Search

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]

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families. [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]

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]

Background COVID-19 continues to disproportionately impact families of children with developmental disabilities (DD). There is an urgent need to understand these families' experiences, particularly those that face economic or social marginalization. This qualitative study sought to identify the experiences of families of children with DD during the COVID-19 pandemic. Methods Using phenomenology, in-depth interviews (IDIs) were conducted with caregivers and health care providers of children with DD living in a large urban Canadian city. Interviews were recorded, transcribed, and coded using inductive coding methods by two independent coders. Transcripts were analyzed within and across stakeholder groups using thematic analysis. Results A total of 25 IDIs were conducted in 2020. 3 main themes and 7 sub-themes emerged related to the experiences of parents and health care providers for children with DD: families reported difficulty adhering to public health measures leading to isolation and increased parental stress; restricted access to in-person services worsened behaviour and development; and worsened household financial security in already marginalized families. Conclusions Our study demonstrates that families of children with DD have been negatively impacted by the evolving environment from the COVID-19 pandemic, and even more so in those who face social and economic challenges. Public health restrictions have impaired the daily lives of these families and our study suggests that limitations to accessing in-person services may have long-lasting impacts on the well-being of families of children with DD. It is imperative that the unique needs of these families be considered and centred for future interventions. [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]

Cost, scheduling, and implementation competency are barriers to accessing traditional evidence-based behavioral interventions for childhood selective mutism (SM). Brief, or intensive, interventions are a disruptive innovation to traditional therapy given the use of fewer sessions during a short-term time period. This study explored the acceptability, integrity, and effectiveness (i.e., single-case replicated AB design) of an intensive summer camp consisting of a 5-day behavioral therapy for 25 children with SM. Caregiver-rated treatment acceptability ratings and family interviews support intensive summer day camp as an acceptable intervention approach for SM. Additionally, results revealed that counselors and parents implemented SM behavioral therapy during camp with impressive integrity (>90%) after receiving training about SM behavioral therapy from an SM expert clinician. Effect size calculations of counselor-rated daily behavior ratings revealed reductions in anxiety during camp for 18 of the 25 campers. Significant caregiver-rated improvements in speaking behaviors were reported for 9 out of 14 campers with data available for analysis at the 3-month follow-up. This pilot feasibility study is the first to investigate intensive summer day camp as a treatment approach for SM and implications for future research are discussed. [ABSTRACT FROM AUTHOR]

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]

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]

Rotavirus disease is a common cause of health care utilization and almost all children are affected by the age of 5 years. In Canada, at the time of this survey (2008–09), immunization rates for rotavirus were <20%. We assessed the determinants of a parent’s acceptance to have their child immunized against rotavirus. The survey instruments were based on the Theory of Planned Behavior. Data were collected in two phases. In all, 413 and 394 parents completed the first and second interviews, respectively (retention rate 95%). Most parents (67%) intended to immunize their child against rotavirus. Factors significantly associated with parental intentions (Phase 1) were as follows: perception of the moral correctness of having their child immunized (personal normative belief) and perception that significant others will approve of the immunization behavior (subjective norm), perceived capability of having their child immunized (perceived behavioral control) and household income. At Phase 2, 165 parents (42%) reported that their child was immunized against rotavirus. The main determinant of vaccination behavior was parental intention to have their child vaccinated, whereas personal normative beliefs influenced both intention and behavior. The acceptability of the rotavirus vaccine will be higher if health promotion addresses parental knowledge, attitudes and beliefs regarding the disease and the vaccine. [ABSTRACT FROM PUBLISHER]