COVID-19 vaccine acceptance and uptake among caregivers of children aged 5-11 years in Ontario, Canada: A cross-sectional survey.

INTRODUCTION: Although COVID-19 vaccine safety in 5-11-year-old children has been documented, half of Ontarian children this age remain unvaccinated. This study aimed to assess caregivers' vaccine acceptance for 5-11-year-old children and identify factors associated with vaccine non-acceptance. METHODS: A multi-language self-administered survey was sent to caregivers of 5-11-year-old children through schools and community health centers within the Greater Toronto Area from April-July 2022. Sociodemographic characteristics and immunization behaviours were collected for caregivers, their 5-11-year-old children, and any older siblings. The primary outcome, COVID-19 vaccine acceptance, was previous uptake of COVID-19 vaccine or caregiver intent to vaccinate for their 5-11-year-old child. Data were analyzed using descriptive statistics and multivariable logistic regression. RESULTS: In total, 807 caregivers were included in analysis. Although 93 % of caregivers had received two doses of COVID-19 vaccine, 77 % had a 5-11-year-old child who received at least one dose of vaccine. Caregivers age was associated with vaccine acceptance (vs. < 40 years; adjusted odds ratio [aOR] 2.1, 95 % confidence interval [CI] 1.4-3.1 for ages 40-49; aOR 2.8, 95 % CI 1.1-7.1 for ages ≥50 years). Immunization factors associated with vaccine acceptance included caregiver COVID-19 vaccination (aOR 38.1 vs. unvaccinated caregivers; 95 % CI 15.8-92.3), older siblings COVID-19 vaccination (aOR 49.2 vs. unvaccinated siblings; 95 % CI 18.3-132.3), and recent influenza vaccination for the child (aOR 6.9 vs. no influenza vaccine; 95 % CI 4.6-10.5). Among 189 caregivers with unvaccinated 5-11-year-old children, the most common reasons for non-acceptance were concerns about long-term side effects (59 %), lack of experience vaccinating children (41 %), and concerns that vaccines were developed too quickly (39 %). CONCLUSION: Acceptance of COVID-19 vaccination for 5-11-year-old children were associated with caregiver vaccine behaviors and sociodemographic factors. These findings highlight groups of caregivers that can be targeted for educational interventions and concerns that may be addressed to increase vaccine confidence.

Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study.

BACKGROUND: Nasogastric tube (NGT) feeding is used for children unable to tolerate adequate nutrition orally to sustain growth and development. This vulnerable population is at risk of gaps in care because they often lack a medical home due to the transitional nature of the technology. This study explores perspectives and challenges of family caregivers (FCs) of children requiring NGTs transitioning from hospital to home. METHODS: Semi-structured qualitative interviews were conducted with FCs at the Hospital for Sick Children and Children's Hospital of Eastern Ontario. Research ethics approval was obtained (SK REB# 1000064641, CHEO REB# 19/133X). Written informed consent was obtained. RESULTS: Thirteen interviews revealed FCs feeling overwhelmed and uncomfortable with first communication of the NGT but learned to manage NGTs with training and virtual care support over time. Initial transition home was described as challenging due to physical, emotional, and financial strain associated with constant management of NGTs. CONCLUSIONS: Our study describes the importance of emotional support and additional time for decision making during initial communication to FCs of their child's NGT need, and access to specialized healthcare professionals after transitioning home. Future programs should focus on personalized education and psychosocial support for FCs of children with NGTs at home. IMPACT: This study delves into the challenges faced by family caregivers (FCs) of children requiring nasogastric tube (NGT) feeding when returning home from the hospital. There is a pressing need for more time for FC decision-making and emotional support during the initial communication of the need for an NGT for their child. In addition, FCs require ongoing 24/7 support including access to healthcare professionals specialized in NGT care after the initial transition home. The study highlights the need for personalized education and psychosocial supports for FCs of children with NGTs to improve their experiences at home.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling.

OBJECTIVE: To describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health. DESIGN: A secondary analysis of prospectively collected data from 123 caregivers of children aged <16 years with medical complexity from a multicentre randomised trial conducted from December 2016 to June 2021. MAIN OUTCOME MEASURE: The Patient-Reported Outcomes Measurement Information System Global Mental Health Scale was used to measure caregivers' self-reported mental health well-being. Group-based trajectory analysis was used to identify clusters of caregivers with similar changes in mental health across 24 months. Logistic regression was used to identify child-related predictors of mental health among caregivers. RESULTS: A final model with three distinct groups was selected, corresponding to caregivers with average (n=39), moderately below-average (n=65) and severely below-average (n=19) mental health scores, all with stable trajectories and high posterior probabilities (>90%). Moderately and severely below-average caregiver mental health groups, merged into one group, were associated with a greater number of child medical technology devices (adjusted OR (aOR) 1.44, 95% CI 1.01 to 2.04), gross motor difficulties (aOR 3.51, 95% CI 1.02 to 12.05) and worse child emotional (aOR 0.93, 95% CI 0.87 to 0.99) and psychological well-being (aOR 0.93, 95% CI 0.88 to 0.99). CONCLUSION: Most caregivers of CMC reported persistently below-average mental health. The intensity of caregiving, as indicated by medical technology and child functional needs, is a potential risk factor for below-average caregiver mental health. Future design and evaluation of interventions focused on support for caregivers of CMC are warranted.

Viral dynamics of the SARS-CoV-2 Omicron Variant in Paediatric Patients; A prospective cohort study.

BACKGROUND: There are limited data on the viral dynamics of SARS-CoV-2 in children. Understanding viral load changes over the course of illness and duration of viral shedding may provide insight into transmission dynamics to inform public health and infection control decisions. METHODS: We conducted a prospective cohort study of children 18 years and younger with PCR confirmed SARS-CoV-2 between February 1, 2022 and March 14, 2022. SARS-CoV-2 testing occurred on daily samples for 10 days; a subset of participants completed daily rapid antigen testing (RAT). Viral RNA trajectories were described in relation to symptom onset and resolution. The associations between both time since symptom onset/resolution and non-infectious viral load were evaluated using a Cox proportional hazards model. FINDINGS: Among 101 children aged 2 to 17 years, the median time to study-defined non-infectious viral load was 5 days post symptom onset, with 75% meeting this threshold by 7 days, and 90% by 10 days. On the day of and day after symptom resolution, 43 of 87 (49%) and 52 (60%) had met the non-infectious thresholds, respectively. Of the 50 participants completing RAT, positivity at symptom onset and on the day after symptom onset was 67% (16/24) and 75% (14/20). On the first day where the non-infectious threshold was met, 61% (n = 27/44) of participant RAT results were positive. INTERPRETATION: Children often met the study-defined non-infectiousness threshold on the day after symptom resolution. RAT tests were often negative early in the course of illness and should not be relied on to exclude infection. CLINICAL TRIALS REGISTRATION: NCT05240183.

Caring for children with new medical technology at home: parental perspectives.

OBJECTIVES: This qualitative descriptive study explores the experiences of family caregivers (FCs) of children with medical complexity who are initiated on new medical technology in the hospital and transition to new daily life at home. The study aims to investigate FCs' response and readiness for medical technology use, the value of education and transition support and the challenges associated with managing new medical technology in the home. STUDY DESIGN: A qualitative descriptive approach was used to conduct and analyse 14 semistructured interviews with a group of FCs composed of 11 mothers and 3 fathers. Content analysis was used to analyse transcripts of the caregiver interviews. The study was conducted at a tertiary paediatric hospital in Toronto, Canada. RESULTS: Our study revealed three main themes: FC's response and readiness for medical technology use, the value of education and transition support for initiation of new medical technology and the challenges associated with managing new medical technology in the home. FCs expressed emotional distress related to coping with the realisation that their child required medical technology. Although the theoretical and hands-on practice training instilled confidence in families, FCs reported feeling overwhelmed when they transitioned home with new medical technology. Finally, FCs reported significant psychological, emotional and financial challenges while caring for their technology-dependent child. CONCLUSIONS: Our study reveals the unique challenges faced by FCs who care for technology-dependent children. These findings highlight the need to implement a comprehensive education and transition programme that provides longitudinal support for all aspects of care.

A qualitative exploration of parental caregivers' experience caring for children who have survived medulloblastoma.

BACKGROUND: Approximately 70% of children diagnosed with a medulloblastoma will become long-term survivors. Medulloblastoma therapy frequently causes long-term morbidities in survivors, which places a considerable burden on parental caregivers. We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. METHODS: We conducted a qualitative study using grounded theory thematic analysis. We used semi-structured parental caregiver interviews to explore family experiences, social circumstances, and family-reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada. RESULTS: Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6 years (range: 1-9 years) at diagnosis, and were 9.5 years (range: 5-12 years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long-term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long-term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future. CONCLUSIONS: Parental caregivers of medulloblastoma survivors experience long-term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.

Caregivers' Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis.

BACKGROUND: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. OBJECTIVE: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. METHODS: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2's features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. RESULTS: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. CONCLUSIONS: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

Paediatric inflammatory multisystem syndrome in Canada: population-based surveillance and role of SARS-CoV-2 linkage.

BACKGROUND: Paediatric inflammatory multisystem syndrome (PIMS) is a rare condition temporally associated with SARS-CoV-2 infection. Using national surveillance data, we compare presenting features and outcomes among children hospitalized with PIMS by SARS-CoV-2 linkage, and identify risk factors for intensive care (ICU). METHODS: Cases were reported to the Canadian Paediatric Surveillance Program by a network of >2800 pediatricians between March 2020 and May 2021. Patients with positive versus negative SARS-CoV-2 linkages were compared, with positive linkage defined as any positive molecular or serologic test or close contact with confirmed COVID-19. ICU risk factors were identified with multivariable modified Poisson regression. RESULTS: We identified 406 children hospitalized with PIMS, including 49.8% with positive SARS-CoV-2 linkages, 26.1% with negative linkages, and 24.1% with unknown linkages. The median age was 5.4 years (IQR 2.5-9.8), 60% were male, and 83% had no comorbidities. Compared to cases with negative linkages, children with positive linkages experienced more cardiac involvement (58.8% vs. 37.4%; p < 0.001), gastrointestinal symptoms (88.6% vs. 63.2%; p < 0.001), and shock (60.9% vs. 16.0%; p < 0.001). Children aged ≥6 years and those with positive linkages were more likely to require ICU. CONCLUSIONS: Although rare, 30% of PIMS hospitalizations required ICU or respiratory/hemodynamic support, particularly those with positive SARS-CoV-2 linkages. IMPACT: We describe 406 children hospitalized with paediatric inflammatory multisystem syndrome (PIMS) using nationwide surveillance data, the largest study of PIMS in Canada to date. Our surveillance case definition of PIMS did not require a history of SARS-CoV-2 exposure, and we therefore describe associations of SARS-CoV-2 linkages on clinical features and outcomes of children with PIMS. Children with positive SARS-CoV-2 linkages were older, had more gastrointestinal and cardiac involvement, and hyperinflammatory laboratory picture. Although PIMS is rare, one-third required admission to intensive care, with the greatest risk amongst those aged ≥6 years and those with a SARS-CoV-2 linkage.

Screening for psychosocial risk in caregivers of children with medical complexity during the COVID-19 pandemic: a cross-sectional study.

OBJECTIVE: The primary objective was to quantify psychosocial risk in family caregivers (FCs) of children with medical complexity (CMC) during the COVID-19 pandemic using the Psychosocial Assessment Tool (PAT). The secondary objectives were to compare this finding with the average PAT score of this population before the COVID-19 pandemic and to examine potential clinical predictors of psychosocial risk in FCs of CMC. DESIGN: Cross-sectional study. PARTICIPANTS: FCs of CMC were recruited from the Long-Term Ventilation Clinic at The Hospital for Sick Children, Toronto, Ontario, Canada. A total of 91 completed the demographic and PAT questionnaires online from 10 June 2021 through 13 December 2021. MAIN OUTCOME MEASURES: Mean PAT scores in FCs were categorised as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic and clinical variables on overall PAT scores was assessed using multiple linear regression analysis. Comparisons with a previous study were made using Mann-Whitney tests and χ2 analysis. RESULTS: Mean (SD) PAT score was 1.34 (0.69). Thirty-one (34%) caregivers were classified as Universal, 43 (47%) as Targeted and 17 (19%) as Clinical. The mean PAT score (1.34) was significantly higher compared with the mean PAT score (1.17) found prior to the COVID-19 pandemic. Multiple linear regression analysis demonstrated an overall significant model, with the number of hospital admissions since the onset of COVID-19 being the only variable associated with the overall PAT score. CONCLUSION: FCs of CMC are experiencing significant psychosocial stress during the COVID-19 pandemic. Timely and effective interventions are warranted to ensure these individuals receive the appropriate support.

Secondary impacts of the COVID-19 pandemic at a tertiary children's hospital in Canada: a mixed-methods study.

OBJECTIVES: Decisions to pause all non-essential paediatric hospital activities during the initial phase of the COVID-19 pandemic may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived by hospital clinicians to have been negatively impacted because of the changes in healthcare delivery attributing to the restrictions placed resulting from the COVID-19 pandemic. DESIGN AND SETTING: This study used a mixed-methods approach using the following: (1) a quantitative analysis of overall descriptive hospital activity between May and August 2020, and utilisation of data during the study period was performed, and (2) a qualitative multiple-case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a tertiary children's hospital. RESULTS: Hospital-level utilisation and activity patterns revealed a substantial change to hospital activity including an initial reduction in emergency department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19 to 67% between May and August 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centred care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers. CONCLUSION: Being aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred paediatric care moving forward.

Effectiveness of Structured Care Coordination for Children With Medical Complexity: The Complex Care for Kids Ontario (CCKO) Randomized Clinical Trial.

Importance: Children with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care. Objective: To compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care. Design, Setting, and Participants: This randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months. Intervention: Assignment of a nurse practitioner-pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care. Main Outcomes and Measures: Co-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost. Results: Of 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P < .001), with no difference between groups for the other 2 co-primary outcomes. There were no group differences for secondary outcomes of child outcomes, parent outcomes, and health care system utilization and cost. At 24 months, when both groups were receiving the intervention, no primary outcome differences were observed. Total health care costs in the second year were lower for the intervention group (median, CAD$17 891; IQR, 6098-61 346; vs CAD$37 524; IQR, 9338-119 547 [US $13 415; IQR, 4572-45 998; vs US $28 136; IQR, 7002-89 637]; P = .01). Conclusions and Relevance: The CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions. Trial Registration: ClinicalTrials.gov Identifier: NCT02928757.

One System, Multiple Hospitals: A Unified Paediatric Healthcare System Response to the COVID-19 Pandemic.

To address severe adult in-patient capacity pressures during the COVID-19 pandemic, 15 community hospitals were mandated to close their in-patient paediatric units (167 beds) and transfer paediatric in-patients to a single paediatric tertiary hospital. The tertiary hospital increased bed capacity through a surge plan activation, while community hospitals redeployed resources to fill the gaps in adult care. Also, 530 patients were transferred solely to increase adult bed capacity during the closure. Several factors enabled the system to function collaboratively. Closures increased the potential adult in-patient capacity by 6,740 bed days and demonstrated an unprecedented system-wide approach to the provision of integrated paediatric care across the region.

Utility of SARS-CoV-2 Genomic Sequencing for Understanding Transmission and School Outbreaks.

OBJECTIVE: An understanding of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) transmission in schools is important. It is often difficult, using epidemiological information alone, to determine whether cases associated with schools represent multiple introductions from the community or transmission within the school. We describe the use of whole genome sequencing (WGS) in multiple schools to investigate outbreaks of SARS-CoV-2 in the pre-Omicron period. STUDY DESIGN: School outbreaks were identified for sequencing by local public health units based on multiple cases without known epidemiological links. Cases of SARS-CoV-2 from students and staff from 4 school outbreaks in Ontario underwent WGS and phylogenetic analysis. The epidemiological clinical cohort data and genomic cluster data are described to help further characterize these outbreaks. RESULTS: A total of 132 positive SARS-CoV-2 cases among students and staff from 4 school outbreaks were identified with 65 (49%) of cases able to be sequenced with high-quality genomic data. The 4 school outbreaks consisted of 53, 37, 21 and 21 positive cases; within each outbreak there were between 8 and 28 different clinical cohorts identified. Among the sequenced cases, between 3 and 7 genetic clusters, defined as different strains, were identified in each outbreak. We found genetically different viruses within several clinical cohorts. CONCLUSIONS: WGS, together with public health investigation, is a useful tool to investigate SARS-CoV-2 transmission within schools. Its early use has the potential to better understand when transmission may have occurred, can aid in evaluating how well mitigation interventions are working and has the potential to reduce unnecessary school closures when multiple genetic clusters are identified.

Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study.

BACKGROUND: The Connecting2gether (C2) platform is a web and mobile-based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child's care team members (CTMs) in a timely manner. OBJECTIVE: The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs' and CTMs' perceptions and experiences using secure messaging as a method of communication. METHODS: This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child's care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. RESULTS: A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child's life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. CONCLUSIONS: Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child's health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

The Experience of Parental Caregiving for Children With Medical Complexity.

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children With Medical Complexity.

Children with medical complexity (CMC) are a medically fragile subset of children who rely on parental caregivers for substantial care needs. Caregivers of CMC often experience adverse health outcomes such as depression and anxiety, sleep deprivation, financial hardships, and social isolation. Caregivers of CMC are at risk of premature mortality, which is thought to be mediated by chronic and elevated stress, as well as psychiatric morbidity risk. Access to mental health care, where the needs of both the caregiver and child are considered, can enable caregivers to meet high caregiving demands and improve both child and caregiver outcomes. We describe the Caring for the Caregiver (C4C) model, a novel integrated stepped care model consisting of collaboration between a psychiatrist and a pediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work assessment, intervention and psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation, for caregivers of CMC. This innovative model will be the first to embed support for the mental health needs of caregivers of CMC within a pediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models.

Pharmacogenetic profiling via genome sequencing in children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) are a priority pediatric population, with high resource use and associated costs. Genome-wide sequencing is increasingly organized for CMC early in life as a diagnostic test. Polypharmacy becomes common as CMC age. Clinically relevant pharmacogenetic (PGx) information can be extracted from existing genome sequencing (GS) data via GS-PGx profiling. The role of GS-PGx profiling in the CMC population is unclear. METHODS: Prescribed medications were extracted from care plans of 802 eligible CMC enrolled in a structured Complex Care Program over a 10-year period. Drug-gene associations were annotated using curated Clinical Pharmacogenetics Implementation Consortium data. GS-PGx profiling was then performed for a subset of 50 CMC. RESULTS: Overall, 546 CMC (68%) were prescribed at least one medication with an established PGx association. In the GS-PGx subgroup, 24 (48%) carried variants in pharmacogenes with drug-gene guidelines for one or more of their current medications. All had findings of potential relevance to some medications, including 32 (64%) with variants in CYP2C19 that could affect their metabolism of proton-pump inhibitors. CONCLUSION: GS-PGx profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of CMC. IMPACT: Polypharmacy and genetic test utilization are both common in children with medical complexity. The role of repurposing genome sequencing data for pharmacogenetic profiling in children with medical complexity was previously unclear. We identified a high rate of medication use with clinically relevant drug-gene associations in this priority pediatric population and demonstrated that relevant pharmacogenetic information can be extracted from their existing genome sequencing data. Pharmacogenetic profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of children with medical complexity.

Resource use and disease severity of children hospitalized for COVID-19 versus multisystem inflammatory syndrome in children (MIS-C) in Canada.

Background: Direct comparisons of paediatric hospitalizations for acute coronavirus disease 2019 (COVID-19) and multisystem inflammatory syndrome in children (MIS-C) can inform health system planning. We describe the absolute and relative hospital burden of acute paediatric COVID-19 and MIS-C in Canada. Methods: This national prospective study was conducted via the Canadian Paediatric Surveillance Program from March 2020-May 2021. Children younger than 18 years old and hospitalized for acute COVID-19 or MIS-C were included in the analysis. Outcomes included supplemental oxygen (low-flow oxygen or high-flow nasal cannula), ventilation (non-invasive or conventional mechanical), vasopressors, paediatric intensive care unit (PICU) admission, or death. Adjusted risk differences (aRD) and 95% confidence intervals (CI) were calculated to identify factors associated with each diagnosis. Results: Overall, we identified 330 children hospitalized for acute COVID-19 (including five deaths) and 208 hospitalized for MIS-C (including zero deaths); PICU admission was required for 49.5% of MIS-C hospitalizations versus 18.2% of acute COVID-19 hospitalizations (aRD 20.3; 95% CI, 9.9-30.8). Resource use differed by age, with children younger than one year hospitalized more often for acute COVID-19 (aRD 43.4% versus MIS-C; 95% CI, 37.7-49.1) and more children 5-11 years hospitalized for MIS-C (aRD 38.9% vs. acute COVID-19; 95% CI, 31.0-46.9). Conclusion: While there were more hospitalizations and deaths from acute paediatric COVID-19, MIS-C cases were more severe, requiring more intensive care and vasopressor support. Our findings suggest that both acute COVID-19 and MIS-C should be considered when assessing the overall burden of severe acute respiratory syndrome coronavirus 2 in hospitalized children.

SARS-CoV-2 vaccine acceptance among caregivers of children younger than five years of age: A cross-sectional survey in Toronto.

Background: Despite severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccine approval in Canada for children six months to five years old, vaccine acceptance for this age group remains low compared with other age groups. This study aimed to assess vaccine acceptance among caregivers of children younger than five years old and to identify factors associated with SARS-CoV-2 vaccine hesitancy in Toronto. Methods: A multi-language self-administered survey was sent to caregivers of children attending 660 Toronto schools and two community health centres between April 5 to July 4, 2022. Data on socio-demographic characteristics, acceptance of routine childhood and influenza vaccines and current SARS-CoV-2 vaccine status for parents and older siblings were collected. Results: A total of 253 caregivers of children younger than five years old answered the survey. Although 234 (94%) of the responding caregivers were fully vaccinated against SARS-CoV-2 and more than 90% had their children older than five years receiving one dose of the vaccine, only 148 (59%) had intentions to vaccinate their child younger than five years old. Conclusion: These findings highlight the importance of interventions to increase vaccine confidence among caregivers of children aged younger than five years old.