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Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]

Children commonly experience pain and distress in healthcare settings related to medical procedures such as blood tests and intravenous insertions (IVIs). Inadequately addressed pain and distress can result in both short- and long-term negative consequences. The use of socially assistive robotics (SARs) to reduce procedure-related distress and pain in children's healthcare settings has shown promise; however, the current options lack autonomous adaptability. This study presents a descriptive qualitative needs assessment of healthcare providers (HCPs) in two Canadian pediatric emergency departments (ED) to inform the design an artificial intelligence (AI)-enhanced social robot to be used as a distraction tool in the ED to facilitate IVIs. Semi-structured virtual individual and focus group interviews were conducted with eleven HCPs. Four main themes were identified: (1) common challenges during IVIs (i.e., child distress and resource limitations), (2) available tools for pain and distress management during IVIs (i.e., pharmacological and non-pharmacological), (3) response to SAR appearance and functionality (i.e., personalized emotional support, adaptive distraction based on child's preferences, and positive reinforcement), and (4) anticipated benefits and challenges of SAR in the ED (i.e., ensuring developmentally appropriate interactions and space limitations). HCPs perceive AI-enhanced social robots as a promising tool for distraction during IVIs in the ED. [ABSTRACT FROM AUTHOR]

Purpose: Post-thrombotic syndrome (PTS) is the most common complication of deep venous thrombosis (DVT). The index for the Clinical Assessment of Post-Thrombotic Syndrome in children (CAPTSure©) is a clinical tool for the diagnosis and severity rating of PTS in pediatric patients. The purpose of this study was to translate and adapt CAPTSure© for French-speaking patients. Methods: We conducted a cross-sectional study to perform linguistic and cultural adaptation of CAPTSure©, using a rigorous translation process followed by cognitive debriefings in twenty French-speaking pediatric patients aged up to 18 years old with a history of upper or lower extremity DVT at least 6 months prior. Results: Forward and backward translations were used to produce a pre-final French version of CAPTSure©, followed by cognitive debriefings in twenty participants (median age: 11.5 years, 55% male, median CAPTSure© score: 26). The participants felt that the questionnaire was thorough, with an adequate length. Eight out of fourteen (57%) items in the LE questionnaire and 7/12 (58%) of the items in the UE questionnaire were modified following participants' and a multidisciplinary expert committee's input, leading to the final French version of CAPTSure©. Conclusions: CAPTSure© was successfully adapted for French-speaking pediatric patients. This will ease the diagnosis and severity rating of PTS in children in clinical practice and allow international research collaborations for additional non-English-speaking patients. [ABSTRACT FROM AUTHOR]

Training staff and volunteers is an important aspect of successful program implementation. This paper follows Part A of an evaluation of the Special Olympics Canada (SOC) Coaching Young Athletes Training course. Consistent with Kirkpatrick's four-level model of training evaluation, Part A evaluated program leaders' reactions to (level 1) and immediate learning from (level 2) the training. This Part B paper covers "on the job" behavior (level 3). In-depth semi-structured interviews were conducted with youth program leaders (n = 11) from eight provinces. Overall, participants felt that more training related to working with children with autism and promoting positive athlete behavior was needed. The findings also lead us to suggest that program leaders need to develop a more fulsome understanding of how to foster skill mastery, including how to practice the same skill in many and varied ways. [ABSTRACT FROM AUTHOR]

Parental mental health services in neonatal follow-up programs (NFUPs) are lacking though needed. This study aimed to determine (1) the unmet mental health needs of parents and (2) the parent and provider perspectives on barriers and opportunities to increase mental health service access. Study 1: Parents in a central Canadian NFUP (N = 49) completed a mixed-method online survey (analyzed descriptively and by content analysis) to elucidate their mental health, related service use, barriers to service use, and service preferences. Study 2: Virtual focus groups with NFUP service providers (N = 5) were run to inform service improvements (analyzed by reflexive thematic analysis). The results show that parents endorsed a 2–4 times higher prevalence of clinically significant depression (59.2%), anxiety (51.0%), and PTSD (26.5%) than the general postpartum population. Most parents were not using mental health services (55.1%) due to resource insecurity among parents (e.g., time, cost) and the organization (e.g., staffing, training, referrals). Consolidating parents' and service providers' perspectives revealed four opportunities for service improvements: bridging services, mental health screening, online psychoeducation, and peer support. Findings clarify how a central Canadian NFUP can address parental mental health in ways that are desired by parents and feasible for service providers. [ABSTRACT FROM AUTHOR]

Play is a human right, yet opportunities for unstructured play are declining. The COVID-19 pandemic further reduced children's play opportunities. We conducted an observational study of a novel community-based intervention (play hubs) that facilitated unstructured play by offering loose parts in parks (Calgary, Canada) during the pandemic. Our descriptive study included systematic observation using the System for Observing Children's Activity and Relationships During Play (SOCARP) and Tool for Observing Play Outdoors (TOPO) to capture physical activity, play, and social and environment interactions among children participating in the play hubs for 10-weeks in 2021 (n = 160) and 2022 (n = 147). Play hub attendance was low. Most children observed were aged 5 to 12 years (2021: 93% and 2022 98%), with boys and girls represented (2021: 58% male/42% female and 2022: 52% male/48% female). Standing, sitting, and moderate activity were common activities. Physical, exploratory, and expressive play were common, while digital, bio, and rule-based play were less common. Children typically played alone or in small groups and engaged with loose parts or played in the open spaces. The play hubs encouraged unstructured play and promoted positive social interactions among children, despite the challenges of implementing a community-based intervention under pandemic public health restrictions. [ABSTRACT FROM AUTHOR]

Background: As a result of the public health measures put in place during the COVID-19 pandemic in Canada, many health services, including those for the treatment of eating disorders, were provided at a distance. This study aims to describe the adaptations made in specialized pediatric eating disorder programs in Canada and the impact of these adaptations on health professionals' experience of providing care. Methods: A mixed-methods design was used to survey healthcare professionals working in specialized pediatric eating disorder programs about adaptations to treatment made during the pandemic and the impact of these adaptations on their experience of providing care. Data were collected between October 2021 and March 2022 using a cross-sectional survey comprising 25 questions and via semi-structured interviews. Quantitative data were summarized using descriptive statistics and qualitative data were interpreted using qualitative content analysis. Results: Eighteen healthcare professionals in Canada completed the online survey, of whom six also participated in the semi-structured interviews. The cross-sectional survey confirmed that, unlike in pre-pandemic times, the majority of participants provided medical care (15/18) and mental health care (17/18) at a distance during the pandemic, with most participants using telephone (17/18) and videoconferencing (17/18). Most (16/18) health professionals indicated that virtual care would continue to be used as a tool in pediatric ED treatment after the pandemic. Participants used a combination of virtual and in-person care, with most reporting weighing patients both in clinic (16/18) and virtually (15/18). Qualitative content analysis generated five themes: (1) responding to increased demand with insufficient resources; (2) adapting to changes in care due to the COVID-19 pandemic; (3) dealing with uncertainty and apprehension; (4) virtual care as an acceptable and useful clinical tool, and (5) optimal conditions and future expectations. Most interview participants (5/6) had globally positive views of virtual care. Conclusions: Providing virtual multidisciplinary treatment for children and adolescents with eating disorders seemed feasible and acceptable to professionals during the pandemic. Moving forward, focusing on health professionals' perspectives and providing appropriate training in virtual interventions is essential given their central role in successful implementation and continued use of virtual and hybrid care models. [ABSTRACT FROM AUTHOR]

The PLAYshop program is a parent-focused physical literacy intervention for early childhood. This single-group mixed-methods pilot study aimed to explore the feasibility of virtually delivering and assessing the PLAYshop program. The virtual PLAYshop program included a virtual workshop, resources/basic equipment, and two booster emails (3-week and 6-week follow-up). Data on 34 preschool-aged children (3–5 years) and their parents from Edmonton and Victoria, Canada, were collected via an online questionnaire, virtual assessment session, and interview at single or multiple time points (baseline, post-workshop, 2-month follow-up). Intraclass correlation coefficients (ICCs), paired t-tests, repeated measures ANOVAs, and thematic analyses were conducted. Regarding feasibility, most parents (≥94%) were satisfied/extremely satisfied with the virtual workshop and planned to continue physical literacy activities post-workshop. The virtual assessment protocol for children's fundamental movement skills (FMS; overhand throw, underhand throw, horizontal jump, hop, one-leg balance) was feasible, with high completion rates (>90%) and reliable scoring (ICC = 0.79–0.99). For positive changes in potential outcomes, a medium effect size was observed for children's hopping skills (d = 0.54), and large effect sizes were observed for several parental outcomes (partial η2 = 0.20–0.54). The findings support the feasibility and potential positive outcomes of the virtual PLAYshop program. A larger randomized controlled efficacy trial is recommended. [ABSTRACT FROM AUTHOR]

Current literature is lacking in describing families' experiences in being involved in children's pain management. This study sought to understand children and their parents' experiences with pain management at a tertiary care children's hospital. Twelve child–parent dyads were recruited to participate in the study from January to August 2022. Children and their parents chose whether to be interviewed together or separately. Transcripts were analyzed using inductive, data-driven codes. Codes and themes were developed using a codebook and member-checking. Three main themes were identified: a. Painful experiences can have a significant positive or negative effect on families' lives and healthcare trajectories; b. There can be a mismatch between families' expectations of pain management and how they perceive the pain was managed; c. Families feel that they must advocate for better pain care, but often feel too intimidated to do so, or worry that their concerns will be dismissed by healthcare professionals. Families want healthcare professionals to proactively manage their children's pain, supporting the shaping of early positive memories of the child's healthcare interactions. Healthcare providers must further recognize that poorly treated pain can significantly impact families' lives and should both seek and be receptive to child and parent input for better pain care. [ABSTRACT FROM AUTHOR]

Limited data exist on pharmaceutical product use by infants, although available data suggests higher prevalence of use among children under 12 months of age. We conducted a descriptive study of 3050 infants recruited in the CHILD Cohort Study, a prospective, multicenter, longitudinal cohort following children from pregnancy through childhood. Parents were surveyed for use of prescription and over-the-counter drugs, and natural health products (NHPs, including homeopathic products and vitamins) at 3, 6, and 12 months after delivery. By one year of age, 96.0% of children had taken at least one pharmaceutical product. Among 307 reported products, 32 were given to at least 1% of cohort infants. Vitamin D, acetaminophen, ibuprofen, topical hydrocortisone, amoxicillin, and nystatin were the most common medications and natural health products (NHPs) received, with 8/32 of the most frequently used products being NHPs. Overall, 14.7% of pharmaceutical products administered to children were off-label and 35.8% were NHPs or products without a Drug Identification Number (DIN). The use of over-the-counter medications and NHPs is common and off-label use of drugs is frequent, even in the first year of life. This study highlights the importance of conducting studies on medication use in infants, and of infant medication use monitoring by healthcare providers. [ABSTRACT FROM AUTHOR]

Objective: To translate and validate the Child Three-Factor Eating Questionnaire (CTFEQr17), assessing cognitive restraint (CR), uncontrolled eating (UE) and emotional eating (EE), among French-speaking Canadian young individuals.Design: Phase 1 comprised a translation and the evaluation of the comprehension of the questionnaire. Phase 2 comprised a confirmatory factor analysis (CFA), the evaluation of internal consistency (Cronbach's α), test-retest reliability (intra-class correlation coefficients (ICC)) and construct validity, including correlations among the CTFEQr17 and Eating Attitudes Test (EAT-26), anthropometrics, dietary intake and diet quality.Setting: Primary and secondary schools, Québec City, Canada.Participants: Phases 1 and 2 included 20 (40 % boys, mean age 11·5 (sd 2·4) years) and 145 (48 % boys, mean age 11·0 (sd 1·9) years) participants, respectively.Results: Phase 1 resulted in the questionnaire to be used in Phase 2. In Phase 2, the CFA revealed that the seventeen item, three-factor model (CTFEQr17) provided an excellent fit. Internal consistency was good (Cronbach's α: 0·81-0·90). Test-retest reliability was moderate to good (ICC = 0·59, (95 % CI 0·48, 0·70), ICC = 0·78, (95 % CI 0·70, 0·84), ICC = 0·50, (95 % CI 0·38, 0·62) for CR, UE and EE, respectively). CR correlated with EAT-26 score (r = 0·43, P < 0·0001). UE and EE correlated negatively with BMI Z-scores (r = -0;·26, P = 0·003; r = -0;·19, P = 0·03, respectively). CR correlated with the proportion of energy intake from protein and diet quality (r = 0·18, P = 0·04; r = 0·20, P = 0·02, respectively).Conclusion: The CTFEQr17 is suitable to use among French-speaking Canadian young individuals. [ABSTRACT FROM AUTHOR]

Background: Dietary inequities in childhood may shape dietary and health inequities across the life course. Quantifying the magnitude and direction of trends in absolute and relative gaps and gradients in diet quality according to multiple indicators of socioeconomic position (SEP) can inform strategies to narrow these inequities.Objectives: We examined trends in absolute and relative gaps and gradients in diet quality between 2004 and 2015 according to 3 indicators of SEP among a nationally representative sample of children in Canada.Methods: Data from children (aged 2-17 y; n = 18,670) who participated in the cross-sectional Canadian Community Health Survey-Nutrition in 2004 or 2015 were analyzed. SEP was based on total household income, household educational attainment, and neighborhood deprivation. Dietary intake data from 1 interviewer-administered 24-h dietary recall were used to derive a Healthy Eating Index-2015 (HEI-2015) score for each participant as a measure of diet quality. Inequities in diet quality were quantified using 4 indices: absolute and relative gaps (between highest and lowest SEP) and absolute (Slope Index of Inequality) and relative gradients (Relative Index of Inequality). Overall and age-stratified multivariable linear regression and generalized linear models examined trends in HEI-2015 scores between 2004 and 2015.Results: Although mean HEI-2015 total scores improved from 52.3 to 57.3 (maximum 100 points; P < 0.001), absolute and relative gaps and gradients in diet quality remained mostly stable for all 3 SEP indicators. However, among children aged 6-11 y, absolute and relative gradients in diet quality according to household educational attainment and neighborhood deprivation widened.Conclusions: The diet quality of children in Canada was poor and inequitably patterned in 2004 and 2015. Although mean diet quality improved between 2004 and 2015, absolute and relative gaps and gradients in diet quality persisted, with some evidence of widening absolute and relative gradients among 6- to 11-y-olds. [ABSTRACT FROM AUTHOR]

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Background: Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities and pain. The differences in the appearance and function of their lower limbs can discourage participation in social, recreational and leisure activities, which may result in behavioural, emotional, psychological and social adjustment problems. The health-related quality of life (HRQL) of these children is often impacted due to the factors discussed above, as well as by the complex surgical procedures. Surgical treatment options for limb deformities in children vary from limb lengthening and reconstruction to amputation. The lack of evidence demonstrating superiority of either treatment options and their effect on HRQL limits the ability of healthcare providers to counsel families on the best evidence-based treatment option for them. This manuscript describes the international qualitative study which guided the development of a new patient-reported outcome measure (PROM). Individual semi-structured face-to-face interviews with children with lower limb deformities and their parents were conducted at five sites: Canada (2 sites), Ethiopia, India and the USA. Results: Seventy-nine interviews were conducted at five international sites. Five main themes emerged from the qualitative interviews and formed the basis of the conceptual framework. These themes were: 1) appearance, 2) physical health, 3) psychological health 4) school and 5) social health. Conclusions: Lower limb deformities have a substantial impact on the HRQL of children. The concepts of interest identified in our study were similar across children from all countries. The conceptual framework guided the development of outcome scales specific to these patients. The information about the impact of various treatment options on the HRQL of children with lower limb deformities, collected using this new PROM, could be used to inform parents and children about outcomes (physical, social, psychological) associated with specific treatment options. This information could supplement other objective outcome information (e.g., complication rates, how the leg will look, etc.) to help families to come to a more informed decision on a child's course of treatment. [ABSTRACT FROM AUTHOR]

Background: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents. Methods: A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews. Results: Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health‐care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents. Conclusion: An understanding of parents' experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services. [ABSTRACT FROM AUTHOR]

BACKGROUND: Management of children's pain and anxiety in the emergency department is likely suboptimal. OBJECTIVE: To determine the availability of cirrrently used strategies in Canadian paediatric emergency departments. METHODS: A cross-sectional survey involving all centres of the Pediatric Emergency Research Canada group was performed. The primary outcome was the availability of specific procedures for pain and anxiety management for children in the emergency department. One person per centre was identified to complete the survey. Data were collected from October 2013 to January 2014 using an electronic survey tool. RESULTS: All 15 Pediatric Emergency Research Canada centres agreed to participate. The verbal numerical scale was widely used (80%) to assess pain. One-half of respondents (53%) had access to a child life specialist. The following techniques were available for minor procedures: television as a distraction tool (87% of respondents), topical anesthetic before intravenous needle insertion (73%) and positioning of the child on parent's lap (60%); most remaining centres reported that these could be easily implemented. Intravenous morphine was available at every centre. Intranasal fentanyl was available (60%) or considered to be easy to implement (33%). Few centres reported availability of clinical guidelines regarding pain for doctors (27%) and nurses (40%); all respondents considered them to be easy to implement. CONCLUSIONS: There was wide variation in paediatric pain and anxiety management strategies among tertiary care Canadian emergency departments. Several pain-reduction procedures (distraction, positioning on parent's lap, topical anesthetic, intranasal administration) were identified that could be easily implemented to address the gap. [ABSTRACT FROM AUTHOR]

Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients' outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system. [ABSTRACT FROM AUTHOR]