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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. [ABSTRACT FROM AUTHOR]

Objective: Children with medical complexity (CMC) are hypothesized to have unique housing and accessibility needs due to their medical fragility and medical technology dependency; however, research on prevalence and types of housing need in CMC is limited. The objective was to describe housing need in families of CMC, and to compare housing need across CMC, children with one chronic condition (Type 1 diabetes; CT1D) and healthy children (HC). Methods: This cross-sectional descriptive study assessed housing suitability, adequacy, affordability, stress, stability, and accessibility using survey methodology. Participants were caregivers of CMC, CT1D and HC at a tertiary-care pediatric hospital. The association of housing need outcomes across groups was analyzed using logistic and ordinal logistic regression models, adjusting for income, educational attainment, employment status, community type, immigration status, child age, and number of people in household. Results: Four hundred ninety caregivers participated. Caregivers of CMC reported increased risk of housing-related safety concerns (aOR 3.1 [1.3--7.5]), using a common area as a sleeping area (5.6 12.0--16.8]), reducing spending (4.6 [2.3 --9.5[) or borrowing money to afford rent (2.9 [1.2--6.7]), experiencing housing stress (3.3 [1.8--6.0]), and moving or considering moving to access health/community services (15.0 [6.4-37.6]) compared to HC. Conclusions: CMC were more likely to experience multiple indicators of housing need compared to CT1D and HC even after adjusting for sociodemographic factors, suggesting an association between complexity of child health conditions and housing need. Further research and practise should consider screening for and supporting housing need in CMC. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) are a growing population, yet training in complex care varies across pediatric residency programs. The purpose of this study was 1) to evaluate the effectiveness of a curriculum for pediatric residents in improving performance in a simulated clinical scenario, and 2) to explore residents' perceived self-efficacy in caring for CMC. A randomized controlled trial was conducted supplemented by qualitative inquiry. Pediatric residents from 2 residency programs were randomly assigned to participate in interactive modules on: 1) clinical assessment, care planning, and technological dependency or 2) noncomplex care topics. The primary outcome was mean score on an Observed Structured Clinical Examination (OSCE) of tracheostomy care. Semistructured interviews were conducted postintervention and analyzed using qualitative content analysis. Ninety-four eligible residents were randomized. Residents who attended all modules and the OSCE and consented to participate (intervention [n = 20] and control [n=24]) were included in the final analysis. At baseline, few (9%) reported being comfortable caring for CMC. There was no significant difference in mean OSCE score between intervention and control groups (39.0 ± 1.1 vs 38.0 ± 1.0, P =.48). Qualitative analysis revealed 3 emerging themes related to resident self-efficacy: building a system of care, navigating uncertainty, and professional identity formation. A standardized complex care curriculum delivered in a classroom setting did not lead to improved performance in an OSCE station despite increased resident-reported self-efficacy in approaching care for CMC. These findings highlight the need for multidimensional educational interventions and assessments in complex care. [ABSTRACT FROM AUTHOR]

Objective: The objective of the study was to assess clinical mental and physical health outcomes of siblings of children with chronic health condition(s) compared with siblings of healthy children or normative data.Study Design: We searched Ovid MEDLINE, Embase, Cochrane Central Register of Controlled Trials, PsycINFO, and CINAHL through August 9, 2021. We included English-language studies that reported clinically diagnosable mental or physical health outcomes among siblings of children (<18 years old) with a chronic health condition, included a comparison group, and used an experimental or observational study design. Two reviewers extracted data and independently assessed risk of bias using the Newcastle Ottawa Scale.Results: Of 9899 screened studies, 34 were included; 28 studies reported on mental health, 3 reported on physical health, and 3 reported on mortality. Siblings of children with chronic conditions had greater depression rating scale scores than their comparison groups (standardized mean difference = 0.53; 95% CI = 0.38-0.68; P < .001 [6 studies]), whereas anxiety scores were not substantially increased (standardized mean difference = 0.21; 95% CI = -0.02 to 0.43; P = .07 [7 studies]). The effects for confirmed psychiatric diagnoses (7 studies), mortality (3 studies), or physical health outcomes (3 studies) could not be meta-analyzed given the limited number of studies and between-study heterogeneity.Conclusion: Siblings of children with chronic health conditions may be at an increased risk of depression. Our findings suggest the need for targeted interventions to support the psychological well-being of siblings of children with chronic health conditions. [ABSTRACT FROM AUTHOR]

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. 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. 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 %). 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. [ABSTRACT FROM AUTHOR]

Objective: To assess health outcomes of parents caring for children with chronic illnesses compared with parents of healthy children.Study Design: We searched OvidSP MEDLINE, EBM Reviews-Cochrane Central Register of Controlled Trials, EMBASE, and EBSCOHost CINAHL through September 2019. Included were English-language studies reporting health conditions or mortality of parents of affected children compared with healthy controls.Results: Of 12 181 screened publications, 26 met inclusion criteria. Eight studies reported on anxiety, 23 on depression, 1 on mortality, and 1 on cardiovascular disease. Parents of chronically ill children had greater anxiety (standardized mean difference 0.42; 95% CI 0.24-0.60; P < .001) and depression scores (standardized mean difference 0.35; 95% CI 0.26-0.45; P < .001) than parents of healthy children. Thirty-five percent of parents of affected children met cut-offs for clinical depression, compared with 19% in the control (relative risk 1.75; 95% CI 1.55-1.97). Fifty-seven percent of such parents met cut-offs for anxiety, compared with 38% in the control (relative risk 1.40; 95% CI 1.18-1.67). One study of mothers of children with congenital anomalies reported a greater mortality risk than a comparison (adjusted hazard ratio 1.22; 95% CI 1.15-1.29), and another reported that these mothers experience an increased risk of cardiovascular disease (adjusted hazard ratio 1.15; 95% CI 1.07-1.23).Conclusions: Parents of chronically ill children experience poorer mental health (more anxiety and depression), and mothers of those with congenital anomalies may have greater risk of cardiovascular disease and mortality than parents of unaffected children. Our findings suggest a need for targeted interventions to attenuate adverse parental caregiver health outcomes.Prior Registration: PROSPERO CRD42018094657 (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94657). [ABSTRACT FROM AUTHOR]

Background and Objective: Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO.Methods: We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by 2 independent reviewers using thematic analysis.Results: 15 parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed 3 major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience.Conclusion: Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents. [ABSTRACT FROM AUTHOR]