Vijayaratnam

1. Child Health Evaluative Sciences, The Hospital forSick Children, 2. Institute of Health Policy,Management and Evaluation, University ofToronto, 3. School of Public Policy, University ofCalgary, 4. IWK Health Centre, (5) McGill University, (6) DalhousieUniversity

Cost Effectiveness Analysis, Mental Health, E-health Intervention

Background: In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully.

Methods: The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. Multiple methods were used to evaluate if the videos and facilitated discussion helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. This included a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators.

Results: Sixteen people took part in this study. We found that the simulation videos increased participants' knowledge on engagement and their self-reported ability to engage in authentic and meaningful POR. However, we did not find any change in participants' beliefs about engagement or their intent to carry out collaborative research in the future. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. The use of small group discussions and the ability of the facilitator to reframe the group discussion had a positive impact on participants' learning. Participants also provided feedback on how we could improve the simulation content and delivery.

Significance: When researchers and patient partners lack the skills needed to engage meaningfully in research partnerships, this can lead to tokenistic, inauthentic, and failed partnerships. These simulations are intended as educational tools, to help train youth, caregivers/families, trainees, and researchers to engage meaningfully and authentically, where all parties feel supported and valued. Recommendations for future work include adapting the simulations to different audiences such as youth with lived experience; covering different content with varying levels of nuance; and offering the training to individuals in a variety of populations and roles beyond the research team, such as individuals in higher-ranked academic positions.

Samantha Micsinszki & Julia Kowal

McMaster University School of Rehabilitation Science;CanChild Centre for Childhood Disability Research;Holland Bloorview Kids Rehabilitation Hospital

Co-design, Training, Neurodevelopmental Disability

Background: Children with medical complexity (CMC) are characterized by complex conditions, technology dependence, and high healthcare utilization across home, hospital, and community. CMC are followed by the Complex Care Program at SickKids. Each child is given a care plan (CP), which is a comprehensive, collaborative, written document to support and streamline the coordination of care. The overview section in the care plan is a free text section where families can incorporate holistic aspects of the child.

Objectives: To analyze CPs of CMC to assess how they are currently used to understand the child as a whole, through descriptive analysis of the overview section of CPs and documentation of the presence of a photo in the child's CP. Methods: A retrospective chart review was conducted for patients enrolled in the Complex Care Program at SickKids as of December 31, 2021. The overview section of CPs were extracted and coded until saturation was reached. Thematic analysis was used generate themes. The presence of a photo (yes/no) in the CP was also collected.

Results: Results from 300 CPs demonstrate 6 emerging themes: about the child (e.g., temperament, interests), caregiver involvement (e.g., caregiver�s role and feelings), language needs (e.g., language interpretation), care team (e.g., providers involved in care), medical care (e.g., care instructions, medical warnings), and administration (e.g., consent, updating CPs). Photos of the child were included in 57% of CPs.

Conclusions: Results suggest that the overview section of CPs currently have a broad purpose. While it is often used to provide holistic information about the child that goes beyond their medical needs, it is also used as a host for many other items pertaining to the child and their care. Next steps include interviewing families and care providers to understand the goals of the overview section in order to inform future guidelines for the overview section in order to optimize it's use.

Nazeefah Laher

1. SickKids Research Institute, Toronto, Canada, 2. Division of Paediatric Medicine, SickKids, Toronto, Canada, 3.Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada, 4. Department of Pediatrics, University of Toronto, Toronto, Canada, 5. School of Medicine, Trinity College Dublin, Dublin, Ireland

Complex Care, Medical Complexity

Genomic sequencing is a powerful medical test that can identify potentially disease-causing changes in our genetic material (DNA). It facilitates more diagnoses and thus provides answers for families of children who have suspected genetic conditions. However, the testing and results can be complex and difficult for families to understand. Furthermore, sometimes the diagnoses are for rare conditions, leaving families feeling "abandoned and lost" - unsure of their next steps or where to find support.

As a recipient of the CHILD-BRIGHT 2022 Summer Studentship Award, I assisted with the Genomic Results Booklet (GRB) project to address this need. The GRB is a customizable ebooklet providing patient-specific resources and information about a family's genomic testing results using accessible language. There is a version for families who receive a diagnosis and another for those who do not. The booklet was originally developed as part of the IMAGINE study for children with atypical cerebral palsy, and was instigated and created in collaboration with three parent-partners. It was pilot tested in the IMAGINE study and in a small clinical study, after which it was revised for clinical use. A CHILD-BRIGHT KT grant allowed us to translate the GRB into Chinese, Punjabi, Arabic, and French.

In the present study, we assessed the utility of the modified booklet in the BC Children Hospital's neurology unit. During the time I assisted with the project, we received nineteen referrals from five clinicians. From these referrals, eleven families received booklets while the others were in various stages of the booklet-making pipeline. Feedback from parents is collected through e-questionnaires two and eight weeks after GRB receipt. Phone interviews are being conducted ten weeks after receipt of the booklet to allow for a more in-depth understanding of how families are using the booklet. The study is continuing until the spring, and currently has over 30 referrals. Initial feedback from the families is overwhelmingly positive.

We hope to influence healthcare practice surrounding return of genomic testing results by demonstrating the utility of the GRB as a clinical tool. These findings may support long-term implementation of the booklet in many medical settings.

Sara Marshall

BC Children's Hospital, University of British Columbia

Patient Support, Knowledge Translation, Medical Complexity

Introduction: In-home data collection offers the opportunity to collect information from children and families that captures a fulsome picture of their health and well-being in the real world. This type of data collection has the advantage of reducing barriers related to geographic location, financial status, and anxiety/trauma, as well as providing more ecologically valid data. However, children with developmental needs, such as cognitive, motor, or communication differences, are often excluded from this research. The aim of the Living Lab at Home is to co-develop a platform for in-home data collection that is accessible for families whose children function across the developmental spectrum, expanding the availability of health research opportunities to developmentally and medically complex families.

Methods: Semi-structured interviews were conducted via Zoom with Canadian families of children/youth with Severe Neurologic Impairment (SNI). Interviewers asked about families' perceptions of the feasibility of in-home research, barriers and adaptations that would be required to accommodate their child's needs, Interviews were recorded and transcribed, and transcripts were analyzed using descriptive statistics and reflexive thematic analysis.

Results: Interviews were conducted with 5 mothers of children ages 3-15 years, representing White, Indigenous, and Asian ethnicities. Children had a diverse range of motor, developmental and cognitive disabilities, communication levels and methods, medical complexity (e.g., seizures, tube-feeding, neurodegeneration), visual impairment, challenges with tone and spasticity, and psychiatric conditions. All families spoke English at home. Interviews were 43-83 minutes in length. Families expressed priorities for flexibility, reciprocity, and accessibility in engaging with in- home data collection for health research in children and youth with SNI.

Discussion: Families offered practical suggestions for adapting in-home research methods to meet their child's needs, and provided insights for priorities for research topics and methods (e.g., involvement of siblings). This presentation will outline specifically how family feedback was incorporated into the protocol for Phase 2, a pilot demonstration project currently underway asking families to test various methods of in-home data collection to validate and iterate our protocol in a family-centered way.

Katelynn Boerner

University of British Columbia, BC Children's Hospital

Neurodevelopmental Disability, Community-based Research, Medical Complexity

Background: During the transition to adulthood, youth with a neurodisability often experience the challenge of learning how to navigate services in the adult system. They may rely on their family, including their siblings, for support. However, the roles and responsibilities of siblings during this transition period are often unclear. Further information is needed to understand how the experiences of growing up in a family of youth with a neurodisability may impact the formation of the sibling's personal identity.

This study had two aims: 1. To identify and describe the roles and responsibilities of siblings to their sibling with a neurodisability; 2. To understand the characteristics of the sibling and family relationships during childhood, adolescence, and emerging adulthood, and the influence of these relationships on identity formation among siblings.

Methods: In this descriptive qualitative case study, semi-structured interviews with the use of photo-elicitation and relational maps were conducted. Reflexive thematic analysis was applied to analyze the dataset to address each aim. Throughout this study, we partnered with our Sibling Youth Advisory Council.

Results: Nineteen siblings (median age 19 years, range 14-33 years) from 16 unique families participated. They described six unique roles: friend, role model/mentor, protector, advocate, supporter, or caregiver. Siblings identified a four-phase decision-making process for their roles: 1) acquiring knowledge; 2) preparing plans; 3) making adjustments; and 4) seeking supports. Further, siblings described being playmates with their sibling with a neurodisability as children. During adolescence and emerging adulthood, siblings spoke more with their parents about how to interact with their sibling with a neurodisability. Siblings continued to process how to balance their life choices with family needs as they developed their identity.

Current Progress: Study results have been drafted as two manuscripts to address each aim, and will be finalized and submitted to peer-reviewed journals.

Conclusions: Siblings continually reflect on their emotions, decision-making process, and personal identity based on their experiences within the family. Resources are needed to support siblings and the family, which overall lead to better health outcomes and positive family environment for youth with a neurodisability.

Linda Nguyen and Samantha Bellefeuille

1. School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada, 2. CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada, 3. School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada, 4. Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada, 5. Offord Centre for Child Studies, Hamilton, Ontario, Canada, 6. Sibling Youth Advisory Council, Canada, 7. Centre of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, The Netherlands, 8. Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada

Siblings, Patient-oriented Research, Neurodevelopmental Disability,

It is becoming more common for parents of children with chronic conditions to partner as members of research teams. Parent partnership helps to make sure that research is relevant and important to families. Parents also can help share information about a study through their personal networks, which supports recruitment. Led by two parents, we aimed to explore how parents perceive sharing research information through their personal networks.

Using semi-structured interviews (3) and focus groups (3), our team asked 15 parents of children with chronic conditions, who had research partnership experience, how they perceived using their personal connections to help recruit for research projects. Interviews and focus group recordings were transcribed. Data were analyzed thematically by three team members who worked independently, but concurrently. Themes were reviewed and verified among team members.

Three overarching themes were identified: Motivations, Authentic partnerships, and Learned decision making. Each theme includes participants' perceptions about sharing research information for recruitment purposes, and about research partnership more broadly. Motivations included connections to community and desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participants' willingness and ability to share study materials. Decisions about sharing study information and personal information to support research evolved with parents' experience over time. In addition to these themes, participants highlighted the importance of appropriate compensation to support parent's partnership in research. With feedback from participants, we created a collection of knowledge translation materials including three canvas paintings reflecting the main themes and tips sheets for parents and researchers. Participants in the current study provided valuable information that can inform recruitment methods and improve team functioning. Study findings are especially relevant to parents and researchers who are newer to research partnerships.

Continued efforts to encourage rewarding partnerships can help parent partners stay engaged with the research community and continue to offer their valuable contributions to the field.

Laesa Kim & Carrie Costello <Laesa.Kim@bcchr.ca>

University of Manitoba, The Children's Hospital Research Institute of Manitoba, CHILD-BRIGHT Network, SPOR

Parents, Recruitment, Patient-oriented Research

Patient Oriented Research is an increasingly utilized approach to health research where patients are engaged as partners in shaping and directing the research program. To bring a family-centered and a patient-oriented focus to research, we need to know how families understand and experience their role and participation in the health care for their child, as well as in research that serves to optimize this care. This study looked to understand the experience of, and identify the motivations for, participating in a clinical trial that is currently being conducted by our research team, the Pain and Irritability of Unknown Origin Study.

Using semi-structured interviews, we interviewed 12 parents of children with medical complexities about their motivations behind participating in health research. Interviews were led by a non-tradition researcher, a peer interviewer. All the interviews were transcribed, then analyzed using interpretive description and coded by three team members.

Parents described numerous reasons for their participation in research. These motivations landed within three main themes: child centered motivation, being part of something good, and experiencing relationship with the research team. Child centered motivation referred to the benefits parents hoped to gain for their child. Being part of something good captured the more altruistic motivations, such as benefiting another child and adding to research data. Experiencing relationship with the research team is where deep meaning and genuine connection occurred in the research process. In addition to these themes parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their medically complex children and the need to integrate their lived experience with the research they engage in.

This analysis brings us beyond thinking about how to enhance recruitment efforts among a population already entrenched in high demands for their child's health care and sees the deeper stories of the families involved. Recognizing families' motivation for research participation can help researchers create richer engagement and more meaningful experiences for themselves, participants, and their participant's families.

Laesa Kim <Laesa.Kim@bcchr.ca>

BC Children's Research Institute, University of British Columbia, Athabasca University, CHILD-BRIGHT Network

Participation, Medical Complexity, Patient-oriented Research

Background: Using 4 studies, Parent-EPIQ identified outcomes that were meaningful to parents of very preterm children. Disseminating and implementing change based on these results is the next essential step.

Methods: Using a modified Delphi method, Parent-EPIQ results were reviewed and discussed with parents, clinicians and researchers at a virtual workshop Oct 2021. The discussion was analyzed qualitatively to create statements, circulated for feedback and 80% consensus statements identified. Priority items requiring further work were identified, working groups created and results presented and polled for agreement at a Sept 2022 workshop.

Results: In the 2021 workshop, 7 consensus statements emerged directly from the Parent-EPIQ results, another 5 from the discussion and 5 were out of scope. Actionable statements were implemented and items needing further work identified. Table 1 shows changes made. Working groups reviewed literature and recommended how to measure 7 outcomes which parents and stakeholders identified as important (child wellbeing, quality of life, socioemotional and behavioural, respiratory, feeding, sleeping and caregiver well being) and presented results in Sept 2022.

The Canadian Premature Babies Foundation (CPBF) and Parent-EPIQ team created blogs and webinars to share results with stakeholders. Infographics about Neonatal Follow-Up were co-created. This process is ongoing and will continue with CHILD- BRIGHT 2.

Table 1:

Statement

-Revise data reporting for the annual report.

-Consider Parent EPIQ results when approving research protocols.

-Value based terms such as severe should be avoided.

-Current definitions of composite outcomes should not be used as the components are not equivalent.

-Add currently available data on health resource use, hospitalizations, and use of technical aids to the annual report.

-Recognize the variation in parent perspectives.

-Parents should be educated about the role of neonatal follow-up.

Discussion: Our parent voices research results guided our Delphi process. The Canadian Neonatal Follow-Up Network now reviews the consensus statements in all research protocols. Our goal is to publish national and international guidelines to integrate parent voices

Conclusion: Involving parents in knowledge dissemination and implementation in addition to research can lead to change that accurately represent families' priorities.

Rebecca Pearce and Anne Synnes

University of British Columbia, Canadian Premature Babies Foundation, Universite de Montreal

Prematurity, Implementation, Parents

Children with neurodevelopmental disorders and problems (NDPs) experience long waitlists for services that delay access to early intervention programs. Currently, families have little to no support while they wait for their turn on overburdened waitlists. Single session interventions (SSIs) may be a method to serve families as they wait for more intensive services. SSIs have been noted as beneficial in previous research; however, they have yet to be utilized for parents of children with NDPs. The current study used a patient- oriented approach to develop an intervention to better support families in need of services. Eight parents of children with NDPs were recruited from a larger Needs Assessment Survey. They participated in six focus groups to assess the unmet needs of parents of children with NDPs while on the waitlists for developmental services and the potential utility of an SSI with this population. Deductive analysis was used to examine focus group data, given the incorporation of theoretical frameworks to hypothesize the unmet needs and SSI utility in this population. A priori overarching themes were System Navigation, Family Function, and SSI Content. System navigation main themes were assessment and diagnosis, education and information, resources and supports, and advocacy. Family function contained main themes of difficult child behaviour, child health and development, and parent well-being. SSI Content main themes were therapeutic approaches, needs and priorities, goals, and SSI structure. Main themes and subthemes will be discussed in terms of clinical implications and future directions. The findings from this study are the first to outline families' perspectives and preferences of an SSI in this population. There is a clear need among parents of children with an NDPs for timely and brief services to ameliorate substantial stressors while waiting for developmental services. SSIs require minimal resources and have the potential to provide critical support and skill development that parents can use with their children while they wait for services. Access to an SSI intervention may serve to decrease parenting stress and improve difficult child behaviours while waiting for more comprehensive services, with the ultimate goal of improving long-term family wellbeing and child developmental outcomes.

Samantha Steele-Mitchell

1. Department of Psychology, University of Manitoba, Winnipeg, Manitoba, Canada, 2. Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada, 3. Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada, 4. Department of Psychology, Stony Brook University, Stony Brook, New York, USA, 5. Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada, 6. Rehabilitation Centre for Children (RCC), Specialized Services for Children and Youth (SSCY) Centre, Winnipeg, Manitoba, Canada, 7. Department of Clinical Health Psychology, University of Manitoba, Winnipeg, Manitoba, Canada, 8. Manitoba FASD Centre, SSCY Centre, Winnipeg, Manitoba, Canada

Co-design, Child Health, Neurodevelopmental Disability, Parent and Child Well-being

Why did we do this research?

First, patient-oriented research (POR) makes sure that research outcomes respond to what youth express as important. Second, while POR is increasingly practiced, few training programs exist in Canada and none are tailored for youth with NDD (to our knowledge). Third, researchers and youth at a CP-NET stakeholder meeting came to a consensus that opportunities should exist to empower more youth as research partners.

What was our research questions?

Our team explored two questions about researcher-youth partnerships:

1) What are the training needs of youth (ages 18-25) with neurodevelopmental disabilities (NDD) to enhance their knowledge, confidence, and skills as research partners?

2) What are the benefits and challenges of POR engagement?

How did we address our questions?

To answer our first question, two phases were carried out by our team of four youth and one parent with lived experience (YER partners) and six researchers. Phase 1 consisted of individual interviews and focus groups with youth. Phase 2 was a two- day virtual symposium with youth and researchers. To answer our second question, YER partners completed the Public and Patient Engagement Evaluation Tool questionnaire and reflected on their experiences through discussions as co-investigators.

What did we learn?

Participants (n=17) prioritized the following training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods of training materials, participants emphasized using Universal Design for Learning, youth representation, and co-learning among youth and researchers.

YER partners described the benefits to partnering in this project as co-investigators. They felt they were able to express views freely, that their views were heard, and that their participation made a meaningful difference to the research. Challenges raised included scheduling difficulties, capacity to ensure multiple methods for engagement, and working under short timelines. How might our study be relevant to you?

Our study revealed important POR training needs for youth and researchers, which can inform the co-production of future training opportunities. Our work contributes to expanding the practice of effective POR so that research truly embodies the mantra of "nothing about us without us".

Samantha Yimeng Dong & Amanda St. Dennis

1. Bachelor of Health Sciences Program, McMaster University, Hamilton, Ontario, 2. CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, 3. School of Rehabilitation Science, McMaster University, Hamilton, Ontario, 4. Department of Pediatrics, McMaster University, Hamilton, Ontario, 5. Youth Engagement in Research (YER) Patient Authors, 6. Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET), McMaster University, Hamilton, Ontario, 7. Biomedical Science Program, Ottawa University, Ottawa, Ontario, 8. University Medical Center Utrecht, Utrecht, The Netherlands

Patient-oriented Research, Youth, Training

Background: Fetuses with congenital heart disease have reduced oxygenated blood delivered to their brains and this was associated with smaller brain size [1]. Recently, we characterized the fetal hemodynamics of patients with transposition of the great artery (TGA) by fetal cardiovascular MRI [2]. However, characterization of the fetal response to maternal supplemental oxygen administration has not been elucidated.

Objective: To elucidate the effects of acute maternal hyperoxygenation on the fetal circulatory physiology in patients with TGA by fetal cardiovascular MRI.

Methods: Twenty-eight pregnant mothers with fetuses diagnosed with TGA and an intact ventricular septum (n=18) or small ventricular septal defect (n=10) were recruited and completed our protocol. Mothers were administrated 10L/min of medical grade oxygen by face mask for up to 45 minutes to assess the fetal circulatory response to maternal supplemental oxygen. Blood flow and oxygen content of the major fetal vessels were assessed by cine phase contrast MRI and MR relaxometry, respectively, before and 5 minutes after maternal oxygen administration.

Results: Compared to baseline fetal hemodynamics, acute maternal supplemental oxygen increased pulmonary blood flow (p=0.02), with a concurrent decrease in ductus arteriosus (p=0.03) and foramen ovale flow (p=0.04). There were no significant changes in umbilical vein (p=0.37), descending aorta (p=0.72) and superior vena cava flow (p=0.15). Fetal oxygen saturations increased throughout the whole fetal circulation (p<0.001). However, there was no increase in fetal cerebral oxygen delivery (p=0.87). In fetuses with an unrestricted foramen ovale, acute maternal supplemental oxygen increased oxygen saturations in the left-sided heart, but not in fetuses with a highly restricted atrial septum.

Conclusion: This study characterizes the effects of acute maternal supplemental oxygen on the fetal circulation in patients with TGA and confirms the redistribution of flow towards the fetal pulmonary circulation. However, oxygen content delivery to the fetal brain did not improve, suggesting a limited role of this therapy to improve fetal brain growth. Our findings suggest acute maternal oxygen administration may play a potential diagnostic role to identify fetuses with a highly restrictive or intact ventricular septum for perinatal interventional management and prevent pulmonary vascular disease.

References:

1. Sun L, Macgowan CK, Sled JG et al. Circulation.2015;14;131(15):1313-23.

2. Sun L, van Amerom JFP, Marini D, et al. Ultrasound Obstet Gynecol. 2021;58(6):824-836.

Liqun Sun

1. Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, 2. Department of Physiology, Faculty of Medicine, University of Toronto, 3. Department of Medical Biophysics, Hospital for Sick Children, 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

Maternal Supplemental Oxygen, Fetal Circulation

Background: Health and neurodevelopmental challenges in children born preterm are common and important. Evidence shows early intervention, especially with parent involvement, can improve language and cognitive outcomes yet children born preterm rarely receive these interventions.

Methods: EPIQ, a proven quality improvement technique was taught and used at 10 Neonatal Follow-Up programs using existing resources to introduce and evaluate Plan-Do-Study-Act intervention cycles aiming to improve language or cognitive outcomes. EPIQ multidisciplinary teams included parents. The aim was to implement 4-6 interventions in each program over 2 years with 75% of cycles meeting stated goals. Barriers and facilitators were evaluated.

Results: At least 4 intervention cycles aimed to improve language were implemented at 7/10 sites and 92% of interventions met their goals. Types of interventions are shown in the Table. The neonatal intensive care unit (NICU) was directly involved in 49% of interventions. Attending EPIQ workshops, availability of systematic reviews, parents as part of the team, having a champion and institutional support facilitated success. COVID-19 impeded success. New resources, such as libraries, were found.

Type of Intervention (Number of Cycles):

Staff education (12)

Parent education (7)

Music therapy (1)

Books / lending library (8)

Language passport (3)

Parent mental health initiatives (2)

Language enhancement practices (3)

NICU development promotion (1)

Discussion: Neonatal follow-up programs typically offer assessments to screen for health and developmental challenges and refer to community services when problems are detected. Our study shows they can integrate activities to support child development before problems are detected. Education was an important first step. Language development starts in utero and parents indicated they prefer receiving information in the NICU. Parents were willing and provided useful feedback to implementing family friendly initiatives. Disruptions, such as the COVID pandemic, interfered with implementation and likely affected the 30% of sites who completed < 4 intervention cycles.

Conclusion: Neonatal Follow-Up programs can use practical, affordable resources to implement interventions to improve language in children born very preterm. The EPIQ process provides a methodology to include parent voices in optimizing how children are supported.

Anne Synnes

British Columbia's Women's Hospital, IWK Health Centre, Dalhousie University, Canadian Premature Babies Foundation, Alberta Children's Hospital, St Boniface General Hospital, London Health Sciences Centre, University of Alberta, McGill University Health Centre, Hôpital Ste Justine, Winnipeg Health Sciences Centre, Jewish General Hospital, Glenrose Rehabilitation Hospital, University of British Columbia

Prematurity, Implementation, Parents, Early Intervention

Background: Fetuses with single ventricle physiology (SVP) have a disrupted blood flow and oxygenation pattern that affects their brain development, which has been associated higher risk of perinatal white matter injury [1,2]. However, brief administration of maternal oxygen has been shown to improve fetal oxygen delivery [3].

Objective: To determine the safety and feasibility of continuous maternal supplemental oxygen in pregnancies diagnosed with fetal SVP.

Methods: Pregnant mothers bearing fetuses diagnosed with SVP were recruited at SickKids to self- administer a continuous supply of 40% fraction of inspired oxygen by nasal prongs at 4L/min for up to 24 hours/day from mid-gestational diagnosis until delivery. Maternal and fetal health were monitored bi-weekly and compliance to the protocol was monitored through a study diary. Brain maturity and injury was assessed by pre-operative neonatal MRI. Clinical data of the study participants were compared against controls cared during the same period.

Results: Clinical data of twenty-patients study participants have been analyzed and no study participant has withdrawn from the study. Mothers achieved a daily mean of 17.3 hours of oxygen for approximately 63.1 days. No major adverse events were associated with the use of continuous maternal supplemental oxygen. Compared with 207 contemporary controls, we found no differences in gestational age at birth or neonatal brain weight Z-scores. However, we observed a significant reduction in birthweight Z-score (-0.83 vs. -0.25, p=0.03), but also a decrease in the prevalence of pre-operative brain injury (5% vs. 28%, p=0.04) in neonates who received continuous maternal supplemental oxygen during fetal life.

Conclusion: In this interim analysis, continuous maternal supplemental oxygen administration is feasible and was not associated with any major adverse events in pregnancies diagnosed with fetal SVP. Our interim results raise the possibility that this therapy represents a neuroprotective strategy in fetuses with SVP. However, ongoing surveillance of any impact of fetal growth, which is an important predictor of surgical outcome in this population, is warranted.

References:

1. Sun L, Macgowan CK, Sled JG et al. Circulation. 2015;131 (15): 1313- 1323.

2. Morton PD, Ishibashi N, & Jonas RA. Circ. Res. 2017;120 (16): 960- 977.

3. Porayette P, Madathil S, Sun L et al. Prenat Diagn. 2016;36 (3): 274- 281.

Fu Tsuen Lee

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. Division of Neurology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, 4. Department of Obstetrics and Gynecology, Mount Sinai Hospital, University of Toronto, 5. Department of Diagnostic Imaging, Hospital for Sick Children, University of Toronto

Maternal Supplemental Oxygen, Fetal Circulation

The Strongest Families Neurodevelopmental research project was initiated to support parents of children with neurodevelopmental disabilities (NDD) who experience challenging behaviours such as transitioning between activities and meltdowns. With a dedicated group of parents as part of the research team, we were able to adapt the Strongest FamiliesTM online parenting program to meet the needs of families of children with NDD. We then conducted a Canada-wide randomized controlled trial with over 450 families to evaluate the effectiveness of two versions of the "Parents Empowering Neurodiverse Kids" program, one self-managed and one with group telephone coaching.

Attesting to the power of collaboration, a second project evolved as a direct result of conversations between our parent advisors and researchers about the experience of post-traumatic stress (PTS) in parents of children with NDD. The Life Beyond Trauma project branched off into its own entity with a new group of parent advisors as collaborators. The goal of this project was to advance our understanding of parents' post-traumatic stress and to develop and test a 1-on-1 coached intervention delivered online, Narrative Exposure Therapy (e-NET). A Parenting Trauma Checklist was developed and administered to over 400 Canadian parents, 94% of whom reported experiencing traumatic events related to parenting their child with a disability. The e-NET intervention was developed and tested in a randomized controlled trial for feasibility and efficacy.

Data analysis for the Parents Empowering Neurodiverse Kids and the e-NET interventions are still underway, however feedback from participants and early results are promising. This poster will highlight achievements of the project to date and provide information on several knowledge products generated.

The major focus of this project as we move into Phase 2 will be to implement the Strongest Families program into practice across Canada and to conduct further study into the e-NET intervention and on post-traumatic stress especially within marginalized groups. Designing and conducting an implementation science study which incorporates principles of equity, diversity, inclusion will be prioritized to ensure availability of evidence-based supports to improve lives of children with NDD and their families.

Karen McEwan <Karen.McEwan@iwk.nshealth.ca>

IWK Health Centre, Dalhousie University

Parenting Stress, Parents, Neurodevelopmental Disability, Patient-oriented Research

Prenatal opioid exposure has risen substantially over the past two decades and can have lasting health impacts on infants and children, including potential long-term neurodevelopmental impairments. Neonatal abstinence syndrome is a withdrawal syndrome observed in the babies of mothers who are either using opioids or being treated for opioid dependence. The opioid epidemic has a disproportionate impact on those who are most vulnerable and marginalized, including Indigenous peoples and pregnant women. Opioid use during pregnancy has risen dramatically over the past two decades.

We partnered with 13 Ontario First Nation communities to analyze community-specific data on prenatal opioid exposure, neonatal abstinence syndrome, and other important related indicators from health records data (up to 2019). Qualitative data from persons with lived experience, other community members and services providers explored the impacts of prenatal opioid exposure, the strengths in communities presently addressing the issue, and community-based strategies to further address and prevent prenatal opioid exposure.

The percentage of babies with prenatal opioid exposure and neonatal abstinence syndrome was considerably higher for the 13 First Nations that participated in this research, than for Ontario overall. Most of the exposure arose from prescribed treatment of opioid agonist therapy for opioid use disorder. Babies exposed to opioids prenatally were more likely to need higher levels of newborn care, stay in the hospital longer, and be removed from their mother's care at birth. More specific data will be released in the future with permission of the 13 communities following OCAP® principles.

The impacts are far-reaching and intertwine with the opioid crisis in Canada and the ongoing intergenerational trauma in First Nations communities. There are many strengths and strategies that exist in First Nations communities that are addressing prenatal opioid exposure.

Serene Kerpan

Vancouver Island University, Ontario Tech University, McMaster University, University of Toronto, ICES

The onset of COVID-19 created unprecedented challenges for everyone, but especially families of children with medical complexity who rely on a comprehensive range of health and social services in their daily lives. Medical complexity is characterized by chronic conditions, functional limitations, technology dependence, high health care utilization, and requires a comprehensive range of medical, psychosocial, and educational services (Cohn et al., 2020) . Although children with medical complexity account for a small proportion of the pediatric population, they are a resource intensive group within the pediatric healthcare system in Canada. Yet despite this, few studies exist examining their experiences navigating and accessing services during the pandemic. The few exceptions have primarily relied on quantitative methods to evaluate hospital visits, infection rates, and service utilization in this population during the pandemic. To address this gap the current study used a qualitative approach to explore parent experiences navigating and accessing services for their child during the pandemic. Purposive sampling was used to select 16 parents residing with their children with medical complexity (age 0 to 18 years) in British Columbia. Parents participated in semi-structured interviews virtually via Zoom between July 2021 and April 2022. All interviews were transcribed verbatim, with all identifying information removed and uploaded to NVivo. Data were analyzed thematically. Findings revealed two different areas of improvement to better meet the needs of these families, those relating to (1) technology and (2) family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with their communities as well as with other families, and for delivering therapies and appointments especially for families living in remote and rural areas. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family, having flexibility in funding, and strengthening family-professional relationships. Findings have important implications for improving service delivery and quality to enhance the well-being and quality of life of children with medical complexity and their families.

Vanessa Fong

University of British Columbia

Health and Social Services, Medical Complexity, COVID-19

Background: Autism is a neurodevelopmental disability characterized by differences in social communication and interaction as well as restricted and repetitive patterns in behaviors, interests, or activities (APA, 2013). Due to the nature and complexity of autistic people's needs across the lifespan, there is a clear and substantial impact on caregivers and their families. While the bulk of the research has focused on the impact of child and family characteristics on caregiver stress, less research has focused on the impact of system-level factors such as satisfaction with autism services. Additionally, few studies have examined the impact of navigating and accessing services on caregiver well-being.

Objectives: To address these gaps, the current study used a mixed methods approach to: 1) Examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables including family income, marital status, and child level of support needs; and 2) Explore the impact of navigating services on parent and family well- being.

Methods: 1,810 caregivers of autistic children were asked to rate their satisfaction with the Ontario Autism Program. Parents also completed the Brief Family Distress Scale (Weiss, 2011), a demographic survey, and open-ended questions asking them to describe the impact of navigating and accessing autism services on their physical and mental well-being. A hierarchical multiple regression was conducted to examine the impact of caregiver satisfaction with autism services on caregiver stress, controlling for child and family demographic factors. Open-ended responses on the survey were analyzed using a thematic approach (Braun & Clarke, 2006).

Quantitative Results: The first model, which accounted for marital support, family income, and child level of support needs accounted for 7.9% of the variance in stress levels (F (3, 1806) = 52.59, p <.001). The second model, which additionally accounted for satisfaction with autism services, was significant (R2 = 0.11, F (4, 1805) = 56.63, p <.001), and accounted for an additional 3.1% of the variance in stress above and beyond Model 1 (? F (1, 1805) = 63.30, p <.001). The associated regression coefficient for satisfaction with OAP services was significant (? = -.40, p <.001).

Qualitative Results: Analysis of the open-ended responses revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial well-being.

Conclusion: Examining the impact of navigating and accessing services on caregiver stress and well-being can help shed light on strategies for improving services and supports to help families cope during stressful times and in the event of future public health emergencies.

Janet McLaughlin

Wilfrid Laurier University

Autism, Health and Social Services, Parent and Child Well-being

Background: Deciding whether and how to disclose one's autism at work is complex, especially for autistic youth and young adults who are entering the labour market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists.

Objectives: 1) To codesign a prototype of a disclosure decision-aid tool with and for autistic youth and young adults; 2) to explore the perceived usability of the prototype (usefulness, satisfaction, ease of use) and make necessary revisions; 3) and outline the process used to achieve the preceding objectives.

Methods: Taking a patient-oriented research approach, we engaged four autistic youth and young adults as advisors on this project. Prototype development was guided by codesign principles and strategies. Tool content was informed by a prior needs assessment led by our team, the advisors' lived experiences, considering intersectionality, and research and recommendations on knowledge translation (KT) tool and decision-aid development. We co- designed an interactive PDF prototype. To assess perceived usability and experiences with the prototype, we conducted four participatory design / focus group Zoom sessions with 19 Canadian autistic youth and young adults (mean age 22.8 years). We analyzed the data using combined conventional (inductive) and modified framework method (deductive). Results: We developed four categories pertaining to the perceived usability of and participant experiences with the prototype: 1) past disclosure experiences, 2) prototype information and activities, 3) prototype design and structure, and 4) overall usability. Participant feedback was favorable and indicative of the tool's potential impact and usability. The usability indicator requiring the most attention was ease of use. Our findings highlight the importance of engaging knowledge users throughout the prototype codesign and testing processes, incorporating codesign strategies and principles, and having content informed by relevant theories, evidence, and knowledge users' experiences.

Conclusions: We present a codesign process that other researchers, clinicians, and KT practitioners may consider when developing KT tools. We also developed a novel, evidence-based, theoretically informed, disability disclosure decision-aid tool that may help autistic youth and young adults navigate disclosure processes.

Vanessa Tomas & Cameron Lau

1. Bloorview Research Institute, Holland Bloorview KidsRehabilitation Hospital, Toronto, Ontario, Canada; 2. Rehabilitation Sciences Institute, University of Toronto, Toronto, Ontario, Canada; 3. Department of OccupationalScience and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada; 4. Department of Pediatrics,University of Toronto, Toronto, Ontario, Canada

Autism, Knowledge Translation, Co-design, Decision-aid Tool

For children with disabilities, receiving therapy services is important to supporting development and participation. In Ontario, publicly-funded children's therapy services are offered through organizations called Children's Treatment Centres (CTCs). Prior to the COVID-19 pandemic, appointments at CTCs primarily occurred in person. COVID-19 restrictions meant that CTCs had to pivot and offer services remotely using telerehabilitation technologies. Given telerehabilitation's rapid uptake, the heavy reliance on telerehabilitation during the pandemic and its reported benefits, telerehabilitation will likely remain a part of service delivery for families of children with disabilities. Current data shows that children with disabilities and their families experience barriers in attending and participating in telerehabilitation appointments and may need supports to ensure that these services are accessible. This qualitative research project will work in partnership with a CTC and parent partner using an experience-based co-design (EBCD) approach, where families, clinicians and CTC management will work together to improve how families receive telerehabilitation services. EBCD is a highly collaborative approach to research that focuses on the lived experience of service users and service providers to develop innovative solutions to health service issues. Data will be collected from approximately 30 families and 30 clinicians through interviews to gain an in-depth understanding of their experiences with telerehabilitation. Next, interview data will be thematically analyzed and used to guide collaborative focus group sessions that will involve diverse stakeholders including families, clinicians and CTC management. The aim of the focus groups is to co-design solutions to barriers identified from the interview data. Creative solutions to improve access and engagement in telerehabilitation services will be prototyped and implemented at our partner CTC to ensure that families can use the services they are eligible for should they desire. The implemented solutions will be evaluated at our partnering CTC and shared with a network of experts across Canada working in children's rehabilitation practice and research. This presentation will provide updates about the current status of this work as well as discuss information related to the purpose of this project, proposed methods, plans for family engagement (Patient Oriented Research) and projected outcomes.

Meaghan Reitzel <reitzelm@mcmaster.ca>

McMaster University, CanChild, KidsAbility

Telerehabilitation, Co-design, Pediatric Rehabilitation, Neurodevelopmental Disability

Parents of children with neurodevelopmental disabilities face unique challenges and stressors while tending to their child’s complex needs. As their child’s primary caregiver, parents may be required, for instance; to take their child to frequent medical appointments, provide therapeutic support for their children’s mental health difficulties, finance costly medical equipment, and manage challenging behaviours. Previous research has determined that parents of children with neurodevelopmental disabilities tend to experience more negative mental health outcomes, such as depression and anxiety, compared to parents of typically developing children. More recently, researchers have discovered that some parents of children with neurodevelopmental disabilities exhibit clinically significant symptoms of post-traumatic stress disorder (PTSD). Additionally, the COVID-19 pandemic has compounded parents’ concerns by limiting resources and creating barriers to accessing care. As such, this systematic review will identify and categorize the correlates of symptoms associated with depression, anxiety, and post-traumatic stress disorder (PTSD) (as per ICD-11 and DSM-5 criteria) among parents whose children have been diagnosed with a neurodevelopmental disability to synthesize and update the evidence base. A secondary analysis will be conducted on the correlates that have been identified after the pandemic, to examine whether the correlates of mental health problems have shifted following the onset of the COVID-19 pandemic. It is anticipated the results of this study could help families, researchers, physicians, and other mental healthcare professionals to appropriately recognize and respond to potential risk factors for depression, anxiety, or post-traumatic stress in parents of children with neurodevelopmental disabilities. Further, these findings may identify challenges that have been exacerbated by the pandemic so that these issues can be adequately addressed. This information may illustrate the importance of prevention and treatment for parents.

Sydney Walker

IWK Health Centre

Mental Health, Parents, Neurodevelopmental Disability, COVID-19

Many parents of children with intellectual and neurodevelopmental disabilities are repeatedly exposed to traumatic events while attending to their child's complex needs and, thus, exhibit symptoms of posttraumatic stress. This often goes along with comorbid difficulties such as physical health impairments, depression, anxiety, and substance use. Previous research has demonstrated that trauma-based interventions, such as exposure-based therapy approaches, effectively reduce posttraumatic stress symptoms and connected mental health challenges such as depression. However, numerous logistical issues, such as cost and the availability of providers, create barriers to parents' access to these mental health professionals and services.

This study aimed to evaluate the feasibility and efficacy of online Narrative Exposure Therapy (eNET) for parents of children with neurodevelopmental disabilities. The study included 66 participants, 33 of these participants were exposed to the immediate intervention group while the other 33 were placed in the waitlist-control condition and received the intervention after a 3 month wait. The eNET intervention was administered to parents online by paraprofessionals over 8-12 sessions, each 90-minutes in length. Parents' posttraumatic stress symptoms were measured using a pre-post design and followed up at 2-and 6-month marks throughout the study. Secondary outcomes, such as physical symptoms, depression symptoms, anxiety symptoms, and functionality were also recorded. There were no significant adverse events attributable to the therapy.

The study demonstrated that exposure therapy can be safely, effectively, and virtually delivered by paraprofessionals for posttraumatic symptoms. This presentation will show the promising results of this study and will discuss the implications that result of this study for parents of children with neurodevelopmental disabilities experiencing posttraumatic stress.

Patrick McGrath

IWK Health Centre

Mental Health, Parents, Parenting Stress, Neurodevelopmental Disability

Literature pertaining to the employment outcomes and success for autistic adults has increased over time. However, resources directed towards providing suitable preparatory training for those from ethnic minorities, namely Chinese, are very limited. This study aims to serve as the forerunner of understanding the unique needs of Chinese autistic adults in seeking employment. It also re-examines some of the ways in which people may perceive the needs and barriers of employment among this population. Cultural factors and how they may impact vocational adjustments are also considered. 34 survey responses from participants between the ages of 12-29, in which 20 individuals diagnosed with autism and 14 individuals diagnosed with other mental illnesses, were examined and included in the study. This study utilizes various questionnaires and includes work history, interests, abilities, difficulties in work, future career plans and emotional needs of Chinese autistic youth and young adults. The results of this study indicate autistic individuals have similar motivations for work and readiness with neurotypical individuals who have mental health conditions. However, autistic individuals are more likely to be unemployed, and even when employed are more likely to be hired as part-time employees instead of full-time employees. Even when depressive symptoms appear to be similar between the two groups, anxiety symptoms are more common among autistic individuals and may experience more difficulties when doing things in daily life which suggests that mental health issues should be a priority for concern for Chinese autistic adults. The differences in employment can be attributed to significant differences in work habits, work styles, and preferences observed between autistic young adults and the mental health comparison group. There is also evidence of social and sensory challenges that autistic individuals may encounter. Nevertheless, it is important to consider and necessary to provide support for the special needs via career counseling and transitions. The factors that may influence differences in employment between the ASD group and the mental health comparison group along with cultural impacts are discussed.

Jeremiah So

1. Community Family Services of Ontario, Canada, 2. Department of Applied Psychology, Bouve College of health Sciences & College of Professional Studies, Northeastern University, 3. Department of Psychiatry, University of Toronto, Canada, 4. Department of Psychiatry, The Hospital for Sick Children, Toronto, Ontario, Canada

Autism, Health and Social Services