Seeking Care for Children with Intellectual and/or Developmental Disabilities in the Emergency Department: A Mixed Methods Systematic Review of Parents' Experiences and Information Needs.

The objective of this review was to explore parents' experiences and information needs regarding management of their child with an intellectual and/or developmental disability (IDD) in the emergency department (ED). We searched six electronic databases and grey literature to identify primary studies in English published since 2000. We synthesized quantitative and qualitative outcome data simultaneously using a convergent integrated approach and used a Mixed Methods Appraisal Tool (MMAT) to assess methodological quality of the included studies. Nine articles derived from seven studies were included (3 qualitative, 3 quantitative, 1 mixed method). Four main themes related to parents' self-reported experiences were identified: 1) appropriateness of the ED to manage and support their child; 2) acknowledgement/recognition of their child's IDD and incorporation of those considerations into overall care and management; 3) managing and navigating the ED environment; and 4) decision to disclose their child's condition when visiting the ED. Two articles provided data relevant to information needs, highlighting parents' desire to have resources supporting ED orientation and access to services within and outside of the ED setting. From the limited number of studies, it was evident that parents wanted better communication with healthcare providers and a greater understanding by ED staff around physical space settings needed to support their child. Resources supporting ED staff and parents to communicate effectively and work together can ensure that children with IDDs care needs are met. Further research into understanding parents' experiences and information needs related to managing a child with an IDD in the ED is needed to guide the development of effective resources.

Consequences of the Coronavirus disease 2019 pandemic on child and adolescent mental, psychosocial, and physical health: A scoping review and interactive evidence map.

Effects of the Coronavirus disease 2019 (COVID-19) pandemic on children stem beyond immediate infectious and post-infectious risks. Our aim was to conduct a scoping review and produce an online Interactive Evidence Map (IEM) highlighting available literature around unintended effects of the pandemic on children's and adolescents' mental, psychosocial, and physical health. A search was run monthly in MEDLINE, PsycINFO, CENTRAL, and Cochrane COVID-19 Study Register from May 1st 2021 through April 30th 2022. All articles involving children and adolescents under 18 years of age relating to any unintended mental, psychosocial, and physical health consequences of the pandemic and resultant restrictions were included. Data were extracted and topics categorized, with corresponding data uploaded into EPPI-Reviewer and transferred to EPPI-Mapper for visualization. A total of 14,555 citations were screened and 826 (6%) articles included. Most articles reported on mental health outcomes, particularly anxiety (n = 309, 37%) and depression (n = 294, 36%). Psychosocial outcomes related to lockdowns such as loneliness (n = 120, 15%) and impact on adolescent relationships with others (n = 149, 18%) were also reported. Fewer articles examined physical consequences, but those that did mostly focused on child abuse (n = 73, 9%). Overall, currently mapped literature focuses on consequences related to mental health outcomes such as anxiety and depression.

'It's quite a balancing act': A qualitative study of parents' experiences and information needs related to the COVID-19 pandemic.

INTRODUCTION: Throughout the coronavirus disease 2019 (COVID-19) pandemic, parents and children faced significant challenges as a result of prevention measures implemented to control the spread of the disease. Ensuring that families have access to essential health information is critical for improving health outcomes and adherence to public health recommendations. Understanding parents' experiences and information needs related to the pandemic and associated health measures (e.g., vaccination, mask wearing, social distancing, etc.) will inform the development and dissemination of resources tailored to parents' needs to support informed decision making. METHODS: We conducted a qualitative descriptive study. Between September and November 2021, parents across Canada were recruited online via social media and community organisation newsletters and listservs to participate in focus groups via Zoom. Focus groups were audio-recorded and transcribed verbatim. Data were coded and analysed using thematic analysis. Participants completed a demographic questionnaire before the focus groups (via SimpleSurveys). RESULTS: Sixty-seven parents participated in 12 focus groups between October and November 2021. In relation to experiences, parents felt they were (1) constantly trying to balance everything, and (2) trying to do their best with the information they had at the time when making decisions. Regarding information needs, parents reflected on (1) how difficult it was navigating copious amounts of changing information and finding credible sources to rely on, (2) the need for resources that were easily accessible, credible and in plain language and (3) the need for resources that were tailored to their needs to support them and their children make informed decisions. CONCLUSIONS: Trying to mitigate the risk of COVID-19 infection and adhere to public health recommendations, while balancing various factors (work, online learning, and social interactions) and navigating changing information, was overwhelming for many parents. Reflecting on their needs, parents suggested tailored resources that provided concise, credible information in plain language to help them make informed decisions and navigate conflicting information. These findings reveal important knowledge gaps and highlight areas that need to be addressed to support parents during the pandemic period and beyond. PATIENT OR PUBLIC CONTRIBUTION: Members of our established Paediatric Parent Advisory Group (P-PAG) were involved as collaborators throughout the planning (grant proposal), development and execution of the study. P-PAG members gave input on the design of the questionnaire, interview guide, recruitment strategy and interpretation of findings.

We're here too: child health information-seeking experiences and preferences of Red River Métis families - a qualitative study.

BACKGROUND: Red River Métis families need access to meaningful and appropriate resources when their children are sick. At the invitation of the Manitoba Métis Federation (MMF) to partner in this research, our aim was to understand Red River Métis parents' experiences and preferences for seeking child health information when their child is acutely ill, to inform the adaptation of existing parent resources. METHODS: A qualitative descriptive approach underpinned by a participatory paradigm guided this study. Semi-structured interviews were conducted with 19 Red River Métis parents and Elders via Zoom or telephone. An inductive thematic analysis approach was used to explore patterns and themes across the data. RESULTS: Analysis generated four themes: (1) We're here too; (2) We are not all the same; (3) Finding trustworthy information; and (4) Information needs to be widely available. Red River Métis pride was prominent in the results. Parents provided tangible ways to modify existing parent resources, including adding information on how to access Elders, healers and/or traditional medicines and showing different family structures, transport, living situations, Métis names, and incorporating Métis languages. While most parents reported looking for child health information online, they also stressed the need to provide multiple options, including information sheets, recognizing that parents seek information in different contexts. Parents also emphasized the importance of accessible, safe spaces to find child health information, including local schools, community centres, healthcare organizations and the MMF. CONCLUSION: There is a lack of child health information created specifically for Red River Métis families. The development of this information can support their information needs and preferences and the ongoing efforts to revitalize Red River Métis culture and language. Study findings will inform the adaptation and dissemination of existing child health resources to ensure they reflect Red River Métis parents' information needs and preferences. This research is a critical step in addressing an identified need for Red River Métis families to have culturally relevant and meaningful child health resources, and in the pursuit of equitable care for all children in Canada. TRIAL REGISTRATION: N/A.

Examining the experiences of Indigenous families seeking health information about caring for sick or injured children: a scoping review.

OBJECTIVE: Mapping literature on Indigenous families' experiences seeking child health information and identifying barriers and facilitators to information access. DESIGN: Scoping review. DATA SOURCES: We searched Medline, EMBASE, PsycINFO, Scopus and CINAHL for peer-reviewed literature and Google Advanced for grey literature. We screened tables of contents of two Indigenous research journals not consistently indexed in online health databases and used snowball sampling to supplement searches. ELIGIBILITY CRITERIA: We included full-text, English-language articles, published from 2000 to the time of the search in April 2021, based on: participants (Indigenous families), concept (experiences of families seeking health information) and context (child health). DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted: citation details, study purpose, country of study, publication type, study design, data collection method, Indigenous group, family member participants, home/healthcare setting, child health area, how health information was accessed, and information-seeking barriers and facilitators. Data were examined for patterns and trends, results and implications. RESULTS: Among 19 papers (representing 16 research projects) included, nine described family/friends and 19 described healthcare professionals as sources of child health information. Barriers include racism/discrimination during healthcare visits, ineffective communication with healthcare providers and structural barriers (eg, transportation). Facilitators include easy access, improved communication and relationships with healthcare providers, and culturally safe healthcare. CONCLUSION: Indigenous families perceive they do not have access to necessary child health information, which can lead to insensitive, ineffective and unsafe healthcare. A critical gap exists in understanding Indigenous families' information needs and preferences when making decisions about children's health.

Evaluation of baseline pediatric readiness of emergency departments in Manitoba, Canada.

BACKGROUND: Data on the readiness of the general emergency departments (EDs) in Canada to care for children requiring emergency care are limited. Recent evidence suggests an inverse association between pediatric readiness of the general ED and mortality. OBJECTIVES: To assess the baseline pediatric readiness of the general EDs in the province of Manitoba, Canada, to care for acutely ill and injured children. METHODS: This was a cross-sectional survey study conducted between 2019 and 2020. We used a validated pediatric readiness research checklist to obtain information on the six domains of the general EDs in Manitoba in the fiscal year 2019. A general ED that managed acutely ill patients (0-17th birthday), except for psychiatric cases (up to the 18th birthday), was defined as eligible. We performed a descriptive analysis using the weighted pediatric readiness score (WPRS) based on a 100-point scale. The factors associated with the total WPRS were examined in linear regression models. RESULTS: Of the 42 eligible general EDs, 34 centers participated with a participation rate of 81%. However, only 27 general EDs plus one specialized children ED (28, 67%) completed the survey. The overall median WPRS (/100) attained by the general EDs was 52.34 (interquartile range [IQR] = 10.44). The only specialized children ED in Manitoba achieved a score of 89.75. Over half (15, 55.6%) of the general EDs scored 50 or more. The mean volume of the general ED that participated was 4010.9 (± SD 2137.2) pediatric general ED visits/year. The average scores attained in the domains such as coordination of patient care, general ED staffing and training, and quality improvement were low across the five Regional Health Authorities. The general ED volume was directly associated with the total WPRS, regression coefficient, ß = 0.24 (95% CI 0.04-0.44). Neither the capacity of the general ED to receive pediatric patients from a nursing station, ß = - 0.07 (95% CI - 0.28-0.14), nor the capacity to admit pediatric patients that visited the general ED, ß = - 0.03 (- 0.23-0.17) was associated with the total WPRS. CONCLUSIONS: The pediatric readiness of the general EDs across Manitoba is comparable to other Canadian region, yet some domains need to be improved.

An online survey to assess parents' preferences for learning about child health research.

AIM: Ethical and logistical issues often exacerbate recruitment problems in child health studies. This study aims: (a) to provide new knowledge on how parents want to hear about child health research and (b) to inform the KidsCAN PERC iPCT initiative's re-examination of recruitment and retention strategies for pediatric emergency department research studies. DESIGN: We employed a cross-sectional, survey design. METHODS: An online survey was distributed to participants (i.e., parents) through partner organizations' advisory group mailing lists. Frequencies and measures of central tendency guided data analysis. RESULTS: Parents are interested in hearing about child health research opportunities, particularly during general practitioner, pediatrician or walk-in clinic visits. Most parents wanted updates on the research team, progress and results and support to participate, such as reimbursement of travel and childcare costs. Results can inform research teams in the planning of communications to effectively share research opportunities, progress and results with parents.

Innovative approaches to investigator-initiated, multicentre paediatric clinical trials in Canada.

Data from clinical trials are needed to guide the safe and effective use of medicines in children. Clinical trials are challenging to design and implement in all populations, and children present additional considerations. Several regions including the UK, USA and Europe have established clinical trial infrastructure to capitalise on expertise and promote clinical trials enrolling children. Our objective is to describe the partnerships and operational considerations for the development of paediatric clinical trials infrastructure in Canada. We describe the design and conduct of four emergency room paediatric trials, with four separate sponsors, across four provinces in parallel. Operations discussed include multisite contract development, centralised risk-based data monitoring, ethical review and patient engagement. We conclude with lessons learnt, additional challenges and potential solutions to facilitate drug development for children in Canada.

Knowledge sharing between general and pediatric emergency departments: connections, barriers, and opportunities.

OBJECTIVE: Translating Emergency Knowledge for Kids (TREKK) is a national network aimed at improving emergency care for children by increasing collaborations and knowledge sharing between general and pediatric emergency departments (EDs). This study aimed to determine patterns of knowledge sharing within the network and to identify connections, barriers, and opportunities to obtaining pediatric information and training. METHODS: We conducted 22 semi-structured interviews with health care professionals working in general EDs, purposefully sampled to represent connected and disconnected sites, based on two previous internal quantitative social network analyses (SNA). Data were analyzed by two independent reviewers. RESULTS: Participants included physicians (59%) and nurses (41%) from 18 general EDs in urban (68%) and rural/remote (32%) Canada. Health care professionals sought information both formally and informally, by using guidelines, talking to colleagues, and attending pediatric related training sessions. Network structure and processes were found to increase connections, support practice change, and promote standards of care. Participants identified personal, organizational and system level barriers to information and skill acquisition, including resources and personal costs, geography, dissemination, and time. Providing easy access to information at the point of care was promoted through enhancing content visibility and by embedding resources into local systems. There remains a need to share successful methods of local dissemination and implementation across the network, and to leverage local professional champions such as clinical nurse liaisons. CONCLUSIONS: These findings reinforce the critical role of ongoing network evaluation to improve the design and delivery of knowledge mobilization initiatives.

Creation of an Integrated Knowledge Translation Process to Improve Pediatric Emergency Care in Canada.

TREKK (Translating Emergency Knowledge for Kids) was established to address knowledge needs to support care of children in general emergency departments. To achieve this goal, we developed an integrated knowledge translation (KT) process based on identified priorities to create the TREKK Evidence Repository, containing "knowledge pyramids" and Bottom Line Recommendations (summary documents) on the diagnosis and treatment of emergency pediatric conditions. The objective of this article is to describe our methods for developing and disseminating the TREKK Evidence Repository to improve pediatric emergency care in Canada. Our work was guided by the research question: Can an integrated KT process address an information gap in healthcare practice? We utilized a pyramid-shaped framework, built upon the "4S" hierarchy of evidence model, to provide detailed evidence appropriate to stakeholders' needs. For each priority condition (asthma, bronchiolitis, croup, etc.), clinical advisors and KT experts collaborated to create a Bottom Line Recommendation and to select guidelines, reviews, and key studies for that condition's topic area in the Evidence Repository on the TREKK website (trekk.ca). Targeted promotion, including a social media campaign, communicated the availability of new topics in the Evidence Repository and available knowledge tools. Feedback from 35 end-users on pilot versions of the Evidence Repository was positive with 91% indicating that they would use the resource in the emergency department. Using an integrated KT process, we responded to end-users' requests for varying level of information on priority pediatric conditions through the creation of knowledge tools and development of a process to identify and vet high quality evidence-based resources.