E-Poster

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  • Susanna Martin, Jill Dosso, Jaya Kailley, Julie Robilllard

    Background/Objectives: Social robots – small characters or pets that can socially engage with a user – have healthcare applications and show promise as tools to support children living with anxiety (e.g., Dawe et al., 2019). More than twenty social robots are commercially available and marketed to families, but the design of these devices often does not focus on the experiences and outcomes that are most important to them (Dosso, Riminchan, & Robillard, 2023; Kabacińska et al., 2021).

    Description: Here, we conducted 10 online co-creation workshops with 1) children with anxiety ages 7-13 (n=24) together with their family members (n=20), and 2) youth ages 14-18 with anxiety (n=12). These workshops were co-designed with a group of eight patient partners and featured a validated robot expectations scale and discussions of potential robot applications for anxiety and considerations around emotional displays by robots using a variety of fun, interactive prompts. Participants’ perspectives were captured by content analysis. Anxiety-specific robot applications included delivering breathing and calming exercises, providing encouragement and support, and managing intrusive or distressing thoughts. Participants desired a soft, cuddly, expressive form factor for the robot. Perspectives on robot emotionality were nuanced; participants wanted a robot to detect and display emotions but did not want to feel “obligated” by the robot’s feelings. Concerns included privacy and the possibility of a robot diminishing interactions between people.

    Significance: The work identified key applications and considerations of social robotics for pediatric anxiety, especially around emotional display. Findings will facilitate the development of patient-informed, effective, and ethical social robotic interventions for children both in a hospital setting and at home.

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  • Nadine Gall , Georgina Bird, Shelley Goforth

    BACKGROUND:

    Despite decades of reports calling for changes, Indigenous children and youth continue to face significant health and social disparities compared with their non-Indigenous counterparts. Maternal and child health concerns persist, and infant mortality rates are double. Indigenous children and youth experience higher rates of injury, suicide, obesity, diabetes, and other chronic conditions.

    In 2022, the Alberta Children’s Hospital (ACH) and Indigenous community partners endeavoured to vision and implement an Indigenous Child Health Team – supporting families across the continuum of care, hospital to home. This work stemmed from the Indigenous Health Action Plan (IHAP) spearheaded by Alberta health Services and Indigenous partners - honouring a commitment to improve relationships, service delivery and health outcomes for all Indigenous people.

    Alberta is home to a large Indigenous population, including Inuit and Metis peoples, with rich heritages and cultures. ACH sits on what was once an important Indigenous buffalo range located in the traditional territory of the Blackfoot peoples.  ACH provides specialized care to children and families from across the Calgary Zone and Southern Alberta.  Indigenous people account for roughly 6.5% of the population in Alberta.

    OBJECTIVES:

    The following goals address needs identified by Indigenous communities as part of extensive engagement, including talking circles, conversations, and storytelling specific to Indigenous child health. 

    1:  Culturally responsive care for Indigenous children and families

    2:  Coordinated care across the continuum of pediatric and Indigenous health services

    3:  Holistic care addressing the social determinants of health, while ensuring equitable healthcare access for Indigenous children and families

    DESCRIPTION - SERVICE MODEL:

    This Indigenous child health model includes a social determinants approach – providing a way to understand and address the interrelated context of environmental, social, and historical factors underlying health disparities. The design includes Indigenous workers and spans tertiary level and community-based care. Services include:   

    • Indigenous child health clinical care coordination
      • Integrating culturally appropriate care planning, discharge supports, and clinical follow-up across the continuum of pediatric and Indigenous health services
    • Indigenous psychosocial supports to address SDoH and family functioning
    • Virtual care and hospital outreach services to Indigenous communities
    • Onsite Indigenous cultural supports, traditional healing practices, and consultation
    • Community-based resourcing and navigation supports - customized and led by individual Indigenous communities to meet their unique needs and circumstances

     

    SIGNIFICANCE:

    There is great heterogeneity among Indigenous communities, therefore, a multi-pronged approach that includes community specific supports and self-determination is important. Along with diversity of culture, language and community, there are also substantial differences in the provision of health and social services, resources, and community engagement. 

    By understanding the unique and complex healthcare needs of Indigenous children and families, this initiative is helping to decrease health disparities, reduce barriers, improve health outcomes, and keep children in their communities with better supports and follow-up. Evaluation data, including feedback from families, will be shared.   

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  • Trish Thomson, Jennifer Begg, Dr. Mark Chilvers, Dr. Garth Meckler, Dr. Peter Skippen

    Background/Objectives

    In 2015, Child Health BC (CHBC) facilitated 109 emergency department self-assessments across the province as part of the Provincial Emergency Department (ED) Tiers of Service work. The survey identified a need for implementation of best practice resources to support standardized pediatric sepsis care. ​

    A screening tool was drafted and two BC pediatric ED’s utilized these in quality improvement projects. This gave data on current sepsis screening practices and tested the use of a pediatric sepsis screening tool. Chart reviews and interviews with clinicians (RNs, MDs, ED leadership) on the impact of the sepsis screen on ED resource utilization & workflow were completed.​

    Subsequently, a pediatric sepsis screening tool, care algorithm and order-set was developed and trialed at two non-pediatric specific emergency departments, in the North and Interior. The learnings from this trial were utilized in the development of the provincial guideline and resources that will support implementation. ​

    Description

    The CHBC Provincial Pediatric Sepsis Toolkit is composed of the following resources:

    • Clinical Guideline
    • Screening Tool
    • Clinical Care Algorithm
    • Parent/Caregiver Resources
    • Knowledge Translation Materials

     

    The resources developed align with international best practices and evidence, and support standardization of care across BC. The guideline, screening and clinical support tools developed for clinicians in Emergency Departments and Urgent Care Centers provide guidance to support recognition and treatment of pediatric sepsis or suspected sepsis. In addition, there are resources to support parent/caregivers when a child has been diagnosed with sepsis and public facing materials to promote awareness of pediatric sepsis and the importance of early intervention.

     

    Provincial partnerships were key, and included health care providers across the different health authorities, families and Indigenous partners. This provided excellent engagement across the province with multidisciplinary representation on working groups and gave the ability to receive and share varying perspectives and feedback. Recent international guidance from the Surviving Sepsis Campaign (SSC) provided a strong foundation for the clinical care recommendations which were reviewed to ensure they were applicable to the BC context.

    One significant collaboration was the development of a strong relationship with the Queensland Pediatric Sepsis Program, given similar geographical challenges facing Queensland and BC. This enabled the adaption of their pre-existing resources to the BC context. Other collaborations include  ​The International Institute of Child Health, Sepsis Alliance and the BC Sepsis Network. The latter will promote the toolkit on their website and within education streams.

    Collaboration with Sepsis Canada and BC Patient Voices allowed inclusion of patient partners to support development of parent/caregiver materials. In addition, these materials were translated into 5 of the most prevalent languages in BC.

    Significance

    Sepsis is a significant cause of morbidity and mortality in children, particularly in those aged under two years. Sepsis is treatable and early recognition & management are key to prevent long-term complications & death. The development of this toolkit will ensure health care providers have access to best practice recommendations to recognize and treat pediatric sepsis or suspected sepsis as well as increase public awareness of sepsis. 

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  • Miranda Amundsen, Kimberly Miller , Jennifer Claydon, Sandy Tatla

    Background: The current crises in health care providers may be viewed as a shortage of knowledge producers resulting in poor outcomes (Reed & Lawrence, 2008). One of the major challenges is the lack of overlap between research priorities and clinical concerns as they often operate in isolation from each other. By involving frontline health care providers in developing the research question, knowledge created is thought to be highly practical and sustainable (Vollebregt et al., 2022). This research arising from practice has been labelled practice-based research (PBR), conceptualized as an alternative paradigm thought to compliment the traditional approach to research.

    PBR questions identified by nurses and allied health care professionals are impactful as they arise from real-life challenges and gaps in practice (Matus et al., 2018). Engagement in PBR has demonstrated improved health care processes, reduction in cost, lower mortality rates, increased patient and family satisfaction, and a reduction in staff turnover (Harding et al., 2017; Pintz et al., 2022). Despite these positive outcomes associated with PBR, it has been challenging to implement, especially in pediatric academic health sciences centres.

    Objective: Share the experiences and the systematic approach used to establish a tailored strategy for promoting and supporting PBR at BC Children’s Hospital and Women’s Hospital and Health Centre (C&W) to support other organizations to establish a positive practice-based research culture fit for their contexts.

    Description: To inform the strategy the PBR team conducted:

    • An environmental scan and knowledge sharing with other Canadian health centres offering PBR Challenges
    • A review of the literature to identify key facilitators and barriers for point-of-care nursing and allied health PBR
    • An implementation science informed approach to tailor interventions to the barriers and facilitators
    • SWOT analyses with point of care staff and leaders to further explore context specific barriers and facilitators to PBR

    Barriers to nursing and allied health point of care PBR at C&W were consistent with the literature. These included lack of research knowledge and experience, dedicated staff time, backfill, funding, variations in leadership support, and social acceptance by colleagues. Identified facilitators included: support from leadership, dedicated research time, workshops, grants/awards, and navigation.

     Our strategy tailored to these known factors includes:

    • Engagements with leadership and with point-of-care staff
    • Supportive structures and processes in collaboration with research institutes and universities
    • Mentorship consultations with the PBR team providing navigation, tailored education,  resources and cultivating research partnerships
    • Pilot a PBR challenge
    • Celebrating and showcasing PBR

    Evaluation includes process indications (e.g. satisfaction with mentorship consultations), outcomes (research/knowledge products) and impacts (research culture survey).

    Significance: PBR has demonstrated success in improving patient outcomes and in recruitment and retention of staff; however, there are barriers to research engagement for point-of-care nursing and allied health. Using an implementation science informed approach we intend to establish a tailored, context-relevant strategy for promoting and supporting PBR by nursing and allied health point-of-care staff at C&W that could be adapted by others.

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  • Danielle Russell

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  • Bryn Zomar, Yasaman Yaghoub, Anya Smith, Emily Schaeffer, Ashleen Khatra

    Title:

    A case-control study to evaluate the role of swaddling in developmental dysplasia of the hip

     

    Authors:

    Bryn O Zomar1,2, Emily K Schaeffer1,2, Ashleen Khatra2, Yasaman Yaghoub2, Sharon Ho2, Kishore Mulpuri1,2, Anya Smith3

     

    1Department of Orthopaedics, University of British Columbia, Vancouver, Canada

    2Department of Orthopaedic Surgery, BC Children’s Hospital, Vancouver, Canada

    3School of Population and Public Health, University of British Columbia, Vancouver, Canada

     

    Background/Objectives:

    Developmental dysplasia of the hip (DDH) is the most common pediatric hip condition. While the link between swaddling and DDH has been suggested for several decades, there have been few epidemiological studies conducted specifically investigating this relationship. Hip healthy swaddling allows for unrestricted movement of the lower extremities so that the hips can flex and abduct. The aim of this study is to assess whether a relationship exists between swaddling and DDH through a case-control study design.

     

    Description:

    Case participants were identified from a global prospective registry of patients diagnosed with DDH and control participants identified through public posting. All case participants were diagnosed with DDH. For those less than 3 months old at the time of diagnosis, only infants with an unstable and/or dislocated hip were included. For those older than 3 months, infants with a stable and dysplastic acetabulum on imaging were also included. Control participants are healthy children without a history of DDH. Parents of children fitting eligibility criteria were asked to complete a one-time survey to collect information about demographics, birth details, known risk factors for DDH and swaddling history. The target for both the case and control cohorts is n=400. For this preliminary analysis we calculated summary statistics for select risk factors, to-date.

     

    Currently, 226 case and 279 control participants have completed the survey. There were a higher proportion of girls in the case group (83% vs 47%), a higher proportion of case participants were born breech (42% vs 9%) and born via caesarean (55% vs 35%) compared to the control group. Fewer case participants were first born children (63% vs 73%) or swaddled (51% vs 72%) than the controls, though both groups were swaddled for a similar length of time (11.9±12.3 weeks vs 16.3±12.2 weeks) and had similar access to hip healthy swaddling resources (59% vs 53% of those who swaddled).

     

    Significance:

    Preliminary analyses have demonstrated that a higher proportion of case participants present with known risk factors for DDH than control participants, as would be expected though fewer case participants were first born children. Surprisingly, however, fewer case participants reported swaddling their child than control participants. Future analyses with a complete dataset will explore the swaddling variables further while controlling for other known risk factors to assess the impact of swaddling on DDH. This study will provide high quality evidence to determine the relationship between swaddling and DDH and will contribute to better educational resources for clinicians and parents through clear guidance around swaddling.

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  • Jessica Esufali, Chantal St-Jules, Joelene Huber, Kelsey Ferguson, Kate Langrish, Michelle Shouldice

    Background: Children with Intellectual and Developmental Disabilities (IDD) and/or autism spectrum disorder (ASD) often experience barriers in accessing medically necessary care, higher levels of stress and agitation in hospital settings and struggle to cope with health care encounters. As a result, they may experience delays in diagnosis, medical care and treatment, and overall poorer physical and mental health outcomes. Adaptive care planning places the child/youth and their caregiver at the centre and plans the health care encounter (i.e., hospital admission, outpatient clinic visit, surgery, procedure or medical test) around their unique care needs using a developmental, behavioural and mental health approach.

    Objectives: To enable children/youth with ASD/IDD to access medically necessary care through adaptive care plans (ACP) with the goal of decreasing healthcare encounter-associated stressors, promoting safety and timely access to care and decreasing staff/patient injuries and code white events.

    Description: An ACP Program was developed including interdisciplinary experts based on unique care needs: developmental pediatrician, nursing, behaviour analyst, child life specialists, anesthesia, developmental service workers, special education teacher. The team works closely with the patient, their family caregiver(s) and point-of-care team(s) to develop a plan that ensures all care is clustered and complete on the appointment day. ACPs involve planning from home, to hospital, and back to home, while thinking of everything in between. This includes planning to prepare the child/youth for coming to the hospital (i.e., social stories, desensitization), travel to the hospital, entry to the hospital, route to the health care encounter, during the health care encounter and planning for getting home. Plans are communicated to healthcare team members and documented in the patient’s chart for sustainable on-going use. This poster session will review key interdisciplinary team member roles and accountabilities and the ACP workflow that utilizes a patient and family centered approach, and key planning categories that enable successful hospital visits. 

    Significance: The ACP program has been operating for 1.5 years and has effectively reduced behaviour escalations and eliminated injuries and code whites while enabling children/youth with ASD/IDD to access timely medically necessary care, investigations and/or procedures. In 2022, the team completed over 70 unique ACP with zero escalations or Code White Events. ACPs can be replicated in other paediatric centers to support children/youth with IDD/ASD access medically necessary care that is individualized to their unique care needs.

    Conclusions/Implications: This multi-disciplinary ACP program is an innovative safety solution and serves as a model- of-care to improve access to medically necessary care for children/youth with ASD/IDD while reducing environmental stressors, decreasing behaviour escalations, and avoiding patient, caregiver and staff injuries and code whites.

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  • Dr. Ram Mishaal, Dr. Mor Cohen-Eilig, Vivian Wong, Mia Francl, Carolyn Chowne, Carol Lai, Nastaran (Sunny) Vafi, Keith O'Connor, Chetna Jetha

    Although current clinical guidelines and assessments enable a timely diagnosis of cerebral palsy (CP) in infants as early as 3-4 months, the average age of CP diagnosis is ~19 months in Canada. In British Columbia (BC), this lags even further at ~25 months. The lack of a standardized diagnostic care pathway in BC remains a challenge to ensure detection of CP at the population-level, hindering implementation of best practices and resulting in children falling through the gaps and significant delays to diagnosis and early intervention.

     An early diagnosis is crucial to accessing CP-specific early interventions to improve motor and cognitive outcomes and prevent health complications. Growing evidence indicates best responses to early intervention during the first years of life that optimize neuroplasticity.

    To expedite diagnosis for all infants at high risk of CP in BC, the CP Early Diagnosis Clinic (CPEDC) was launched at Sunny Hill Health Centre, BC Children’s Hospital, under guidance of a new CP diagnostic care pathway. The creation of the BC CP diagnostic care pathway was directly informed by evidence review and expert recommendations from the BC Cerebral Palsy Advisory Committee – a panel of parent advocates, health professionals and community leaders. Adapted to align with the existing healthcare system in the province, the pathway follows the evidence-based diagnostic algorithm developed by the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM).

    At the CPEDC, an interdisciplinary team uses the pathway and its recommended assessments to assess high-risk infants who do not have CP diagnosis but have had the GMA completed by the Neonatal Follow-Up Program or Neonatal Intensive Care Units in BC. A CP diagnosis is determined via motor function assessments and neurological examinations conducted by developmental pediatricians, occupational therapists, and a nurse clinician. Families are then referred to the appropriate early intervention in their local communities. Follow-up appointments or touch points are offered for families to support continuity of care during this vulnerable time, especially those with a newly diagnosed infant. Care coordination is also available for infants and children with medical complexities when identified.

    CPEDC is one of the first provincial programs in Canada providing systematic early detection and diagnosis of CP for all eligible high-risk infants. This redesigned diagnosis journey for families aims to prevent delay of assessments, lower the age of diagnosis, and facilitate early intervention within the optimal developmental period. The innovative service model provides evidence-based, timely and equitable care. Evidence shows provision of an early diagnosis of CP can lead to better outcomes for parents and caregivers’ well-being, satisfaction with the healthcare system, and overall quality of life for the child and family.

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  • Sarah Munce, Sarah Munce, Alene Toulany, Kosta Pachneris, Mandy Archibald, Gina Dimitropoulos, Kristina Kokorelias, Dorothy Luong, Michelle Nelson, Melanie Penner, Emily Seto, Robert Simpson, Christopher Hoang, Gideon Yang, Mark Bayley

    Background: Transition from the child to adult health care system for youth with disabilities is a complex process that should include a variety of services. If the transition to the adult health care system is not successful, it can lead to poor health outcomes and less opportunities to participate in the community. Programs that help the transition from the child to adult health care systems are important and needed, but not much is known about what the best programs are.

    In a previous study completed by this team, an intervention involving peer navigation was identified as a potentially effective and important intervention to help with transition. Peer navigation is defined as a one-on-one interaction between a peer navigator and a patient. It involves a trained peer who provides help with education, advocacy, and system navigation.

    As a follow-up to this study, the team interviewed youth with cerebral palsy (CP) and childhood acquired brain injury (ABI) and family members to identify their needs and preferences for what would be involved in a peer navigation intervention. Some of the components that were identified included: a) a knowledge/resource library that can be kept up-to-date, b) emotional and social support between youth and navigators c) opportunities to encourage advocacy/opportunities for participants to discuss advocacy strategy and d) opportunities for parental involvement. These considerations are now being added to an existing virtual care platform to form a new peer navigation intervention for youth with childhood-onset disabilities called CONNECT: Compassionate Online NavigatioN to Enhance Care Transitions.

    Objective: The purpose of the current project is to test CONNECT with a small group of youth to look at how feasible the intervention is, what potential benefits it might have, and understand the experiences of youth and peer navigators who participate in the intervention.

    Description: An integrated knowledge translation (iKT) panel of youth with CP and childhood-onset ABI and caregivers will be established at the outset of the study to ensure the relevance, quality, and direction of the project. This mixed methods study will 1) test the feasibility, acceptability, useability, usage, and potential effectiveness of CONNECT among youth with CP and childhood-onset ABI over 6-months (pre-post study design), and 2) explore the experiences of participating in CONNECT and the study itself from the perspective of youth and peer navigators (qualitative descriptive design).

    Significance: CONNECT presents a fiscally sustainable approach to transition program delivery. The potential to implement CONNECT into existing transition programs and pathways may be a clinically and cost-effective solution that would have positive and far-reaching beneficial impacts on young people and the healthcare system.  

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  • Farah Azim, Tim Bhatnagar, Mona Behrouzian, Karen Davies, Diane Wickenheiser, Gail Jahren, Nicholas West, Lise Leveille, Gill Lauder

    Background/Objective:

    myoActivation® assessment utilizes systemized movement tests to assess for pain and limitations in motion secondary to myofascial dysfunction. myoActivation needling therapy resolves the myofascial components of pain and is associated with immediately observed changes in pain, flexibility, and range of motion. The principal aim of this study was to objectively characterize the kinematic metrics of upper and lower body motion before and after myoActivation movement tests and therapy.

    Description:

    Five consecutive eligible adolescent participants considered appropriate for myoActivation were consented to receive their myoActivation intervention in a motion laboratory.  Clinical motion analysis was used to measure the changes in maximum range of motion (maxROM) and maximum angular speed to maximum ROM (speedROM) of movement tests predicted to change. Metrics were analyzed to assess changes over specified time intervals - i) baseline to after initial myoActivation session, and ii) baseline to after complete myoActivation course. Each participant served as their own control. We demonstrated objective evidence of improved maxROM and/or speedROM in 63% of the movement tests predicted to change after just one session of myoActivation and in 77% of movement tests predicted to change over the complete course of treatment. The myoActivation clinician observed positive change in 11/19 of movement tests across all patients, that were predicted to change after the initial myoActivation session; 81% of these positive changes were confirmed by the kinematic data.

    Significance:

    Clinical motion analysis provides objective support to clinicians evaluating, treating, and teaching myofascial release. A larger, prospective clinical trial is warranted to explore the impact of myoActivation on movement. Refinement of observation techniques and outcome measures established in this feasibility study will strengthen future clinical motion analysis of the myoActivation process. 

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  • Katherine Bailey, Julia Avolio, Lisha Lo, Amy Gajaria, Alene Toulany

    BACKGROUND: Youth with chronic health conditions often experience challenges during their transition from pediatric to adult care. Those with marginalized identities are likely to experience further disparities as they navigate structural barriers during their transition. However, the impact of the social and structural determinants of health (SSDOH) on outcomes for youth transitioning to adult care is not broadly understood.

     

    OBJECTIVE: In collaboration with 3 young adults with lived experience, this scoping review identified the SSDOH impacting outcomes for youth transitioning to adult care, particularly those experiencing structural marginalization, including Black, Indigenous, and 2SLGBTQ+ youth.

     

    METHODS: Databases MEDLINE, Embase, CINAHL, and PsycINFO were searched from the earliest available date to May 2022. Studies identifying associations between SSDOH and transition outcomes were included. Transition outcomes were categorized into clinically-relevant themes. Associations between SSDOH and transition outcome themes were described as significant (i.e., all studies showed a significant association between specific SSDOH and transition outcome, p<0.05), non-significant (i.e., all studies showed no significant association, p>0.05), and unclear significance (i.e., studies showed both significant and non-significant associations). Data were reported in accordance with PRISMA-ScR.

     

    RESULTS: 101 studies were included. Most studies reported on including Black participants (n=50), while few included Indigenous (n=7) and 2SLGBTQ+ (n=1) youth. Twelve social determinants of health (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, stigma) and 5 demographic characteristics (race/ethnicity, gender, illness type, illness severity, comorbidity) were examined. No studies examined the structural determinants of health or the impact of discrimination on transition. Gender (n=60) and race/ethnicity (n=41) were the most commonly studied. Of those, gender was significantly associated with communication, quality of life, satisfaction, transfer completion, and transfer timing. Race/ethnicity was associated with appointment keeping and transfer completion.

     

    CONCLUSIONS: Improved understanding of the impact of SSDOH on transition outcomes is needed to help inform interventions and mitigate health inequities. Future research should use an intersectional health equity lens to identify policies to promote equity during the transition to adult care.

     

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  • Kynna Sorg, Carmina Gogal, Kourosh Afshar, Erik Skarsgard

    Background/Objectives: Having an operation can be an essential part of patient care. However, operating rooms account for up to one third of total hospital waste. Some of the main sources of waste are disposable materials and single use devices. In our department, last year, there was approximately 5,635 patients who were checked in on the day of their surgery. Each of these patient received a plastic patient belonging bag on arrival and sometimes even used a second bag for shoes or large items.
    Our aim was to reduce plastic bag usage in our department by 50%.

    Description: We used the PDSA (Plan-Do-Study-Act) model for improvement. With engagement and collaboration from key interested parties (leadership, nurses, aides, etc.), we enacted the following strategies. We removed the bags from the room set up and from all bedside carts and moved them to a central location at each team care station. A paper tracking sheet was attached to the containers and staff could track whether they gave a bag to a family. With these initial interventions, we noted an 81% reduction in bag usage, on average, over a 5 week period.

    We paused our tracking and evaluated our results, and noted them to not have any defined trends or shifts. After evaluation, we implemented a new strategy by adding a few lines to the letters sent out to familes by our pre-admission clinic and OR booking offices, asking if familes could bring a bag or two with them for the child's belongings. This new strategy has resulted in a drop in bag usage. Patient and family engagment is being explored, with possibilities of a survey.

    Significance: Climate change is becoming more noticeable in recent years. We can notice it with the increase in extreme weather events, such as increased temperatures, heat domes, wildfires, intermittent poor air quality, and floods. Extreme weather and air pollution can have negative impacts on our health. With these increased events, it leads to impacts on our health care system - more patients coming in for care, staff access distruptions, infrastructure damage, and increased demand for supplies. It will take many changes to slow this process - if lots of people make small changes, it can have a greater impact. Starting with a small change is a good place to start. There are 1-5 million plastic bags consumed worldwide each year. It can take up to 1,000 years for a plastic bag to degrade in a landfill. If many organizations proactively reduce the consumption of these bags, hopefully the number of bags consumed each year would also decrease. The best bag to use, is the one you already have. 

    Climate change is becoming more and more noticeable in recent years. We can notice with the increase in extreme weather events, such as hotter temperatures, wildfires, floods, etc.

    Extreme weather and air pollution can have negative impacts on our health.

    With these increased extreme weather/poor air quality events, it leads to impacts on health care – more patients coming in, staff access disruptions, increased demand for supplies, etc.

    Climate change is becoming more and more noticeable in recent years. We can notice with the increase in extreme weather events, such as hotter temperatures, wildfires, floods, etc.

    Extreme weather and air pollution can have negative impacts on our health.

    With these increased extreme weather/poor air quality events, it leads to impacts on health care – more patients coming in, staff access disruptions, increased demand for supplies, etc.

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  • Erin Luther, Christine Cassidy, Usman Khan, Paul Hong

    Background: Shared decision-making (SDM) is an approach in which health care providers, patients and caregivers make treatment decisions together by considering both the best medical evidence and the patient/caregiver’s preferences and values. SDM is frequently lauded as a pinnacle of family-centered care, however the literature on SDM support needs unique to children’s health care is limited. Pediatric otolaryngology (ear, nose and throat) surgeries are an important venue for SDM as these prevalent procedures are highly preference-sensitive. Surgeries may be overperformed if caregivers are not empowered to participate in choosing the best-fit options for their families, a participation gap that can intensify healthcare disparities. Guided by the Knowledge-to-Action cycle, the purpose of the present study was to identify barriers and facilitators to SDM in pediatric otolaryngology.

     

    Description: A qualitative descriptive design was utilized to analyze themes in semi-structured interviews with pediatric otolaryngologists and with parents who had made decisions about adenotonsillectomy or ear tube placement for their child. Interview transcripts were deductively coded utilizing the Theoretical Domains Framework (TDF) to identify determinants of SDM behaviours related to capability, opportunity, and motivation of surgeons and parents. Sub-themes within the domains were then identified through inductive coding. A total of 22 interviews were conducted to achieve thematic saturation. An integrative analysis triangulated sub-themes between parents and surgeons to locate priority areas for SDM support.

    Surgeons saw SDM as strongly applicable to pediatric otolaryngology and viewed their practice as reflective of SDM, however reported they often did not explicitly ask parents about their preferences and values. Other key barriers for surgeons included beliefs that some parents did not prefer SDM, and environmental barriers such as a lack of time for SDM, fee-for-service disincentives, and challenges in utilizing support staff. Barriers for parents included a perceived lack of choice, beliefs that their input on the decision was not relevant, and a lack of good information resources to use before and after the consult. Parents felt a strong need for emotional support as proxy decision makers for their children and indicated that follow up conversations with nurses and access to a consistent care team were important in providing this support.

    Significance: Integrative analysis revealed four priority needs to support SDM in this clinical context: 1) Clear communication of equipoise; 2) Structured consults with explicit questions about values and preferences 3) Clinical infrastructure for ongoing emotional support, and 4) Information resources for use at home. Novel contributions of the research include evidence that proxy decision making requires significant informational and emotional support outside the consultation, even for non-complex cases

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  • Olivia Scoten, Vivian Wong, Mor Cohen-Eilig, Stephanie Glegg, Ram Mishaal

    Background: A recent review of Canadian Cerebral Palsy (CP) Registry enrolments found the mean age of diagnosis in children in British Columbia (BC) is 25 months of age – significantly later than clinical guidelines enable. Delays in CP diagnosis can result in challenges in receiving appropriate supports and early interventions, and put many families through an unnecessary, stressful journey. Our aim was to examine barriers and facilitators of early CP diagnosis among BC physicians to inform the design of a knowledge translation (KT) strategy to support guideline adoption.

     

    Methods: This cross-sectional study used the Theoretical Domains Framework (TDF) and associated Behaviour Change Wheel (BCW), an implementation science meta-framework, to guide the development of a comprehensive, online barrier/facilitator assessment survey. The survey consisted of 24 questions; responses were a mix of Likert scale, forced choice, and open text. BC pediatricians, pediatric neurologists and pediatric geneticists were recruited using purposive and snowball sampling. Invitations were sent through university, research institute, and professional association email lists and newsletters. Quantitative data were analyzed using descriptive statistics; open-text responses were analyzed using content analysis.

     

    Results: Sixty physicians participated. Most participants reported working in general pediatrics (59%), complex care (24%), and neonatology (20%). 64% of respondents were currently diagnosing CP in practice. Key barriers to diagnosis related to the TDF domains of Knowledge, Skills, Beliefs about Capabilities (i.e., confidence), and Environmental Context and Resources. Major Knowledge gaps included understanding the proportion of children with CP that are born premature versus full term (66%), and age at which predicting the severity of CP is most accurate (46%). Skills gaps pertained to the use and interpretation of clinical assessments for diagnosis (61%), and recognizing early motor type, topography, and severity of CP (32%). Confidence barriers included uncertainty about ruling out other causes of motor delay (48%), making a false positive diagnosis (36%), diagnosing children under two (48%), and/or those who present with low tone (55%). Access to education/training on CP diagnosis was a key barrier in the domain of Environmental Context and Resources. Facilitators included positive attitudes towards early diagnosis (91%) and recognizing CP diagnosis as part of their professional role (87%).

     

    Conclusions: Many physicians in BC are not currently diagnosing CP despite available evidence and guidelines. Using the BCW, key barriers to diagnosis were mapped to the following mechanisms of action for intervention: Education, Modeling, Enablement, Training, and Persuasion. These evidence-based mechanisms will be incorporated into a large-scale KT intervention, tailored to the BC context, to support clinical practice change in early CP diagnosis.

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  • Nakita Sydij

                The purpose of the study aimed to illuminate what advocacy for autistic children looks like from the perspectives of families and service providers, having captured “voice” from a qualitative lens.  Shifting from a deficit-based model and lens towards a more strengths-based neurodiversity affirming approach, this Action Research study explored the perspectives of two autistic children, two caregivers and two healthcare professionals that provide services to the autistic children.  Four themes emerged; a) how entanglements in a child’s life contributes to their success, b) how self-image affects an autistics’ ability to advocate, and c) how prevalent social bias and lack of understanding affects this community and d) why the scope of knowledge and understanding about autism needs to be cast wider.  Consequently, the study points to the need for more awareness about autism and education on how to best support autistic individuals as both appear to be a contributing factor to reducing dominant discourses and misconceptions about autism.  This in turn may alleviate some challenges caregivers and children face when advocating for support and accommodations in the healthcare and school system.  Furthermore, increasing the education and awareness to minimize misunderstandings, and increasing the advocacy skills in families, will inherently positively impact the child’s ability to reach their full potential. 

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  • Dr. Grace Li, Dr. Mor Cohen-Eilig, Nandy Fajardo, Priya Chetty, Leeann Taylor, Dr. Ram Mishaal

    Background/Objective:

    Children with complex medical, neurological and orthopedic conditions often require rehabilitation to improve their function. Some of those patients may not meet the criteria for intensive inpatient rehabilitation, leaving them with limited access to rehabilitation services in British Columbia (BC). To address this issue, we have initiated a pilot program to provide outpatient rehabilitation services for pediatric patients who do not meet the current mandate for inpatient admission at the acute rehabilitation unit in BC’s Children Hospital (BCCH), but still require a more intense or higher level of specialized rehabilitation services than those available in the community.

    Description:

    As a first step, we identified internal stakeholders from BCCH to conduct a needs assessment. We reached out to the following BCCH programs: Oncology, Rheumatology, Neurology, Orthopedics and Spinal Cord clinic to identify the current need and gaps in access to pediatric rehabilitation services. We engaged with other external stakeholders including patients, families, healthcare providers, administrators, and community organizations to identify their priorities and needs. Further, we performed environmental scan to understand the current rehabilitation service landscape, as well as what is available in other jurisdictions in Canada and the US. Based on the inputs from needs assessment and environment scan, we will then develop a pilot program that will offer a range of multidisciplinary allied health services in an outpatient setting. We intend to start the pilot program with a small number of patients within BCCH programs, then expand to include referrals from more programs, and then possibly replicate the model in regional centres in the province.  

    Significance:

    This pediatric outpatient rehabilitation pilot program represents a significant step towards enhancing access to rehabilitation services for pediatric patients who do not require an inpatient admission, but still require timely or short bursts of intensive therapy. We also anticipate that the program will reduce wait times and increase access and eligibility for rehabilitation. This in turn will improve patients’ long term functional and health outcomes.

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  • Cynthia Nguyen, jennifer stinson, Fiona Campbell, Kathryn Birnie, Raad Fadaak

    Background: The opioid crisis is affecting communities worldwide, making it crucial for healthcare professionals to have the necessary knowledge and tools to make informed decisions regarding the safe and effective use of opioids for pain management in children. The Online Pediatric Pain Curriculum (OPPC) was developed to educate pre-licensure students and entry level healthcare professionals about pediatric pain, and now needs to be updated and enhanced, to provide the knowledge and tools necessary to help address this crisis.

     

    Objective: Develop two educational modules to support the safe and effective use of opioids in children for both acute and chronic pain using a co-design approach

     

    Methodology: These modules are being developed by the SickKids Pain Centre with Solutions for Kids in Pain (SKIP), a knowledge mobilization network in Canada. The goal is to have modules that can be completed in 25 minutes or less and provide comprehensive knowledge to help address gaps for effective, safe, and equitable prescribing and use of opioids for pain in children and youth. We will describe a patient-centered approach that emphasizes the importance of involving patient partners and caregivers in co-creation of these modules with clinicians. Authors will include kids/caregivers living with pain, interprofessional experts, who will use and equity lens in developing best practices for marginalized populations, ensuring that the information provided is culturally responsive and inclusive. The opioid modules will cover the benefits, risks, and harms of using opioids for pediatric pain, as well as important principles of pain assessment and treatment. They will use different clinical examples and showcase various treatment options. Healthcare experts will review both modules to ensure accuracy and alignment with best practices.

     

    Conclusions: These modules will not only improve pain management for children but also may play an important role in addressing pain as an upstream factor in the opioid crisis. The comprehensive, culturally responsive, and patient-centered approach emphasized in development of these modules will support healthcare professionals in providing equitable care to all children experiencing pain.

     

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  • Rita Janke, Dr. Michael Smith

    Background/Objectives

    Nearly one million children live in British Columbia. Achieving the best possible health and wellbeing is the goal of care providers and leaders who support children and their families Child Health BC(CHBC) is a provincial health improvement network that brings together BC child and youth leaders to promote shared learning, innovation and quality improvement, and to deliver a more integrated system of care. In 2019, CHBC partners identified a need to establish structures and processes to support transformative quality improvement using a Rapid Learning Health System approach. One of the identified objectives is to develop a core set of valid and relevant quality measures to support health system evaluation and quality improvement.

    Description

    CHBC and its partners have designed and implemented a multi-phased approach to develop the BC child core set of quality measures:

    1. Identification of 5 priority focus areas using a modified-Delphi consensus approach: Mental Health, Asthma, Children with Health Complexity, Diabetes and Patient Safety.
    2. Identification of potential indicators linked to the 5 focus areas using a detailed review of the medical literature and quality measure data bases.
    3. Selection of quality measures for each focus area:
      1. Discussion with patients/families and care providers to understand potential gaps in care delivery.
      2. Expert partner survey and group discussion to prioritize relevant areas and select top representative quality measures, using a modified Delphi approach.
      3. Broad provincial partner, including patient partner, survey and discussion to prioritize five core quality measures against three relevance criteria: representative of a quality problem, value to intended audience and actionable.
    4. Implementation through refining the measures for consistency and testing data collection feasibility and developing processes for provincial data sharing, analysis, interpretation and reporting.

    To date, quality measures have been selected and are being implemented for Mental Health and Asthma. Early provincial data results are highlighting areas for system wide improvement.

    Significance

    Measurement is a key component of advancing health care quality, allowing for meaningful comparisons across institutions and providers to drive improvement. Although the development of pediatric specific quality measures has intensified, it has not kept pace with quality measures applicable to adults. The use of formal methods such as Delphi, can be successfully applied to select measures within highly complex systems. The involvement of patient partners in measure selection has contributed to more meaningful identification of measures that reflect patient and family voices. The BC core set of pediatric quality measures is acting as a foundation to support greater transparency across the system and engagement in mutually beneficial shared learning conversations to improve the quality of care.

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  • Carmina Gogal, Brendan Lai, Erik Skarsgard, Matthias Görges

    Background/Objectives: Surgical site infection (SSI) is an important patient-centric outcome resulting in an increased risk of morbidity and mortality, pain, and hospital resource utilization. Preventative strategies to reduce this risk include preoperative skin cleansing, prophylactic antimicrobial coverage, and maintenance of perioperative normothermia. Professional practice and outcomes can be improved with data-driven performance feedback, which should be relevant, timely, and actionable. The Pediatric National Surgical Quality Improvement Program’s (P-NSQIP) clinical reviewers create compliance reports manually (Figure 1), which is effective but time-consuming, and neither easily shared nor timely. This project aims to develop an interactive dashboard for perioperative clinicians to improve compliance with their departmental SSI prevention strategies and share feedback efficiently to identify opportunities for quality improvement (QI) as part of a learning health system.

     

    Description: As a QI project, Article 2.5 of the Tri-Council Policy Statement waives the requirement for ethical review. BC Children’s Hospital routinely captures metrics relevant to SSI in their electronic medical record: a) preoperative bath/shampoo and appropriate application of preoperative 2% chlorhexidine gluconate wipes, b) antibiotic timing before surgical skin incision, and c) perioperative temperature measurement. These data can be combined with short- and long-term SSI outcome data from P-NSQIP.

     

    Dashboards are being iteratively co-designed with input from nursing, anesthesia, and surgical domain experts, starting Jan/2023. Initial designs were implemented in an institutional PowerBI services platform and shared with local surgical leaders for feedback in Apr/2023; data from Jan-Mar/2023 were available for visualization. The prototype SSI prevention dashboard contains the following components: 1) demographic and population overview (Figure 2); 2) relevant prevention strategy visualizations, initially covering optimal antibiotic timing, surgical site and preoperative skin cleaning (Figure 3); 3) run charts of performance metrics over time; and 4) filtered views to explore the dataset to identify opportunities for further QI.

     

    Significance:  We have designed and deployed preliminary prototypes of dynamic dashboards for perioperative clinicians to review institutional SSI prevention strategies as part of a learning health system. Further iterative design and automation of data extraction, linking, and usability testing of the design prototypes are required. Once the interactive dashboard is live, we will improve reporting frequency and expect incremental improvement in compliance with SSI prevention strategies. This digital innovation encourages direct clinician interaction with patient-level data, including patient risk factors, SSI occurrence, and compliance with SSI prevention measures. It has the potential to drive continuous QI opportunities.

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  • Angie Ip, Jamie Hack, Marilyn Noort, Megan Harold, Claire Chadwick, Anne Marie Richardson

    Background

    Currently, Northern Health Authority has the longest waitlist for an Autism Assessment of any Health Authority in BC due in part to workforce capacity challenges and geographic barriers. Moreover, many children, youth and families in NHA experience long wait times for an initial referral to the British Columbia Autism Assessment Network (BCAAN), due to wait times for both family physicians and pediatricians. While family physicians and pediatricians are often limited in NHA, BCAAN recognizes that allied health professionals, including Speech-Language Pathologists (SLPs) provide significant support to children, youth and families and often are the first point of contact for families with concerns about their child’s development.

    Description

    BCAAN is undertaking two innovative initiatives aimed at providing earlier referrals and assessments for children and youth through increasing the role of SLPs. Firstly, BCAAN has undertaken a pilot project with the Centre for Ability to allow SLPs to refer directly to the BCAAN waitlist, without the need for a pediatrician’s referral. This pilot has significantly decreased referral wait times for children seen by the SLPs, who do not have ready access to a pediatrician. Secondly, BCAAN has begun a pilot program to allow SLPs to support a BCAAN assessment, in tandem with a pediatrician. In this pilot, SLPs complete the standardized autism assessment tools, which take approximately 2 hours, while the developmental pediatrician completes only the medical and developmental exam. This allows for a robust assessment, while minimizing the input of pediatrician time.

    Significance

     To date, over 20 children have been assessed by an SLP at the Center for Ability, and one SLP is being trained in Northern Health Authority. Moreover, SLPs have begun referring directly to BCAAN, and have provided high quality referrals that allow appropriate triaging of those children. Collectively, these two pilot programs will expand the BCAAN work force, increase community capacity and, ultimately, will allow families to receive the support they need earlier and within their own communities.  SLPs, and other allied health professionals, are highly knowledgeable professionals who, when empowered, can provide excellent insight on the referral and assessment of children with ASD symptoms.

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  • Mila Arnautovitch, Claire Seaton, Melissa Fleck, Chelsea Leishman, Zahra Mamdani

    Dr. Mila Arnautovitch, Dr. Claire Seaton, Kristen Law, Melissa Fleck, Chelsea Leishman, Zahra Mamdani, Dr. Marie Wright

     

    Background/ Objective:

    At BC Children’s Hospital, patients dependent on home respiratory support via tracheostomy or non-invasive ventilation (HTV) are routinely admitted to the Pediatric Intensive Care Unit (PICU), regardless of their stability, complexity, and care needs. Between 2018 and 2020, an average of 13 elective PICU admissions per year, equating to 162 bed days, were recorded for HTV patients. Considering the limited access to PICU beds in the province, it has become a priority to find a non-PICU model of care for these patients. With the goal of providing the right care, in the right place, at the right time, we aimed to transition 80% of appropriate HTV patients to the care of pediatricians on an inpatient ward within 6 months of implementing a new model of care

     

    Description :

    A multidisciplinary needs assessment was carried out to determine knowledge and policy gaps.  Three quarters of surveyed ward-based pediatricians and residents reported feeling ill-equipped to care for HTV patients. Significant gaps were identified in nursing respiratory care skills, as well as in policies and procedures outside of PICU.  A multidisciplinary committee was formed to facilitate collaboration between teams including general and specialist pediatricians and allied health professionals, PICU, respiratory therapy, operational leadership, and professional practice. 

    Multi-modal education workshops were provided to physicians and nurses to address knowledge and skill gaps. A supplementary HTV handbook for medical staff is currently being created. 

    Patient Needs Assessment tool was created to provide guidance outlining the most appropriate admission unit for HTV patients, depending on their care needs. Tested through two tabletop sessions, the tool is now implemented as a hospital policy. 

    Outcome measures include number of HTV admissions on the ward and saved PICU bed days. Process measures include average length of stay, reasons for delayed ward admissions, and patient and provider satisfaction. As balancing measures, critical events including PICU readmissions are being tracked using real-time audit tools and Patient Safety and Learning System reporting.  

     

    Since December 2022, ward-appropriate HTV patients have been admitted to inpatient wards.  As of May 2023, 29 patients on non-invasive ventilation and 8 with tracheostomy have been admitted to the ward, already translating to 262 saved PICU bed days.  No serious adverse events have been reported. Monthly case review meetings are underway to address issues arising from this new model of care. Informal feedback from families and healthcare providers (HCP) has been overwhelmingly positive, and formal satisfaction and knowledge surveys are now being conducted.

     

    Significance:

    We have successfully mobilized a multidisciplinary team to ensure the smooth transition of care for a highly complex group of medical patients from our PICU to the ward.   Within a short time, this new care model has significantly impacted PICU bed utilization and increased patient and HCP satisfaction.  We have demonstrated how leadership and clinical  teams can work together to create meaningful change that benefits complex patients with substantial medical needs.  This model for change can be applied by other sites across Canada to increase ward-based care for HTV patients, and highlights a successful approach to system transformation within healthcare in general.

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  • Andrea Moir, Dr. Mor Cohen-Eilig, Dr. Ram Mishaal, Carol Lai, Chetna Jetha

    Background: In past years, research has shown parental dissatisfaction with the experience of receiving a cerebral palsy (CP) diagnosis for their child. Subsequent studies aimed to understand parent and provider perspectives on this diagnosis disclosure events, however few supplied recommendations on how to improve it. Furthermore, there is evidence showing an early diagnosis of CP is important for physical and emotional well-being of patients and their families, as prompt intervention improves long-term outcomes.

    In November 2021, the CP Early Diagnosis Clinic (CPEDC) was launched at Sunny Hill Health Centre, BC Children’s Hospital (BCCH) with the aim to implement a standardized CP diagnosis pathway in BC that is developed by the American Academy of Cerebral Palsy and Development Medicine. To optimize our clinical services, we have applied the Plan-Do-Study-Act (PDSA) framework for quality improvement purposes.

    This project aims to pinpoint the strengths and weaknesses of the CP diagnostic process and interpret the diagnostic experience of families at the CPEDC, in comparison to the families who received the CP diagnosis prior to the establishment of the CPEDC. The information collected will be used to formulate recommendations to improve the experience of receiving a CP diagnosis for families. The responses will be implanted in the clinical workflow and will dictate future changes in the diagnosis discussions, as part of the next PDSA cycle.

    Description: Two groups of participants will be recruited via email:  1) parents of patients who were diagnosed at the CPEDC and 2) parents of patients who were diagnosed by one of the CPEDC physicians, but prior to the establishment of the CPEDC. This design allows us to compare how the clinic’s services, which are based on the most recent evidence regarding early diagnosis principles, are being received compared to previous practices. The initial email will include a cover letter and link to the survey for parents to complete should they consent. Through the survey, we will collect qualitative and quantitative data regarding the families’ experiences and opinions of the CP diagnosis process. On the survey, parents can indicate whether they consent to being contacted over the phone for a follow-up interview to elucidate more details about their responses. We will use thematic analysis to summarize the data.  

    Significance: This project represents a pilot cohort that will have a significant impact on future changes in the CP Early Diagnosis Clinic. The effectiveness of such changes will be monitored via long-term administration of the MPOC-20, a validated questionnaire rating how family-centred parents perceive their child’s health care to be. Should the clinic modifications be successful, as deemed by increasing scores on the MPOC-20 over time, then they may be applicable to other clinics who would like to adopt a family-centred approach.

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  • Raveena Garcha, Leeann Taylor , Mahmoud Mitha, Jennifer Begg, Mark Chilvers

    Background/Objectives
    BC is a province of over 1,000,000km2, providing high quality family centred care close to home is a significant challenge. Since the early 2000’s Child Health BC (CHBC), in partnership with BC Children’s Hospital (BCCH) and regional health authorities (RHA) has worked to deliver this. Supported by donor funding, a coordinated, provincial in-person outreach service for 14 BCCH pediatric subspecialty, ambulatory outreach clinics over 20 sites in BC and the Yukon has been implemented. Through this service, children and families are able to access subspecialty care from BCCH - the only quaternary level specialty pediatric centre in the province, without making a trip to Vancouver.

    While CHBC has supported operational and financial functions of these services, it does not have operational oversight and accountability of the clinics. There are also non-CHBC supported BCCH subspecialty services that provide outreach and connect with RHAs for planning and service delivery, which has led to variation in planning, delivery and management of these services. To improve coordination of care for children BCCH will transition the management of the CHBC outreach program back into its operations by April 2024.

    The transition will take a two-phased approach. The first phase involves replacing current CHBC donor funding with ongoing BCCH operational funding, and transitioning service delivery management and accountability from CHBC to BCCH clinical operations. The second phase involves further strengthening service planning, evaluation, communication and administration for all BCCH outreach services, building upon existing processes. 

    Description

    The transition provides an opportunity to develop a centralized, streamlined, coordinated and inclusive subspeicality outreach service model which maximizes the operational expertise and mandate of BCCH, complemented with the system planning and evaluation expertise provided by CHBC.

    CHBC is well positioned to (1) gather provincial data to inform decisions for more equitable services and where to add new subspeciality clinics, (2) assess current referral pathways to inform planning discussions, (3) provide provincial outreach program evaluation, and (4) promote and facilitate provincial innovation and quality improvement. BCCH would then: (1) determine the model of care for outreach clinics, (2) work directly witH RHA's to schedule outreach clinics and operational requirements, and (3) take over financial management of all outreach services.

    Working collaboraitvely with each regional health authority, BCCH and CHBC will continue to meet regularly with each RHA pediatric operational and medical leads to establish annual outreach plans for BCCH outreach subspecialities. To properly guide and inform the process, an advisory committee, consisting of BCCH and CHBC program leaders, physician leaders, and Indigenous health leaders, will provide program input and strategic direction over the course of the transition and future development. 

    Significance

    The transition provides an opportunity to develop an equitable, streamlined subspecialty outreach service model to ensure all children have access to comprehensive care, as close to home as possible. A move toward a standard, system-level approach would allow for programs to pool resources, follow standardized operating procedures, and allow province wide evaluations. As a result, this would lead to efficiencies in service delivery, an improved understanding of how limited resources are distributed and most importantly, better patient outcomes.

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  • Laura Bowman, Jean Hammond, Kari Renahan, Ivona Novak, Laura Thompson, Anna Oh

     

    Background/Objectives: Client- and family-centred (CFC) care is both an ethos and a practice that is valued and promoted by healthcare organizations across Canada. At Holland Bloorview Kids Rehabilitation Hospital, we view CFC as an essential element in evidence-informed care, given that building programs that do not consider the lived experience and realities of clients and families cannot result in outcomes that will be sustainable in their everyday lives. Yet the practice and expectation surrounding CFC is continually evolving. 

    Through this study, we explored the collaboration between a clinical team and Family Advisory Committee to co-design a meaningful resource for clients, families, clinicians, and system partners using a Human-Centred Design approach. The context was creating a resource for the transition to a meaningful adult life for youth with disabilities in Ontario, Canada. The study investigated how the team collaborated to meaningfully integrate diverse needs and goals into a common project with shared leadership.

     

    Description:  We conducted a qualitative exploration of a community-based participatory, Human-Centred Design process for creating meaningful change in the lives of youth with disabilities and their families as they transition to adult lives. Data included archival review of relevant materials, observation of design sessions and planning meetings, and interviews with multiple participants with different roles in the design process.

    The results of this project allowed for deeper understanding of what facilitated meaningful collaboration for this team. Elements that supported meaningful collaboration include organizational and system-level support for client and family leadership, a structure to facilitate the design process, the meaningful inclusion of client and family voice as central to the planning and facilitation process, and the suspension of expectations of assumed meaningful outcomes. 

     

    Significance: Client, patient, and family centred care are desired, promised, and attempted by many Canadian institutions. Yet meaningful inclusion of lived experience in the co-design of new initiatives and resources is not always clearly and intentionally operationalized. This study provides experiences and recommendations from clients and clinicians for collaborating in ways that allow for meaningful and impactful change through a process that offers decentralized leadership  shared across contributors. To be successful, such initiatives require commitment and determination on the part of individual clients, families, and service providers, and also support at an organizational level.

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  • Sherri Adams, Julia Orkin, Blossom G. Dharmaraj, Madison Beatty, Clara Moore

    Background

    Given the nature of their child’s underlying condition, parents of children with medical complexity (CMC) are relied upon to act as the primary care coordinator for their child. Tools like a care map have been shown to be effective in supporting patients and families, however, the use of an online care map that can be edited in real time has not been used and evaluated.

     

    Objectives

    The aims of this study were to: 1) determine the requirements and design features of a co-created online platform supporting care map creation, 2) use the platform for the development of a shareable standardized parent created care map, and 3) explore the utility and feasibility of an online care map from multiple perspectives including (i) parents, (ii) health care providers (HCPs), and (iii) Non-HCPs.

     

    Methods

    This qualitative study utilized interpretive description. Purposive sampling guided participant selection. In phase 1, the requirements and design features for a care map creation tool situated in an online patient and family facing platform were identified through semi-structured interviews with parents and HCPs/non-HCPs of CMC. This data was used to co-create the care map feature. In phase 2, parents used this online platform to create, update, and share care maps. Semi-structured interviews with parents and HCPs/non-HCPs of CMC were conducted to explore care map creation and utility.

     

    Results

    In phase 1, thirty-two interviews with parents (n=16) and HCPs/non-HCPs (n=16) were conducted. Four primary themes related to the requirements and design features for an online care map were identified and included: 1) useful features, 2) suggestions, 3) sharing, and 4) future use, which informed development of the online tool. In phase 2, thirty-six parents were onboarded to the online platform with n=25 (69%) choosing to create a care map. Semi-structured interview data with parents (n=15) and HCPs/non-HCPs (n=13) demonstrated four primary themes to inform the future use of online care maps: 1) clinical usage of care maps, 2) benefits of use, 3) challenges for usage, and 4) suggestions to improve usability.

     

    Conclusion

    Parents have valuable feedback informing the co-creation of an online platform to create and share care maps. Parents reported uncertainty in the clinical usage of care maps, however, HCPs found them very informative. Further research is needed to understand the importance of education and clarity of roles in the use of a care map for clinical care of CMC.

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  • Josie Kearney, Catherine Bosyj, Genevieve Ferguson, Victoria Rombos, Melanie Penner

    Background: Autism Spectrum Disorders (autism) are a group of lifelong neurodevelopmental disorders affecting social and behavioural functioning. Although autism is highly prevalent, no single care centre has a sufficient number of patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research, thus limiting patient outcome improvement. Learning health networks (LHNs) offer a promising solution to improve the quality and efficiency of healthcare by integrating clinical and research data and facilitating continuous learning. The Autism Care Network (ACNet) is a LHN composed of more than 20 clinics across North America, dedicated to developing the most effective approach to care for autistic children and adolescents. In Canada, autistic patients receive the vast majority of their ongoing medical care in the community. Therefore, to make meaningful improvements in the continuum of care for patients, it is essential that the ACNet be extended to include community providers.

    Objectives:

    1. Understand the current data collection practices, learning needs, capacity, and overall interest of community providers in participating in an autism LHN

    2. Identify community providers’ perspectives on the benefits and disadvantages of participating in a LHN and ways in which their engagement and interest in a LHN can be cultivated

    Description: In-depth structured interviews were conducted with 13 community physicians in Ontario. Interpretive phenomenological analysis identified 5 primary themes: (1) “Navigating Administrative Challenges,” which highlighted the barriers that impact providers’ ability to provide optimal care and potentially participate in a LHN; (2) “Improving Data Collection Practices”, which emphasized that most providers do not have a consistent way of collecting information from patients and are seeking a comprehensive standardized tool; (3) “Increasing Provider Confidence and Competence,” which explored the challenges of navigating the everchanging landscape of autism care as an individual community provider; (4) “Breaking Down Silos”, which focused on fragmented care and the lack of communication between various aspects of the healthcare system; and (5) “Barriers in the Healthcare System”, which explored the systemic barriers that exist for both physicians and families and ultimately impact equitable and best practice autism care in the community.

    Significance: This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of autism care provision in the community. Overall, these findings suggest that LHNs can address several of the important issues highlighted by community providers. The challenges are essential to acknowledge when developing a plan to successfully extend the ACNet and ultimately to improve care provision for autistic children and adolescents.

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  • Stephanie Harding, Karina Fan, Maria Franco, Pallavi Patel, Stephanie Harding

    Objective

    Recent data were collected from nurses who have completed Association of periOperative Registered Nurses (AORN) Periop 101 training in BC Children’s Hospital operating room (OR). Results were analyzed to ensure effective program delivery to stabilize staffing within the department and increase access to pediatric surgical care. 

     

    Background: In 2016, an observed nursing shortage in the OR led to multiple challenges impacting children and families’ access to surgical care across the province. BC Children’s OR leadership team implemented the Periop 101 program, incorporating pediatric considerations to educate staff caring for the population the hospital serves.

     

    Description: The training program delivers foundational theory via online modules, skills labs and clinical practicum. The program is 23 weeks – 8 weeks spent with the educators learning basic foundational knowledge and 15 weeks of clinical practicum learning foundational skills. A total of 19 online post-evaluations were sent to nurses who completed the program from 2021 to 2023. Verbal and written feedback were also collected and grouped into themes.

     

    Significance:  

    AORN Program Orientation and Transition Shock

    11 complete surveys were received. The educators identified themes from the responses and aligned the information with the Transition Framework by Duchscher & Windey (2018).

     

     

    Figure 1: Transition Theory and AORN Program Orientation

     

    Creating a psychologically safe learning environment: 

    All 11 nurses agreed the educators created a psychologically safe, supportive learning environment and were effective communicators. One noted it was a “safe space to ask questions and practice hands-on learning”. Another mentioned the “educators made sure to communicate the most important information is conveyed” effectively, despite “a lot of information being thrown at” them.  

     

    Consistent preceptorship

    Several comments addressed the clinical consolidation phase during preceptorship. Some suggested more consistent preceptors, while others mentioned more time with educators would be beneficial during the rotation. The transition theory elaborates on ways to bend the transition shock, including check-ins that are now incorporated into the program. (Duchscher & Windey, 2018)

     

    Check-ins 

    The need for continuous support was identified during the preceptorship phase, resulting in additional check-ins being structured and scheduled. This includes a midway check-in, a final check-in, and a 3-month post check-in with the educators. This supports nursing fellows’ transition from one learning phase to the next.  

     

    Teaching Tools and Learning Styles

    Although most of the responses expressed the current teaching/learning styles being delivered are sufficient, teaching tools are consistently evaluated and updated by OR educators to create effective delivery and sustainability of the program. 

    To further enhance AORN program content, lesson plans, clinical observations, validation tools, skills checklists, and foundational competency tools are used. 

    In conclusion, BC Children’s OR continues to sustain hiring with its ability to initiate, implement, and redesign the specialty training program. The program has led many other adult and pediatric centers across Canada to reach out to the department for insights, teaching tools and lessons learned.

     

    References

    • Duchscher, J. & Windey, M. (2018). Stages of transition and transition shock. Journal for nurses in professional development, 34(4), p 228-232

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  • Stelios Georgiades, Elyse Rosa, Alessia Greco, Brittany Bekiaris, Jennifer Kennedy, Karen Beattie, Holly Augerman, Karen Margallo, Jeremy Petch

    Authors: Rosa, E., Greco, A., Bekiaris, B., Kennedy, J., Beattie, K., Margallo, K., Augerman, H., Petch, J., Georgiades, S., and the Pediatric LHS for NDD Study Team

    Background/Objectives:

    A Learning Health System (LHS) is one in which science, informatics, incentives, and culture are aligned for continuous improvement, innovation and promotion of best practices for various stakeholders. The Pediatric LHS for Neurodevelopment (NDD) is a collaborative co-design project between McMaster University and Hamilton Health Sciences. A keystone project is being designed, implemented and evaluated within the Ron Joyce Children’s Health Centre (RJCHC), which will inform the creation, utility and effectiveness of a Pan-Canadian LHS/Network for NDD. 

     

    Description:

    The purpose of the Pediatric LHS for NDD project is ultimately to break down the many silos that currently exist and hinder optimal healthcare for children with diverse needs.  The pilot will focus on children/youth 0-12 years receiving care at RJCHC. This work emphasizes collaboration, co-design and concurrent evaluation throughout the development of a system focused on efficiencies that are cost-effective, improve provider experience and most importantly, are patient-centered. The evaluation of this system will be guided by the Quintuple Aim Framework for healthcare improvement, which focuses on five main domains: Population Health, User Experience, Provider Experience, Cost and Equity. This evaluation framework will promote continuous improvement in an adaptable and scalable system. A schematic and overview of the pilot family journey, in addition to the linkage of the family journey with critical data collection points, to evaluate the LHS during its implementation will be presented.  Further, steps that will be taken to ensure the pilot project can function as a prototype for implementation across other patient care and pediatric centres across Canada will be discussed.

     

    Significance:

    This project has the capacity to change the way children receive healthcare in our country. Many silos currently exist, which impede optimal care for children, especially those with diverse and complex needs. This work emphasizes collaboration, co-design and evaluation throughout its development to focus on finding efficiencies that are cost effective, improve provider and user experience. The early focus on concurrent evaluation is unique, and vital to the project's success. Ongoing evaluation will enable an iterative loop of continuous improvement, drive positive outcomes and inform high-quality healthcare services. We are committed to ensuring adequate resources and capacity to successfully implement the LHS model in our healthcare system beyond the pilot. We will maintain national dialogue with key stakeholders and continue with the goal of implementing the Pediatric LHS for NDD across all pediatric hospitals in Canada. By taking a collaborative and co-design approach and utilizing existing healthcare infrastructure, this project will effectively breakdown siloed care and change the healthcare of children and their families. 

     

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  • Amanda Higgins, Christine Cassidy, Jacklynn Pidduck

    Background: Transition of care is the process in which youth transfer their health care from pediatric to adult health care systems. Currently, there is very little done to standardize the transition of care, which can result in poor health outcomes for youth. Families transitioning from pediatric to adult care require support to encourage independence and confidence in their youth to take control of their own care. The You’re in Charge (YIC) program at IWK Health builds self-management capacity among youth and their families through goal setting, education, and peer-led activities. However, there is a need to develop an evaluation plan for the YIC program to monitor and evaluate its utility and impact on patient and health system outcomes. 

    Methods: The objective of the study was to co-design an evaluation toolkit for IWK Health’s YIC Program. We used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) Framework as an overarching evaluation framework. A co-design workshop was held with the YIC coordinator, Transition of Care (TOC) coordinator, and members of the TOC Committee (youth, parents, and health care providers) to co-design components of the evaluation toolkit. This was followed by a think-aloud exercise with four YIC participants (2 youth, 2 parents/caregivers) to test the usability of the evaluation toolkit. 

    Results: A multi-component evaluation toolkit was co-designed for the YIC program to use for ongoing evaluation. This included an evaluation survey for youth and caregiver participants, facilitators, and administration. Areas of focus for the evaluation were self-management goals, skills, and trust in the resources provided to them.

    Patient Partner Reflection: Being able to lead my own study was a result of the capacity building that took place when I was the lead patient partner on a qualitative study done on the youth, caregiver, and health care provider perspectives on the barriers and facilitators for transition. Moving from being a lead patient partner, to running my own study on a program I am involved with as a peer facilitator, and now mentoring new patient partners in studies evolving from the one I was the lead on has encouraged me to pursue health research as a career. The team support was unique and the collaborative approach was instrumental to how I have flourished as a patient partner and researcher. 

    Conclusion: This study provided a valuable resource for continued use beyond the project's end date. By working in a collaborative research approach with the YIC Program Coordinator and TOC Committee, the evaluation toolkit was more relevant and useful to meet the needs of the IWK Health team to use for ongoing evaluation and sustainability of the program.   

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  • Amanda Higgins, Christine Cassidy, Jacklynn Pidduck

    Background: Transition of care is the process in which youth transfer their health care from pediatric to adult health care systems. Currently, there is very little done to standardize transition of care, which can result in poor health outcomes for youth. Families transitioning from pediatric to adult care require support to encourage independence and confidence in their youth to take control of their own care. The You’re in Charge (YIC) program at IWK Health builds self-management capacity among youth and their families through goal setting, education, and peer-led activities. However, there is a need to develop an evaluation plan for the YIC program to monitor and evaluate its utility and impact on patient and health system outcomes. 

    Methods: The objective of the study was to co-design an evaluation toolkit for IWK Health’s YIC Program. We used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) Framework as an overarching evaluation framework. A co-design workshop was held with the YIC coordinator, Transition of Care (TOC) coordinator, and members of the TOC Committee (youth, parents, and health care providers) to co-design components of the evaluation toolkit. This was followed by a think-aloud exercise with four YIC participants (2 youth, 2 parents/caregivers) to test the usability of the evaluation toolkit. 

    Results: A multi-component evaluation toolkit was co-designed for the YIC program to use for on-going evaluation. This included an evaluation survey for youth and caregiver participants, facilitators, and administration. Areas of focus for the evaluation were self-management goals, skills, and trust in the resources provided to them.

    Patient Partner Reflection: Being able to lead my own study was a result of the capacity building that took place when I was the lead patient partner on a qualitative study done on the youth, caregiver and health care provider perspectives on the barriers and facilitators for transition. Moving from being a lead patient partner, to running my own study on a program I am involved with as a peer facilitator, and now mentoring new patient partners in studies evolving from the one I was the lead on has encouraged me to pursue health research as a career. The team support was unique and the collaborative approach was instrumental to how I have flourished as a patient partner and researcher. 

    Conclusion: This study provided a valuable resource for continued use beyond the projects end date. By working in a collaborative research approach with the YIC Program Coordinator and TOC Committee, the evaluation toolkit was more relevant and useful to meet the needs of the IWK Health team to use for ongoing evaluation and sustainability of the program.   

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  • Sasha Litwin, Jocelyne Copeland, Vina Mohabir, Lindsay Clarke, Jennifer Tyrell, Caleb Tait, Fiona Campbell

    Background/Objectives: The purpose of this study was to co-design paediatric procedure rooms to minimize[CT1] [LC2]  the perception and experience of procedural pain. Using a Human-Centered Design approach, children, caregivers, and healthcare providers (HCPs) participated in co-design activities to inform the future build of new outpatient spaces in a tertiary hospital’s capital redevelopment plan. This poster will share the key findings from the study, including:

    • the design principles that emerged from the study to build spaces that support the psychological, physical, and pharmacological interventions known to minimize pain for children
    • how Human-Centered Design can be used to support the co-design of spaces in healthcare settings

    Description: The study demonstrated how Human-Centered Design (HCD) can be applied in healthcare to gather input from a diverse group of participants to generate actionable insights about the design of treatment room spaces in a tertiary-level paediatric hospital, to minimize procedural pain for children.

    Pain from medical procedures can be a traumatic part of children’s experience in healthcare settings (Dewan et al., 2023Trottier et al., 2019). In pediatric outpatient settings, painful procedures are common for a variety of reasons, such as diagnostic testing, vaccination, blood draws, and minor surgical procedures. Such procedures are necessary for the prevention and treatment of disease and trauma but can cause anxiety, pain, and distress.

    Poorly managed procedural pain has short- and long-term consequences, such as increased fear about future healthcare interactions and ongoing cycles of procedural distress (Kennedy et al., 2008Shave et al., 2018). Anxiety and fear related to procedural pain can often be prevented or largely reduced. However, many evidence-based interventions, tools, and methods to reduce procedural pain and fear remain underutilized in the pediatric population (Bice et al., 2014Jiang, 2020Young, 2005). The importance of the built environment and its proven ability to have a positive influence on patients’ health outcomes, specifically by reducing pain, anxiety, and stress is often underappreciated (Laursen et al., 2014).

    Data was collected through semi-structured interviews, ethnographic observations, and co-design workshops and synthesized using content analysis. Participants were invited to share their experiences, ideate, and create low fidelity protypes of procedure room spaces. Seven themes were identified through this analysis and used to generate recommendations for the design of procedure rooms to reduce anxiety and pain related to procedures:

    1. Control: Patients, caregivers, and HCPs need to be able to control features in the physical environment.
    2. Privacy: Spaces must be designed with features to help patients feel safe, secure, and respected during procedures.​​​​​​
    3. Evidence-based pain-reduction and distraction methods: Positive distraction tools available for all patients. Distractions must be age appropriate and flexible to suit individual needs.
    4. Sensory environment: Patients and healthcare providers should be able to modify sensory stimuli in the room.
    5. Human factors organization of the space and equipment: Rooms must enable the seamless flow of people and storage of equipment.
    6. Equitable spatial design: Create a space that is inclusive for all patients and families.
    7. The journey: The experience of a medical procedure begins prior to arriving at the hospital.

    Each theme has practical design recommendations that can be used by the hospital’s capital redevelopment team when designing future procedure room spaces. While some recommendations may be cost-prohibited, many are no or low-cost interventions that center around giving back children and caregivers a sense of control over their experience.

    Significance: The recommendations that emerged through this study can be used by other healthcare settings when considering redesigning clinical spaces. While this study focused on outpatient treatment spaces, many of the design principles are generalizable to other clinical spaces, however, they would require validation. Designing intentional spaces using the recommendations presented in this poster has the potential to reduce procedural pain and the associated psychological impacts on children. This is especially critical for children living with chronic illnesses given they will require frequent interactions with the healthcare system.

    HCD also has the potential to reduce development costs in capital redevelopment projects, by involving users of the spaces in the design process we can prevent costly mistakes and rework that can happen when spaces are built without a deep understanding of how the spaces are perceived and experienced by end users.

    This study has demonstrated how Human-Centered Design can be applied in a healthcare setting to engage stakeholders in a creative process to inform the design of clinical spaces. The involvement of patients, caregivers, and HCPs in co-designing spaces can result in more efficient, safer, and intentionally designed care environments and ultimately lead to a more positive patient experience

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  • Kimberly Miller, Debbie Field, Erin Klein, Gillian Backlin, Sarah Ong, Salina Sachedina , Kala Brownlee, John Jacob, Glegg Stephanie

    Background: The new Child Development and Rehabilitation InfoSource (CDRInfoSource) website (www.cdrinfosource.ca) was created in partnership with BC Children’s Hospital Digital Lab and intended users to support knowledge translation and informed decision-making by our clients, families/caregivers, clinicians and others working with children and youth with neurodiversity and/or disability in British Columbia.  Families/caregivers, youth, and clinicians participated in co-designing the website through interactive human-centred design workshops, surveys, and iterative consultations with advisory groups and targeted users (e.g. Indigenous health navigators). Users wanted credible, evidence-informed child development and rehabilitation resources, and service and support information on an easy to navigate customizable platform. The resulting CDRInfoSource has over 1500 curated resources, multiple search functions, including a machine algorithm search bar, and enables users to create an account to save favourite resources/searches.

    Objective:  Evaluate initial user experience and gather feedback to refine the design and functionality of the new CDRInfoSource website.

     

    Description:  A purposeful sample of 11 users including a youth with neurodiversity, two families/caregivers, 6 allied health clinicians, a health literacy expert and a health system navigation researcher participated in a recorded Zoom user experience session. Users shared their thoughts (concurrent think aloud methodology) as they used the search functions, created an account and saved favourite resources. Semi-structured follow up questions explored the acceptability and usability of the website. Session recordings were reviewed to note how the user interacted with website functions (e.g. where they clicked first to search). 

    Eight of 11 users agreed the website was easy to use and found the information they were looking for (8/11), while three users (family member, clinician and researcher) had greater difficulty navigating and finding information.  Users appreciated the ease of creating accounts to save favourite resources/searches.

    User feedback informed design changes and user guides (short videos, helpful tips) to support navigation and searching. Optimization is ongoing for key word searching algorithms.  Website development is an iterative process and feedback will continue to shape development and content through an online user survey accompanying public launch of CDRInfoSource in June 2023.

    Significance: Users told us they needed credible, easy to access, understandable information to facilitate navigating a complex healthcare system and to support them in making informed decisions. Our approach to co-designing the CDRInfosource with intended users can inform other organizations who wish to use electronic platforms such as websites as an extension of services and supports for clients, families/caregivers, and community service providers.

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  • Jill Dosso, Anna Riminchan, Julie Robillard

    Background: Child Life Specialists (CLSs) are certified experts on child development who provide psychosocial support, play-based interventions, and patient education to children and families before and during vaccines, blood draws, medical imaging, assessments, and other medical events. These services can reduce children’s anxiety, improve compliance with procedures, support medication adherence, reduce the need for anesthesia, and ultimately reduce hospital costs (Boles et al., 2020; Claridge et al., 2020; Durand et al. 2015).

    Description: In this work, we use an instrument co-designed with a team of CLS practitioners to capture detailed descriptions of CLS activities at BC Children’s Hospital from three perspectives: the CLS, a parent, and the child receiving support. After a clinical encounter, the CLS and family (parents and child ages 6-18) are invited to complete anonymized but linked online surveys about their experiences. CLSs complete the validated Children’s Emotional Manifestation Scale, as well as rate the children’s cooperation with the CLS intervention and the speed at which the child returned to their baseline after the procedure. Children and parents complete satisfaction ratings about the experience and their expectations, and parents are asked about how equipped they felt to support their child going forward. Data collection is ongoing, but pilot data show that children receiving CLS support actively participate with the CLS, return to their baseline quickly after procedures, indicate that their CLS was able to support them, and report that their time at the hospital went better than they thought, e.g., “getting stitches wasn’t as scary as I thought it would be.” Parents were mixed on whether or not they felt more equipped to support their child in the future but reported that CLSs were able to support them and made statements like, “It made a big difference that there was someone there to make sure my child understood what was happening and make a plan with him instead of for him.”

    Significance: In sum, this work will provide a multi-dimensional description of the impact of Child Life Specialists at BC Children’s Hospital, with direct implications for clinical practice and hospital policy.

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  • Emily Schaeffer, Jacqueline Li , Alaric Aroojis, Kevin Shea, Kishore Mulpuri

    Background/Objectives: In India and other Global South countries, developmental dysplasia of the hip (DDH) is often diagnosed after walking age, leading to more invasive surgeries and long-term disability. DDH care pathways aim to enhance early detection and must be tailored to meet a country’s needs and diverse practice settings. We describe a multi-phase methodology for context-specifc DDH care pathway development, demonstrating its use in India.

    Description: In Phase I, Orthopaedic surgeons, Pediatricians/Neonatologists, and Radiologists in India were surveyed regarding DDH screening. Seven relevant Indian organizations partnered together and assembled a multidisciplinary working group, which then met fortnightly to establish an evidence base and prepare for the subsequent consensus-building phase. During Phase II, panelists participated in a modifed Delphi process to reach consensus on a list of DDH screening statements. Phase III applied the statements to develop the care pathway.

    The Delphi process concluded after a preliminary survey and two Delphi rounds, reaching consensus on 47 statements, which were condensed into 35. The developed care pathway for India features periodic clinical hip examinations integrated with the country’s immunization schedule and selective imaging screening, providing fexibility in the timing and modality of imaging.

    Significance: In Global South countries, there is a need for DDH care pathways specifc to local contexts. Successful care pathway development requires accounting for cultural diferences in healthcare and strategies to facilitate engagement and to address country-specifc barriers. This methodology was feasible in India and can be applied to other conditions and/ or countries wishing to establish care pathways.

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  • Vanessa Fong

    Families play a crucial role in providing care for their children with medical complexity (MC) outside of the hospital. While many studies have focused on the social and emotional impact of caregiving in families of children with MC, less research has examined the financial impact. Even fewer studies have explored the impact of maternal underemployment and out-of-pocket expenses on families of children with MC. A poor understanding of this impact may inadvertently shift financial burden from the healthcare system to families and women in particular. Thus, the current study collected longitudinal interview and diary entry data to address the following objectives: 1) Examine families’ average monthly out-of-pocket costs and 2) Explore the impact of maternal underemployment and out-of-pocket costs on families. Nineteen mothers residing with their children with MC (age 0 to 18 years) in British Columbia were recruited using purposive sampling. Results indicated that families spend a significant amount of out-of-pocket funds on their children’s dental care, prescription and non-prescription medications, medical equipment, supplies, diet, travel costs, and therapies. Maternal underemployment and out-of-pocket costs were found to impact families by contributing to: 1) financial hardship and 2) strain on their mental health and well-being. Mothers often reported having to quit their jobs or reduce their hours in order to care for their children which contributed to financial hardship in the family. This created additional stress and worry for families negatively impacting their mental health and well-being. Out-of-pocket costs were reported to accumulate over time and were especially challenging for single income families and families of children with high level needs. Policymakers and health service providers must be aware of and consider the financial burden placed on families of children with MC in particular the underemployment of women in this population. Policies must ensure adequate coverage and funding that address the broad spectrum of their needs.

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  • Kimberly Courtney, Mairead Green

    Title Embedding Family Engagement in Research (FER) into your institution

     

    Background/Objective

    Family engagement in research is growing in popularity, yet many institutions struggle to achieve the cultural shift necessary to make this practice successful. Engagement in research can provide patient-oriented research goals, increase accessibility of research to patients, and increase participation and retention rates in studies. Here we describe how CHEO Research Institute has been able to create an environment where patient perspectives in research are not only respected, but expected.

     

    Methods/Timeline

    Process measures:

    In 2018 The RI build family engagement into the strategic plan and went on to hire a CHEO parent to develop the program and build out the recruitment.

     

    By 2020 the program took shape. It was based on the model at Holland Bloorview, but adjusted to our acute care setting. 50 family leaders were recruited, and this number has remained stable since that time.

     

    52 Family leaders enrolled in the program in 2022

     

    Levels of engagement: The initial role of family leaders was to review writing for internal grants for our Research Growth Awards twice per year. These reviews are single points in time with a written exchange between the reviewer and applicant. The reviews have been captured via Redcap. Since 2020, 108 Clinical and 24 Basic Review requests have been actioned. The Family leader program then provided 1-2 family reviews for each request submitted.

     

    This internal review process continues, and additional grants have been added. We now require family review for the Research Growth, Research Coordinator, and Research Trainee Awards as well as the new Quality Improvement Knowledge Translation, and Implementation Award.

     

    In addition, levels of engagement have risen. We now have many family leaders acting as advisors. We define an advisor as an active research team member, who provides feedback and input from their lived experience perspective throughout the research process.  

     

    8 advisors in 2020, 18 in 2021 and 33 in 2023

     

    The last branch of our program is our RI Family Patient Advisory Committee (PFAC). This committee includes research staff and family leaders. Together this group provides live consults every month to Cheo research teams. Many credit their visit as a contributor to their success with grant funding,  improved recruiting and improved knowledge mobilization. 

     

    46 visits to the PFAC since Feb 2019

     

     

    Diversity of our family leaders –The program seeks diverse experiences and lived experiences which represent the broader CHEO population while recruiting. By using family-to family-referrals, clinic staff referrals, and social media campaigns for specific lived experiences we seek to ensure the full breadth of the CHEO community is represented in our program.

     

    Significance 

    Outcome measures: As we increase the number of family leaders acting as advisors within research teams’ further evaluations are needed. Currently, we use a Redcap survey tool as a check-in with Family Leaders mid-project. Yet adopting PEIRS or another evaluation tool will be an important next step. Further education and guidance are needed as research partnerships evolve.

     

    Balancing measures: Adding the family leader review to our internal grant process did add an additional step for grant applications that are successful in reaching the full application stage. Working closely with the grants office we have refined our application form and process with direct feedback from family leaders and research staff. Carefully planning ensures that family leaders have 2 weeks to complete their review and still provide 1 week for applicants to read feedback, make changes and write a written response to the family leader.

     

    Results

    Increase in levels of engagement

    Increased requests for family advisors

    Refined practices for internal grants

    Greater awareness and requests for live consults provided by RI Family Patient Advisory Committee (PFAC)

    Educational documents currently being developed and distributed

     

    Conclusion

    Family engagement in research can be embedded into the culture of an institution. As we reflect on our program and the lessons learned, we seek to share these insights with other groups seeking to increase their partnering in research.

     

    About the Authors: 

    Both are from Ottawa, Ontario

    Mairead Green is a former CHEO patient and current member of the Cheo Research Institute Family Leader Program. Mairead serves on the Research Family Patient Advisory Committee, provides family reviews and previously volunteered as the youth advisor on The Canadian Paediatric Hospital Care Priority Setting Partnership. She currently works as a summer student at CHEO RI. 

     

    Kimberly Courtney kcourtney@cheo.on.ca  is a current CHEO parent and also the coordinator of the CHEO Research Institute Family Leader Program. She also holds a part-time clinical role as a CHEO as a Child Life Specialist (submitted abstract & contact person).

     

    Kim is able to present the poster in person if the abstract is selected. Mairead may also be able to attend depending on her school courses and funds available at the RI for travel.

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  • Mariana Veiga, Ananya Chawla, Susan Poitras

    Background/Objectives:

    The journey of improving pediatric pain care at BC Children's Hospital (BCCH) has been facilitated by applying the ChildKind quality improvement framework in order to achieve ChildKind International certification. Addressing pediatric pain care is of utmost importance!

    In 2019, a 5-year data retrieval for incidences of pain and comfort as an adverse outcome from the Patient Safety Learning System (PSLS), which monitors adverse events, near misses and hazards related to patient care, was conducted. The aim was to establish a current state of reported pain events and identify trends and issues with pain management at BCCH. This inquiry indicated that tracking and monitoring pain-related events was challenging, with categories, and results, scattered throughout the database without a means to provide efficient and timely monitoring. In response, there was a need for a tool that could effectively monitor patient safety incidents related to pain and discomfort in order to guide the improvement of pain care practices at BCCH.

    Description:

    Through collaboration with the PSLS team, a mandatory question about pain and discomfort ("Was pain and/or discomfort a factor in the event?") was inserted in the generic PSLS form for BCCH in August 2020. When users identify pain and/or discomfort as a factor related to any safety event, the user is prompted to describe how the pain and/or discomfort contributed to the event or affected patient care. From September 2020 – January 2023, there were a total of 549 identified pain-related incidents reported on PSLS. Following the successful adoption of the pain question in the generic report form and follow-up forms for BCCH and BC Women's Hospital NICU, the mandatory pain question was added to the report forms for BC Children's Mental Health, Surgical Services, Sunnyhill, and Medical Imaging. A follow-up question about procedures is a recent addition to the PSLS system and is a mandatory pain inquiry with all PSLS events. This helps track, monitor and identify the procedures that may require resources and support for quality improvements.

    Significance:

    Pain is now considered an adverse event, which makes pain care a cultural standard for the organization. Tracking and trending PSLS data on pain related incidents has supported targeted implementation of comfort approaches in areas that conduct procedures where pain incidence is high, for example, in the Emergency Department, Outpatient Laboratory, and Medical Imaging Department. As pain care education strategies, application of comfort approaches and overall pain-management improve, it is expected that PSLS incidents related to unmanaged pain will decrease. We are now able to allocate resources, evaluate improvement in pain care and champion for funding to improve the quality of care at BC Children's Hospital.

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  • Dayle McCauley, Lin Li, Alice Soper, Alison Luke, Jan Willem Gorter

    Background:

    Youth with chronic health conditions are known to experience gaps in care and unmet healthcare needs when they leave the pediatric system. To address the challenges youth face in transitioning to adult healthcare, a patchwork of programs, services, and resources have been implemented across Canada. The Transition Hub (the “Hub”), a pan-Canadian network of stakeholders (youth, families, researchers, clinicians), aims to improve the transition to adult healthcare on a national level. In a priority setting activity, the Hub identified that an environmental scan was needed to better understand what services are available and what gaps exist in supporting the transition to adult healthcare in Canada.

     

    The objectives of the environmental scan were: 1) to identify the scope of existing transition programs, services, and resources across Canada; and 2) to identify key gaps in the transition to adult healthcare.

     

    Description:

    This multi-method study used: 1) surveys to collect basic program information; and 2) semi-structured interviews to explore strengths, barriers, gaps, and strategies for improvement. The Hub was used as the primary method to recruit participants who were knowledgeable about transition services within their organizations.

     

    Fifty participants completed a survey and 23 participants completed an interview. The surveys reported on 45 programs and 3 resources from nine Canadian provinces. Most transition programs were in outpatient (72.3%) and hospital-based (66%) settings. Transition services were collaborative (e.g. overlap in care), client-centred (e.g. goal setting), or group-based (e.g. mentorship). Program outcomes included youth knowledge and autonomy, physical and mental health, and life skills.

     

    Many programs considered a successful transition to be multi-faceted, requiring a holistic and lifespan approach. Communication, collaboration, and multi-level support were identified as key program strengths. Major practice and research gaps included dedicated transition champions, quality indicators, and evaluation of the long-term effectiveness of transition programs and services. Patient and family stories can serve as a powerful driver for change, as well as framing transition as a health equity issue to garner support from the broader society. In addition to intrinsic motivators, external drivers are essential, such as standards of care, financial resources and incentives, and institutional accreditation.

     

    Significance

    This environmental scan consolidates program information, reported strengths, and lessons learned from a broad range of transition services across Canada. Results offer an opportunity to leverage collective expertise and wisdom to inform evidence-based advancements in transition services. Results will inform the strategic direction of the Hub by highlighting key gaps and opportunities for improvement, as well as contribute to the development of improved transition programs, services, and resources.

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  • Stacey Miller, Caitlyn Siu, Kishore Mulpuri, Ram Mishaal

    Background & Objectives: The underlying etiology of cerebral palsy (CP) is highly varied and, at times, unknown. Advances in genetic testing have resulted in the discovery of genetic variants in individuals with CP. The aim of this study was to identify the etiology of CP in a cohort of children and determine the prevalence of known genetic diagnoses.

    Description:  All children in the Canadian province of British Columbia (BC) enrolled in a population based hip surveillance program for children with CP, the largest database of children with CP in the province, who were enrolled from program inception (September 2015) June 2020 were included in the review.  

    In this retrospective study, data related to diagnosis, Gross Motor Function Classification System (GMFCS) level, and motor distribution were exported from the program’s database. Chart notes from the province’s only tertiary children’s hospital and imaging completed within the province were reviewed to confirm a diagnosis and etiology of CP. When a CP diagnosis or etiology were not clear in the chart, a developmental pediatrician/neurologist confirmed or rejected the diagnosis and the most responsible etiology. Results were categorized by etiology and summarized using descriptive statistics.

    Data from 959 children enrolled in the hip surveillance program were reviewed with 847 (88%); (58% male) confirmed to have CP. At review, the mean age of the cohort was 9yr, 7mo (SD 4yrs5mo) with GMFCS levels I to V: 188, 219, 91, 188, 161. Motor distribution was bilateral for 75.1% and unilateral for 24.6%. Ten etiological categories were developed; 134 (16%) could not be categorized as etiology was unknown or limited data was available. Periventricular leukomalacia and/or intraventricular hemorrhage was the most common etiology (27%), followed by the identification of a genetic diagnosis (18%): 135 (16%) had a genetic etiology plus 20 (2%) of the 55 (6%) children with cerebral malformation had a genetic cause. Of those, 96% had a bilateral motor impairment and 61% were GMFCS levels IV and V. A vascular etiology was identified in 112 (13%) cases; most of these children had unilateral motor distribution (80%) and GMFCS levels I or II (86%). Peri- or neonatal HIE was identified in 102 (12%) cases with most being bilaterally affected (92%) and at levels IV and V (63%). Remaining categories included acquired brain injury (3%), pre-natal infection (2%), post-natal infection (2%), kernicterus (<1%) and mixed/other (2%).

    Signficance: The etiologies of CP in this cohort of children was highly varied. While over a quarter of the patients had PVL or IVH, known genetic etiologies, as a group, were the second most common with over 18% of those reviewed having positive genetic findings. There is growing evidence that this may only represent the tip of the iceberg, and farther search for genetic causes, even in the presence of another “clear” etiology, may be warranted.

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  • Stacey Miller, Ceilidh Matthews, Jeffrey Bone, Jennifer Farr, Kishore Mulpuri

    Background and Objectives:

    While risk associated with plain radiographs is low, efforts to limit lifetime radiation exposure are warranted. To reduce radiation exposure, x-rays completed for other purposes may be utilized for hip surveillance when the hips and pelvis are visible. This study aimed to evaluate hip positioning in alternate x-rays and whether migration percentage (MP) measured from alternative images is consistent with MP measured on AP pelvis radiographs.

     

    Description: 

    Children enrolled in a province population-based hip surveillance program who 1) had an alternate x-ray, defined as a non-AP pelvis radiograph that showed the hips and pelvis, and 2) had an AP pelvis taken prior to or after the alternate x-ray. All participant data up until Janaury 2021 were reviewed.

     

    Radiographic data, including type and date of x-ray, MP, and acceptability of the imaging, as measured by degree of hip adduction/abduction from neutral and interforaminal ratio (IFR), were exported from the program’s database. Alternate x-rays were included if an AP pelvis radiograph was taken before or after the alternate image. The mean difference in MP and standard deviation (SD) of the difference were calculated between the two images; influence of GMFCS level and time between images were evaluated. Agreement was measured using Bland-Altman plots and summarized with the average difference and the 95% confidence interval (CI).

     

    In total, 50 alternate x-rays were reviewed: 34 abdominal x-rays, 8 standing hips to ankle x-rays, and 8 scoliosis images. Images were from children at GMFCS levels I to V (1, 7, 3, 11, 28) at a mean age of 9yrs, 0mo (SD 4.0, range 1yr1mo to 16yrs2 mo). There were 69 AP pelvis x-rays used for comparison. Hip abd/adduction was categorized as acceptable or borderline (≤ 12 degrees from neutral) in 49% of the alternate x-rays and 80% of the AP pelvis x-rays; it could not be assessed in 26% of alternate x-rays and 3% of AP pelvis x-rays. IFR was acceptable (0.5-2.0) in 80% of alternative x-rays and 97% of AP pelvis radiographs; IFR could not be measured in 12% of alternate x-rays and <1% AP pelvis x-rays. The overall mean difference for MPs measured on 146 hips was -0.26 (SD 7.27). Bland Altman analysis found a mean difference of -0.26% (95% CI = -1.4, 0.9) with lower and upper limits of agreement being - 4.5% (-16.5, -12.5) and 14% (12, 16).  

     

    Conclusions & Significance: Positioning of non-AP pelvis radiographs was acceptable less than 50% of the time but MP values were consistent between the x-rays. High limits of agreement suggest not all images provide accurate measures of MP. The use of alternate radiographs can be appropriate for monitoring hip displacement while reducing lifetime radiation exposure and its associated risks and decreasing caregiver burden associated with repeated imaging.

     

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  • Sean Duke, David Wensley , Jenna Treissman, Shannon Freeman, John Pawlovich, Salima Somani

    Background/Objectives:

    Children living in rural, remote, and Indigenous communities have reduced access to pediatric care due to the low number of local pediatricians1,2 Factors accounting for this shortage in rural communities include increased call burden, lack of specialized allied health support, and challenges in recruitment and retention3. To improve access to pediatric care during the COVID-19 epidemic the Rural Coordination Center of BC (RCCbc) developed the Child Health Advice in Real-time, Electronically (CHARLiE) pathway. This supports rural healthcare providers with 24/7 pediatricians available by videoconference to review cases, help with care coordination, facilitate simulation scenarios, and provide other forms of assistance tailored to the needs of rural providers5. Since its inception on July 1st, 2020, CHARLiE has supported more than 75 rural communities in BC.

     

    Terrace, BC is the referral center for the Northwest of the province, a vast catchment area comprising approximately 73,000 patients6. Historically, a small group of pediatricians in Terrace and a single pediatrician in Prince Rupert have shared the on-call burden for the Northwest. However, in the fall of 2020, Terrace’s pediatric service was reduced to just two pediatricians.  A local pediatrician reached out to the CHARLiE team to propose a temporary solution including CHARLiE into the first call rotation for Terrace and Prince Rupert when there was no local pediatrician available7. As of September 2020, CHARLiE has quite literally “answered the call”, covering at least 25% of the pediatric calls.

     

    Description

    The purpose of this quality improvement project is to formally evaluate the integration of CHARLiE into the pediatric call rotation in Terrace by describing the experiences of healthcare providers in the Northwest. Using a Quality Improvement Framework (SQUIRE 2.0)8, this study employed surveys and focus groups to collect the perspectives of rural healthcare providers including registered nurses, nurse practitioners, midwives, family physicians, emergency physicians, pediatricians, medical trainees and other allied healthcare professionals.  Qualitative data was analyzed to derive patterns, themes and explanatory narratives to understand the successes and challenges of implementing CHARLiE into the first call rotation in Terrace.  We will present the key takeaways from this evaluation which describe the role of CHARLiE and other RTVS pathways to enhance access to specialist services for remote communities.

     

    Significance

    While a full complement of on-the-ground Pediatricians remains the ultimate goal for the region, a complex set of barriers currently preventing this necessitates the optimization of virtual supports such as CHARLiE. This quality improvement project aims to assess the effect and improve upon CHARLiE in its current role in the on-call rotation in Northwestern BC. 

     

    References

    1.         Amram O, Schuurman N, Pike I, Friger M, Yanchar NL. Assessing access to paediatric trauma centres in Canada, and the impact of the golden hour on length of stay at the hospital: an observational study. BMJ Open [Internet]. 2016 Jan 1 [cited 2022 Dec 16];6(1):e010274. Available from: https://bmjopen.bmj.com/content/6/1/e010274

    2.         Petrosyan M, Guner YS, Emami CN, Ford HR. Disparities in the Delivery of Pediatric Trauma Care. J Trauma Acute Care Surg [Internet]. 2009 Aug [cited 2022 Dec 16];67(2):S114. Available from: https://journals.lww.com/jtrauma/Abstract/2009/08001/Disparities_in_the_Delivery_of_Pediatric_Trauma.14.aspx

    3.         Miller K, Benny A, Retallack J. Supporting consulting paediatrics in rural, remote, or vulnerable communities in British Columbia: Time for national collaboration. Paediatr Child Health [Internet]. 2021 Jul 26 [cited 2022 Dec 16];26(8):451–5. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8711695/

    4.         Rural Coordination Center of BC. RTVS CHARLiE [Internet]. Real-Time Virtual Support (RTVS). [cited 2022 Dec 16]. Available from: https://rccbc.ca/initiatives/rtvs/charlie/

    5.         Rural Coordination Center of BC. Sustaining Pediatrics in Rural & Underserved Communities [Internet]. Initiatives/Spruce. [cited 2022 Dec 16]. Available from: https://rccbc.ca/initiatives/spruce/

    6.  Statistics Canada.  Census Profile, 2021 Census of Population. [Internet].  Profile Table: Northwest Health Service Delivery Area, British Columbia. [cited 2023 May 8].  Available from: https://www12.statcan.gc.ca/census-recensement/2021/dp-pd/prof/details/page.cfm?Lang=E&SearchText=Northwest%20Health%20Service%20Delivery%20Area&DGUIDlist=2022A00075951&GENDERlist=1,2,3&STATISTIClist=1,4&HEADERlist=0

    7.         Rural Coordination Center of BC. Proposal for CHARLiE RTVS - First Call for Northwest Pediatric On-call Schedule. 2020. 

    8.         SQUIRE | SQUIRE 2.0 Guidelines [Internet]. [cited 2022 Dec 19]. Available from: http://squire-statement.org/index.cfm?fuseaction=Page.ViewPage&pageId=471

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  • Elyse Rosa, Natalie Easson, Kate Jamieson, Patrick McPhee, Jean-Eric Tarride, Olaf Kraus De Camargo , Shauna Kingsnorth, Dorothy Harvey, Hunt Carolyn, Stelios Georgiades

    Background/Objectives:

    There is growing interest in Canada for increased virtual care provision to improve patient access to quality care, and while the utilization of virtual care services for children has increased substantially in recent years, especially in light of the COVID-19 pandemic, an evaluation of this modality of care for children in Ontario has been lacking. Our team led an external evaluation of virtual care services offered by organizations across Ontario, which focused on the processes and outcomes of a variety of virtual care services provided to children and families by Children’s Treatment Centres and other organizations across the province. The results of this evaluation address a key knowledge gap in our understanding of the provision of virtual care services for children and their families. This evaluation was informed by the Quintuple Aim Framework which focuses on five domains: Population Health, User Experience, Provider Experience, Cost and Equity. 

     

    Description:

    Our evaluation of virtual care services utilized a cross-sectional design, and data were collected during an unprecedented uptake in virtual care services. Data were collected from three unique study populations: 1) Organizations: 44 organizations that provided virtual care spanning across the province participated; 2) Service Providers: 194 service providers with various specialties participated; and 3) Parents/Caregivers: 909 parents/caregivers of children who have received virtual care in Ontario participated. Each of these populations completed unique online (self-reported) questionnaires to aid in the evaluation of virtual care services offered in the province.  The data collected from these groups, that will be summarized during our presentation, allowed for interpretation of the status of virtual care services that are presently offered to children in Ontario, and identification of potential ways to enhance both program and service delivery.

     

    Significance:

    This work represents an unbiased, broad-scope evaluation of a variety of virtual care services offered to children across Ontario and reveals consistent findings that virtual care is not one-size fits all.  This work provides clear consensus on the types of services, and aspects of care, that are not as compatible with a virtual setting compared to others. This work summarizes that while virtual care circumvents several barriers to accessing in-person care, unique barriers to this modality of care need careful consideration moving forward. Further, this evaluation highlights agreement between those providing care and those receiving it, that a hybrid approach to future care for children would be optimal, regardless of service type/child’s needs. A targeted approach to providing specific aspects of care virtually, within specialities, as outlined in this report can inform the allocation of virtual care resources across the province, to ensure its provision remains equitable and cost effective. 

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  • Allyson Gallant, Janet Curran, Jeanna Parsons Leigh, Scott Halperin, Audrey Steenbeek

    Background/Objectives: School-based immunization programs (SBIP) offer equitable access to routine vaccines for adolescent students. COVID-19 public health measures affected three school years, and with the shifts between in-person, online and hybrid learning during these years, SBIP experienced significant disruptions to service delivery. The objectives of this study were to explore stakeholders’ perceptions of SBIP and changes as a result of the COVID-19 pandemic, and how the pandemic affect parents’ and adolescent students’ vaccine hesitancy.

     

    Description: Semi-structured interviews were conducted with English-speaking stakeholders, including parent-student dyads, healthcare providers (HCP), health officials and teachers across Nova Scotia, New Brunswick and Prince Edward Island, between February-June 2023. Interview guides were informed by findings from literature reviews and an environmental scan. Data was analyzed using the Theoretical Domains Framework, with participant quotes mapped to relevant domains by two trained coders. Quotes associated with each domain were then reviewed to identify key barriers and enablers to SBIP.

     

    Participants (n=38) identified a range of factors affecting SBIP service delivery and vaccine decision making. Findings indicate relationships between HCP- school staff could be a barrier or enabler to SBIP, especially as additional resources have been required from schools to run the programs during the pandemic. Moving to an e-consent form was considered a facilitator across parents, HCP and school stakeholders to streamline SBIP procedures leading up to clinics and improve consent form return rates. There was a strong desire across stakeholder groups to expand SBIP programming to offer a Meningitis B vaccine. Students highlighted wanting more information and resources targeted to them about the vaccines they were being offered. Parents and students experiencing complex health and social needs felt they needed to be proactive and reach out to public health to determine how to catch-up on missed vaccinations. Parents and students also felt the pandemic did not affect their vaccination views, although a sense of ‘vaccine fatigue’ was noted among participants. The number of COVID-19 vaccine doses given to adolescent students helped decrease anxiety experienced around SBIP and vaccinations.

     

    Significance: While SBIP offer an equitable and convenient way for students to receive routine vaccinations, the pandemic and catch-up programming may have missed more vulnerable families. Continued efforts are needed to ensure SBIP and catch-up programming remains accessible to all students, and students have the opportunity to catch up on any missed vaccines before graduation. Updating SBIP to include e-consent forms and Meningitis B vaccines, and information targeted to students, may help improve service delivery, uptake of routine vaccinations, and improve health outcomes among adolescents across the Canadian Maritimes.

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  • Bryn Zomar, Kishore Mulpuri, Emily Schaeffer

    Title:

    Examining the short-term natural history of developmental dysplasia of the hip in infancy: A systematic review

     

    Authors:

    Bryn O Zomar1,2, Kishore Mulpuri1,2, Emily K Schaeffer1,2

     

    1Department of Orthopaedics, University of British Columbia, Vancouver, Canada

    2Department of Orthopaedic Surgery, BC Children’s Hospital, Vancouver, Canada

     

    Background/Objectives:

    This study was an update on the American Academy of Orthopaedic Surgeons (AAOS) clinical practice guideline’s analysis of the natural history of developmental dysplasia of the hip (DDH). The objective was to delineate the natural history of clinical instability or radiologic abnormalities of the hip in infants by identifying the proportion of cases that resolved without treatment compared to cases that progressed and/or required treatment.

     

    Description:

    We performed a literature search of PUBMED to identify studies which evaluated the natural history of DDH. We used the same search strategy as that utilized in the previous AAOS guidelines, updated to include articles published between September 2013 and May 2021. We assessed the quality of included articles using the Oxford Centre for Evidence-Based Medicine level of evidence and reported study demographics and outcomes using summary statistics.

     

    Twenty-four articles met our eligibility criteria. Most included studies were retrospective (14/24), investigated either the incidence of DDH (8/24) or assessed screening programs (7/24). The most prevalent study population followed were Graf 2A hips (7/24). Most studies were low quality with level of evidence 3 (13/24) or 4 (7/24). Sample sizes ranged from 9 to 3251. Twenty studies reported the number of cases resolved over the follow-up period with a mean rate of 84.3% (95% confidence interval 76.1, 92.6).

     

    Significance:

    We found that most mild-to-moderate DDH can resolve without treatment in early infancy. This may especially be the case in physiologically immature (Graf 2A) or radiologically dysplastic hips. High level evidence generated by prospective studies will be required to fully understand which hips are safe to monitor without treatment. Identifying which hips may not need treatment could lead to changes in practice potentially reducing overtreatment without increasing the risk of missed or late diagnoses.

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  • Anna Weir, Jason Marchand, Parker Mills

    Children’s Healthcare Canada: Transitions Pop-Up Poster Fair

    Critical Care Outreach Nurse

    Presentation Format: Poster

    Contact: Anna Weir    

    Email: anna.weir@cw.bc.ca      Phone: 604-875-2133 (PICU) ext 4450

    Poster Presenters: Jason Marchand (jason.marchand@cw.bc.ca), Parker Mills (parker.mills@cw.bc.ca), Tanessa McGladdery (tmcgladdery@cw.bc.ca), Anna Weir (anna.weir@cw.bc.ca)

    Abstract Title: Expanding Critical Care services beyond the PICU walls: Implementation of a nurse-led critical care outreach service at BC Children’s Hospital.

    Background/Objectives:  As the pediatric tertiary centre for the province, BC Children’s Hospital (BCCH) is mandated to provide support and education to staff as they care for deteriorating patients outside of the Pediatric Intensive Care Unit (PICU), both within BCCH and across the province. Unless a Code Blue was called, a PICU consult or PTN call was initiated, there was no avenue to seek early critical care support. Therefore, a nurse-led initiative that collaborates with staff, patients and families through a critical care lens was created. The Critical Care Outreach Nurse (CCON) team has 4 overarching goals: to foster relationships and increase access to critical care resources, to collaborate and build capacity amongst providers, to provide standardized PICU follow-up, and to support staff in assessment and stabilization of deteriorating patients.

    Description:  The CCON team went live in May 2021 with four nurses covering 1200-2400hrs, 7 days a week.  After collecting baseline metrics and performing inpatient needs assessments, the CCON team created a group charter, engaged stakeholders in proposed changes, and sought feedback from clinicians, patients, and families.  This group developed standards for their response, documentation, and data collection.  We would like to share our data collection methods, results, challenges, lessons learned, and team integration strategies both internally and externally.  Using the RedCap database the CCON team collects objective data about each CCON encounter. Subjective data was also collected through staff, patient, and family surveys.  In response to the unprecedented respiratory surge the CCON service saw an increase in provincial support calls.  It has been challenging to maintain coverage with four nurses, navigate inconsistent policies and protocols, create capacity, and support the 2022/2023 respiratory surge.  We have integrated the team provincially by being involved in the Child Health BC project, presenting our service to the various health authorities, and disseminating CCON info posters to external sites.  The CCON service has also seen as increase in new consults within BCCH.  We have integrated our team by supporting education initiations across the hospital, developing standards for CCON follow-up and documentation, and routinely identifying, evaluating, and modifying strategic priorities.  

    Significance: The aim of the Critical Care Outreach (CCON) service is to ensure staff, patients, and families have access to pediatric critical care support at BCCH and throughout BC with the goal of improving patient outcomes and family satisfaction across the continuum of care.  The response from staff at BCCH and clinicians throughout the province has been overwhelmingly positive.  Families transferred from critical care to the inpatient units cited the CCON team as a valued support during this transition.  Feedback was collated weekly during early implementation and changes were made organically.  Our ability to adapt to a rapidly changing environment has been instrumental to our success.  Patients and families remain at the center of the CCONs work. 

     

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  • Susannah Jenkins , Julie Herrington , Jane Manayathu Jones , Usha Chauhan, Julia Yole

    Background/Objectives:

    Health Care Transition (HCT) is a vulnerable time for adolescent and young adults (AYA) with chronic health conditions requiring a systematic approach for successful transfer of care. Canadian Pediatric Society (CPS) set core components of successful transition. In a large tertiary hospital in Hamilton, Ontario, HHS advanced practice (AP) practitioners completed a HCT survey comparing practices with CPS’s core components.

    Description

    The McMaster AP Transition Committee designed HCT survey aligning with CPS’s successful transition componentsSurvey sent to 118 HHS AP practitioners March 2022. Independent data analysis completed in survey monkey.

     

    50% response rate (59/118), 31/59 (53%) from 23 disciplines indicated transition was relevant.  Majority 27 (87%) worked full time; 22 (71%) in pediatrics.  Thirty (97%) were nurse practitioners (NP).  Most, 15 (48%) worked for <5 years.  After two respondents dropped off, 15/29 (52%) indicated a structured transition program.  Most started transition at age 14 (33%) or 15 (28%).  Seven (39%) discussed transition 3-4 times prior to transfer.  Multidisciplinary teams (MDT) included NP’s (73%), pediatric & adult physicians (67%), social workers (60%), nurses (53%) and dietitians (40%). Only 3 (20%) had transition coordinators/navigators. Ten (67%) had adult/pediatric physician combined appointments and 8 (53%) ensured adult appointments were booked. Transition readiness was assessed in 7 (47%) programs using Transition Q4.  Eleven (73%) saw youth independently. Patient education was provided on adherence (80%), self-management (67%) social issues (60%), goal setting (53%), cultural differences between adult/pediatrics (47%) and privacy (47%). Comprehensive transfer note was provided in 9 (60%) programs. Of 8 adult practitioners, 3 (37.5%) indicated systems to prevent follow-up losses. Time was the primary barrier to transitional care for 17/24 (71%). Additional barriers included no MDT support on adult side (33%), no adult provider receiving youth (29%), no administrative support (29%) and lack of knowledge (25%). Majority 17 (71%) had no formal education on transition; education needs included outcome measures (63%) and clinical practice guidelines (59%).

    Significance

    AP practitioners at HHS have indicated transitional care occurs predominantly in two CPS components of successful transition: 1) Starting transition early and 2) Providing support before transition3.  Few practitioners indicated activities in the remaining components: 1) Creating an individualized transition plan, 2) Ensuring ongoing support after transition to adult care3 . Current barriers to providing care include time, lack of support and education.  Our study had a limited sample of only AP practitioners.  In order to build transition capacity and networks, multidisciplinary teams, administrators and patients should be included in future samples for the most accurate description of transition practices at HHS.

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  • Alyssa Chong, Punit Virk, Quynh Doan

    Background/Objectives:

    A substantial number of pediatric inpatient, medical admissions may involve underlying psychosocial challenges. However, patients’ in-hospital care will focus on patients’ acute medical needs, despite growing evidence that holistic care incorporating patients’ broader psychosocial needs could improve physical health outcomes and health-related quality of life. Psychosocial assessment tools may facilitate clinicians’ ability to identify and address underlying mental health needs. Nonetheless, it remains unclear whether clinicians perceive these tools, and the clinical information they generate, as adding value to patient care planning. The current study explores clinicians’ perceptions and attitudes towards patient-reported psychosocial assessments and if/how clinicians use the assessment information in their own clinical decision-making and patient care planning process.

     

    Description:

    We conducted a cross-sectional survey sub-study, within a larger randomized control trial at BC Children’s Hospital, sampling from nine inpatient specialties: general paediatrics, cardiology, nephrology, neurology, endocrinology, gastroenterology, orthopaedic surgery, urology, and general surgery. The survey was designed, validated, and administered using the Modified Dilman’s approach. Automated reminders were sent to participants if they did not respond to the survey after completing the consent form. Qualitative and quantitative analyses of survey responses were conducted, summarizing proportions and counts of closed-ended responses and a content analysis of open-ended items.

    A total of 65 clinicians enrolled into our study (88% women, 85% nurses). Most clinicians (92%) found that patient-reported psychosocial assessment was beneficial for establishing patient-clinician relationships and providing information about the patient’s mental health that may not have been previously queried about. Of the clinicians who had read and used the MyHEARTSMAP screening report in their practice, a majority (84%) found it helpful for their patient care. Most clinicians felt that the MyHEARTSMAP screening report facilitated clinician-patient communication (87%) and patient involvement in the care process (90%). About half of the clinicians (52%) felt the screening report’s interface and design could be improved to allow for ease of use. Currently, the paper screening report is placed in the patients’ physical chart for clinicians to assess, but they would prefer it to be implemented onto the digital charting system used at BC Children’s Hospital. 

     

    Significance: 

    Psychosocial assessments were found to be acceptable by inpatient clinicians at BC Children’s Hospital and may be a promising strategy to integrate more holistical care within medical management. Subsequent work should explore how interface design, user experience, and technological capacity could reduce barriers for clinicians to engage with and integrate screening into their workflow.

     

     

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  • Stephanie Rohn, Dr. Mor Cohen-Eilig, Amber Pelletier

    Background: Swimming has been used for many years as an effective rehabilitation tool for children with a variety of disabilities. The natural buoyancy and resistance that water offers allows those with mobility limitations to move in ways that they are unable to achieve on land. There is also proven benefits to social development and self-esteem that come from participating in aquatic rehabilitation. Available literature on how to use swimming as a therapy varies greatly in the method of delivery, but has been shown to be effective in both an inpatient and outpatient setting. Unfortunately, existing interviews of occupational therapists and parents have noted varying personal and institutional factors that made it difficult to access swimming in the community.

    Objective: The objective of this study is to explore factors that facilitate or impede a family's decision to continue attending swimming sessions in the community once discharged from an inpatient aquatic rehabilitation setting. Our ultimate goal is to use this data to advocate for increased community supports and to identify areas that we can focus on during discharge planning to allow equitable access to swimming.

    Description of methods: This study will involve patients who were previously admitted to the Sunny Hill Health Centre at BC Children’s Hospital, Vancouver, British Columbia. These patients were all involved in rehabilitation with our aquatic therapists during their admission. All participants (n=30) included in this study are under the age of 18, with no restriction placed on demographic characteristics or diagnosis. Participants were contacted by our aquatic therapists to inform them about this study and obtain consent. A questionnaire eliciting parental experiences with inpatient and community-based swimming was designed using the F-words of childhood disability as a guiding model. This survey was virtually disseminated to the participating families. Qualitative and quantitative responses were collected and coded into themes based on the ICF framework to identify patterns in responses.

    Significance: The anticipated result of this study is to elicit responses that support identified barriers present in the literature. This includes personal factors (i.e. attitudes of immediate family members towards swimming), situational factors (i.e. noise of the pool deck, accessibility), and structural factors (i.e. lack of available lessons). The results of our study will add to existing research by working with a novel population that has already been introduced to swimming while in hospital. We will be able to identify reasons why families who previously found benefit are no longer able to continue, as well as identify facilitating factors that we can help promote on discharge. This will eventually allow for better patient care in our aquatic therapy program.

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  • Catie Johnson, Janet Curran, Jennifer Lane, Holly McCulloch, Ijeoma Staunton, Mwalu Peeters, Julie Clegg

    Background:

    Children with complex care needs represent a small, yet diverse portion of the pediatric population, that require more resources and services. During COVID-19, public health measures (PHMs) were implemented to protect the general population and the healthcare system. However, it is unclear how these measures impacted children with complex care needs and their families. The goal of this project was to map the range of public health policy and service changes during the COVID-19 pandemic that were relevant to children with complex care needs and their families in the Maritime provinces.

    Description: 

    We employed an integrated knowledge translation approach to conduct an environmental scan of provincial government news releases from Nova Scotia (NS), New Brunswick (NB), and Prince Edward Island (PEI) to map PHMs implemented between March 2020 and March 2022 that were related to COVID-19. We worked with our parent and policy maker partners to refine our search strategy and develop a coding scheme. The findings of this environmental scan were used to guide key informant (KI) interviews with policy makers and service delivery participants. Purposive sampling was used to recruit a diverse sample of decision makers and service providers from across the Maritime provinces in both the health and education sectors. Attention was given to KIs who worked with historically underrepresented populations to capture these perspectives. Semi-structured interviews were conducted via zoom with 24 KIs across the three sites. Thematic analysis was used to code the transcripts using a priori codes from the Ten Domains of Health framework.

    The environmental scan identified 2,813 sources. Few public health measures made specific reference to families with complex care needs, with the highest percentage of these references per province in PEI (3.3%), followed by NS (1.4%), then NB (0.4%). Our results highlight the lack of resources offered to this vulnerable population during this time of rapid change, despite children with complex care needs being at an increased risk during the pandemic. KI interviews highlighted barriers and enablers to public health measure design and implementation.

    Significance: 

    The COVID-19 pandemic resulted in rapid change in many sectors. Few resources were provided to children with complex care needs to assist with managing this change, furthering their vulnerability. The design of the current study allowed for thorough investigation of public health measures implemented during the COVID-19 via the environmental scan, which was then further investigated via decision maker and service provider interviews. This allowed individuals with unique perspectives to highlight and discuss both barriers and facilitators to PHM decision making and implementation. These findings can be used to inform future public health measure decision making and highlight areas where more support is needed for this population.

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  • Nicole Dendekker, Michelle Kregel, Andrea Andrade, Ana Suller-Marti

    Background/Objectives: Children with severe epilepsies are living longer which require adult clinics be ready to provide care. Parents of children with epilepsy have identified that seizures and their co-morbidities are a major concern in their children living independent lives. However, they face barriers and challenges transitioning into adult care. A specialized transition clinic with comprehensive care for complex medical conditions such as Drug Resistant Epilepsy (DRE) is ideal. In 2016, the Children’s Hospital, London Health Sciences Centre (LHSC) initiated a Comprehensive Epilepsy Clinic (CEC) within its epilepsy program to provide advanced diagnostics, and resources within a clinic setting for children with DRE. This clinic includes; epileptologists, nursing, social work, dietitian, and a community educator. The purpose of this project was to establish a combined pediatric/adult transition program into the CEC that could facilitate access for families of teenagers with DRE.

    Description: In 2019, a quality improvement project at Children’s Hospital was initiated to incorporate a combined transition program within the CEC. Stakeholders from the pediatric epilepsy team (Children’s Hospital), adult epilepsy team (LHSC), and transition services (Children’s Hospital) were identified. Information on transition was gathered from the literature and programs who were running transition services. There was scarce evidence on transition care within severe epilepsies. Teenagers who were 16 or older were referred to our Transition Navigator for discussions on social and financial matters and to help foster an appropriate level of independence as they move into adulthood. Teenagers and their caregiver would then also be seen within a combined Transition/CEC with an adult epileptologist who would be introduced by their pediatric counterpart and assume their care. The Transition Navigator would address further questions, connect to adult resources and provide transition readiness questionnaires at that time.

    Significance: A CEC model improves access to transition services in teenagers with DRE. This model ensures they have access to necessary medical, social and financial resources and the ability to stay connected to their community. Prior to this combined Transition/CEC there were no other comprehensive transition clinics for teenagers with severe epilepsies at Children’s Hospital, LHSC. Over the past 4 years there have been a total of 9 transition/CEC’s with 41 young adults. Among this cohort, multiple comorbidities were identified which include intellectual disability or learning delays 53% (n= 21), Autism Spectrum Disorder 17% (n=7), mood or behavioral conditions 34% (n=14) and cerebral palsy 7% (n=3). 29% (n=12) of patients have more than one comorbidity. Further research is needed to look at healthcare transition for teenagers with epilepsy to be able to provide the comprehensive care that is required for this complex condition.

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  • Laesa Kim, Susan Poitras, Beverley Pomeroy, Nadine Lusney

    Background/Objectives:

    The BC Ministry of Health, Canadian Institute for Healthcare Improvement, Patient Voices Network and other National/International governing bodies recognize patient partner participation as necessary at all levels of healthcare and a best-practice priority for quality improvement and patient experience. Canuck Place Children’s Hospice (CPCH), the pediatric palliative care program for British Columbia, is committed to collaborate and partner with children, youth, and families on the program by integrating their perspectives to improve the quality and safety of CPCH services, and programming. Pediatric palliative care improves quality of life, promotes comfort and reduces suffering for children with a serious illness and their families through a holistic patient centred approach that addresses physical, emotional, social and spiritual needs. Patient and family partner engagement is an explicit action of Person and Family Centred care, and by providing opportunities for this engagement to occur at all levels we model doing “with” the families we care for.

    Description:

    The Patient/Family Engagement Coalition (FEC) was created to co-develop and propose a Family Engagement Framework for CPCH. The coalition is comprised of family partners from across the province of BC, including patient/family members, clinical team members, operational members, and external members. Patient/family members make up almost half of the FEC and represent various lived experiences, demographics, cultures, and needs.

    The priority of the FEC is to collectively recommend the best practice and structure to support CPCH children, youth, and families to engage with opportunities to participate and inform the pediatric palliative care program. A comprehensive family engagement framework addresses communicating these opportunities to families, processes of support, structures to support equity and evaluation to ultimately enhance the experiences of all families receiving care at CPCH.

    Significance:

    The FEC at CPCH is an example of what patient partnerships can look like at more high-level planning, designing and decision-making processes within our healthcare systems. Engaging with families beyond surface level involvement, to collaborate and lead to inform and influence policy level structures within the systems that serve them, is a first of its kind in Canada. Additionally, this engagement occurred using an evidence-based trauma and resiliency informed principal approach, to ensure a safe and brave space for both the coalition itself and for the framework. Our members benefitted greatly from this approach with both clinicians and family partners modelling authentic, meaningful connection, shared vulnerability and by creating mutual purpose from this space. Collectively, we would hope to see more trauma and resiliency informed care across all areas of healthcare planning and delivery within Canada. 

     

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  • Kim Hesketh, Rachel Cansino, Kym Thomas, Nicole Young, Jo-Anne Desroches

    Background:

    In 2018 the Ontario provincial government transferred the responsibilities of School Based Rehabilitation Services in publicly funded schools to Children’s Treatment Centres.  As a result, Children’s Treatment Network (CTN) assumed the delivery of services in Simcoe County. The program inherited was a fee-for service model that provided a maximum number of visits per student regardless of severity of need. The  model of service required an individual assessment and often treatment outside of the classroom. The original model limited service timing, dosage and frequency.  It restricted capacity building and had an extensive waitlist.  This poster will outline how CTN, in partnership with Closing the Gap Healthcare (CTG), used implementation science to flip the script, transforming school-based OT and PT services in Simcoe County from using a standard number of visits for all referrals to a tiered model of service, enhancing adaptability and reducing waitlists.

     

    Description:

    Leveraging implementation science principles to guide the process, CTN and CTG championed a transformation for two prominent school boards in Simcoe County.  The objective was to shift from standard number of visits for all referrals to a tiered service model, aiming to enhance all students’ participation, promote inclusion, and build the capacity of educators to support all students.

    By employing the Knowledge to Action Cycle, we devised and implemented a tailored tiered model that aligned with our local context. To ensure successful implementation, we engaged in discussions at both the local and provincial levels to identify barriers and facilitators.  These encompassed a range of factors such as incentivizing therapists, fulfilling Ministry reporting requirements, addressing change fatigue, managing competing priorities, and more.  Based on these insights, we selected implementation strategies accordingly and introduced Tiered Based services to all English-speaking elementary schools in Simcoe County.  Outcomes for the new model include enhanced access to service, improved support for school staff, decreasing the need for urgent services, and the advancement of knowledge and resources for tiered approaches.   

    Our poster will outline our process for design and implementation as well as our evaluation framework and our year one outcomes.

     

    Significance:

    Children’s rehabilitation centres face ongoing challenges due to growing demands and limited funding, leading to inequity of services and lengthy waitlists.  In our ever-changing healthcare landscape, the utilization of implementation science strategies is crucial for achieving successful program transformation. By flipping the script on school-based rehabilitation services, we aim to showcase how successful model transformation can enhance services and reduce wait times, ultimately addressing the needs of children in a more efficient and equitable manner.

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  • Philip Dovey

    Title: Going to the Emergency Room: Examining Parents Decision-Making

    Background: In Canada, visits to emergency departments (ED) are on the rise, especially for young children. A consensus in the literature is that unnecessary pediatric ED visits contribute to overcrowding, increased health care costs and increased morbidity and mortality. The perception of the child's condition as urgent, easier access to the ED, trust in ED care, lack of confidence in treating their child at home, and low health literacy are common causes of non-urgent ED visits in the paediatric population. These deciding factors imply that readily available and comprehendible educational resources could lessen the frequency of paediatric ED visits and assist parents and carers in providing for their children at home. 

    Our objective is to investigate the educational needs of caregivers of children 0-5 years of age when making decisions to access emergency health care services. Specifically, we are focused on understanding the parent's knowledge and skills gaps, which if addressed would allow them to confidently care for their child with a minor illness at home.

    Description: Our poster will 1) highlight the extent of the challenges related to unnecessary ED visits in Canada and northern BC, and 2) Demonstrate the difficulty caregivers of young children have in finding, accessing and utilizing materials designed to support their decision making regarding accessing health care services versus caring for their sick child at home. We will present a comprehensive review of the literature sharing how dialogue with those in the United Kingdom who have been leading work in this area since 2011 can translate to northern BC.

    The significance: We recognise that parents are unlikely to delay going to the ED because they are concerned about the cost of the care. Therefore, one of the most important public health issues is improving our understanding of the factors that contribute to parent's decision-making when faced with gaps in their child-health-illness knowledge. Geographic variation in ED visits and subsequent emergency hospital admissions for infants needs to be considered through an equity lens. Finally, determining the extent of requirements for any social groups or populations would improve both public health messaging and service design.

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  • Olaf Kraus De Camargo, Thorsten Langer, Sebastian Friedrich, Gudrun Reeskau, Sunil Rodger, Jana Willems, Gloria Antonini, Beatrice Brigliadori, Erika Guastafierro, Matilde Leonardi, Nardo Nardocci, Anne Fournier, Jan Willem Gorter, Olaf Kraus De Camargo, Anna Swain, Nethmi Rajapakse, Alessia Marcassoli, Isabella Moroni, Giada Perinel, Anna Petruzza, Julia Frei, Rocio Gutierrez Rojas, Dayle McCauley, Homira Osman, Kinga Pozniak

    Background/Objectives: Care pathways for transition from childhood to adulthood is a well-described phenomenon that is receiving increasing attention in scientific and public health systems for many health conditions. However, the transition of patients with Duchenne muscular dystrophy (DMD) is still neither well-described nor defined and organized at international level with common and agreed pathways and indicators. This is from where the GrowDMD project is originating. DMD is a rare chronic debilitating disease. The period of transition from pediatric to adult care is particularly challenging for adolescents with DMD due to the progression of the condition at a time when youth typically strive for greater independence. This international study (http://www.growdmd.org) aims to explore the diverse experiences of young people living with DMD and their families in Canada, Germany, and Italy to answer the questions: 1. How do patients with DMD and their caregivers experience the transition of care? 2. What measures and strategies are currently implemented in the care organizations of participating countries to support and facilitate the transition of care? 3. How can the transition of care be improved?

    Description: This study utilizes an integrated knowledge translation process in which researchers, knowledge users, Patient Advocacy Organisations (PAOs) representatives, and patient partners collaborate across all stages of the research process. Conceptually, the study is guided by the World Health Organization (WHO) frameworks of International Classification of Functioning, Disability and Health (ICF) and the International Classification of Health Interventions (ICHI). Using a mixed methods design, this study consists of three phases across participating countries in English, French, German and Italian: (i) Scoping review of the literature and semi-structured interviews with individuals from 12 to 23 years of age living with DMD, their caregivers, and service providers to explore the transition of care experiences; (ii) Qualitative surveys informed by findings from the interviews to determine priorities for improvement in each country, and focus groups to identify potential solutions; (iii) Development of knowledge translation products. Data will be presented on the initial findings from the phase (i) scoping review and provide an overview of how these findings will inform the next stages of the research.

    Significance: The integrated nature of this project will allow us to co-create with patients, families, and clinicians a set of general recommendations, tailored to local contexts, that can serve as a model for the transition care path of patients with DMD.

    Funding Agency: The project received international (European Union's Horizon 2020 research and innovation programme under grant agreement N°825575) and local (Canadian Institutes of Health Research, Federal Ministry of Education and Research of Germany, and Ministry of Health of Italy) funding.

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  • caroline sanders, Erica Koopmans, Joanne Schroeder , Lisa Provencher , Lance Potskin

    Background: Early childhood is a crucial time for growth and development, with families having different needs from the prenatal stage until a child’s transition to school. Services in the early years are distributed across many sectors, such as primary care, community health services, education, Indigenous communities and agencies, and not-for-profit organizations. Each of these sectors has their own approach, procedures, and priorities. In northern British Columbia (BC) the loss of programs and targeted funding for early years coordination has impacted families with young children, especially equity deserving and those facing more complicated life situations, who may need greater assistance in enhanced services. In our region, we have experienced that through collaboration and compassionate systems leadership (CSL), we can reduce service gaps and better support the needs of families.

    Our objective is to support positive early childhood experiences and healthy development for all children in the early years (0-8 years) and their families in northern BC through an intersectoral network that fosters relationship building, knowledge mobilization, and research opportunities.

    Description: Our poster will 1) showcase our development of an early years network in northern BC over the last five years and 2) highlight the value of CSL as an anchor that helped our growth into SEED (Sharing to Change Early Childhood Experiences and promote healthy Development in northern BC). In 2018, a small group of early years providers in Prince George undertook CSL training and mentorship over a one-year period delivered by Human Early Learning Partnership members. This was followed by a Michael Smith C2 award that allowed us to develop and deliver a virtual early childhood summit to bring sectors together to learn and share how we can collaborate to support families in northern BC. Since then, we have disseminated our findings, strengthened our communication approach, and built relationships to establish a Regional Advisory Table to create and lead an action plan specific to our region of the province. We will present our approach to embedding justice, equity, diversity, and inclusion at each stage of our work, our in-progress plans, and how a CSL lens has created time and space to share our thoughts and build relationships across sectors.

    The significance: We recognise that many obstacles exist for families and ourselves in accessing and delivering services, further exacerbated by geographic disparities and provincial changes that often impact rural and northern contexts to a higher degree. Principles of CSL have assisted us to inspire partners, foster positive inclusion, and build enthusiastic cross-boundary (intersectoral working). Our hope is that in sharing our work, others will understand how CSL principles can be used to guide engagement and develop supportive spaces for open conversation about creating systems change.

     

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  • Mallorie T. Tam, Julia M. Wu, Patricia M. Page, Elizabeth A. Lamb, Julie M. Robillard

    Background/Objectives
    Following outpatient surgery, the hospital discharge process is a critical time for families to understand their child’s procedures and aftercare. Effective communication between nurses and families can reduce stress and promote care confidence, while poor communication practices can generate misunderstandings and put children at risk for adverse health outcomes. Pain management information is a key component of post-surgery communication, as it is important for families to receive guidance on providing appropriate care for their child at home and ask questions pertaining to pain. The purpose of this study was to explore the experience of postoperative pain management and identify areas for improvement.

     

    Description

    With additional support from our patient partner, Isabel Jordan, and Dr. Christine Chambers, this study was carried out in two phases. Phase 1 aimed to describe the characteristics of the clinical encounter between parents and nurses. This included audio recording thirty-two clinical encounters at discharge between parents (N = 40) and nurses (N = 25) in the Anesthetic Care Unit (ACU) at BC Children’s Hospital. Phase 2 aimed to explore the impact of the clinical encounter on pain management at home. Forty qualitative semi-structured interviews were conducted 1-2 days following discharge with parents/legal guardians of children aged 5-18 who underwent day surgery. Descriptive and content analyses were applied separately on the audio recordings and the corresponding transcripts as well as the interview transcripts using MAXQDA qualitative research software and Microsoft Excel.

     

    Based on the audio recordings and the corresponding transcripts, we found that nurses delivered pain management instructions at an average sixth grade readability level and frequently used communication elements of optimism, and question-asking. Less frequent communication elements included the use of open-ended questions, interruptions, and promotion of parental decision-making. Parents most frequently asked one to five questions, with pain medication being the most inquired topic.

     

    Participants from the semi-structured interviews identified key barriers and facilitators to both pain management communication and pain management at home. Discrepancies between oral and written instructions regarding medication caused confusion for some parents. Participants who had previous medical experiences were more familiar with what to expect with pain management at home. Patient-centered care was an important theme raised by parents.    

     

    Significance
    Immediate changes were made to the communication process on the ACU at BC Children’s Hospital following this study. Findings from this study can help inform improvements to the post-operative communication to support pediatric pain management.

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  • Lin Li, Nancy Carter, Jan Willem Gorter, Linda Till, Marcy White, Patricia Strachan

    Background/Objectives:

    Increasing numbers of youth with medical complexity (YMC) are aging out of child-oriented systems (health, education, and social services) and entering adult systems, where their needs have been largely neglected. Current approaches to supporting the transition to adult services fail to consider the ongoing extensive involvement of family caregivers and the compounding effect of numerous service transfers that YMC inevitably go through. To better support these families, it is critical to understand how they manage the challenges associated with transition and what their recommendations are for support.

     

    The objectives of this study were to understand: 1) how families of YMC adapt to the youth’s transition to adulthood; 2) how contextual factors interact to influence this process; and 3) how transition can be better supported.

     

    Description:

    A qualitative explanatory case study design was used. The sample included YMC and their family members who lived in Ontario and had experience with the youth’s transition to adulthood and transfer to adult services. Data sources included semi-structured interviews, documents, field notes, and memos. Interview data was analyzed using reflexive thematic analysis, followed by theory-driven analysis informed by complexity theory and the Life Course Health Development framework. Documentary evidence was analyzed using directed content analysis. Two parent partners with lived experience contributed to study design, recruitment, data analysis, and knowledge translation.

     

    Twenty-one interviews were completed with 17 participants from 11 families. “Imagining, pursuing, and building a future” was the meta-theme that described families’ priorities, hopes, and fears for the future. In the context of this meta-theme, families had to adapt to physical, emotional, relational, and structural processes that made the transition difficult. Families adapted by engaging in tremendous amounts of work and advocacy, coping psychologically with the demands of transition and uncertainty of the future, and undergoing major life transitions.

     

    Significance:

    This study highlights the tremendous work that families shoulder to navigate through transition and advocate for services for YMC. At the practice level, families require more anticipatory guidance, advocacy, and accountability from their providers to ensure a smooth transition. Furthermore, key essential services, such as complex care programs, are missing in the adult system. At the policy and system level, more options are needed for housing, day programs, and home care for this population, as well as a system that provides supports based on the youth’s and family’s needs, rather than the type and level of disability. These findings should inform future strategies to support better transitions in care for YMC and their families. These strategies should optimize families’ natural adaptation processes by drawing on their strengths and supporting areas of greatest need.

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  • Lin Li, Patricia Strachan, Nancy Carter, Jan Willem Gorter, Linda Till, Marcy White

    Background/Objectives:

    Increasing numbers of youth with medical complexity (YMC) are aging out of child-oriented systems (health, education, and social services) and entering adult systems, where their needs have been largely neglected. Current approaches to supporting the transition to adult services fail to consider the ongoing extensive involvement of family caregivers and the compounding effect of numerous service transfers that YMC inevitably go through. To better support these families, it is critical to understand how they manage the challenges associated with transition and what their recommendations are for support.

     

    The objectives of this study were to understand: 1) how families of YMC adapt to the youth’s transition to adulthood; 2) how contextual factors interact to influence this process; and 3) how transition can be better supported.

     

    Description:

    A qualitative explanatory case study design was used. The sample included YMC and their family members who lived in Ontario and had experience with the youth’s transition to adulthood and transfer to adult services. Data sources included semi-structured interviews, documents, field notes, and memos. Interview data was analyzed using reflexive thematic analysis, followed by theory-driven analysis informed by complexity theory and the Life Course Health Development framework. Documentary evidence was analyzed using directed content analysis. Two parent partners with lived experience contributed to study design, recruitment, data analysis, and knowledge translation.

     

    Twenty-one interviews were completed with 17 participants from 11 families. “Imagining, pursuing, and building a future” was the meta-theme that described families’ priorities, hopes, and fears for the future. In the context of this meta-theme, families had to adapt to physical, emotional, relational, and structural processes that made the transition difficult. Families adapted by engaging in tremendous amounts of work and advocacy, coping psychologically with the demands of transition and uncertainty of the future, and undergoing major life transitions.

     

    Significance:

    This study highlights the tremendous work that families shoulder to navigate through transition and advocate for services for YMC. At the practice level, families require more anticipatory guidance, advocacy, and accountability from their providers to ensure a smooth transition. Furthermore, key essential services, such as complex care programs, are missing in the adult system. At the policy and system level, more options are needed for housing, day programs, and home care for this population, as well as a system that provides supports based on the youth’s and family’s needs, rather than the type and level of disability. These findings should inform future strategies to support better transitions in care for YMC and their families. These strategies should optimize families’ natural adaptation processes by drawing on their strengths and supporting areas of greatest need.

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  • Lawna Brotherston, Jennifer McTaggart, Kyle Graham

    Background/Objectives: Prior to 2013, all mental health presentations in Hamilton, regardless of age, were diverted to Psychiatric Emergency Services at a local adult hospital. In January 2013, pediatric mental health presentations were redirected to McMaster Children’s Hospital (MCH) and assessed in the Emergency Department (ED) with consultation from the mental health team. At this time, the rate of admission from the ED to the pediatric inpatient mental health unit was approximately 70%.

    Description: In November 2014, MCH opened a 6-bed Mental Health Assessment Unit (MAU). The MAU is a locked, self-contained unit housed in the ED for admitted patients. The purpose of this unit is to provide specialized risk assessment and crisis stabilization for children and youth (and their families) experiencing a mental health crisis. In the current state, when pediatric patients present to the MCH ED with a primary mental health concern, they are seen by the ED physician and/or ED social worker. Over half (~55%) of these patients are discharged at the level of the ED. The remaining ~45% of patients are referred to the MAU for further assessment.

    The MAU follows a MRP model supported 24/7 by on-call Psychiatrists. It is staffed 24/7 with pediatric mental health Registered Nurses and Child and Youth Workers, and Social Workers are staffed 12 hours/day on weekdays and 8 hours/day on weekends. The interdisciplinary assessment process incorporates a Nursing assessment (e.g., substance use, medication), a history of the presenting illness by Child and Youth Workers (e.g., behaviour analysis), and a standardized comprehensive risk assessment conducted by clinicians (e.g., Social Workers, Registered Nurses, Psychologists, or Psychiatrists). All staff engage patients in crisis intervention skills. The on-call Psychiatrist determines disposition: discharge home, holdover for further assessment/stabilization, or admit to the inpatient unit. The average length of stay in the MAU is 18 to 36 hours.

    Since the creation of the MAU, the rates of admission to the inpatient unit have significantly decreased from approximately 70% to less than 10% (depending on fiscal year), despite seeing an increase in the number of youth presenting in crisis. Furthermore, there was a reduction in the overall ED wait times for patients presenting with primary mental health concerns.

    Significance: The MAU is a novel approach for pediatric crisis management in acute mental health care. Patients are admitted to the MAU, which allows time for further risk assessment and for the crisis to stabilize. Without the pressure to urgently determine disposition, the number of admissions to the inpatient unit dramatically reduced, thereby reserving this critical service for those most acutely in need as well as preventing unnecessary and potentially iatrogenic admissions. As a result of this less intrusive approach, there is improved flow through acute care and a decrease on ED resources and wait times, thus reducing the burden on an already overwhelmed healthcare system.

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  • Noah Boroditsky

    Identity Matters: Missing Race, Ethnicity, and Indigenous Identity (REII) Data in Pediatrics

     

    Noah Boroditsky,1 Catherine Binda,1 Emily Fisher MD FRCPC, 1 Tatiana Sotindjo MD FRCPC, 1 Kristopher Kang MD FRCPC, 1 Gurpreet Salh MD FRCPC, 1 Alysha McFadden RN, MSN, PhD(c), 1 Shazeen Suleman MD FRCPC,2,3 Matthew Carwana MD FRCPC, 1 Christine Loock MD FRCPC. 1   

     

    1. University of British Columbia, BC Children’s Hospital Research Institution, Canada

    2. University of Toronto, Canada

    3. Stanford Pediatric Office of Child Health Equity, United States  

     

    Background: Systemic racism is a known cause of health inequities, and it is difficult to evaluate these inequities without collecting REII data. The Canadian Institute of Health Information (CIHI) recommends standardized REII data collection in education, justice, and healthcare. The pediatric literature lacks sufficient REII data.

     

    Description: We completed a scoping review of the pediatric literature in consultation with our research librarian. English language references and grey literature published in MEDLINE, Embase, and relevant sources between January 1, 2000-July 3, 2021, were included. Thematic analysis and data extraction were conducted after full-body reviews. Studies included participants ≤18, based in a youth healthcare facility, and included REII data. A total of 1,193 references were collected in the initial search (296 MEDLINE, 894 Embase, and 3 other). After a full-body evaluation, 28 references were retained and included. REII data was collected using Electronic Medical Records (n=8), Electronic Health Records (n=6), collaborative studies (n=2), Patient Chart Documentation (n=1), and National Emergency Services Information System (NEMSIS) data (n=1). REII data was collected in Tertiary care centers (n=8), Secondary care centers (n=1), a Primary care center (n=1), and a Quaternary care center (n=1). Articles were from the USA (n=7), Canada (n=5), Australia (n=4), and the UK (n=1). Racial and ethnic categories described in the literature included: White, Hispanic, Black, Indigenous, Aboriginal, and Asian. 22 of 28 articles reported that collecting REII data would increase awareness of child health inequities between racial and ethnic groups. 14 of 28 discussed awareness being significant in making precautionary decisions. 11 of 23 supported further investigation of REII data collection.

     

    Significance: This study highlights a paucity of REII data in pediatric healthcare. It remains unclear whether centers are collecting this information without reporting or are withholding it due to improper collection or risk of bias. We endorse the BC Office of Human Rights Commissioner’s recommendation to collect REII data. Implementing dynamic REII data collection standards, aligned with the OCAP® principles (ownership, control, access, possession), will help quantify and address potential biases and racism in pediatric healthcare systems. Moving forward, community participatory research should be used to guide REII data collection and reporting. Every individual has the right to own and share their identity.

     

    Contact information: 

    Noah Boroditsky 

    19nb24@queensu.ca 

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  • Mukhinder Gill, Tim Bhatnagar

    Background/Objective:

    During physical rehabilitation sessions for pediatric in-patients, therapists aim to support the patient by leading them through various physical activities, with the goal of improving functional outcomes to a level that will facilitate a discharge so the patient can continue their rehabilitation therapies at home. Interactive technologies have emerged as innovative tools in child healthcare, enabling the measurement of kinematic data while children simultaneously engage in play and therapy. By integrating sensors, motion tracking, and gamified interfaces, these technologies provide valuable insights into children's motor skills, progress, and engagement, ultimately enhancing the effectiveness of therapy interventions. Therapists and healthcare professionals can access and interpret kinematic data during play-based therapy sessions, allowing them to make immediate adjustments and modifications to therapy interventions. This dynamic feedback loop enhances the therapist's ability to track progress, measure outcomes, and tailor therapy approaches to each child's specific needs, ultimately improving the effectiveness of therapy interventions. In the Acute Rehabilitation Unit, Sunny Hill Health Centre at BC Children’s Hospital (ARU), therapists are passionate and diligent about the care and therapy they provide to patients, but tracking progression/improvement of functional performance due to rehabilitation is largely subjective. A customized interactive technology system with the capability to measure kinematics was recently installed in the ARU, and the utilization of training and onsite personnel support has led to an increase in usage and adoption by the therapists of the ARU.

     

    Description:

    During this project implementation, the utilization and impact of interactive technologies for measuring kinematic data during play and therapy sessions have been monitored for the ARU. System usage metrics and the experiences of healthcare professionals, therapists, and children themselves were recorded to better appreciate stakeholder engagement and perspectives on leveraging these technologies for play-based therapy and kinematic data measurement. Throughout the implementation of the system, an iterative feedback-problem-solving approach was used in an effort to optimize system adoption and usage by end-users of the system.

     

    Significance:

    While interactive technologies offer significant benefits to rehabilitation activities, certain challenges regarding adoption should be acknowledged, especially during initial implementation. These may include the need for specialized training for learning and utilizing the system, interpreting kinematic data, and ensuring the privacy and security of sensitive patient information. Involvement of extra resources, both in terms of personnel and accessible documentation must be anticipated, in order to support system end users.

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  • Cindy Truong

    Background: Bedside Medication Verification (BMV) is currently best practice for medication administration and part of the closed loop medication management system. It involves scanning the medication package and verifying it against the client’s ID armband. It is the last step before the medication reaches the client and will alert the nurse if there is a medication discrepancy. 

    Aim: The aim of implementing BMV is to align with the best practices of the healthcare system, improve pediatric medication safety, optimize pediatric client care with a safe and effective medication use system within a pediatric rehabilitation hospital.

    Methods: The interprofessional impact of BMV expanded across the physicians, nurse practitioners, pharmacists, pharmacy technicians, nurses, and information management and technology teams.  The working group explored current and future state using BMV.  Nursing champions from each unit participated in the education roll out and supported fellow nurses.

    Results: 100% of nurses and RTs attended in-person 4hr BMV education session.  Overall, there has been an increase in good catch safety events and a decrease in no harm events.  Additionally, one year post implementation of BMV, 85% of client’s ID band are being scanned and 86% of medications are scanned.  Compliance reports are still ongoing as we explore potential barriers that are impacting scanning.

    Conclusions: Overall the initiation of BMV at a pediatric rehabilitation hospital has shown to be effective at reducing the rate of harm incidence related to medication.  We continue to strive for 90% compliance rates for both scanning clients and medications.  

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  • Dr. Mor Cohen-Eilig, Dr. Ram Mishaal, Nastaran (Sunny) Vafi, Carol Lai, Keith O'Connor, Chetna Jetha

    Evidence has suggested that standardized early cerebral palsy (CP) detection pathway results in earlier diagnosis and intervention, improved quality of life and caregivers’ satisfaction. The lack of a standardized diagnostic pathway in British Columbia (BC) remains a challenge to provide CP early detection at a population-level. The General Movements Assessment (GMA) is a validated predictive tool for CP that identifies certain movement challenges by 4 months post-term age. The infants diagnosed at risk of CP by GMA can have their CP diagnosis and intervention journey initiated earlier that helps maximize their health and function potential, leading to better long-term outcomes.

    The Early Motor Assessment Clinic (EMAC) was launched in June 2022 at Sunny Hill Health Centre, BC Children’s Hospital as the first-of-its-kind selective screening program in BC. The EMAC consists of a group of GMA-trained professionals, who conduct the GMA on the high-risk infants for CP between 2-4 months corrected age. The current intake criteria are history of stroke, moderate/severe hypoxic ischemic encephalopathy and meningitis. In collaboration with the Level III Neonatal Intensive Care Units in BC and Perinatal Services BC, we plan to expand our intake criteria to include more medical risk factors for CP such as placental abruption, very low birth weight. Our goal is to screen all high-risk infants for CP in BC that is estimated 700-800 infants per year. We aim to fill the CP early detection gap and facilitate the first Canadian provincial early diagnosis and intervention program in BC.

    The EMAC clinicians conduct GMA by scoring a 2-5 minute video of the infant lying on their back while they are awake and calm. The video can be recorded in either the clinic or home setting. To address equity, the EMAC team, in collaboration with Office of Virtual Health, have deployed a secure file transfer system that allows the caregivers to transfer the video recorded at home to the clinic safely. The clinicians follow up with the caregivers by a virtual appointment for results and recommendation. The infants identified with abnormal results are referred to the CP Early Diagnosis Clinic for further assessment by a developmental pediatrician.

    This is the first provincial program in Canada for early detection of CP in all high-risk infants. This innovative service model provides evidence-based, timely and equitable care, by minimizing patients’ unnecessary travel, reducing re-assessment stress and maximizing our clinical capacity. By using this model, earlier diagnosis and intervention are being provided, which will lead to better functional outcomes.

    We have been collecting clinical data and caregivers’ feedback to evaluate the clinic’s performance and caregivers’ satisfaction with the clinic and video sharing platform. We hope the outcome will build further evidence on how timely selective screening of CP can impact a child’s health outcomes and the family’s quality of life.

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  • Nandy Fajardo, Dr. Ram Mishaal, Dr. Mor Cohen-Eilig

    Background/Objective

    Pediatric patients with brain injuries often require comprehensive and individualized rehabilitation plans to promote their recovery. The Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) is a reliable and valid assessment tool that measures functional abilities such as daily activities, mobility and social functions in children and adolescents with various health conditions, including acquired brain injuries. In the Acute Rehabilitation Unit (ARU) at BC Children’s Hospital, an average of 30% of patient population are with brain injury per year. The aim of this quality improvement project is to implement the PEDI-CAT assessment tool for brain injury pediatric patients in the ARU to improve the quality of care provided to these patients.

    Description:

    A multidisciplinary team of healthcare professionals including physicians, physiotherapists, occupational therapists, and speech-language pathologists, will be involved in the project. The project will be conducted in two phases: (1) Implementation of the PEDI-CAT assessment tool and (2) evaluation of the impact of the tool on patient outcomes.

    In the first phase, the team developed an implementation plan for the PEDI-CAT assessment tool. The plan included staff training which included webinars and live Q&A session with PEDI-CAT author/expert on the administration and interpretation of the tool. Further, any necessary modifications to the electronic medical record system to incorporate the tool, and a plan for collecting and analyzing data will be developed and implemented. In the second phase, the team will evaluate the impact of the information generated by this tool by calculating the difference between mean admission and discharge PEDI-CAT scaled scores. This information will be used for personalized planning of sessions, setting up treatment goals and communication with families and community teams. Further in quality improvement framework, Plan-Do-Study-Act (PDSA) cycle will be used to access the impact of this tool as a communication measure by surveying the team and families.

    Significance:

    The implementation of the PEDI-CAT assessment tool for brain injury pediatric patients has the potential to improve the quality of care and communication as it provides objective, comprehensive, and adaptable data that will enable healthcare professionals to develop individualized rehabilitation plans that address the specific functional needs of each patient. The project will provide valuable data on the impact of the tool on patient outcomes, which can inform future quality improvement initiatives.

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  • Christina Honeywell, Peter Anderson, Amanda Helleman, Kathleen Pajer, Dasa Farthing, Marsha Vasserman

    Improving Precision in Child and Youth Mental Healthcare Through Neuropsychology-Informed Treatment: A Quality Improvement Initiative 

    Anne-Lise Holahan, Christina Honeywell, Kathleen Pajer, Peter Anderson, Amanda Helleman, Dasa Farthing & Marsha Vasserman 

    PROBLEM: Child and youth mental health (CYMH) treatments seek to improve psychological, emotional, and/or cognitive function, all of which originate in the brain. Unfortunately, our gap analysis showed routine CYMH practice only collects high-level data on patient brain function. BACKGROUND: Neuropsychological testing can profile brain function. Understanding these unique characteristics in a patient could enable providers to tailor treatments, possibly improving outcomes. However, mental healthcare systems have neither the capacity nor resources to administer an intensive neuropsychological battery to every patient. Moreover, findings from such assessments are often not integrated into medical records and rarely include recommendations for optimizing care. OBJECTIVES: We sought to improve this problem by generating a brain function profile on every child and youth presenting for MH care. SETTING: Children’s Hospital of Eastern Ontario (CHEO) Outpatient Mental Health (OMH) Service (Ottawa, Ontario, Canada). DESCRIPTION: Our Solution: We co-developed a stepped neuropsychological assessment protocol enabling neuropsychologists to customize profiling of each patient’s brain function and investigated it in a mixed methods observational study. Clinicians, administrators, and people with lived experience were involved in the design. Participants: Patients and caregivers accepted for treatment in the OMH Service from 13/02/23-02/06/23. QI Protocol: Each patient was offered this care “add-on” if they were assigned treatment at CHEO. If they agreed, they were referred to the project’s neuropsychology team. All testing was done in person. Quick reporting was facilitated by an EHR build integrating neuropsychological data and automatically generating an embedded report. Neuropsychologists met with patients, families, and providers to interpret results. Strategies were presented in a strengths-based paradigm to optimally use each patient’s brain function profile, including suggestions for providers about adapting treatment.  Evaluation: We used the Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) Planning and Evaluation Framework to measure experiences of patients and caregivers, clinicians, neuropsychologists and psychometricians, and cost. RESULTS: 42/42 patients offered the added service accepted; every appointment was kept. All briefing sessions between clinicians and neuropsychologists were attended. Although the full evaluation will be completed in August, 2023, we have numerous unsolicited positive comments from patients, caregivers, and providers. CONCLUSIONS & SIGNIFICANCE: Sharing our stepped neuropsychological assessment and the EHR build will be useful for MH programs in other pediatric hospitals seeking to integrate a precision and streamlined approach to care. Evaluation outcomes will be presented in December. 

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  • Talia Ennett

    Objectives:

    1. Identify common barriers to service provision that your clients/patients may experience
    2. Describe our Brief Behavioural Consultation model and how this process addresses these service barriers
    3. Discuss the potential applications of the presented model to the Ontario Autism Program and other allied health services

    Improving Service Accessibility through Brief Behavioural Consultation

    The Ontario Autism Program (OAP) provides funding for families of children on the autism spectrum to access applied behaviour analysis (ABA), occupational therapy (OT), speech and language pathology (SLP), and mental health services, referring to these as core clinical services (OAP, 2022). Similar to other provincial healthcare programs, many consumers experience barriers to accessing OAP services including specific intake criteria and long waitlists.

    While families wait for core clinical services, OAP providers offer proactive foundational family services (e.g., family and peer mentoring, parent/caregiver workshops, brief targeted consultations, and group services) and reactive urgent response services (URS) to prevent an escalating crisis. Although beneficial for families who are waitlisted for services, a major challenge associated with both foundational family and urgent response services is that both OAP programs have specific intake criteria, which may also prevent a family’s access to service (e.g., a child cannot attend a group with peers if interfering behaviours are present but may not meet the high-risk criteria set by URS).

    To mitigate these barriers and fill a current gap in the continuum of OAP services, a unique four-week model of brief behavioural consultation was developed in the McMaster Children’s Hospital Autism Program based upon previous evidence for brief models of intervention (e.g., Lang et al., 2010; Lyons, Rue, Luiselli, & DiGennaro, 2000). The purpose of this quality improvement poster is to present and discuss our brief behavioural consultation model as a means of overcoming the barriers impacting families within our community. We will describe and address these service barriers, share information on how a brief consultative model provides a solution, and facilitate a discussion about potential applications to other health services.

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  • Kerry Koke, Marie Wright

    Background/objectives

    Across British Columbia (BC), there is a growing population of over 160 children and youth dependent on long-term ventilation. Until aged 18, patients are followed closely by the Home Tracheostomy and Ventilation (HTV) clinic at BC Children’s Hospital. However, there is no population-specific framework to support transition to adult services, and generic frameworks fail to address key elements of transition for this complex patient group. Feedback from patients and caregivers indicates that this transitory period can be stressful, confusing, and frustrating.

    The primary aim of this project is to create a specific transition framework for HTV patients which, within a year of implementation, is followed by all clinic patients aged ≥14 years. Secondary aims are to increase patient and caregiver satisfaction with the transition process and to ensure that patients are attached to an appropriate adult provider prior to HTV clinic graduation.

     

    Description

    A transition working group was established, incorporating HTV physicians and allied health professionals, research and quality leads, and patient partners with lived experience of transition.

    Current state analysis was undertaken to define current practice and identify areas for improvement, including a five-year chart review of HTV clinic transition practices and collection of qualitative data via interviews and electronic surveys.  

    Interested parties were invited to participate in workshops and structured interviews to discuss the challenges experienced during transition. Participants included health and social care providers (HSCP) working with HTV patients, HSCP involved in transition of other complex patient groups, and recently transitioned HTV patients and caregivers.

    Electronic surveys were distributed to adult respirologists across BC to ascertain their referral practices and capacity to support HTV patients, and to transitioned HTV patients and caregivers to determine their satisfaction with the transition process.  

    Data from the chart review, interviews, and surveys are currently being analysed and compared to published standards of care for transition of medically complex patients. Using the knowledge acquired, the working group will devise a new patient-focused and sustainable transition framework, with clinical resources to support its implementation.

    Post-implementation PDSA cycles will include audit of transition pathway use and adult provider attachment, and re-survey of patient and caregiver satisfaction.

     

    Significance

    This initiative will make transition more structured, equitable, and better signposted for HTV patients and healthcare providers. We anticipate that the new framework will improve patient satisfaction and medical stability during this period of great change and uncertainty. The project will also establish a collaborative network of HSCP involved in the care of HTV patients, which will have further-reaching implications for the quality of care delivered.

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  • Bonnie Wooten, Craig Campbell

     

     

     

     

    Background/Objectives

    Momentum for patient and caregiver engagement in health and social care is growing across Ontario/Canada. This is evidenced by a number of recently released strategies and frameworks highlighting the importance of involving Ontarians in their own care as informed consumers of health and social services.  Prevention or treatment decisions in healthcare have been found to be optimized when the research evidence, patient preferences and clinical expertise are considered. Recent surveys conducted in Ontario show that there remains room for improvement with regards to increasing parents’ capacity to make informed decisions.

    Providing Shared Decision Making (SDM) education sessions proactively for patients/families who were at a high likelihood of having multiple and challenging health care decisions was anticipated to be a valuable intervention. Such sessions encouraged patients/families to explore, research and use all the SDM tools available to them along their health care journey. Rather than just involving decision aids or coaching at the time of a decision, providing proactive education takes a different approach to gaining the skills of how to come to a preferred decision with challenging health decisions and strengthen the family’s problem - solving skills.

     

    The objective of the education sessions was to a) unpack the concept of SDM, b) demonstrate the anatomy of SDM guided choices, c) introduce decision coaching and d) show examples of how SDM helps in challenging decisions and decisions that are challenging.

     

     

    Description

    Through the lens of equity, diversity and inclusion we provided education and training that built the skills needed for SDM and fostered a culture that imbedded patient and parent values, engagement in the decision process and helped to improve the parent’s knowledge about their children’s care options as well as increase participation in treatment decisions. Further, depending on the condition and severity, parents and caregivers experience a significant amount of decisional conflict, stress and concern when making treatment decisions for their children that can lead to undesired outcomes, such as delaying the decision, regret about the decision or blaming health providers.

    To promote informed decision-making among parents and caregivers, various interventions/tools have been developed, Factors that affected parent participation in decision-making included professional attitudes, culture about the involvement of parents, organizational attributes (e.g., availability of treatment options), specific features of the child’s condition, and parental characteristics such as their personality, values, beliefs and prior knowledge and experience.

     

    Significance

    Proactive education sessions, training and awareness builds the skills needed for SDM and fosters a culture that embeds patient/family values and engagement in the decision process and helps to improve patient/family knowledge about their children’s care options as well as increase their participation in treatment decisions. It gives families the confidence and tools to use this information and SDM techniques proactively to change how they make medical decisions and alter the trajectory of their health care journey by taking a more systematic approach to decision A well-informed patient is an empowered patient. And an empowered patient is key to a healthier future.

    making.

    This innovative approach will be described in our poster presentation.

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  • Dolly Menna Dack

    Background/Objectives:

    Youth-aged patient partnership has had a long history at Holland Bloorview; in fact the Youth Advisory Council is celebrating more than 25 years in existence. Over the last five years, we embarked into the Transition Strategy, which aimed to create pathways to facilitate the transition from paediatrics to adulthood. Within the Transitions Strategy there were focused streams of work, one of which was the Youth Engagement Strategy. The Transition Strategy provided an opportunity to expand and embed the work being done with our youth-aged patient partners. By fostering a culture of partnership and collaboration the Youth Engagement Strategy has actualized the hospitals’ core values in the creation of the framework and activities undertaken. By fostering a culture of collaboration, we creatively transformed ideas into impact.  

    Description:

    This poster will present 5-year data gathered from the multiple activities of a Canadian paediatric rehabilitation hospital’s youth engagement strategy. These activities focus on opportunities for youth to build leadership skills, the creation of intentional activities for peer-to-peer connection between trained youth mentors and current clients of the hospital and, the continuing evolution of the novel Youth Facilitator role.

    The Youth Facilitator (YF) role was introduced more than 15 years ago as a demonstration project to support clients and families in their preparation for transition to adulthood. This unique role speaks to the organizational commitment of EDI and one of the ways to be a leader in the employment of persons with disabilities. The YF uses lived experience of growing up with a disability and clinical judgement to facilitate clients and families to set meaningful goals related to transition to adulthood. Now this role has expanded and includes 5 permanent roles in the hospital.

    Peer-to-Peer Connections data for our inpatient programs – Teen Lounge drop-in, Bedside Youth Mentoring (new), and our ambulatory program will be presented along with the facilitators for success and client satisfaction data for the new Bedside Youth Mentoring demonstration project.  

    Significance:

    The information presented in this poster represents the actualization of a commitment to partner in meaningful ways with youth leaders. Over the five years of the Transition Strategy, we have: expanded and embedded the novel Youth Facilitator role, completed five arts-based projects, bringing to life the experience of transitioning to adulthood in mixed media, podcasts, photography and short stories, created growth opportunities for the youth leaders through membership on organizational committees, project teams and through paid employment roles in the hospital.

    This work demonstrates that it is possible to successfully integrate Youth Leaders into the work done by Canadian health care institutions in ways that are mutually beneficial to the organization, clients & families and the Youth Leaders.

     

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  • Grace Nie, Sara Jassemi, Shakira Fulton-McLean

    Background

    T7 is a medical unit at BC Children’s Hospital for stabilizing pediatric patients with eating disorders and resolving their hemodynamic instability, refeeding syndrome, and other complications. Most patients with eating disorders follow a standard admission protocol for medical stabilization, however, we are seeing an increasing number of patients with high medical and psychiatric complexity who require long, repeated medical admissions. Some patients are admitted and re-admitted to the unit over many months and years, representing complex cases marked by psychiatric comorbidities, refractory feeding courses, and extensive needs in psychosocial supports. Previous challenges with the handover of patient information have affected care team collaboration and contributed to treatment delays. We identify opportunities to improve care for long length of stay patients with eating disorders in a medical stabilization unit by presenting common patient factors and our process for modifying existing care pathways to meet their needs.

     Description

    This project contains three components as part of a larger quality improvement project aimed at interprofessional collaboration. First, a scoping review was completed to identify predictors of extended length of stay in pediatric eating disorder treatment, highlighting the top predictors as mental health comorbidities, low admission BMI, and previous admissions. However, multiple studies identify no significant predictors, instead highlighting the variation in length of stay between countries, and even within hospitals belonging to the same health network, obscuring the comparison of predictors. These results highlight the difficulty of knowledge transfer from research to local practice, as extended hospitalizations were not only determined by patient illness severity or comorbidity, but also by healthcare system features and access, such as availability of follow-up services, cost of insurance, and rurality. Second, review findings informed a retrospective chart review of 20 long-stay patients to capture their demographics, complications to discharge, and level of support. Patterns from chart review relate to refractory feeding courses, complex family dynamics, psychosocial considerations, and more. Third, chart review findings yield pertinent knowledge for individualizing eating disorder treatment delivery at BC Children’s Hospital, including collaborative care plans and standardization of goals of care. 

    Significance

    Optimizing the time in-hospital is important to reduce in-hospital morbidity and facilitate transitions back to school and home. In light of the significant heterogeneity in the scientific literature on length of stay for eating disorder treatment, quality improvement approaches are necessary for local hospitals to meet the needs of their own complex patient populations.

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  • Cheryl Munroe

    Mission Safety: The Journey of a Rapid Response Team 

    Cheryl Munroe munroe@hhsc.ca

    Hamilton Health Sciences, McMaster Children’s Hospital

    Hamilton Ontario Canada

     

    Background

    Supporting nursing staff is key in supporting patient safety. With the staffing shortages, increased amount of junior staff, decreased resources and increased acuity of pediatric patients, in the moment nursing support options have become more challenging.  This leaving patients at risk for delayed treatments or safety events.

     

     

    Objectives:

    1.  Describe how a clinical support option was utilized to ensure nurses always have access to the support required to safely care for their patients.
    2. Describe how the creation of an online education platform option was used to enhance clinical support.
    3. Demonstrate how a Rapid Response team can be utilized to better support patients, families and staff.  

     

    Description:

    McMaster Children’s Hospital (MCH) has been a leader in providing tertiary level care to children across Southwestern Ontario since 1988.  In recent years, the hospital has become a member of Solutions for Patient Safety (SPS) ™, a network of Canadian and American hospitals partnering together to promote patient safety to pediatric patients. In this poster presentation two initiatives which support efforts to maintain a culture of patient safety will be reviewed.

     

    The first initiative will highlight our interdisciplinary pediatric rapid response team called the Pediatric Assessment of Critical Events (PACE) team. PACE is designed to bring critical care expertise outside the walls of the PICU to the bedside of children requiring “just in time” intervention, assessment and advanced critical care.  The poster presentation will include examples of how the team supports safe care and offers mobile clinical support across the inpatient wards.

    The second initiative is an education platform (SharePoint) called Planet PACE.  The poster presentation will demonstrate how an RNAO Advance Practice Nursing Fellowship was utilized to promote and enhance safety for pediatric patients at MCH.  The poster will review how an improvement opportunity led to a SharePoint creation that was made available to all pediatric nurses as an enhanced form of clinical support.   The goal of this project was collaboration and capacity building to support a safety-first culture by providing mentorship and coaching to pediatric nurses when needed.

    Significance:

    The usage of the PACE Team to help support patient safety has been imperative in supporting the staff within the Children’s Hospital. The PACE Team received 538 clinical support calls in 2022 this is an increase from 310 calls in 2015 when clinical support began in.  When pediatric nurses were asked to give feedback on the clinical support option they stated it was “the phone a friend option that allows them friendly assistance anytime of the day or night”.  In the same survey 92% of staff stated they had utilized the clinical support option. 

    The online clinical support option Planet PACE has had 3200 hits in the last year.  Information is easily updated and added frequently as the request of staff or educators.  Content creation also allowed an opportunity for staff to collaboration to and make content to add to the site. This has helped to ensure sustainability of the site. Supporting and empowering staff provides an opportunity for best care for all. The implementation of these clinical support services and tools has created an innovative clinical support option as no other Rapid Response teams presently practice this service in Ontario.  Please join us to learn more about these exciting initiatives that collectively support staff development and foster a culture of safety across our organization. 

     

     

     

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  • Andrea Lauzon, Laura Langer, Mark Bayley, Sarah Munce, Dorothy Luong

    BACKGROUND/OBJECTIVES:  Clinicians have reported an increase in the number of youth presenting with mental health symptoms, specifically, anxiety and depression symptoms. The prevalence of anxiety and depression in young adults (YA) with cerebral palsy (CP) and brain injury (BI) is not well studied though some literature suggests YA with CP are at greater risk of mental health issues.

    1.  To understand the levels of levels of depression and anxiety symptomology and comparison between a sample of YA with CP and BI

    2. To understand the level of community integration and comparison between YA with CP and BI

    3.  To increase awareness of common medical diagnoses (chronic medical conditions) seen in participants with CP and BI and a positive mental health screen

     

    DESCRIPTION:    Living independently fully engaged (LIFEspan) Clinic, is a Nurse Practitioner led clinic facilitating transition of youth with CP and BI from paediatric to adult rehabilitation. Participants in the study were recruited from 640 current patients between 18-58 years old, diagnosed with a childhood onset disability of CP or BI, no comorbid moderate to severe developmental disability, and registered with LIFEspan Clinic. Between 2017 and 2022, 342 eligible participants consented to participate.  The study was a cross sectional quantitative study.  Data collection involved a chart review, clinic assessment, and self-assessments using Patient Health Questionnaire-4 (PHQ-4) and Community Integration Questionnaire (CIQ). Data was collected over baseline and 3 follow-up visits. Demographic statistics were performed including group means and frequencies counts; student t-tests and Chi squares analyses were used to examine group differences and associations between variables. Linear mixed effect models and general estimation equations were used to examine trends over time.

    SIGNIFICANCE:  342 participants with a Visit 1 were analyzed, 43.9% female, 57.9% diagnosed with CP, 42.1% diagnosed with BI, mean age 23.1 (SD 4.3) . The PHQ-4  median score was 2 (IQR 0 - 5), where 3 is a positive screen for anxious or depressive symptoms.  45.5% (CP) and 47.7% (BI) screens were positive PHQ-4.  CIQ results showed that YA diagnosed with a BI were more integrated in the community than YA diagnosed with CP.   40% of males versus 55% of females experienced pain; there were no significant differences in males versus females in terms of depression scores, as measured by the PHQ-4. Lower CIQ scores were associated with depression diagnosis as time progressed (p=0.05). Almost half of the PHQ-4 screens were positive and 14.3% of participants taking antianxiety/antidepressants. YA with CP or BI may have higher rates of mental health issues and lower rates of community integration in comparison to peers.   Our study results supported the importance of screening for mental health and community integration.

     

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  • Anne Fournier, Sylvie Gérin-Lajoie, Laurence Leser

    In 2018, the Spina Bifida and Hydrocephalus Association of Quebec has developed a web-based assistant that helps youth manage their health and confidently navigate their transition to adulthood. Notes2Self.ca or Pensatout.ca (in French) is a mobile website that responds to the challenge of the transition of patients with special health care needs such as spina bifida/hydrocephalus.  The application was later adapted for youth with congenital heart disease. 
    
     
    The challenges of transition such as finding a new care team, gathering the information and materials needed for care, establishing routines and good lifestyle habits, paying attention to the warning signs of complications and knowing how to react to them, planning appointments, social life and studies issues are some of the aspects taken care of by application, a tool that combines check list functions, planning tools and practical resources on a platform that young people love, their mobile device.  
    
     
    Notes2Self offers young people the opportunity to complete missions:
    1. Understand and meet their basic needs: care team, medication, outpatient and home health care routine, equipment, transportation.
    2. Watch over their health: do small express tests that allow them to go around everything, both in terms of physical and mental health, and to remain vigilant to possible complications. The tool allows them to program reminders in their diary - and the young person occasionally receives emails inviting them to carry out a short self-examination.
    3. Develop healthy lifestyle habits and take care of their well-being: plan leisure activities, regular sports activities, take an interest in their diet, etc.
    4. Plan their future: finally, the tool encourages young people to think about their future plans, higher education, founding of a family, etc.
    
     
    Notes2Self also allows youth to engage in conversations with people, whether professionals or others, to access a host of resources, and to prepare action plans to better achieve their personal goals.
    
     

    Since the launch of the application 7800 francophone and anglophone youth with spina bifida and/or hydrocephalus have used it. They commented « Pensatout est l’outil qu’il nous fallait pour mieux aborder notre transition; Pensatout m’aide à m’organiser ; Je peux utiliser Pensatout selon mes besoins »

    
     
    The adaptation for youth with congenital heart disease was launched in February 2023 and the comments so far are encouraging.
    
     
    In conclusion, this ludic application developed for the transition of youth with spina bifida/hydrocephalus and congenital heart disease is a promising tool to help these special populations succeed in all aspects of their life during this important phase.  The application can also be modified to suit other chronic conditions. 
    
     

     

    
     

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  • Amanda St. Dennis, Many People, Jessica Geboers

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  • Cynthia Vallance, Esther Lee

    BACKGROUND

    Medical students enter medical school with passion and desire to support others. They crave to learn from others especially patients as they learn mostly in a didactic/lecture style.

    In 2016, we developed a two-part session to incorporate family centered objectives during a week on toddlers and genetics for medical students at University of British Columbia. We then also consolidated this education by providing a similar session in the last year of medical school.

    The session is co-designed and improved by partnership between a pediatrician (Complex Care and Palliative Medicine) and a family engagement lead (family expert with lived experience and Rehab medicine)

     

    OBJECTIVES

    • Develop education for students where they can learn directly from those with lived experience
    • Improve education delivery via PDSA cycle with feedback from the students, those with lived experience, facilitators, and UBC education team.

     

    DESCRIPTION

    In 2016, the original session included:

    • Part 1: didactic 20 minutes that showed the role of the medical professional in the patient’s care community. Also emphasized family centered care and social determinants of health. Delivered by a pediatrician and family engagement lead and social worker.
    • Part 2: Group session where a parent with lived experience (family expert) shared their journey through healthcare and a facilitator helped with the discussion. We also had an orientation for facilitators and family experts prior to part 1 and a debrief after the session.

     

    Since 2016, via qualitative feedback through surveys (students) and debrief sessions (family expert and facilitators) we improved the sessions once to twice a year using a PDSA approach by

    • Changing part 1 shorter to make more time for part 2
    • Changing part 2 small groups to have less participants to improve the discussion (as low as 17 students per group, which led to recruitment of more facilitators and family experts). Giving specific guidance to family experts to allow for a balanced view of the healthcare journey.
    • Changing part 2 to have some time with only the students and facilitators to allow for dedicated time for debrief and reflection by the students.
    • Emphasizing the importance of perspective and trauma informed practice to students
    • Streamlining debrief sessions for family experts and facilitators
    • Improving honoraria for facilitators and family experts
    • Increased administrate support for the coordination of small groups
    • Requesting feedback for family experts by students as requested by the family experts
    • Keeping the sessions via zoom to allow for less barrier for participation by family experts and facilitators

     

    Significance

    • Medical students are part of our future health care system. We want them to learn directly from those who have experienced care.
    • Medical students benefit a debrief session to reflect from listening to powerful stories
    • Family experts enjoy being part of training future health care professionals and require compensation for their time
    • Family experts need the option of support for public speaking and potential re-trauma of sharing their journey
    • This highlights the importance of financial and administrative support for developing and improving sessions that emphasize interactive education (This session is more challenging but more rewarding to students and family experts as opposed to an easy didactic session by one physician year after another)
    • Curriculum design should involve those with lived experience

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  • Ciobha O'Kelly, Madison Beatty, Sherri Adams, Blossom Dharmaraj, Julia Orkin

    Title: Online, collaborative care plans for children with medical complexity: A quantitative review of the feasibility and acceptability of caregiver-implemented changes   

    Authors:  Ciobha O’Kelly1,2, Madison Beatty1,2, Sherri Adams1,2,3, Blossom Dharmaraj1, Clara Moore1, Jennifer Stinson1, Arti Desai4, Leah Bartlett5, Erin Culbert6, Eyal Cohen1,2,7,8, Julia Orkin1,2,8   

    Affiliations: 1Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada, 2Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Canada, 3Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada, 4University of Washington, Seattle, Washington, USA, 5Royal Victoria Hospital, Barrie, Canada, 6Credit Valley Hospital, Mississauga, Canada, 7Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Canada, 8Department of Pediatrics, University of Toronto, Toronto, Canada  

    Submitting author and presenter: Ciobha O'Kelly (ciobha.okelly@sickkids.ca)

    Background/objectives  

    Care plans are a part of standardized care for children with medical complexity (CMC) and provide a summary of a child’s medical history, care needs, and action plans. Healthcare professionals (HCP) predominantly edit and house care plans, limiting shared ownership and partnership with caregivers (1). Care plans are typically updated during complex care clinic visits and admissions, resulting in a document that is not updated in real-time and may contain outdated information. Providing caregivers with the opportunity to contribute to care plan development has been shown to strengthen caregiver-provider relationships and improve health outcomes (2,3). Online, collaborative care plans that allow caregivers to implement changes in real-time may be an effective tool to increase the accuracy, utility, and accessibility of their child’s health information.  Our study aims to 1) assess the feasibility and acceptability of online, collaborative care plans and 2) evaluate the frequency, timing, and type of caregiver-implemented changes. 

     

    Methods  

    Caregivers of CMC were recruited from a tertiary complex care program to use an online, patient-facing platform (Connecting2gether, C2) for six months, which included access and the ability to edit their child’s care plan. Caregiver-implemented changes were recorded at 2, 4 and 6 months. The C2 care plan was compared to the care plan on the patient’s electronic medical record (EMR) to assess for differences. Caregivers completed an acceptability survey and in-depth semi-structured qualitative interviews to share their perspectives. The frequency, timing, and types of caregiver-implemented changes were assessed using descriptive statistics and cross-compared with qualitative interview data.  

     

    Results  

    Thirty-six caregivers registered on C2 and 27 (75%) made at least one change to their child’s care plan. Caregivers made 149 changes (range 1-26 per caregiver), with the most frequently edited sections being medications (17.4%), body systems information (16.8%) and diagnoses (10.7%).  84% of changes were made within the first two months of C2 registration. Caregivers who made fewer changes expressed more discomfort in editing their child’s care plan. Some of the additions by caregivers differed from those typically made by HCPs, including re-ordering the diagnosis list and adding reasons for medication use. Most changes by caregivers included either new or more up-to-date information than the EMR care plan. For example, 69% of the medication changes by caregivers (e.g., updated dose or route) had not been added to the child’s EMR care plan. Most caregivers (69%) reported that online care plan access was helpful, and 53% found editing the care plan helpful. 

       

    Significance 

    Caregivers made clinically relevant changes and appreciated being able to access and edit their child’s care plan on C2, suggesting that an online, collaborative care plan is feasible and beneficial. Differences in the types of changes implemented by caregivers and HCPs indicate differing priorities and a potential synergistic benefit of contributions from both groups. Some caregivers expressed editing discomfort, highlighting the need to explore a collaborative review process on future care plan models. 

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  • Tom McLaughlin

    Some children with serious infections require prolonged treatment with IV antibiotics. Many of these children are clinically stable and could be treated at home or in a clinic; however, in BC they historically would spend weeks or months admitted to BC Children’s Hospital (BCCH).  This prevented kids from going to school, parents from working, and cost the hospital over 1,000,000 in inpatient costs. Our program has served patients from all regions of British Columbia using a "hub-and-spoke" model, with local nursing and physician support for in-person issues, and virtual support and care coordination available during weekday business hours from BCCH.  We developed a quality improvement dashboard using the “Redcap” program, and use this information to improve care, and to support a parallel research study on patient outcomes. The PIVOT program has measurably improved patient and family experience, reduced unnecessary inpatient care, and saved significant healthcare resources.   

    This poster will be directed at pediatric healthcare leaders and individuals interested in implementing their own QI initiatives within their local hospitals and health systems.  There will be a particular focus on 1) how to gather data and patient stories that support a change, 2) how to engage with leaders, advocates, and funders to support and implement a change, and 3) how to develop ongoing performance measurement to continue improving a program. 

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  • Marie-José Clermont, Juliette Durocher, Eric Racine, Anne Fournier, François Ouimet, Rocio Rojas, Nicole Padley

    Background and objectives:  Transition from pediatric to adult care is a challenging moment in the life of youths living with a chronic condition. Many transition programs are oriented towards maximizing compliance and treatment adherence, thereby placing high value in autonomy and independence. There is a need to expand the focus of current research and interventions to engage youth as persons with preferences and aspirations to a flourishing life. Also, less material is available in French and developed in culturally appropriate ways for French speaking Canadians. We undertook a participatory action research study to better understand the needs and aspirations of youths with respect to the transition, including their well-being and flourishing. We also aim to act based on these results to develop a participatory intervention and related evaluation of the initiative.

    Description: Parachute is a participatory action research study involving (to date) semi-structured interviews with youths, parents and healthcare professionals and an online survey with youths and parents. The current steps – on which we will also be able to report partly on in December – include the co-development of transition video content with youth and a participatory seminar for healthcare professionals. Semi-structured interviews (N=54) were conducted via Zoom and audio recorded with youths, parents and healthcare professionals recruited from four clinics in a pediatric hospital. The online survey was tailored to assess transition readiness and a series of questions about needs and priorities for transition (e.g., expectations, preferences for modalities of transition) with comparative perspectives between youths and parents. Participatory video development is ongoing and will involve numerous meetings with a designated task force, film-maker crew, and an advisory committee of parents and healthcare professionals.

    Significance: Interview results show that concerns about the transition of care cluster around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to pediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., knowledge and information about the transition, parental involvement in healthcare) were identified with corresponding recommendations to address them. These salient concerns touched upon important dimensions of human flourishing (e.g., environmental mastery, autonomy). The flourishing and potential of youths is affected by suboptimal transition practices. We will discuss the implications of our findings, including new survey results and video content available by the time of the meeting, about key aspects of human flourishing. We will also take this opportunity to reflect on the value and challenges of participatory action research in the context of transition.

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  • Karen Beattie, Sureka Pavalagantharajah, Bojana Babic, Andrea Hunter

    Background/Objectives: There is increasing interest from pediatric residents and educational program directors to involve patients and families in medical education and training. Despite interest, very few Canadian Pediatric Residency Programs engage patients and families in education/training in the curricula except for limited involvement in simulation or specific academic half-days. The McMaster Children's Hospital (MCH) Family Advisory Council (FAC) approached the pediatric residency program directors about being included in residency training.  As a first step, parents created and led a half-day session with trainees. We sought to evaluate the impact of this session on residents and parents.

    Description: Members of the MCH FAC were invited to present a session to first-year pediatric residents during orientation.  Five parents created and led the three-hour online session. Planning for the session involved parents meeting to identify key content that should be included and subsequently meeting with the pediatric residency program directors to discuss content that would be most impactful and valuable for residents. The session was divided into three sections beginning with patient and family stories from three parents with diverse personal stories. The stories included parents' experiences with preterm birth and neonatal intensive care unit, patient and family experiences with eating disorder, and children's journey with cancer. This was followed by a presentation by the FAC chair about effectively communicating with parents. The third section included a panel discussion of four pre-prepared questions that were posed to each parent. Feedback about the session was collected from residents using a standard questionnaire where the session's relevance and impact were assessed on a five-point Likert scale. Residents were also given open space to write comments. Parents were given a seven-question survey asking about their motivation for volunteering and their experience on the day. 90% of residents who responded assigned all three sections a five on the Likert scale when assessing impact of the session. Parents also thoroughly enjoyed the session with all stating that they would volunteer again in the future. Parents felt respected and validated and thought the residents demonstrated empathy and compassion throughout the session. 

    Significance: This half-day session led by parents with children with diverse medical needs and experiences was impactful for residents and overwhelmingly positive for parents. Involving parents who are passionate about engaging with trainees and clinicians to help them understand the patient/family experience provides clinicians with invaluable insight into their medical journey. There is immense opportunity to grow patient and family partnerships in education and to study the impact of embedding patients/families into the curricula of pediatric training programs across the country. 

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  • Maria Juricic, Stacey Miller, Emily Schaeffer, Kishore Mulpuri, Lesley Bainbridge

    Background/Objectives:

    Children with cerebral palsy (CP) frequently require orthopaedic surgery. Although a child’s family is known to be integral to their wellbeing and healthcare, little is known about the experience of parents through a child’s surgery. The objective of this study was to explore the lived experience of parents of children with CP, across the Gross Motor Function Classification System (GMFCS) levels, requiring orthopaedic surgery.

    Description:

    A sequential exploratory mixed-method research project was undertaken. Participants were parents of children with CP who had undergone orthopaedic surgery at an urban tertiary care center. Drawing from interpretive and constructivist theoretical frameworks, and interpretive description methodology, in-depth interviews with six parents, whose children had undergone surgery within the previous two years, were completed and analyzed by inductive thematic analysis. Interview questions related to the parents’ relationships with their child’s health practitioners and their experience through the surgical process. Qualitative results were used to inform the development of a quantitative survey. Twenty-five self-administered surveys were completed by parents whose children had undergone surgery within the previous five years and were analyzed using descriptive statistics. Results of both study strands were compared across GMFCS levels and findings were integrated.

     

    The six parents interviewed represented children at each of the GMFCS levels. Twenty-five parents of children at GMFCS levels I (1), II (7), III (4) IV (8) and V (5) completed self-administered surveys. Four themes were identified: 1) “preparing and being prepared”, 2) “feeling known and recognized”, 3) “knowing and advocating for your child”, and 4) “feeling stress and coping”. Parents surveyed identified relying most on their child's surgeon (23/25) and physiotherapist (19/25) in decisions and preparation for surgery. While the majority indicated their child's surgery to be a stressful experience (20/25), most did not indicate it to be a negative experience. Survey responses were found to be similar across the GMFCS levels of children and surgical procedures undertaken. While the study themes are consistent with previous findings of related studies, the role of the interprofessional team to the experience of parents in this study is highlighted.

     

    Significance:

    These findings recognize some of the needs of parents and suggest opportunities for collaboration between health care practitioners and families in caring for children with CP across the spectrum of functional mobility and orthopaedic needs. Approaches to care that foster partnership and individualized support may more directly meet the needs of parents and caregivers through a child’s surgical intervention. Interprofessional care models may facilitate improved care of children, and the experiences of families.

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  • Laura Bowman, Carolyn McDougall, Danielle D'Alessandro

     

    Background/Objectives: Youth with disabilities and their families move through many transitions across multiple areas of their lives, with increasing frequency and intensity as they approach adulthood. Each transition brings with it new and diverse system partners, funders, and service providers, requiring youth and families to navigate multiple requirements, advice, and deadlines. Navigating these transitions can be stressful, even overwhelming for youth, families, service providers, and systems. Preparation, information, and support all contribute to smoother transition experiences across the board. So we are left with the task of considering how we might create systems that prepare, inform, and support the various contributors to youths’ transitions throughout and out of the pediatric health and rehabilitation systems. 

    We propose a multi-level, integrated, collaborative pathway model to meet the complex and inter-sectoral needs of youth and families as they move towards adult life. Based on our Employment Participation Pathway model built for youth with disabilities and drawing from our 15 years of experience in connecting clients, services, and organizations, we will present a framework for consideration in other program and service areas facilitating transition for youth with disabilities and their families. 

     

    Description: In this poster, we will present our employment pathway model, drawing particular attention to the following areas: (1) a start-early approach to building skills, knowledge, and outlooks related to the transition destination; (2) person-directed planning and meaningful inclusion of client/family voice in their own decisions; (3) progressive and evolving support to meet the resources, knowledge, and experiential needs of clients and families; (4) collaboration with community partners to consolidate offerings and amplify what is already working; (5) intentional advocacy to build policies and community-level supports for transition needs; and (6) evaluation and research to support ongoing growth. While all of these 6 nuanced areas combine to create supportive and progressive pathways to prepare clients, families, service providers, and systems for change, investment in any one of the areas can help organizations and service provider teams to foster meaningful transition-to-adulthood experiences. 

     

    Significance: The significance of our pathway framework is twofold. First, it highlights the various elements that combine to make a meaningful pathway of services so that readers can consider what they might build, and also what they might already have. Once readers consider what they are already offering, they can consider who in their network may offer elements that they do not, and build meaningful connections that respect available resources and promote mutual growth. 

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  • Jennifer Retallack, Jennifer Begg, Adela Matettore, Magalie Caudron, iain Johnstone, Melissa Coop

    Pediatric critical care in British Columbia (BC) is centralized to a single tertiary pediatric intensive care unit (PICU) in the southwest corner of the province, with a second smaller PICU in close geographic proximity.   In BC approximately 50% of PICU admissions are unscheduled for urgent or emergent medical condition, with half of these patients presenting to hospitals without pediatric critical care expertise.  Geographic, weather and logistical challenges all contribute to prolonged transport times and delayed access to necessary higher levels of care. As a consequence, initial resuscitation and care is provided by community providers teams, not infrequently without a pediatrician to support.  These challenges were further compounded during the pediatric winter respiratory surge of 2022, with a dramatic increase in the number of pediatric patients requiring pediatric transport and critical care. 

    In 2022, the Provincial Pediatric Critical Care Outreach Project was funded by the BC Children’s Foundation. The goal of this initiative was to develop ways to better support critically ill children and the providers who care for them. The project was seen as opportunity to transform the model of pediatric critical care in BC. To achieve this, the PICU at BCCH partnered with Child Health BC (CHBC), a provincial health improvement network.

    Through this 3 year quality improvement project, a multi-layered approach is being developed to support our community healthcare partners including: 1) integration of video assessments for interdisciplinary pediatric critical care remote consultation 2) distributed learning through provincial interdisciplinary critical care case discussions 3) provincial delivery of structured education and simulation curriculum (Stabilization Essentials in Pediatrics – StEP Course).

    This project began with a robust needs assessment through:1) the CHBC Tiers of Service: a provincial pediatric system planning tool, 2) targeted provincial workshops and working groups, and 3) the development of a multi-layered partnership across the different Health Authorities, and specifically between patients, families and indigenous communities.

    The project rapidly rolled out a pilot for integration of video into remote PICU consultation and triage during the respiratory surge of 2022.  Survey data from PICU physicians utilizing the platform demonstrated 90% found video helpful in their consultation, allowing more targeted patient advice to be given in over 50% of the calls.  In 12% of calls, the team was able to avoid a transport and support the care of the patient in their home community.  Family surveys demonstrated all participants identified benefits to the integration of video assessments.

    The two education strategies will begin in June 2023.  The distributed provincial learning sessions will launch with over 250 registered participants.   Evaluations will include participant demographics, and will gather learnings from participants, and facilitators.  Two StEP courses will be delivered in 2023, with an established plan for distribution across the province through the next years. Evaluations will focus on the development of interdisciplinary provider skills and the ability to create a “train the trainer” model.

    All layers of the project will utilize QI methodology and a detailed evaluation matrix to support the development of a meaningful and sustainable program.  This project is “flipping the script” and transforming the model of pediatric critical care in BC.

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  • Carey Pidhayecki Stefishen, Cyndie Koning, Sabrina Eliason, Jennifer Klein, Brian Schmidt

    Background:

    Neurodevelopmental disabilities (NDDs) are chronic conditions that impact functioning. Individuals with the same NDD diagnosis do not have the same level functioning. NDD diagnosis is often used to determine eligibility for supports and services. This diagnosis-based approach can exacerbate inequity.

     

    The focus of our quality improvement (QI) project was our Pediatric Fetal Alcohol Spectrum Disorder (FASD) clinic. FASD is an NDD associated with the effects of prenatal alcohol exposure (PAE) on the fetal brain. Individuals with FASD experience challenges in accessing timely and comprehensive care due to stigma, inconsistent physician and clinician knowledge and variable access to diagnosis-specific supports.

     

    Models such as the World Health Organization (WHO) International Classification of Functioning (ICF) and the F-words of Child Development create frameworks for considering functioning across NDD diagnoses and can promote coordination of service delivery; allow consideration of bio-psycho-social factors impacting health and promote individualized person-centred assessment.

     

    Objectives:

    The objective was to understand facilitators and barriers in creating a clinic model that would prioritize individual functional needs rather than diagnosis-based needs. A priority was to improve equitable access to developmental care for all children.

     

    Description and Findings:

    This study employed a qualitative approach: interviews with teams from five Canadian multi-disciplinary clinics assessing NDDs other than Autism Spectrum Disorder (ASD); interviews with local stakeholders including families, clinicians, administrators and community partners; and a literature review to examine strengths and limitations of models of care based on functioning.

     

    Facilitators of a successful model included: a knowledgeable, adaptable, humble and collaborative team; strong regional connections; and a centralized intake process. Barriers included: systemic biases e.g., racism and classism; streamlining assessment processes; managing high rate of ‘no shows’; staff scheduling, and long waitlists. Considerations for ensuring equity included: promoting access to care in a timely, respectful, and efficient way; cultural humility and diverse representation amongst patients and staff.

     

    Significance:

    These results will shape the development of a new service delivery model to improve access, quality, and individualization of NDD assessment that will be sustainable and feasible for implementation.

     

    This model will incorporate best practices from existing models that serve individuals with FASD and other NDDs that are underserved by existing models of care. We will measure the impact of this change on volume of patients seen, patient demographics, patient feedback and clinician feedback. This work contributes to a small but growing body of work that shifts the focus of care away from diagnosis and towards functioning.

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  • Kat Lidstone, Leeann Taylor, Megan Bolton, Trish Page, Crystal Sun

    In the past two years, the respiratory virus surge along with the COVID-19 pandemic have delayed pediatric surgeries across Canada. As a result, Canadian pediatric hospital surgical waitlists have grown such that more children are waiting outside of their clinical benchmarks to receive surgical care.  

     

    The Surgical Optimization and Recovery (SOAR) initiative was launched in response to BC Children's Hospital’s (BCCH) growing surgical waitlist. The goal of the initiative is to reduce the surgical waitlist through 9 key projects, which aim to optimize existing capacity, leverage existing partnerships and create new capacity, while providing high-quality care. This includes ensuring equitable access through the consideration and mitigation of barriers to care for numerous populations.  

     

    With Health Emergency Management BC (HEMBC) support, the SOAR initiative activated a Health Coordination Centre (HCC) to support surgical recovery at BCCH. An HCC shares many similarities with an Emergency Operation Centre (EOC) in its use of the Incident Command System (ICS) governance structure and its intent to direct resources and leadership attention to a situation of concern. However, a key difference is that an HCC is modified to support longer-term emergent situations. As a result, HCCs have less direct operational involvement than EOCs, allowing for ongoing monitoring and higher-level decision making. The ICS calls on numerous key project partners and prescribes an efficient process for reporting and decision making throughout emergent situations such as a growing surgical waitlist.

     

    This presentation will introduce key projects under the SOAR initiative with a focus on processes and change. It will also highlight the unique impact of the ICS on mobilizing resources and fostering engagement in the resolution of prolonged emergent situations. Presenters will further share some of the learnings thus far, along with next steps for this work as it propels forward. 

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  • Karen LeComte, Jan Frew, June Albrecht , Derek Human , Brian Sinclair, Jacalyn Brown, Selena Chen, Alexia Gillespie, Jasmine Grewal, Gnalini Sathananthan, Maryam Zareei

    Background:

    Approximately 0.8 - 1% of the population will be born with Congenital Heart Disease (CHD) -- a structural heart defect present at birth. Medical progress over the last 60 years has generated a growing population of youth with CHD who will require the specialty care provided by an adult congenital heart disease (ACHD) multidisciplinary team. The longitudinal specialty cardiac care provided across the life span supports the best outcomes and reduces gaps in care that are associated with increased morbidity and mortality rates.

    As a result of the COVID 19 pandemic, pediatric CHD patients in British Columbia experienced delayed transfers to the Virani Provincial Adult Congenital Heart (VPACH) program. The post pandemic surge of individuals requiring ACHD care, plus implementation of an electronic health record connecting patient records across the pediatric and adult clinics, created the opportunity to redesign and optimize an ‘attachment process’ to maintain connections with youth at risk of gaps in care.

     

    Description:

    This quality improvement initiative will describe a structured approach to support individuals and families in ‘the gap’ -- the time youth spend in the transfer stage post final clinic visit in pediatrics and prior to the first appointment in the adult clinic. The goal for this project is to over come barriers to attachment by supporting the ongoing transition process and by providing information for knowledge development and encouraging self management skills

     

    The key components of this initiative includes:

    • Creation of a ‘push system’ of information flow from the pediatric clinic to VPACH.
    • Implementation of an anticipatory guidance document to make transparent the role and expectations from adult clinic.
    • Early initial telephone contact to verify contact information and establish the relationship between youth/family and the VPACH clinic.
    • Supplying a welcome package to support ongoing understanding of CHD condition and maintenance of a healthy lifestyles.
    • Scheduled telephone or virtual contact to check in on progress with transition process supported with a standardized transition note to document progress.

     

    Significance:

    Initial feedback is that this standardized process supports youth/families in ‘the gap’ – a potentially vulnerable period that places individuals at risk for lapses in cardiac care. It is important in this current environment where increases in demand for services coupled with unchanged resources require resourcefulness in delivery of transition care.

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  • Claire Chadwick, Bill McMillan, Jamie Hack, Leeann Taylor, Doris Huang, Dr. Preety Salh, Crystal Martin

    Background/Objectives 

    In 2021, BC’s Representative for Children and Youth (RCY) issued a report entitled “Excluded: Increasing Understanding, Support and Inclusion for Children with FASD and their Families”. The report revealed significant inequities in service availability for children and youth with FASD and a general lack of understanding. The report also highlighted structural racism and referral bias that often inappropriately propels Indigenous children toward an assessment of FASD over any other neurodevelopmental disorder (NDD). The Complex Developmental Behavioural Conditions (CDBC) program has been mandated by BC’s Ministry of Health to address systemic bias in referral processes and decrease wait times for assessments.  This research examines the structural and systems barriers that impact the age at which a child is referred to a NDD assessment.  

     

    Description 

    Based on an analysis of a sample of referrals in Northern Health Authority, significant differences arise in referral patterns between children living in remote/rural communities, as compared to those in more urban settings. The median age at referral for children from remote/rural communities is significantly older than their urban peers. Similarly, proportionally less children in remote/rural communities are referred to BCAAN prior to their 6th birthday compared to the general BC population. However, inequity is not solely tied to the nature of a geographic community; unique forms of inequity also exist within urban communities, and across all geographies.  

     

    Significance 

    There is a significant need for action to ensure that families who wish to pursue a diagnosis for their child can do so as early as possible. Outlining barriers to referral, and understanding the impact, is paramount to supporting the wellbeing of children, youth and families as, in BC’s current system, a diagnosis can provide access to increased services and supports. Moreover, understanding the barriers to referral will allow for evidence-based quality improvement initiatives that promote equity throughout BC. 

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  • Alene Toulany

    Background: The transition from paediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, as well as its applicability across chronic conditions, primary care involvement, and health equity considerations.

    Objective: This study aims to establish a key set of nationally relevant consensus-derived quality indicators for transition to adult care that are applicable across chronic physical, developmental, and/or mental health conditions, clinical care settings, and health jurisdictions in Canada.

    Description: Using an integrated knowledge translation (iKT) approach, a panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team to ensure the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition, and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian healthcare context.

    Significance: This study will produce a key set of quality indicators to evaluate and inform action to improve transition from paediatric to adult care for youth and their families equitably in Canada. Determining the most beneficial metrics from the perspectives of various stakeholders, most importantly youth and parents/caregivers, is a fundamental step to identifying areas for improvement in transition, evaluating current processes, benchmarking across jurisdictions, and optimizing health outcomes for youth with chronic conditions into young adulthood.

    Dissemination: Working with our iKT panel, we will use our partnerships with knowledge users and partner organizations to disseminate study findings through a Canadian transition collaborative, presentations, social media, and peer-reviewed publications.

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  • Patricia Basualto, Angela M. Senevirathna, Ash Seth, Kenneth Fyie, Dr. Gina Dimitropoulos, Dr. Jennifer Zwicker

    Background:

    Despite commitments to the UN Convention on the Rights of Persons with Disabilities in reducing barriers to participation through access to services, children with Neurodevelopmental Disabilities (NDD) and their families face several challenges throughout the course of life when attempting to access early and timely healthcare services and support in Canada. Access to services is a modifiable barrier to improving overall health capacity from childhood onwards and achieving UN goals.

     

    Purpose: To describe disparities in access to services for children and youth with support needs (CYSN) and their families in British Columbia.

     

    Description:

    Hypothesis: Disparities in access to services and supports for children with NDD and their families are related to personal and environmental factors.

     

    Methods: Mixed-methods study to identify factors impacting access to disability supports.

    • Qualitative: Thematic data analysis will be conducted on 24 semi-structured interviews of service providers and decision-makers from Childhood disability services in British Columbia.
    • Quantitative: A retrospective longitudinal cohort study of children with NDD aged 0 to 18 using linked administrative data from British Columbia. Descriptive and regression modelling analyses will be performed.

    Ethical approval was granted by the University of Calgary Review Board (REB21-1597, REB 20-1872; REB20-1872_MOD1).

     

    Findings/results: Initial thematic analysis reveals emerging data patterns related to service awareness, eligibility criteria, access to services, changing needs, and awareness of services. Preliminary quantitative analysis indicates population sizes is large enough to have power to detect relatively small effects in variables of interest in regression models.

     

    Significance:

    Conclusion or implications for practice: Children with neurodevelopmental disabilities face barriers to participation in society when services and systems do not address their needs. Ninety percent of individuals with a neurodevelopmental disability need access to services and professional supports spanning health, education, and social services, but lack of access to these services is a critical gap impacting child development and child and family quality of life.

    Lived experiences of decision-makers and service providers can contribute to shaping meaningful administrative data analysis. Through our co-design approach with an advisory council, findings can inform recommendations to improve realized access to services and improve health capacity outcomes for children with NDD and their families through more equitable early childhood disability support programs.

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  • Angie Lim

    Angie Lim, RN, PhD(c), MN, BScN, BSc 

    angie.lim@sickkids.ca 

    SickKids Hospital 

    Toronto, Canada 


    Background/Objectives:

    The healthcare transition for adolescent and young adult (AYA) organ transplant recipients is a critical yet understudied period, marked by a shift from pediatric to adult-focused care. This transition process presents unique challenges, including adherence to immunosuppressive regimens and addressing psychosocial factors that impact long-term graft survival and patient well-being. The primary objective was to understand how AYAs prepare for and engage in the transition process. The secondary aim was to identify strategies for healthcare providers to support their psychosocial well-being.  

    Description:
    A constructivist grounded theory, Riding the Wave or Change: Transforming Through Transition, illustrates the complexity of AYA transplant recipients' experiences. This mid-range substantive theory has significant implications for practice, providing valuable insights for pediatric and adult healthcare providers to better support AYA patients and their families during this critical period. This research also fills a gap in the literature by addressing the underrepresentation of nursing voices in transition research and enhances nursing knowledge on the transition experience that can be used to inform policymaking, practice, and research in the field of healthcare transitions for AYA organ transplant recipients.  

    Significance:

    Solid organ transplantation is a lifelong condition that necessitates continuous medical management, rendering the experiences of AYAs who navigate these transitions of utmost importance. This study provided unique insights into the perspectives of AYAs themselves, as well as the viewpoints of their family caregivers and healthcare providers to foster the evolution of transition services. By harnessing the insights gained from this study and applying them to practice, we can strive towards creating a more thoughtful, responsive, and effective healthcare environment for AYAs with solid organ transplants as they navigate the complex journey of transitioning to adult-focused care. This study offers valuable insights into developing self-management skills throughout this process, equipping healthcare providers with a compass to navigate the complex landscape of supporting AYA transplant recipients as they navigate the uncharted seas of adult care. The findings derived from this study hold substantial practical implications for AYA transplant recipients, their families, and healthcare teams to inform future research endeavours and potential avenues for enhancing the experiences of AYAs during their transition to adult care. By cultivating a more comprehensive understanding of the challenges and triumphs experienced by AYA transplant recipients, we can contribute to the ongoing development of responsive and supportive healthcare practices that cater to the unique needs of this population. 

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  • Eloise Czekalla, Kealey Clarke, Christopher Forrest, Susan Stinson-Lypka, Johanna Riesel

    The COVID-19 pandemic led to resource constraints impacting Paediatric Intensive Care Unit (PICU) bed availability. These resource constraints impacted the ability to complete surgical cases which required a post-operative PICU admission and overall surgical throughput. This barrier required a creative solution to continue to complete backlogged surgical cases. An interdisciplinary team of clinicians met to develop clinical criteria that would allow stable craniofacial post-operative patients to be admitted to the inpatient ward following a Post-Anesthetic Care Unit stay, bypassing PICU care. This new care pathway has resulted in a reduction in length of stay and fiscal resource conservation, with no negative impact to patient care. There were no escalations in the care required for the patients who followed the new care pathway. A Plan-Do-Study-Act quality improvement methodology was used, with retrospective chart reviews providing information on metrics. The results of this small cohort study highlight the importance of innovative and iterative thinking when examining care pathways for our patients in resource limited times.  

    Our poster will demonstrate our background context, process, data, & outcomes.

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  • Amie Nowak, Tessa Diaczun, Esther Lee

    BACKGROUND: In British Columbia, Canada, the BC Children’s Hospital Complex Care program (CCP) serves children living with health complexity (CHC, children with medical and psychosocial complexity). Up to 2021, the CCP had only part-time clinicians (physicians (MD) and a nurse practitioner (NP)). As a pilot project, we hired a full-time registered nurse. The role of the Nurse Key Worker (NKW) was to provide care coordination: 1. Arrange and support interprofessional team meetings, 2. Liaise with community supports, 3. Support service navigation across sectors (health, education, and social services). The NKW was to provide direct clinical and psychosocial support to families within an RN scope.

     

    OBJECTIVE:

    With the addition of a Nurse Key Worker

    1. To improve care coordination to children with health complexity

    2. To build trusting relationships with caregivers and professionals of children with health complexity in order to improve communication and collaboration.

     

    DESIGN/METHODS:

    • Caseload of NKW: diverse sample of 30 families
    • Evaluation over 1 year
      • Demographics and encounters data
      • Family Experience with Care Coordination (FECC) and Patient-Reported Outcome Measurement Information System (PROMIS) Self-Efficacy Surveys
      • Care Coordination Measurement Tool (CCMT)
      • Strength, Weaknesses, Opportunities, Threats (SWOT) analysis
      • Semi-structured interviews with families

     

    RESULTS:

    FECC and PROMIS surveys

    • Completion rate: Baseline: 69%; 9-month: 54%
    • Families: very positive about the support received from CCP (baseline) and NKW (9-month)

     

    CCMT

    • Within each encounter, NKW performed more activities and addressed more issues compared to the NP.
    • NKW encounters were generally <30 minutes while NP encounters were <10 minutes
    • 50% of MD’s encounters could have been done by an RN

     

    SWOT

    • Strength: “This care is what has been needed by families for a long time. Families are now able to receive more continuity and support, hence reducing the strain on other staff and allowing them to focus on more medical management.”
    • Threats: NKW burnout; Lack of permanent funding

     

    Semi-structured Interviews with families

    • “The [CCP] knows more about my child than anybody. It’s a relationship building over the years. We feel safe and understood when expressing our needs.”
    • “Since [the NKW] got involved, we haven’t had to go to the [emergency room]
    • “With the NKW involvement, I spend less time trying to understand who can and will talk to me. I don’t worry that no one will call me back.”
    • “[The NKW] makes sure we understand what was said and instructed by [clinician] when we are not sure. She understands and really cares for our family and helps us stay calm in very difficult situations.”

     

    CONCLUSION(S):

    • We submitted a business plan along with this pilot project info and was successful in securing permanent funding for two full time NKW positions.
    • We are working on applying for funding for a program evaluator so that the team members are not doing the ongoing evaluating work on top of their clinical roles.
    • We hope to continue to use qualily improvement lens with family oriented outcome measures once we have additional nurse key workers.

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  • Sandra Aiello, Navreet Gill, Conall Morgan, Rafa Alonso-Gonzalez, Danielle Massarella

    Background/Objective: The SickKids Cardiac Transition Program was implemented in August 2020, to support adolescents and young adults (AYA) with congenital heart disease (CHD) aged 14-17 years old, transitioning from pediatric to adult cardiac care. AYA are provided nurse-led, one-on-one, in-person and/or virtual, transition education sessions with a focus on CHD knowledge, self-management behaviours and self-advocacy skills. Upon completion of each session patient satisfaction, a common indicator of successful transition, is assessed. Thus the goal of this quality improvement project is to describe patient satisfaction with the Cardiac Transition Program.

     

    Description: To assess patient satisfaction with the cardiac transition program, as per the program’s quality improvement evaluation plan, a 25-item survey was adapted from a pre-existing, SickKids transition program. The survey was developed in REDCap (Research Electronic Data Capture), a web-platform designed to manage online databases. Survey items included overall satisfaction with education sessions, satisfaction with session content, and likelihood of recommending the program to AYA with CHD. A link to this online, optional, anonymized survey was emailed to AYA within 24 hours of their cardiac transition education session. A total of 120 survey responses were received from AYA from October 2020 to April 2023. Respondents were satisfied with their overall cardiac transition education session (99.2%), felt they received enough information (97.5%), would recommend the sessions to others (94.1%), and felt the sessions addressed their questions (99.2%). Of the 120 responses, 23 evaluated virtual transition sessions. These respondents felt virtual sessions were convenient (95.7%) and economical (86.9%). However, 43.5% felt neutral about attending future virtual transition sessions. Sessions were most liked because they were easy to follow, provided tailored content, were informational, and encouraged independence. Participants indicated that they least liked the time it took to complete each transition education session.

     

    Significance: Assessment of patient satisfaction is a necessary component in the evaluation of program delivery and content, to ensure the program is engaging and meets the needs of patients. Overall, most participants in the SickKids Cardiac Transition Program report being satisfied with the transition education sessions. While satisfaction is an important indicator of program success, future program evaluation will consider indicators such as, patient transition readiness, quality of life and CHD knowledge.

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  • Victoria Foxall, Megan Thomas, Mitchell Mathieson, Momina Raja, Joanna Holland, Isabel Smith

    Background: Healthy sleep is important for physical and mental well-being. It helps healing, promotes a good immune response, and positively modifies pain perception and resilience. These are important factors for children admitted to hospital. Research evidence suggests that the environment, how unwell someone is feeling, and care routines, all affect sleep in hospital. As a parent is often staying with their child in hospital, their sleep is also disrupted, reducing their ability to patiently support their child, manage their own emotions and anxiety, and meaningfully engage in important healthcare decisions. Sleep problems are also common for people of all ages at home. Contact with families while they are in hospital presents an ideal opportunity to provide information about ways to improve sleep.

    Description: We conducted a mixed methods study exploring the sleep experiences of pediatric in-patients and their co-resident parents on the Pediatric Medical Unit (PMU) at the IWK Health Centre in Halifax, and at home after discharge. Purposive sampling was used to try and achieve maximum variability and ensure inclusion of children with a range of ages, physical and mental health care needs, family structures and backgrounds, and geographical locations. We collected sleep measures (sleep diaries, sleep habits questionnaires, Pittsburgh Sleep Quality Index, Stanford Sleepiness Scale and actigraphy), activity measures (time-use diaries), mood (Ottawa Mood Scale), disruptions experienced (Potential Hospital Sleep Disruptions and Noises Questionnaire), and light and sound recordings. Five parents (2 fathers and 3 mothers) also completed semi structured interviews. A survey of healthcare providers conducted through REDCap explored personal experiences of sleep and knowledge of sleep promoting and disrupting factors on the PMU.

    Significance: Despite many of the factors shown to persistently disrupt sleep being well known, potentially straightforward modifications to the environment had not been made. Current hospital routines, timing of staff changes, scheduling of vitals checks and prescribed interventions, had not been designed with children’s normal sleep routines in mind. Restrictions associated with the COVID-19 pandemic presented further challenges to achieving healthy sleep. Parents’ knowledge of good sleep habits and how to optimize sleep while their child was in hospital was very variable.

    Both staff and parents had many excellent, achievable suggestions, some of which have already been implemented and others need to be carried out more consistently by all staff. Although we did not provide families with specific information about sleep during this study, the measures raised their awareness of positive sleep habits, and some parents reported subsequently modifying their sleep habits with good effect. A ‘Translating Research Into Care’ project is now underway to implement positive changes, ensure their consistent adoption and explore solutions for some system-based challenges. We will also develop information resources. Improving healthy sleep for pediatric inpatients and their guardians will not only improve the quality of care, but it also has the potential to reduce lengths of stay, reduce medication use and increase healthcare provider satisfaction. Findings from this study are likely to be applicable to other in-patient settings in Canada.

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  • Caitlin Muhl, Kate Mulligan, Imaan Bayoumi, Rachelle Ashcroft

    Social prescribing is defined as “a means for trusted individuals in clinical and community settings to identify that a person has non-medical, health-related social needs and to subsequently connect them to non-clinical supports and services within the community by co-producing a social prescription – a non-medical prescription, to improve health and wellbeing and to strengthen community connections”. At the heart of social prescribing is the simple action of flipping the script from ‘what’s the matter with you?’ to ‘what matters to you?’. Social prescribing is especially important for children and youth, as it is well understood that this population is particularly vulnerable to the effects of the social determinants of health and health inequities, and that intervening at this stage of life has the greatest impact on health and wellbeing over the life course. Despite the clear rationale to target children and youth in social prescribing efforts, this population has largely been neglected in social prescribing research, policy, and practice. However, several evaluations of social prescribing for children and youth have emerged in recent years, which calls for a review of the evidence on this topic. Thus, the objective of this scoping review was to map the evidence on the use of social prescribing for children and youth. This review was conducted in accordance with the JBI methodology for scoping reviews. The search strategy aimed to locate both published and unpublished literature. No language or date restrictions were placed on the search. Altogether, 12 databases were searched, including MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), AMED (Ovid), ASSIA (ProQuest), Sociological Abstracts (ProQuest), Global Health (Ovid), Web of Science (Clarivate), Epistemonikos, JBI EBP Database (Ovid), and Cochrane Library. Additionally, several sources of gray literature were searched, including Google, Google Scholar, Social Care Online, SIREN Evidence and Resource Library, and websites of social prescribing organizations and networks. Furthermore, a request for evidence sources was sent out to members of the Global Social Prescribing Alliance. Two independent reviewers performed title and abstract screening, retrieval and assessment of full-text evidence sources, and data extraction. This review fills a gap in the literature by mapping the evidence on the use of social prescribing for children and youth and by identifying knowledge gaps that need to be addressed in future research. 

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  • Roxanne Hook, Vera Riss, Nathan Ma, Scott Walker, Ashleigh Neault, Devan Scharrer, Shirley Law

    Stability of Midazolam Stored in Polypropylene Syringes for 92 days at Room Temperature (25°C)

    Ma NH1, Hook R2, Riss V2, Neault A2, Scharrer D2, Law S1, Walker SE1.

    Departments of Pharmacy, Sunnybrook Health Sciences Centre1, and Hospital for Sick Children2. Toronto ON.

    Background: Inpatient pharmacies often require concentrations of sterile products that are not commercially available. In order to meet patient needs, these must be compounded and assigned an appropriate beyond-use-date (BUD) as per NAPRA standards.

    Objectives: To evaluate the chemical stability of midazolam prepared in BD polypropylene syringes undiluted (5 mg/mL); diluted in 5% dextrose (D5W) to concentrations of 0.2 and 1.0 mg/mL; and diluted in 0.45% sodium chloride to concentrations of 1.0 and 2.0 mg/mL.

    Methods: On study day 0, 50 mL BD polypropylene syringes containing midazolam undiluted and diluted in 0.45% sodium chloride and 30 mL BD polypropylene syringes containing midazolam diluted in D5W were prepared. These were stored at room temperature without protection from light. The concentration of midazolam was determined using a validated stability-indicating liquid chromatographic method with UV detection on study days 0, 2, 7, 14, 21, 28, 42, 56, 72, and 92. Chemical stability was based on the intersection of the lower limit of the 95% confidence interval of the observed degradation rate and the time to achieve 90% of the initial concentration.

    Results: The analytical method separated degradation products from midazolam such that the concentration was measured, specifically, accurately (deviations from known averaged 1.82%), and reproducibly (replicate error within a day averaged 0.30% and between days averaged 0.75%). A second estimate of between-day reproducibility, the standard deviation of study samples, averaged 0.42%. Analysis of variance identified differences in percent remaining due to diluent (p=0.005) and concentration (p=0.037) but not study day (p=0.652). Multiple linear regression identified significant differences in percent remaining due to diluent (p<0.001) and initial concentration (p<0.001). The study was capable of detecting a <1.0% difference in percent remaining due to variables. The calculated BUD exceeded the 92 day study duration for all concentrations and diluents.

    Conclusion: Undiluted midazolam; midazolam diluted to 0.2 and 1.0 mg/mL in D5W; and 1.0 and 2.0 mg/mL in 0.45% sodium chloride stored in polypropylene syringes were stable for at least 92 days when stored at room temperature without protection from light.

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  • Christine Cassidy, Amanda Higgins, Britney Benoit, On behalf of the integrated care study team n/a

    Background & Objectives: Integrated models of care coordinate services across multiple health care providers, services, and organizations, while prioritizing patient and family needs and preferences. Despite the benefits of integrated care, most health services operate in siloes. In Nova Scotia, pediatric care is divided by subspecialty clinical service and teams often function independent of one another, posing challenges for patients and caregivers in navigating health services. The objective of this study was to identify strategies to support the integration of pediatric care in Nova Scotia from the perspective of youth, caregivers, health care providers, and health system administrators.

     

    Description: We used a qualitative descriptive design and conducted semi-structured interviews with 46 participants (9 youth, 18 caregivers, 14 health care providers, and 5 administrators) in Nova Scotia. Participants were recruited through stratified purposeful and convenience sampling. All interviews were conducted virtually on Zoom, audio-recorded, and transcribed verbatim. Data were first analyzed using directed content analysis guided by the Integrated Care Framework’s 7 dimensions: person-centred, clinical, professional, organizational, systemic, functional, and normative. Next, data were further examined using inductive thematic analysis to identify strategies to facilitate the integration of pediatric care in Nova Scotia.

     

    We identified four key themes related to strategies for integrating pediatric service delivery in Nova Scotia: Shared Communication, Integrating Patient and Family Needs; Integrating Health Care Providers; and Integrated Care Infrastructure and Resources. First, integrated care strategies should include timely and inclusive information sharing with ongoing communication among the patient, families, and care teams. Second, care coordination, inclusive scheduling and planning are key integrated care strategies to support medically and socially complex children and families. Third, supporting health care providers to work to their full scope is an important strategy to facilitate integrated care. Lastly, technology and infrastructure resources are needed to support the integration of care.

     

    Significance: This study identifies strategies for improved integration of care at the patient/family, provider, and organizational level from the perspective of youth, caregivers, health care providers, and health system administrators. Next steps include using these findings to co-design interventions to enhance the integration of care for pediatric service delivery in Nova Scotia. 

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  • Natasha Bruno, Eyal Cohen, Kayla Esser, Alene Toulany, Julia Orkin

    Background/Objectives: Transitioning youth with medical complexity (YMC) to adult health care poses significant challenges, demanding extensive effort and collaboration among paediatric and community providers, YMC and their families. Our objectives are to: (1) describe the feasibility of implementing a tri-partnership virtual handover involving the paediatric team, family physician and YMC/caregivers, (2) explore experiences with the tri-partnership virtual handover.

    Description: We will discuss the rationale, methods, findings, and implications of our feasibility study designed to facilitate a smooth transition for YMC in the Complex Care program at The Hospital for Sick Children. We used a descriptive, pre-post, mixed methods, prospective study design. The tri-partnership virtual handover consisted of a collaborative meeting involving the paediatric team (nurse practitioner and paediatrician), YMC, caregiver, family physician, and other relevant clinicians. This virtual handover served as a platform to prepare for transition and encompassed a comprehensive review of several key elements: (1) the YMC’s personalized care plan, medications, and technologies, (2) sub-specialist referrals, (3) allied health and community resources, (4) funding applications, and (5) questions and action items. A total of 19 tri-partnership virtual handovers were conducted. Participants were asked to complete a post-handover questionnaire to assess the feasibility of the intervention. Semi-structured qualitative interviews were conducted to explore perceptions of the intervention and the broader transition process. We found that tri-partnership virtual handovers were feasible, acceptable, accessible and valued among caregivers, family physicians and the paediatric team. Five themes were identified from the interviews including: (1) impact of the tri-partnership virtual handover, (2) importance of involving the family, (3) defining roles and setting expectations, (4) gaps in adult care, and (5) suggestions for improvement.

    Significance: Tri-partnership virtual handovers are a novel and effective approach to enhance communication, foster mutual understanding, and facilitate seamless transition for YMC among the paediatric team, family physician and caregivers.

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  • Erica Koopmans, Shannon Fjeldstad, Jennifer Toomey

    Background/Objectives: In 2018, a provincial guideline was developed to support the initial management of substance intoxication and withdrawal for children and youth who present to emergent care settings across British Columbia (BC). The extent of implementation varied across BC. As of early 2023, illicit drug toxicity is the leading cause of death for individuals aged 10 through 18 years in BC. Partners across BC expressed support to 1) review the scope, 2) strengthen the clinical guidance, and 3) develop a provincial strategy to bolster implementation which includes education, evaluation, and sustainability planning. The overall goal of the revised guideline is to increase access to standardized, developmentally appropriate, and culturally safe care informed by best and wise practices for children and youth presenting to acute care settings across BC for substance intoxication and withdrawal.

    Description: Administrative data on pediatric substance use presentations to acute care facilities in BC was reviewed and an updated evidence review on best practices was completed. An environmental scan was conducted, surveying awareness of the existing guideline and its use within BC. Awareness of the existing guideline was limited, only 16% of survey respondents had reviewed, and 59% did not know where to access the guideline. Only 1/4 of respondents were comfortable or very comfortable assessing youth presenting with intoxication or undergoing withdrawal for substances other than alcohol (e.g. opioids, benzodiazepines). Education received specific to substance intoxication and withdrawal for children and youth was extremely limited.

    A multi-disciplinary provincial working group was established to guide the update, with involvement from the BC Centre on Substance Use Youth Health Advisory Council who provided a youth lens. Three additional subgroups were established to develop content and supporting resources focused on 1) informed consent and information sharing, 2) substance specific guidance, and 3) Indigenous health and wise practices. The revised guideline was developed in recognition that this is an area of discomfort for many service providers and includes more detailed clinical guidance, new tools, and resources along with built in learning links to external educational videos and resources.

    Significance: Guidance on best and wise practices for acute assessment and treatment of child and youth substance intoxication and withdrawal is an evolving field. In strengthening clinical guidance we are supporting providers to deliver standardized, developmentally appropriate, and culturally safe care informed by best and wise practices. An implementation strategy will improve awareness and use of the guideline, and increase comfort and confidence in providing care to children and youth who use substances across acute care settings. The implementation strategy will be evaluated and quality indicators will be identified to support system improvements.

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  • Madison Friesen, Caroline Saunders, Viviane Josewski

    The Barriers for Rural Midwives: Decreasing Health Access Disparity for Rural Families Abstract

    Background and Aim: Rural and remote communities have well documented and identified issues accessing health services. In British Columbia maternity service closures, lack of trained perinatal staff and decreasing number of family physicians providing maternity care services accentuates rural health disparity. Midwifery care has been repeatedly shown to provide high quality maternal and newborn care and lower rates of intervention within the birthing period. However, midwives are not adequately integrated throughout the Canadian health care system. This integrative review aims to explore what are the types of barriers that midwives face who are practicing, or have attempted to practice, in a sub-urban community.

    Description: A search of electronic databases, including CINHAL, MEDLINE (Ovid) and Google Scholar, was undertaken. An integrative review, guided by Whittemore and Knafl’s method, was performed.  A total of ten articles were included within the review from countries including Canada, Scotland, New Zealand, and Australia. Following critical appraisal of the articles, thematic analysis was undertaken to identify the main themes related to the barriers to rural midwifery practice. Three main themes were identified regarding rural midwifery experience including personal barriers, professional barriers, and systematic barriers. Due to the rural locations included within the studies, geographical barriers were closely intertwined within each of the three themes. The findings from the review suggest that to improve rural communities access to midwifery services, rural planning committees and policy makers need to explore how to increase midwifery representation when planning for rural maternity sustainability.

    Significance: Rural and remote areas, which includes many Indigenous communities, face health access disparity. Midwifery has been shown to provide high quality maternal and newborn care and decrease interventions in the birthing period. The lack of maternity care services in rural and remote communities is associated with significant social, cultural, emotional, financial, and health risk including adverse maternal and neonatal outcomes. These risks can negatively affect maternal mental health during pregnancy and post-partum, which has a significant impact on the cognitive, social, and emotional development of the child. This integrative review identified several personal, professional, and systematic barriers for midwives who practice in rural and remote communities. The results of the integrative review found that increasing midwifery visibility within leadership, health planning services, and government roles may assist in improving the integration of midwives within rural communities. These measures align with the Canadian Family Centred Maternal and Newborn Care principles by keeping birth as close to home and respecting the unique needs of Indigenous communities.

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  • Mona Behrouzian, Genna Bonnor, Shealie Lock, Atoosa Mahmoudian, Mona Pei, Meriem Satra, Robyn Newell, Tim Bhatnagar

    Background/Objectives: Anterior Cruciate Ligament (ACL) injuries are a serious knee injury that are increasing in pediatric soccer athletes, with over 2 million ACL injuries occurring annually around the world. These severe injuries have permanent physical and psychosocial costs. Currently, there are no standardized biomechanical metrics that characterize ACL injury risk factors on-field, and most research is conducted in the lab, post-injury. This means that researchers miss out on a lot of data including how athletes move pre-injury, what athletes did that caused the injury, and how that translates to their movement post-injury.

     

    Description: To address this problem, our team has created a wearable, sensor-based device capable of measuring knee kinematics on-field. Our device is designed to capture the natural, unrestricted movement of pediatric soccer athletes and communicates that data to researchers. The device, which is entirely embedded within typical soccer equipment and logs the motion. The device prioritizes athlete safety, and ensures that athlete performance is unimpeded, all while collecting valuable data.

    Significance: Our device can help researchers use the on-field kinematics to better understand knee injury mechanisms and create standardized metrics of ACL injury risk factors. Our findings can also impact youth injury prevention strategies and programs. In the future, our device can be scaled-up to many youth soccer teams for longitudinal monitoring.

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  • Kristal Louie, Linlea Armstrong

    Background/Objectives:   Eighteen percent of children with cancer are born with a genetic predisposition to cancers.  There are ongoing efforts in many jurisdictions to grow and improve pediatric cancer predisposition syndrome (PCPS) services, so that the promises of preventative care are reached. As our ability to identify children advances, the population diagnosed with a PCPS grows.  Care provision must move from individualized and ad hoc, to organized and defined care models and pathways. The objective of the current poster is to gather authors from eight North American centres who are at various stages of emerging CPS services, to describe their approaches, successes, lessons, and challenges in a complex and quickly evolving realm that intersects multidisciplinary specialty and primary care. This work will inform quality improvement efforts within this group and other groups aiming to develop a patient and health care provider informed PCPS care model that is equitable and inclusive.  

    Description:   PCPS services at different maturation stages and positions provide mentorship through a compilation of descriptive and experiential data from the providers’ perspective.  We identified a range of approaches with some services having a dedicated clinic with a separate referral process while others are integrated into general genetics programs or hereditary cancer programs. Some services are able to support referrals for all children diagnosed with cancer while others have a narrow criteria. Some centers provide a one-time genetic assessment consult with risk management recommendations, while others also offer longitudinal ongoing risk management care. In some jurisdictions, primary care providers play a big role in the ongoing risk management.  Maintenance of databases and/ or registries (clinical and/ or research) is variable.   For some jurisdictions there are recognized challenges or gaps in the practices and infrastructure required to maintain the currency of diagnostic assessments and risk management recommendations especially in an area of care that is evolving so quickly.  Some services have experienced operational challenges with workload and staffing.   

    Significance: By comparing and contrasting the experiences of the eight services it is recognized that needs are met variably in different jurisdictions.  The data informs basic definitions and graphic representations of the patient and family care needs that will support conversations when patients, families, primary providers, oncologists, geneticists, database professionals, administrators, quality improvement experts, and researchers engage in the further phases of service design and delivery.  Our outcomes will support discussions about CPS models, and how services that use periodic follow up, versus a database, versus a registry, may be addressing similar and different goals of care with each of their service components. 

     

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  • Valeria Dimitrova, Ellen Song, Maria Paula Jaramillo, Vanessa Viltakis, Sue Bennett, Stephanie Sutherland, Dennis Newhook

    Background: The COVID-19 pandemic has disproportionately negatively impacted inner city children, youth and families who were already experiencing health and social inequities. One in five children in Canada lived in poverty before the pandemic and this number is projected to rise over the next five years. In the early stages of the pandemic, the rate of food insecurity among families with children was 19.2%, almost double the 2018 rate (Pinto et al., 2022). Access to food was made more difficult by limited availability of school-based breakfast programs due to school closures and under-resourced food banks requiring appointments for food pick-up. The Vanier Social Pediatrics Hub, a community-based organization in Ottawa, Canada offers accessible integrated health and social care for underserved, high needs children and youth living in a vulnerable community. Whilst their health and social needs were compounded by the pandemic, the Hub was closed to on-site appointments. To continue supporting Vanier’s children and youth, the Hub sought assistance from local medical students at the University of Ottawa, who were restricted from in-person hospital rotations and were seeking social medicine exposure in the community. This partnership led to the creation of More Than Just Soup (MTJS), a student-led home visiting program. MTJS addresses several social determinants of health for children, youth, and their families — namely food and financial insecurities, access to health and social services, education, and social isolation — while also giving medical students a hands-on learning experience. Objectives: As needs have shifted throughout the past few years, MTJS aims to transition from an emergency humanitarian response initiative to a long-term sustainable program between the Hub and medical students. A formal quality improvement evaluation plan has been developed to assess program effectiveness and sustainability. We will administer surveys to four major stakeholders: (1) families receiving home visits, (2) medical student home visitors, (3) Hub staff (including pediatricians, nurse practitioners, social workers, etc.) and (4) food bank staff. Description: Currently, over 70 families and 45 medical students have been part of the MTJS program. The authors’ anecdotal experiences demonstrate that a community partnership led by medical students can positively impact the health and well –being of children, youth, and their families living in a vulnerable community. Significance: This project contributes to the growing literature regarding the importance of the integration of health and social services for children, youth, and their families in the community for holistic and comprehensive care and how this may improve population health and address health inequities.

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  • Cathy Masuda, Armansa Glodjo, Marilyn Noort, Claire Chadwick, Jamie Hack, Angie Ip, Tanya Carew, Kenneth Cole, Doris Huang, Cynthia Vallance, Pamela Wong

    Background and Objectives:

    Research shows that early access to Autism Spectrum Disorder (ASD) interventions leads to better health outcomes for children diagnosed with ASD.  It is recommended that, if possible, a diagnosis is made during the preschool years.  Currently, the median age of diagnosis for a child referred to the BC Autism Assessment Network (BCAAN) is 7.33 years of age.  This is due in part to increasing rates of referrals, and a finite number of funded assessments per year. 

    Description:

    BCAAN initiated a streamlined assessment ‘pilot program’ (SAP) focused on the assessment of minimally verbal children less than 43 months old, where their symptoms are clearly described as concerning for ASD.  The SAP aimed to enable shorter clinical appointments for this age group of children; thereby, increasing the number of children that would be able to receive ASD assessment at a younger age.

    To date, 135 assessments have been completed through the SAP program. Based on a sample of the initial 6 months of assessments (n = 37) 3 key findings were exhibited:(1) efficiency of assessments, (2) satisfaction of clients, families and BCAAN clinicians, and (3) increased capacity through a new service delivery model.  From the findings, results showed wait times were decreased by 28.4%, 97% of families were satisfied/very satisfied with the diagnostic process, and there was a 90% increase in number of the assessments completed.

    Significance:

    Early identification and diagnosis of autism can allow children, and their families, to access early intervention services. This is especially important in BC, where many services and supports are connected to a diagnosis. By implementing the SAP program, BCAAN has allowed more Autistic children/children with autism, to access support and to develop understanding about their functional needs.

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  • Rukevwe Onororemu, Caroline Sanders, Jonathan Alschech

    Background/objectives

    In Canada, the British Columbia College of Nurses and Midwives requires baccalaureate registered nurse education programs to deliver a generalist curriculum meeting entry-level competencies. To this end, registered nurse education programs deliver theoretical content and provide opportunities for hands-on experience with patients of all ages through clinical rotations. Difficulties associated with securing acute care clinically focused placement opportunities in pediatric settings, as documented in the literature, has led to creativity in developing and/or seeking out experiences that enable nursing students to experience caring for and interacting with this population group. While it is reasonable to conclude that an absence of pediatric theoretical and clinical content from the curriculum delivered by nursing education programs may limit students’ ability to meet the required competency for generalist practice, an understanding of the importance of the pediatric practicum experience from the perspective of nursing students may provide insight into its value as part of required learning for soon-to-be registered nurses.

    Description

    The purpose of this study was to explore students and new graduates’ experiences of acute and community pediatric clinical practicum as part of their B.C. nursing education program. Participants in this study were distributed across the province, representing the North, the Interior, and the Lower Mainland. The decision to focus on the students as participants centered on the need to elevate and liberate their voices, as, despite being the main consumers of registered nurse education programs, their perspectives are largely missing from research exploring the pediatric practicum experience.

    Significance

    The key themes of building relationships and exposure to lived experiences illuminates the value that nursing students attributed to the pediatric practicum experience. Students appreciated the opportunity to not only connect with the children, adolescents, and their families, but also to gain insight into the experience of health and illness from their perspectives. Although students may have had the chance to work with children and youth as part of their broader clinical placements, the chance to concentrate on this population's needs, as well as those of their families and communities, continues to be a crucial part of developing generalist nursing competencies that meet regulatory requirements.

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  • Jennifer McTaggart, Laura Duncan, Lawna Brotherston, Zeb Demaiter, Natalie Raso

    Background/Objectives: The Child and Youth Mental Health (CYMH) Inpatient Unit at McMaster Children’s Hospital opened in 2009. With 22 beds, it’s one of the largest pediatric inpatient mental health units in the country, with an average length of stay of 7-10 days. Measurement-based care (MBC) is the evidence-based practice of systematic and standardized routine collection of Patient Reported Outcome Measures (PROMs), throughout the course of care to inform treatment decisions, engage patients in treatment, and for use in quality improvement and program evaluation. MBC is part of data-informed, patient-centred care. In recent years and following consultation with other departments across North America, the CYMH Inpatient Unit has taken the first steps towards MBC by implementing a data-informed approach. This poster describes and quantifies the results of three initiatives based on: 1) staff-reported, 2) family-reported, and 3) patient-reported assessments.

    Description: Staff-reported assessments were implemented in summer 2019 with staff assessing patient acuity at admission and discharge, using the Acuity and Psychiatric Illness Scale – Child and Adolescent Version (CAPI). The CAPI is a 20-item measure that asks staff to rate patients on 4 key domains: risk behaviours, psychiatric symptoms, functioning, and systems support. Analyses conducted in 2021 demonstrated a significant decrease in acuity at discharge in all domains (p<.0001). In fact, there was a significant decrease in the acuity of 19 of the 20 individual items. From a benchmarking perspective, our raw scores and pre/post change scores were comparable to a similar pediatric mental health inpatient unit in our region.

    Family/caregiver-reported assessments were implemented as a pilot in fall 2021 with caregivers being emailed a link to complete a questionnaire electronically. The questionnaire includes measures assessing Adverse Childhood Experiences (ACES), family functioning (Family Assessment Device), mental health symptoms, and general functioning (OCHS-EBS Brief scales + MH impact). Analyses in 2022 showed that our patients had high levels of exposure to toxic stress (Average ACES score of 4.40), poorer than average family difficulties, clinically elevated levels of emotional, behavioural, and attentional symptoms, and functional impairment.

    Patient-reported assessment measures (PROM) represent true MBC and also are the most challenging to implement in a busy, demanding work environment with many staff members and high levels of unpredictability. We are launching a pilot process to assess the feasibility of collecting and using PROMs upon admission and at discharge. These will include measures assessing anxiety, depression, risk (i.e., self-harm/suicidality and aggression), ACES, trauma, mental health symptoms, functioning, and parent-child relationship issues.

    Significance: With the push towards MBC as a best practice, it is incumbent upon pediatric mental health services to use multi-modal, multi-informant methods to inform, improve and evaluate care (i.e., diagnostic clarification, targeted treatment). Acute care is no exception, and we have been incrementally piloting, implementing and evaluating data-informed approaches to patient care. Completion rates remain our biggest issue across all domains. We continue to put measures in place to increase compliance (e.g., build the measure into the electronic medical record, conduct daily audits as part of a quality improvement initiative).

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  • Michelle Batthish, Karen Beattie, Liane Heale, Tania Cellucci

    Background: 

    The transition from pediatric to adult rheumatology involves acquiring higher level of independence. This transition period is associated with poor outcomes, prompting the development of transition programs to improve patient self-management skills. We aimed to assess how goal setting affects changes in transition readiness over time among adolescents with juvenile idiopathic arthritis (JIA) and juvenile systemic lupus erythematosus (jSLE). 

     

    Methods: Individuals with JIA and jSLE (age 14-19) were recruited from the pediatric rheumatology transition clinic at McMaster. Participants completed the TRANSITION-Q, a validated, self-administered questionnaire which assesses healthcare self-management skills, at the time of consent and at subsequent clinic visits. Questionnaires were scored from 0-100 with higher scores reflecting higher skills. Goal setting with a member of the healthcare team is based on responses to individual. 

     

    Results: Among 81 respondents with ≥1 follow-up, 52 (64%) were female, mean (SD) age 16.1 (1.2) years, and 67 (82%) had JIA. The mean baseline TRANSITION-Q score for females was significantly higher than males (60.4 vs 52.6; p=0.005). Over time, the mean increase in scores was similarly between sexes at follow-up (66.5 vs 58.8). 

     

    Conclusion: The TRANSITION-Q is a validated tool that can be used to track transition readiness. The scores can be longitudinally tracked and used to help set goals to guide self-management skills improvement. Baseline transition readiness was higher in females. Males and females do not appear to have the same trajectory of improvement across age groups, suggesting transition requires an individualized approach to self-management. 

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  • Michelle Batthish, Tania Cellucci, Liane Heale, Karen Beattie

    Background: 

    The transition from pediatric to adult rheumatology involves acquiring higher level of independence. This transition period is associated with poor outcomes, prompting the development of transition programs to improve patient self-management skills. We aimed to assess how goal setting affects changes in transition readiness over time among adolescents with juvenile idiopathic arthritis (JIA) and juvenile systemic lupus erythematosus (jSLE). 

     

    Methods: Individuals with JIA and jSLE (age 14-19) were recruited from the pediatric rheumatology transition clinic at McMaster. Participants completed the TRANSITION-Q, a validated, self-administered questionnaire which assesses healthcare self-management skills, at the time of consent and at subsequent clinic visits. Questionnaires were scored from 0-100 with higher scores reflecting higher skills. Goal setting with a member of the healthcare team is based on responses to individual. 

     

    Results: Among 81 respondents with ≥1 follow-up, 52 (64%) were female, mean (SD) age 16.1 (1.2) years, and 67 (82%) had JIA. The mean baseline TRANSITION-Q score for females was significantly higher than males (60.4 vs 52.6; p=0.005). Over time, the mean increase in scores was similarly between sexes at follow-up (66.5 vs 58.8). 

     

    Conclusion: The TRANSITION-Q is a validated tool that can be used to track transition readiness. The scores can be longitudinally tracked and used to help set goals to guide self-management skills improvement. Baseline transition readiness was higher in females. Males and females do not appear to have the same trajectory of improvement across age groups, suggesting transition requires an individualized approach to self-management.

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  • Jennifer Stinson, Tieghan Killackey, Fareha Nishat, Ellen Elsman, Lauren Kelenc

     

    Transition Readiness Measures for Adolescents with Chronic Illness:

    A Scoping Review of New Measures

     

    Tieghan Killackey1, Fareha Nishat1, Ellen Elsman1, Lauren Kelenc1, Jennifer Stinson1,2,3

     

    Affiliations: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada1; Institute of Health Policy, Management, and Evaluation, University of Toronto2; Lawrence S Bloomberg Faculty of Nursing, University of Toronto3

     

    Poster submitted by: Tieghan Killackey – tieghan.killackey@sickkids.ca

    Poster presenter: Dr. Jennifer Stinson – jennifer.stinson@sickkids.ca

     

    Would like to be considered for best poster award.

     

    Background/Objectives:  The transition from pediatric to adult care settings for adolescents and young adults living with chronic conditions can be challenging and has been associated with declines in health and access to care. Well-validated measures of patients’ transition readiness are critical, both for use in the clinical setting and to rigorously evaluate transition support programs for the purposes of research and health care quality improvement. This review aimed to build off existing reviews and 1) identify and describe all newly developed measures for the assessment of transition readiness for youth with chronic illness from the period of 2018-2022, and 2) evaluate their measurement properties and identify gaps in measurement testing.

     

    Description: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL and PsychINFO to identify articles developing and validating transition readiness in individuals aged 12-26 years with a chronic illness between 2018-2022. Two reviewers independently selected articles for review and assessed quality of measurement properties. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) updated criteria for good measurement properties was applied to rate the sufficiency of each measurement property. 22 studies met inclusion criteria reporting on 21 different tools. 9 studies reported on the development and evaluation of a new tool, and 13 reported on the adaptation, modification, and/or translation of an existing tool. The majority of adapted tools were translations and adaptations of the Transition Readiness Assessment Questionnaire (TRAQ) (n=7). While some of these studies demonstrated sufficient internal consistency, content validity, or structural validity, none met criteria for sufficient reliability, hypothesis testing or validity, and responsiveness was not assessed in any studies.

     

    Significance: Many new transition readiness measures continue to be developed in recent years, yet few have undergone rigorous psychometric evaluation. The TRAQ was the existing measure most often used as a model for developing new or modified tools. There remains a clear need for further validation of existing measures of patients’ readiness to transition.

     

     

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  • Barb Galuppi, Jessica Geboers

    Authors: Barb Galuppi1, Jessica Geboers2,3, Jan Willem Gorter1,4, Karen Cook5, Aline Bogossian6, Lin Li7, Alene Toulany8,9, Paula Robeson10, Danijela Grahovac2,3, Dilshad Kassam-Lallani2,11, Dayle McCauley3, Anne Fournier12.

    1 Department of Pediatrics, CanChild, McMaster University, Hamilton Canada

    2 Knowledge User, Ontario Canada

    3 School of Rehabilitation Science, CanChild, McMaster University, Hamilton Canada

    4 Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht The Netherlands

    5 Faculty of Health Disciplines, Athabasca University, Athabasca Canada

    6 École de travail social, Faculté des arts et des Sciences, Université de Montréal, Montréal Canada

    7 School of Nursing, McMaster University, Hamilton Canada

    8 Department of Pediatrics, University of Toronto, Toronto Canada

    9 The Hospital for Sick Children, Toronto Canada

    10 Children’s Healthcare Canada, Ottawa Canada

    11 Holland Bloorview Kids Rehabilitation Hospital, Toronto Canada

    12 Université de Montréal -CHU mere-enfant Ste-Justine, Montréal Canada

    Background/Objectives: Youth with Special Healthcare Needs (YSHCN) are at risk for experiencing service fragmentation and care gaps when transitioning from pediatric to adult services. A poorly planned and unsupported transition can lead to negative care experiences, poor health outcomes, costly hospitalizations, and health and social inequities. Since it was declared in March 2020, the COVID-19 pandemic has impacted nearly every aspect of our usual ways of living, creating even more disruption for YSHCN. We heard in practice from YSHCN and their parents that the pandemic had has had both negative and positive impacts on health and care experiences. However, it is unclear—beyond anecdotal evidence—how the pandemic has impacted YSHCN during their transition from pediatric to adult services. A better understanding of these impacts can be leveraged to optimize interventions to support the transition to adult services, while preserving the positive changes to health care services that came with the pandemic.

    In this patient-oriented research project, researchers, young adults, and parents have partnered to explore the impact of the pandemic on YSHCN between 16-24 years of age, during their transition to adult services. We aimed to understand the positive and negative experiences in healthcare transitions as well as co-occurring life transitions.

    Description: In Step 1 of the study, we conducted 21 interviews (17 English, 4 French) with YSHCN and their families. We used a rapid approach to qualitative analysis of interview data, which identified the ways in which the COVID-19 pandemic impacted the health of YSHCN during the transition to adult services. In Step 2, we developed a quantitative survey to expand and quantify the challenges and opportunities experienced by YSHCN and their families and to explore differences based on age, sex and gender, culture, ethnicity, and health conditions. The survey was informed by findings from Step 1, a literature review on the impacts of the COVID-19 pandemic on the lives of YSHCN, and input from the scientists, health care providers, young adult and parent partners on our research team and in the wider Children’s Healthcare Canada Transition Hub network. Available survey results from up to 500 YSHCN and families will be presented as: i) solutions that are working, ii) solutions that should be started, and iii) ideas for the future.

    Significance: Conference attendees will be invited to join our final end of study Knowledge Translation (KT) activity, a presentation and discussion of study findings during a Children’s Healthcare Canada Town Hall to be scheduled in December 2023/January 2024. From our collaborative work to gain a richer understanding of the pandemic experience, we aim to make recommendations to help improve healthcare experiences and transitional care interventions in the future.

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  • Barb Galuppi, Jessica Geboers, Jan Willem Gorter, Karen Cook, Aline Bogossian, Lin Li, Alene Toulany, Paula Robeson, Danijela Grahovac, Dilshad Kassam-Lallani, Dayle McCauley, Anne Fournier

    Background/Objectives: Youth with Special Healthcare Needs (YSHCN) are at risk for experiencing service fragmentation and care gaps when transitioning from pediatric to adult services. A poorly planned and unsupported transition can lead to negative care experiences, poor health outcomes, costly hospitalizations, and health and social inequities. Since it was declared in March 2020, the COVID-19 pandemic has impacted nearly every aspect of our usual ways of living, creating even more disruption for YSHCN. We heard in practice from YSHCN and their parents that the pandemic had has had both negative and positive impacts on health and care experiences. However, it is unclear—beyond anecdotal evidence—how the pandemic has impacted YSHCN during their transition from pediatric to adult services. A better understanding of these impacts can be leveraged to optimize interventions to support the transition to adult services, while preserving the positive changes to health care services that came with the pandemic.

    In this patient-oriented research project, researchers, young adults, and parents have partnered to explore the impact of the pandemic on YSHCN between 16-24 years of age, during their transition to adult services. We aimed to understand the positive and negative experiences in healthcare transitions as well as co-occurring life transitions.

    Description: In Step 1 of the study, we conducted 21 interviews (17 English, 4 French) with YSHCN and their families. We used a rapid approach to qualitative analysis of interview data, which identified the ways in which the COVID-19 pandemic impacted the health of YSHCN during the transition to adult services. In Step 2, we developed a quantitative survey to expand and quantify the challenges and opportunities experienced by YSHCN and their families and to explore differences based on age, sex and gender, culture, ethnicity, and health conditions. The survey was informed by findings from Step 1, a literature review on the impacts of the COVID-19 pandemic on the lives of YSHCN, and input from the scientists, health care providers, young adult and parent partners on our research team and in the wider Children’s Healthcare Canada Transition Hub network. Available survey results from up to 500 YSHCN and families will be presented as: i) solutions that are working, ii) solutions that should be started, and iii) ideas for the future.

    Significance: Conference attendees will be invited to join our final end of study Knowledge Translation (KT) activity, a presentation and discussion of study findings during a Children’s Healthcare Canada Town Hall to be scheduled in December 2023/January 2024. From our collaborative work to gain a richer understanding of the pandemic experience, we aim to make recommendations to help improve healthcare experiences and transitional care interventions in the future.

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  • Trevor Fowler, Anya Smith

    Background/Objectives: Developmental dysplasia of the hip (DDH) is a pediatric hip condition affecting 1-3% of newborns. Characterized by the presence of an abnormally developed hip socket(s), DDH progression can usually be reversed with minimal intervention if diagnosed early, with the most popular form of treatment being a harness. Missed cases can lead to severe orthopaedic conditions requiring invasive procedures to address, including the potential for a total hip replacement. DDH can be diagnosed with just a bilateral hip ultrasound scan (US) at as early as four weeks of life. Currently, infants province-wide are being referred to British Columbia Children’s hospital (BCCH) for an US and further clinical care related to DDH. This Quality Assurance/Quality Improvement project aims to provide baseline data critical to understanding the landscape of DDH care in BC.

    Metrics being assessed include: 1) Average age of infant at first US; 2) Risk factors/physical findings among infants referred for an US; 3) Distance travelled by patient families for DDH care at BCCH. Included were all children less than a year old who received an US at BCCH in 2020 or 2021 and were from a health authority (HA) in BC or the Yukon Territories.

    Description: 1953 patient records were abstracted, however 4 were excluded due to not belonging to BC or Yukon HAs, leaving a total of 1949 useable records. 33.2% of infants reside in an HA other than Vancouver Coastal. Median age at first US was 7.3 weeks (Range: 0.5-33.4 weeks). Top indications for US referral were breech position (65.2%), some form of hip irregularity (22.6%), firstborn status (10.0%), and family history of DDH (8.3%). 53.2% of all infants were female, however 79.3% of DDH+ infants were female.

    Results suggest some infants are receiving US screening for DDH beyond the recommended age range (4-8 weeks). Indications for US referrals match known DDH risk factors, with female sex  and hip irregularities being particularly common among infants diagnosed with DDH. Distance analysis shows most infants are travelling <50km for DDH screening, however 9.13% are travelling >50km and 3.25% are travelling >100km for screening.

    Significance: The results from this project provide crucial baseline information regarding current DDH screening accessibility and efficacy. While most patient families are travelling reasonable distances to receive screening, the burden faced by those families needing to travel great distances should not be overlooked. Additionally, we estimate there to be at least 600 infants with risk factors for which DDH screening status is unknown. These results provide an early justification of the need for a standardized care pathway for DDH screening and care in BC. The pathway will be designed to ensure equitable and accessible DDH care for infants across BC, with an emphasis on providing care near the home communities of families.

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  • Erica Qureshi, Kelly Nguyen, Quynh Doan

    Background/Objectives: In the face of our current healthcare crisis and difficulty accessing primary care, the emergency department (ED) is increasingly being used for non-urgent reasons such as healthcare navigation and managing chronic concerns. To identify solutions, it is essential to review the effectiveness of approaches that have been trialed. Thus, we have completed a scoping review to describe and assess the efficacy of initiatives undertaken to reduce the impact of non-emergent visits on the pediatric ED.

     

    Description: A literature search of four databases (Medline, Embase, EBM, and CINAHL) was completed to identify research published from the database inception until April 1st, 2023. Studies were included if they:

    1. focused on the pediatric ED, 
    2. defined non-emergent visits,
    3. discussed an intervention (hypothesizing it would reduce the impact of non-urgent visits), and,
    4. reported on the interventions impact.

    In total 11,078 articles were identified. Two reviewers completed screening; disagreements were resolved by consensus. The full text of 125 articles were screened and 19 studies (outlining 18 interventions) were identified. Included studies were published between 1996 and 2022. Most (n=13) were completed in the United States; all others were completed in Europe. 

     

    Several definitions were used to classify non-urgent visits; most studies (n=11) defined non-urgent visits by considering children’s triage assignment. In 8 studies a 5-point triage scale was used; 7 defined non-urgent visits as those assigned triage category 4 or 5, and 1 study defined non-urgent visits to only those assigned triage category 5. 

     

    The most common interventions aimed to increase access to primary care (n=8). Interventions included transferring patients from the ED to primary care settings (n= 3), integrating primary care within the ED (n=3), and providing resources to better connect non-urgent patients to their primary care provider (n=1). These studies were successful at reducing non-urgent pediatric ED utilization. Another common intervention (n=4) included implementing a ‘fast-track’ within the pediatric ED where non-urgent patients could be quickly transferred and treated. The creation of a ‘fast-track’ was found to be cost-effective and reduced pediatric ED length of stay. Finally, some interventions (n=3) aimed to improve parents’ health literacy to prevent future non-urgent ED visits. Only one of these studies, which provided parents education to use a health-aid book, reduced the number of parents who would use the ED as the first point of care. The other health literacy interventions did not show an improvement in health system outcomes.  

     

    Significance: This review highlights several interventions that have successfully reduced the impact of non-urgent visits on the pediatric ED. This evidence should be considered and adapted to the local care setting to ensure future initiatives are positioned to have the maximal impact.

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  • Nazeefah Laher, Julia Orkin, Sherri Adams, Blossom Dharmaraj

    Background/Objectives: 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. The objective of this study was to analyze CPs of CMC to assess how they are currently used to understand the child as a whole, through a thematic and visual analysis of the overview section of CPs and documentation of the presence of a photo in the child's CP.

    Description: 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 from 325 CPs demonstrate 4 emerging themes: about the child (e.g., temperament, interests), caregiver as a whole (e.g., caregiver’s role and feelings), living arrangements and family structure, and child’s care needs. Photos of the child were included in 58% of CPs.

    Significance: Results suggest that the overview section of CPs currently have a broad purpose. The overview section is broad and multifaceted and means something different to everyone. 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. Clear guidance is needed for there overview section to optimize it’s use.

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  • Michelle Roy, Judy Heilik, Leah Hammond, Curtis Perrott

    Background/Objectives: Sustaining new clinical practices following their implementation is a significant translational research challenge in healthcare centres. Recent conceptualizations move away from thinking of sustainability as the endpoint to see it as a dynamic process where practices are implemented, tested, and refined in the settings in which they are delivered.  At our rehabilitation hospital, routine program audits were introduced to both monitor the adoption of new pediatric-to-adult transition (PAT) practices and to trigger Plan-Do-Study-Act (PDSA) cycles to allow for adaptation of practices over time.

    Description: As part of a dedicated PAT improvement project, our hospital implemented PAT best practices across 14 clinical programs. Each program developed a tailored implementation plan (IP), designed to meet the unique clinical needs of their patient population. Programs were supported during the planning phase to ensure the proposed practice changes were feasible and inclusive. Following creation of the IP, an auditing checklist and audit schedule were developed by the PAT project lead and Transition Social Worker (TSW). The audit process included three steps: (1) TSW audited a random selection of up to 10% of patient charts and assigned a score based on evidence of completion. (2) TSW met with each program lead to discuss audit results. When audit scores were lower than 100%, the TSW initiated a PDSA cycle to adapt and improve implementation strategies. (3) The IP and audit checklist were updated accordingly.

    Eleven programs identified auditable PAT activities, ranging from 4-13 activities per program (M(SD) = 6.8 (2.7)). Those included both ‘one-time’ activities (M(SD) = 4.9(2.0); range=3-9) and ‘ongoing’ activities (M(SD) = 2.4(1.2); range =1-4,). The first round of audits is nearly complete with 10/11 audits performed. Average overall score for completed audits was 46.9% (SD =27.7%). Most programs (5/8; 62.5%) had not completely implemented one-time activities. PDSA cycles were initiated for nine programs and completed for seven programs.
     

    Significance: New clinical practices must be maintained and allowed to evolve in order to be sustained. To our knowledge, we are the first centre in Canada to simultaneously implement tailored PAT best practices across multiple pediatric programs. Using dedicated TSW time to conduct systematic and individualized audits and subsequent PDSA cycles as a means of continuously adapting new practices is a novel and accessible approach for health care centres. Initial audit data reveals that follow-through of intended practices is low. The integration of PDSA cycles into the audit process appears to facilitate identification of barriers and guide improvement of implementation plans. Ongoing monitoring of this project will be used to determine how many audit cycles are needed to support the implementation of all intended program activities and whether implemented activities are sustained over time.

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  • Marilyn Noort, Jamie Hack, Dr. Angie Ip, Claire Chadwick

    Background 

    In the last 5 years, referral rates to the BC Autism Assessment Network (BCAAN) have increased by 30 percent. As a result, the wait time has increased by approximately 40 percent in the last 5 years to 18 months provincially, despite BCAAN continuing to meet their funded number of assessments. Based on current funding structures, autism assessments must be administered by specifically trained physicians or psychologists and can take up to 9 hours. The required credentials and training limits the assessment capacity available within BC and prevents the workforce for meetings demands for assessments.  Many children who meet the criteria for autism miss timely access to specialized funding and services due to delayed assessment and diagnosis. The ECHO program is an evidence based model that can provide a community of practice to pediatricians to allow diagnosis of autism within their home community supported by specialized clinicians.

    Description

    This pilot project at BCAAN will begin by selecting highly symptomatic children under 6 years of age who have been referred for an ASD assessment and have significant support needs. These children will be selected through a triage process that involves a clinical review and a potential secondary screening from a speech-language pathologist (SLP). These children will receive a single two hour pediatrician appointment for two hours. The pilot project will initially support the areas with the highest waitlist: lower mainland communities and the northern health region.

    Objectives

    The project aims to increase the capacity for autism assessments while maintaining high quality and evidence based practices. The clinical time required for a complete assessment will decrease from 9 hours to 2 hours and the number of appointments a family is required to attend will decrease from 3 to 1. This will increase capacity of BCAAN while simultaneously improving the family experience.

    Significance

    The ECHO model will encourage knowledge sharing between clinicians, increasing the overall availability, consistency, and quality of autism assessment, especially in regions that have less specialized support. Families will have less travel time if they are able to receive a diagnosis in their own community in single appointment. Furthermore, community based assessments are more likely to be familiar with the types of support available locally. By focussing on the youngest children who are the most symptomatic, we are supporting the children and families who need the most support. These children and families will be able to access early intervention sooner and capitalize on the important window of early social and communication development.

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  • Angela M. Senevirathna, Patricia Basualto, Ash Seth, Gina Dimitropoulos, Jennifer D. Zwicker

    Background

    Neurodevelopmental disabilities (NDD) are a group of disorders that affect brain development and function (American Psychiatric Association, 2013). These disabilities can have a significant impact on an individual's daily life, affect their inclusion in society and may require specialized services and supports, particularly for youth who are transitioning from pediatric to adult services (Cobb & Alwill, 2009). However, there is a lack of comprehensive data and information on the transition from pediatric to adult services. The lack of data and information on health outcomes for individuals with NDD has been identified as a significant challenge (Horner-Johnson et al., 2022). Without comprehensive information, it is challenging to develop effective strategies to support individuals with complex needs and to ensure that services are delivered equally (Fisher et al., 2007). 

    Objective

    Identify the barriers that youth with NDD face when transitioning from pediatric to adult services. This study seeks to gain a better understanding of the factors that impact access to services among a heterogeneous NDD population.

    Description

    The study will utilize a mixed methods approach. Quantitative analysis will use a linked administrative dataset (n~100,000) from British Columbia and will identify pre-transition (15-18 years) and post-transition (19-25 years) factors impacting access to adult services. Individual and paired t-tests will be conducted to test for significant changes between groups and across transitions. Semi-structured interviews (n~13) will be conducted with service providers and decision-makers in CLBC and thematic analysis (Braun & Clarke, 2006) will be used to identify themes related to disparities in accessing services within the data, allowing for the exploration of complex phenomena in-depth. Data will be analyzed through a process of coding and categorizing (Nowell et al., 2017). Themes that emerge from the analysis will be used to inform the discussion of the quantitative findings.

    Results may indicate whether there is a significant change in healthcare utilization in the transition period. Interviews may reveal that youth with NDD face barriers in accessing appropriate healthcare services during the transition to adult care. These barriers could include limited availability of specialized providers, lack of coordination between paediatric and adult healthcare systems and difficulties in navigating the complex healthcare system.

    Significance

    The impact of this study lies in its potential to provide a robust understanding of the healthcare utilization patterns of individuals with NDD during the transition period and a deeper understanding of the contextual factors that may influence experiences during the transition period. Overall, the impact of this study could be significant in improving the lives of individuals with NDD and their families and in advancing the field of neurodevelopmental research.

    Please considerforbest poster award

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  • Dorothy Luong, Tomisin John, Sarah Munce, Katherine Bailey, Claire Barber, Michellle Batthish, Danijela Grahovac, Jan Willem Gorter, Kristin Cleverley, Gina Dimitropoulos, Sofiya Goroshko, Ruth Grimes, Beverly Guttman, Michèle L. Hébert, Dmitry Khodyakov, Lisha Lo, Dorothy Luong, Laura MacGregor, Sarah Mooney, Geetha Mukerji, Jacklynn Pidduck, Rayzel Shulman, Lisa Stromquist, Patricia Trbovich, Alene Toulany

    Background: The majority of current quality indicators for transition are patient-centred metrics, however, the involvement of youth and caregivers in their development has been overlooked. When included, youth and caregivers are often outnumbered by clinicians, making them less likely to raise their concerns and priorities, which often differ from those of the healthcare team. Youth not only want to be involved in their transition care planning, but also in designing and participating in transition research. Engaging youth and caregivers in both the design and implementation of transition research holds great potential to enhance its impact and relevance, benefiting all youth receiving transition services. Additionally, this inclusive approach helps shed light on equity issues within the transition process. An integrated knowledge translation (iKT) approach, defined as an active and dynamic collaboration between researchers and knowledge users, is one way to actively engage youth and caregivers throughout the research process.

    Objective: To incorporate an iKT approach into a study aimed at establishing a universally applicable set of consensus-derived quality indicators for transition to adult care applicable across chronic physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions in Canada.

    Description: An iKT panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team on a study that will produce a key set of quality indicators to evaluate and inform action to improve transition to adult care for youth and their families equitably in Canada. The iKT panel will convene regularly and actively participate in a process to ensure that the study methodology, materials, and knowledge dissemination strategies are suitable and reflective of the perspectives of youth and their families. Our team will explore the strategies needed to build meaningful partnerships and engagement in research with these knowledge user groups and help to lay the foundation for impactful advancements in the transition field.

    Significance: Determining the most beneficial metrics from diverse stakeholders, with a particular emphasis on the perspectives of youth and caregivers, is a fundamental step to identifying areas for improvement in transition, evaluating current processes, benchmarking across jurisdictions, and optimizing health outcomes for youth with chronic conditions. Monitoring engagement strategies and processes and outcomes as part of this project will identify important practices for building meaningful partnerships and engagement in transition research, enabling us to cultivate a more inclusive and effective framework for supporting youth and caregivers.

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  • Bryn Zomar, Kishore Mulpuri, Vuong Nguyen, SLIP Study Group, Emily Schaeffer

    Title:
    Variability in baseline patient presentation and initial management across centres and slip stability in a multicentre, international prospective Slipped Capital Femoral Epiphysis (SCFE) Registry

     

    Authors:

    Bryn O Zomar1,2, Vuong Nguyen1,2, Eduardo Novais3, David Bade4, Wubdhav Sankar5, Kevin Smit6, Debra Bartley7, Kishore Mulpuri1,2, SLIP Study Group, Emily K Schaeffer1,2

     

    1University of British Columbia, Vancouver, Canada

    2BC Children’s Hospital, Vancouver, Canada

    3Boston Children’s Hospital, Boston, USA

    4Queensland Children’s Hospital, Brisbane, Australia

    5Children’s Hospital of Philadelphia, Philadelphia, USA

    6Children’s Hospital of Eastern Ontario, Ottawa, USA

    7London Health Sciences Centre, London, Canada

     

    Background/Objectives:

    Incidence, and presentation of slipped capital femoral epiphysis (SCFE) varies across geographic regions and ethnic groups and may be influenced by certain risk factors. The purpose of this study was to examine variability in baseline presentation of patients presenting with stable and unstable SCFE at centres contributing to a multicentre international registry. 

    Description:

    Data from a prospective multicentre international SCFE registry was analyzed. Patients receiving a confirmed diagnosis of SCFE under 18 years of age without underlying conditions such as cerebral palsy, spina bifida or osteogenesis imperfecta were eligible for inclusion. A total of 15 centres across three countries (Canada, United States and Australia) contributed patients for analysis. Patient demographics, risk factors, hip affected, slip stability and initial surgical procedure were compared across all centres.

    In total, 335 patients (383 hips) were included (57.9% male). Average age at presentation was 12.2 years (SD 2.3), with mean age ranging across centres from 11.3 to 14.3 years. Unilateral left SCFE was most common (51.3%, 172/335), followed by unilateral right (34.3%, 115/335) and bilateral (14.3%, 48/335). Most slips were stable (71.5%, 274/383) and obesity was the most common risk factor, present in 36.4% (122/335) of cases. The most common initial surgical treatment across all centres was in situ pinning (46.6%, 151/324) while the next most common procedures differed across centres with the modified Dunn next most common at one centre (23.9%, 28/117), proximal femoral flexion de-rotation at another (20%, 16/80) and closed reduction pinning at another (15.4%, 4/26).

    When comparing with stable versus unstable SCFE, more patients with unstable SCFE had a family history of SCFE (23.2% vs 14.0%), traumatic precipitating event (67.0% vs 22.3%) and acute onset of symptoms (48.6% vs 16.1%). There were significantly more white patients (53.5% vs 35.6%, p=0.003) and fewer black patients (9.1% vs 18.6%, p=0.043) with unstable SCFE compared with stable SCFE. Patients with unstable SCFE also had a shorter mean duration of symptoms prior to diagnosis (9.5 weeks vs 16.6 weeks). Fewer patients with unstable SCFE were obese (29.3%, 29/99) than those with stable SCFE (39.4%, 93/236) though this was not statistically significant.

    Significance:

    This provides the first look at baseline clinical and demographic information from a large, prospective, multicentre registry. We identified key differences in symptom duration and intensity, slip severity, ethnicity and family history between patients with stable and unstable SCFE. The relative rarity of cases has been a significant limitation in the advancement of treatment for SCFE. This registry will allow for the enrolment of patients globally and will provide sufficient numbers to adequately answer important clinical questions in the future.

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  • Tim Bhatnagar, Yu Chi Lin, Mona Behrouzian, Karen Davies, Diane Wickenheiser, Lise Leveille

    Background/Objectives:

    Quality of motion (QoM) refers to the kinematic characteristics of a subject’s motion and how well potential for injury is minimized. Video feedback has been shown to be effective in improving the QoM of sports-movements. However, there is a lack of research quantifying QoM improvement using motion capture technology to observe lower extremity kinematics during sport-specific movements performed by children and youth (C&Y).

    The objective of this prospective study is to investigate and quantify the change in QoM of C&Y’s kinematics during knee-focused sporting maneuvers when coaching with video feedback is provided versus without coaching. We hypothesize that after coaching the QoM will increase, such that kinematic metrics will more closely match a kinematic profile that has decreased risk for knee injury, such as ACL tears.

     

    Description:

    Methods: Thirty participants will be recruited between the ages of 8 and 17 who have various levels of physical activity and are able to safely perform movements such as jumping, cutting, and shuffling. The QoM assessment will be conducted at The Motion Lab at Sunny Hill Health Centre, BC Children’s Hospital. Participants will perform 7 sport-specific movements while wearing retroreflective markers and being monitored by a motion capture system. To investigate the effects of coaching and video feedback, the participants will then be coached on best kinematic practices for executing each movement and will be asked to repeat the 7 sport-specific movements. Descriptive statistics will be used to compare 3D joint kinematics of the trunk, hip, knees, and ankles prior to, and following, the coaching intervention. Change in kinematic metrics will be used to assess the effect of coaching on QoM for the 7 sport-specific movements.

    Results: 3D kinematic graphs of the lower extremity will be generated to compare the participant’s change in kinematic metrics after receiving the coaching and video feedback. During landing and stance for all movements, we expect to see increased knee and hip flexion, reduced knee adduction, and increased trunk stability.

    Significance: Our study will demonstrate if coaching is able to improve a child’s QoM and potentially reduce risk of injury. The findings will have significant impact on youth injury prevention strategies and provide clinical recommendations in the fields of physical rehabilitation and coaching/training delivery.

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  • Aileen Blakeney

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  • Negar Vakili, Lori Wozney

    Background/Objective: The transition from child to adult mental health services is a vulnerable time associated with treatment disengagement and illness progression. Text-message based interventions might be leveraged to support motivational, informational, and behavioural needs of youth during this time. Evidence about youth preferences for intervention content and functionality are scarce but necessary to inform better service design. The primary goal of this study was to investigate the level of consensus among youth on important content, technology features, and engagement supports for a transition-focused text message service.

    Description: A cross-sectional online survey of youth in Canada aged 16-26 years collected information on demographics, current levels of technology use, importance ratings on message content, technical features, and barriers and enablers to engagement. Participants (n=100) were ethnically diverse (51% from non-white European background), aged 20-26 (59%), and who had first accessed mental health services when they were between 13-19 years of age (62%). The majority (90%) identified as daily text message users. A high level of consensus on importance ratings was reported in 45% of message content items. A high level of consensus on importance ratings was reported in only 20% of feature and functionality items. For 27% of youth, the most significant enabler for engaging with a transition-focused text message intervention was personalization of texts.

    Significance: This study is the first to systematically document youth preferences for a text message intervention aimed at supporting the transition to adult mental health and addictions services. Results of this study indicate that there are clear user preferences for certain kinds of message content over others. Health care organizations and service developers looking to leverage next-generation text message interventions for youth need to consider how low levels of consensus on some technology features may impact feasibility. Youth can (and should) play an integral role in the early development of these interventions. The findings of this study informed a “Design Jam” prototyping workshop event with youth where they worked in teams to design a potential text message intervention themselves. Results of this consensus study highlight how informational, motivational, or behavioural needs of youth can be translated and incorporated into novel mental health service designs.

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