'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.

Understanding How Youth Search for Mental Health Information Online: A Qualitative Descriptive Study.

The objective of this study was to understand how youth search for mental health information online. Youth partners were engaged at the onset of the project and provided input throughout on the design, conduct and analysis. Individual, semi-structured interviews with Canadian youth with experience searching for mental health information online were conducted. Data collection and reflexive thematic analysis proceeded concurrently. Fourteen youth were interviewed. Four main themes related to how youth search online emerged: mind-set shapes the search process; external factors shape the search process; key attributes of helpful information; and cues affecting trustworthiness of online information. Findings can inform the development of youth-friendly online mental health information that is perceived as helpful and trustworthy by youth. Ensuring youth have access to quality online mental health information, accessible to how they search for it, is critical to the mental health and development of youth.

Developing an evidence-and ethics-informed intervention for moral distress.

The global pandemic has intensified the risk of moral distress due to increased demands on already limited human resources and uncertainty of the pandemic's trajectory. Nurses commonly experience moral distress: a conflict between the morally correct action and what they are required or capable of doing. Effective moral distress interventions are rare. For this reason, our team conducted a multi-phase research study to develop a moral distress intervention for pediatric critical care nurses. In this article, we discuss our multi-phase approach to develop a moral distress intervention-proactive, interdisciplinary meeting. Our proposed intervention is a sequential compilation of empirical work couched within a relational ethics lens thus should point to enhanced potential for intervention effectiveness.

Parents' User Experience Accessing and Using a Web-Based Map of COVID-19 Recommendations for Health Decision-Making: Qualitative Descriptive Study.

BACKGROUND: The eCOVID19 Recommendations Map & Gateway to Contextualization (RecMap) website was developed to identify all COVID-19 guidelines, assess the credibility and trustworthiness of the guidelines, and make recommendations understandable to various stakeholder groups. To date, little has been done to understand and explore parents' experiences when accessing and using the RecMap website for COVID-19 health decision-making. OBJECTIVE: To explore (1) where parents look for COVID-19 health information and why, (2) parents' user experience when accessing and using the RecMap website to make health decisions, and (3) what knowledge mobilization activities are needed to increase parents' awareness, use, and engagement with the RecMap website. METHODS: We conducted a qualitative descriptive study using semistructured interviews and a think-aloud activity with parents of children aged 18 years or younger living in Canada. Participants were asked to provide feedback on the RecMap website and to "think aloud" as they navigated the website to find relevant COVID-19 health recommendations. Demographic information was collected using a web-based questionnaire. A hybrid deductive and inductive thematic approach guided analysis and data synthesis. RESULTS: A total of 21 participants (13/21, 62% mothers) were interviewed and participated in a think-aloud activity. The data were categorized into four sections, representative of key elements that deductively and inductively emerged from the data: (1) parent information seeking behaviors and preferences for COVID-19, (2) RecMap website usability, (3) perceived usefulness of the RecMap website, and (4) knowledge mobilization strategies to increase awareness, use, and engagement of the RecMap website. Parents primarily used the internet to find COVID-19 information and focused on sources that they determined to be credible, trustworthy, simple, and engaging. As the pandemic evolved, participants' information-seeking behaviors changed, specifically their topics of interest and search frequency. Most parents were not aware of the RecMap website before this study but found satisfaction with its concept and layout and expressed intentions to use and share it with others. Parents experienced some barriers to using the RecMap website and suggested key areas for improvement to facilitate its usability and perceived usefulness. Recommendations included a more user-friendly home page for lay audiences (separate public-facing user interface), improving the search and filter options, quicker navigation, clearer titles, more family-friendly graphics, and improving mobile-friendly access. Several strategies to disseminate the RecMap website were also expressed, including a mix of traditional and nontraditional methods (handouts and social media) in credible and high-traffic locations that parents frequent often. CONCLUSIONS: Overall, parents liked the concept of the RecMap website but had some suggestions to improve its usability (language, navigation, and website interface). These findings can be used to improve the RecMap website for parents and offer insight for the development and dissemination of effective web-based health information tools and resources for the general public.

Exploring methods for creating or adapting knowledge mobilization products for culturally and linguistically diverse audiences: a scoping review.

BACKGROUND: Connecting end-users to research evidence has the power to improve patient knowledge and inform health decision-making. Differences in the culture and language of the end users may shape the effectiveness of knowledge mobilization (KMb). This scoping review set out to understand current approaches and methods when creating or adapting KMb products for culturally and linguistically diverse (CALD) audiences. METHODS: We searched 3 databases (Ovid Medline, CINAHL via EBSCOhost, PsychINFO) from 2011 until August 2023. We included any literature about KMb product creation or adaptation processes serving CALD communities. A primary reviewer screened all identified publications and a second reviewer screened publications excluded by the primary. Data were extracted using a standardized form by one reviewer and verified by a second reviewer. Studies were categorized by type of adaptations ('surface' and/or 'deep' structure) and mapped based on type of stakeholder engagement used in the research approach (i2S model), and end-user involvement (content, design, evaluation and dissemination) in KMb product creation or adaptation. RESULTS: Ten thousand two hundred ninety-nine unique titles and abstracts were reviewed, 670 full-text studies were retrieved and reviewed, and 78 studies were included in final data extraction and mapping. Twenty-four studies (31%) created or adapted exclusively text-based KMb products such as leaflets and pamphlets and 49 (63%) produced digital products such as videos (n = 16, 33%), mobile applications (n = 14, 29%), and eHealth websites (n = 7, 14%). Twenty-five studies (32%) reported following a framework or theory for their creation or adaptation efforts. Twenty-eight studies (36%) engaged stakeholders in the research approach. Nearly all (96%) involved end-users in creating or adapting the KMb products through involvement in content development (n = 64), design features (n = 52), evaluation (n = 44) and dissemination (n = 20). Thirty-two (41%) studies included reflections from the research teams on the processes for creating or adapting KMb products for CALD communities. CONCLUSION: Included studies cited a variety of methods to create or adapt KMb products for CALD communities. Successful uptake of created or adapted KMb products was often the result of collaboration and involvement with end-users for more applicable, accessible and meaningful products. Further research developing guidance and best practices is needed to support the creation or adaptation of KMb products with CALD communities. REGISTRATION: Protocol submitted to Open Science Framework on August 16, 2022 ( https://osf.io/9jcw4/ ).

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

BACKGROUND: The beginning of the COVID-19 pandemic marked a period of uncertainty as public health guidelines, diagnostic criteria, and testing protocols or procedures have continuously evolved. Despite the virus being declared a worldwide pandemic, little research has been done to understand how parents manage caring for their child diagnosed with COVID-19. We sought to understand parents' experiences and information need when caring for a child diagnosed with COVID-19. METHODS: A qualitative descriptive study with an inductive and exploratory approach was completed. Participants were recruited through social media and local public health clinics. Data collection and analysis were concurrent. Semi-structured virtual interviews were conducted with 27 participants. Thematic analysis was conducted. FINDINGS: Four major themes emerged: a) dealing with uncertainty; b) anxiety; c) social stigma and stress; d) a sense of community. CONCLUSION: Our study highlights that parent experiences were diverse and multi-faceted, and their experiences evolved and shifted over the course of the pandemic. Parents would benefit from clear and consistent evidence-based online information. Understanding the perspectives of parents caring for a child with COVID-19 is an important step in developing future resources tailored to meet their unique experiences and information needs.

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.

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.

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health.

BACKGROUND: In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. METHODS: We conducted year-end surveys and interviews of group members to understand parents' perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. RESULTS: Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group's purpose, offering sufficient context for discussion items, and providing feedback about how members' input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group's current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group's membership and an interest in hearing more about how the research program's activities fit into the broader healthcare system and their impacts on health outcomes. CONCLUSIONS: Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

We developed a parent advisory group in 2016 to support our research program in knowledge translation (KT, i.e., sharing research in accessible ways to inform decision-making) for child health. The purpose of the group is to involve parents in co-developing, evaluating, and sharing KT tools (e.g., videos, infographics). The group has also worked with researchers to inform methods and provide input on research projects and products. The group has been running for seven years and has involved different types of evaluations, including parent surveys and interviews. Parents had generally positive views of their experience with the group (including the group's management, interactions with researchers, etc.) and their responses mostly improved over the years. Based on parents' feedback, we made changes to improve the group's operations, such as changing the frequency and location of meetings, regular communications about the group's purpose, offering more context and time for individual discussion items, and providing feedback to parents about how their input was used. Parents regularly expressed a desire for more diversity in the group's membership. They also expressed an interest in hearing more about how the research program fit into the broader healthcare system and impacts on health outcomes. We have learned that it takes a large amount of time, effort, and funding to run the group; however, the parent contributions have been valuable and wide-reaching. We feel that the evaluations and responsive changes to the group over time have been essential to sustain and foster meaningful engagement and achieve the group's objectives.

Pain experiences of marginalized children in the emergency department: A scoping review protocol.

INTRODUCTION: Pain affects all children, and in hospitals across North America, this pain is often undertreated. Children who visit the emergency department (ED) experience similar undertreatment, and they will often experience a painful procedure as part of their diagnostic journey. Further, children and their caregivers who experience social injustices through marginalization are more likely to experience healthcare disparities in their pain management. Still, most of our knowledge about children's pain management comes from research focused on well-educated, white children and caregivers from a middle- or upper-class background. The aim of this scoping review is to identify, map, and describe existing research on (a) how aspects of marginalization are documented in randomized controlled trials related to children's pain and (b) to understand the pain treatment and experiences of marginalized children and their caregivers in the ED setting. METHODS AND ANALYSIS: The review will follow Joanna Briggs Institute methodology for scoping reviews using the Participant, Concept, Context (PCC) framework and key terms related to children, youth, pain, ED, and aspects of marginalization. We will search Medline, Embase, PsychInfo, CINAHL, Web of Science, Cochrane Library Trials, iPortal, and Native Health Database for articles published in the last 10 years to identify records that meet our inclusion criteria. We will screen articles in a two-step process using two reviewers during the abstract and full-text screening stages. Data will be extracted using Covidence for data management and we will use a narrative approach to synthesize the data. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Findings will be disseminated in academic manuscripts, at academic conferences, and with partners and knowledge users including funders of pain research and healthcare professionals. Results of this scoping review will inform subsequent quantitative and qualitative studies regarding pain experiences and treatment of marginalized children in the ED.

Characterizing research partnerships in child health research: A scoping review.

Research partnerships between researchers and knowledge users (KUs) in child health are understudied. This study examined the scope of KU engagement reported in published child health research, inclusive of health research partnership approaches and KU groups. Search strategies were developed by a health research librarian. Studies had to be in English, published since 2007, and were not excluded based on design. A two-step, multiple-person hybrid screening approach was used for study inclusion. Data on study and engagement characteristics, barriers and facilitators, and effects were extracted by one reviewer, with 10% verified by a second reviewer. Three hundred fifteen articles were included, with 243 (77.1%) published between 2019 and 2021. Community-based participatory research was the most common approach used (n = 122, 38.3%). Most studies (n = 235, 74.6%) engaged multiple KU groups (range 1-11), with children/youth, healthcare professionals, and parents/families being most frequently engaged. Reporting of barriers and facilitators and effects were variable, reported in 170 (53.8%) and 197 (62.5%) studies, respectively. Publications have increased exponentially over time. There is ongoing need to optimize evaluation and reporting consistency to facilitate growth in the field. Additional studies are needed to further our understanding of research partnerships in child health.