'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.

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.

Impact of the COVID-19 pandemic on the sexual and reproductive health of adolescents in Alberta, Canada.

PURPOSE: The COVID-19 pandemic led to major service disruptions in the healthcare sector, especially regarding sexual and reproductive health services. However, the impact of the pandemic on Canadian adolescents is relatively unknown. This study aimed to investigate the impacts of the COVID-19 pandemic and associated public health measures on the sexual and reproductive health (SRH) of adolescents in Alberta, Canada. METHODS: A qualitative study using an interpretive description (ID) approach and community-based participatory research principles was conducted to capture the subjective experience and perceptions of adolescents and service providers. With the collaboration of the Adolescent Advisory Group and community partners, 18 adolescents and 15 service providers were recruited for the study through purposive sampling. Findings from the qualitative interviews were analyzed using thematic analysis. RESULTS: Three major themes emerged from the analysis: (1) COVID-19 SRH experience, (2) barriers to SRH, and (3) adolescent SRH strategies. Our findings highlight numerous barriers and challenges that prevented adolescents from accessing SRH education, products, and services. CONCLUSION: The COVID-19 pandemic had a profound impact on the SRH and the well-being of adolescents. Our study reflects the need for diverse SRH strategies to maintain continued access to SRH resources during disruptive events, such as the pandemic.

Access to sexual and reproductive health (SRH) services is a basic human right. All individuals require access to appropriate SRH services to maintain their optimal sexual and reproductive health. Adolescents require special guidance, support, and youth-friendly services in matters of SRH as they enter puberty and explore their sexual identity. However, during the COVID-19 pandemic, many health and SRH services were suspended. Access to SRH products and services became difficult due to public health restrictions, which has possible negative consequences for adolescents' SRH. The experiences of adolescents during the COVID-19 pandemic regarding their SRH are not reported in Alberta, Canada. Therefore, we explored the impacts of these public health restrictions on adolescents' SRH. We performed qualitative interviews with adolescents and SRH service providers to know their perspectives on how the pandemic influenced the SRH of adolescents. This paper provides insights into the barriers faced by adolescents while accessing SRH services during the pandemic, as well as their perceptions of digital strategies, such as mobile applications, and other recommendations for supporting SRH education and services. Based on the study findings, an adolescent-friendly mobile application will be developed to provide a virtual platform connecting adolescents to SRH educational resources, services, and support.

Mitigating Moral Distress: Pediatric Critical Care Nurses' Recommendations.

In pediatric critical care, nurses are the primary caregivers for critically ill children and are particularly vulnerable to moral distress. There is limited evidence on what approaches are effective to minimize moral distress among these nurses. To identify intervention attributes that critical care nurses with moral distress histories deem important to develop a moral distress intervention. We used a qualitative description approach. Participants were recruited using purposive sampling between October 2020 to May 2021 from pediatric critical care units in a western Canadian province. We conducted individual semi-structured interviews via Zoom. A total of 10 registered nurses participated in the study. Four main themes were identified: (1) "I'm sorry, there's nothing else": increasing supports for patients and families; (2) "someone will commit suicide": improving supports for nurses: (3) "Everyone needs to be heard": improving patient care communication; and (4) "I didn't see it coming": providing education to mitigate moral distress. Most participants stated they wanted an intervention to improve communication among the healthcare team and noted changes to unit practices that could decrease moral distress. This is the first study that asks nurses what is needed to minimize their moral distress. Although there are multiple strategies in place to help nurses with difficult aspects of their work, additional strategies are needed to help nurses experiencing moral distress. Moving the research focus from identifying moral distress towards developing effective interventions is needed. Identifying what nurses need is critical to develop effective moral distress interventions.

Toward a moral commitment: Exposing the covert mechanisms of racism in the nursing discipline.

Recent Canadian and international events have sparked dialogue and action to address racism within the nursing discipline. While the urgency to seek and implement antiracist solutions demands the attention of nurses, we contend that a contemporary analysis of the mechanisms that continue to perpetuate racism within nursing's theoretical foundation is required first. This study reconsiders the perceived functions of racism within the current state of nursing concepts and theories. In particular, we expose the role that covert racism plays by inadvertently sustaining racism through nursing's theoretical foundation, and how this process strengthens white supremacy. We argue that, in the absence of exposing these covert mechanisms, the development of solutions will be futile in dismantling racism. By making visible the covert mechanisms of racism within nursing's theoretical foundation, we attempt to establish an opportunity for the nursing discipline to dismantle its racist foundation and engage in sustained antiracist action. Lastly, this study demonstrates the need to equip the discipline with a moral commitment to antiracism in an effort to emancipate nursing from its racist legacies.

Racism and the mental health of East Asian diasporas in North America: a scoping review.

BACKGROUND: The COVID-19 pandemic heightened anti-Asian racism towards East Asian diasporas in North America. Experiences of racism encountered by East Asian communities have been documented to negatively impact their mental health. METHODS: A scoping review was undertaken following Arksey and O'Malley's (2005) methodology to (a) map the foci of literature on racism and the mental health of East Asian diasporas in North America and (b) identify gaps in the current literature. RESULTS: A total of 1309 articles were identified in May 2021. Based on the inclusion criteria, 35 records were included. Two distinct mental health foci were found: mental health outcomes and mental healthcare access and utilization. The majority (n = 22) of the articles focused on racism at the interpersonal level. Six articles provided anti-racism solutions at the individual level, such as overcoming biases. Five articles targeted anti-racism solutions from both the individual and institutional levels, while 1 article addressed barriers at the institutional level, such as dismantling sanctioned power hierarchies. CONCLUSION: The expanding knowledge base on COVID-19-related racial discrimination is reminiscent of previous literature examining the history of anti-Asian racism in North America. Greater attention is needed to navigate impactful anti-racism solutions for East Asian populations' mental health in North America.

Research- and health-related youth advisory groups in Canada: An environmental scan with stakeholder interviews.

BACKGROUND: Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. OBJECTIVE: This study aimed to identify research- and health-related youth advisory groups ('groups') in Canada and understand the best practices of these groups. METHODS: Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. RESULTS: We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. CONCLUSION: This study provides a comprehensive overview of research- and health-related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. PATIENT OR PUBLIC CONTRIBUTION: Youth advisory group representatives were interviewed as part of the study.

Contextual factors and mechanisms that influence sustainability: a realist evaluation of two scaled, multi-component interventions.

BACKGROUND: In 2012, Alberta Health Services created Strategic Clinical NetworksTM (SCNs) to develop and implement evidence-informed, clinician-led and team-delivered health system improvement in Alberta, Canada. SCNs have had several provincial successes in improving health outcomes. Little research has been done on the sustainability of these evidence-based implementation efforts. METHODS: We conducted a qualitative realist evaluation using a case study approach to identify and explain the contextual factors and mechanisms perceived to influence the sustainability of two provincial SCN evidence-based interventions, a delirium intervention for Critical Care and an Appropriate Use of Antipsychotics (AUA) intervention for Senior's Health. The context (C) + mechanism (M) = outcome (O) configurations (CMOcs) heuristic guided our research. RESULTS: We conducted thirty realist interviews in two cases and found four important strategies that facilitated sustainability: Learning collaboratives, audit & feedback, the informal leadership role, and patient stories. These strategies triggered certain mechanisms such as sense-making, understanding value and impact of the intervention, empowerment, and motivation that increased the likelihood of sustainability. For example, informal leaders were often hands-on and influential to front-line staff. Learning collaboratives broke down professional and organizational silos and encouraged collective sharing and learning, motivating participants to continue with the intervention. Continual audit-feedback interventions motivated participants to want to perform and improve on a long-term basis, increasing the likelihood of sustainability of the two multi-component interventions. Patient stories demonstrated the interventions' impact on patient outcomes, motivating staff to want to continue doing the intervention, and increasing the likelihood of its sustainability. CONCLUSIONS: This research contributes to the field of implementation science, providing evidence on key strategies for sustainability and the underlying causal mechanisms of these strategies that increases the likelihood of sustainability. Identifying causal mechanisms provides evidence on the processes by which implementation strategies operate and lead to sustainability. Future work is needed to evaluate the impact of informal leadership, learning collaboratives, audit-feedback, and patient stories as strategies for sustainability, to generate better guidance on planning sustainable improvements with long term impact.

Considerations for Health Researchers Using Social Media for Knowledge Translation: Multiple Case Study.

BACKGROUND: Despite extensive literature describing the use of social media in health research, a gap exists around best practices in establishing, implementing, and evaluating an effective social media knowledge translation (KT) and exchange strategies. OBJECTIVE: This study aims to examine successes, challenges, and lessons learned from using social media within health research and to create practical considerations to guide other researchers. METHODS: The Knowledge Translation Platform of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit formed a national working group involving platform staff, academics, and a parent representative with experience using social media for health research. We collected and analyzed 4 case studies that used a variety of social media platforms and evaluation methods. The case studies covered a spectrum of initiatives from participant recruitment and data collection to dissemination, engagement, and evaluation. Methods and findings from each case study as well as barriers and facilitators encountered were summarized. Through iterative discussions, we converged on recommendations and considerations for health researchers planning to use social media for KT. RESULTS: We provide recommendations for elements to consider when developing a social media KT strategy: (1) set a clear goal and identify a theory, framework, or model that aligns with the project goals and objectives; (2) understand the intended audience (use social network mapping to learn what platforms and social influences are available); (3) choose a platform or platforms that meet the needs of the intended audience and align well with the research team's capabilities (can you tap into an existing network, and what mode of communication does it support?); (4) tailor messages to meet user needs and platform requirements (eg, plain language and word restrictions); (5) consider timing, frequency, and duration of messaging as well as the nature of interactions (ie, social filtering and negotiated awareness); (6) ensure adequate resources and personnel are available (eg, content creators, project coordinators, communications experts, and audience stakeholder or patient advocate); (7) develop an evaluation plan a priori driven by goals and types of data available (ie, quantitative and qualitative); and (8) consider ethical approvals needed (driven by evaluation and type of data collection). CONCLUSIONS: In the absence of a comprehensive framework to guide health researchers using social media for KT, we provide several key considerations. Future research will help validate the proposed components and create a body of evidence around best practices for using and evaluating social media as part of a KT strategy.

Understanding Determinants of Sustainability Through a Realist Investigation of a Large-Scale Quality Improvement Initiative (Lean): A Refined Program Theory.

BACKGROUND: Implementation science research seeks to understand ways to best ensure uptake of research-based initiatives to health care; however, there is little research done on how to sustain such efforts. Sustainability is the degree to which an initiative continues to be used in practice after efforts of implementation have ended. Sustainability research is a growing field of implementation science that needs further research to understand how to predict and measure the long-term use of effective initiatives to improve health care. The question of what influences the sustainability of research-based initiatives to improve health care remains unknown. PURPOSE: The purpose of this article was to present a refined program theory on the contextual factors and mechanisms that influence the sustainability of one large-scale quality management initiative (Lean) in pediatric health care. DESIGN: We conducted a multiphase realist investigation to explain under what contexts, for whom, how, and why Lean efforts are sustained or not sustained in pediatric health care through the generation of an explanatory program theory. METHODS: This article presents the theoretical triangulation of our multiphase realist investigation, resulting in a refined program theory. We integrated the initial program theories (IPTs) from each research phase to form a refined program theory. It involved going back and forth from the initial IPT to the findings from each phase and our middle-range theories and examining the most substantiated IPTs on the contextual factors and mechanisms that influenced the sustainability of Lean efforts. FINDINGS: The refined program theory depicts the complex nature to sustaining Lean efforts and that sustainability as a small, often unrepresentative portion of something much larger or more complex that cannot yet be seen or understood. The approach and nature of implementation is critical to shaping contexts for sustainability. Outcomes from implementation become facilitating or hindering contexts for sustainability. Customization to context is an important contextual factor for sustainability. Sense making, value congruency, and staff engagement are critical aspects from early implementation that enable or hinder processes of sustainment. Such mechanisms can trigger staff empowerment that can lead to a greater likelihood of sustainability. CONCLUSIONS: These findings have important implications for sustainability research, in understanding the determinants of sustainability of research-based initiatives in health care. CLINICAL RELEVANCE: It is important to understand and explain determinants of sustainability through theory-driven evaluative research in order to assist key stakeholders in sustaining the effective research-based initiatives made to improve healthcare services, patient care, and outcomes.

Fading confidence: A qualitative exploration of parents' experiences caring for a febrile child.

AIMS AND OBJECTIVES: To explore parents' experiences with paediatric fever to understand their needs for information and support. BACKGROUND: Paediatric fever is a normal part of childhood, and multiple episodes of fever are a common occurrence between infancy and adulthood. Despite this expectation, paediatric fever often sparks fear and anxiety amongst parents. Existing research has primarily focused on measuring parental deficits, so a more in-depth exploration is helpful to understand the complexities of caring for a febrile child. DESIGN: Qualitative descriptive study. METHODS: Purposive sampling of N = 15 parents from a paediatric emergency department presenting with a febrile child. Semi-structured interviews were conducted in-person or via telephone. Thematic analysis was used to understand the data in the light of our research question. Reporting follows the consolidated criteria for reporting qualitative research checklist. RESULTS: We found themes of (a) parental confidence through caregiving tasks, (b) emergent feelings of inadequacy, (i) referrals and limitations of community practice, (c) information needs and (d) information sources. Whereas parents were initially confident accessing information, providing care, making decisions and managing symptoms, new signs/symptoms sparked a change in parents' emotions, coping and behaviour. Parents routinely search for information about paediatric fever and value reliable, accessible resources. CONCLUSIONS: Our findings highlight parents' strengths assessing fever and effectively managing symptoms. We are encouraged by the potential for these results to inform the development of empowering resources to help parents make child health decisions during paediatric fever. RELEVANCE TO CLINICAL PRACTICE: Findings provide an evidence base for researchers, clinicians and policymakers to improve care for paediatric patients and families. Parents want clear, reliable and accessible information about decision points associated with paediatric fever. Resources with an empowerment focus may help parents maintain a sense of control when caring for a febrile child.

A realist evaluation to identify contexts and mechanisms that enabled and hindered implementation and had an effect on sustainability of a lean intervention in pediatric healthcare.

BACKGROUND: In 2012, the Saskatchewan Ministry for Health mandated a system-wide Lean transformation. Research has been conducted on the implementation processes of this system-wide Lean implementation. However, no research has been done on the sustainability of these Lean efforts. We conducted a realist evaluation on the sustainability of Lean in pediatric healthcare. We used the context (C) + mechanism (M) = outcome (O) configurations (CMOcs) heuristic to explain under what contexts, for whom, how and why Lean efforts are sustained or not sustained in pediatric healthcare. METHODS: We employed a case study research design. Guided by a realist evaluation framework, we conducted qualitative realist interviews with various stakeholder groups across four pediatric hospital units 'cases' at one acute hospital. Interview data was analyzed using an integrated approach of CMOc categorization coding, CMOc connecting and pattern matching. RESULTS: We conducted thirty-two interviews across the four cases. Five CMOcs emerged from our realist interview data. These configurations illustrated a 'ripple-effect' from implementation outcomes to contexts for sustainability. Sense-making and staff engagement were prominent mechanisms to the sustainment of Lean efforts. Failure to trigger these mechanisms resulted in resistance. The implementation approach used influenced mechanisms and outcomes for sustainability, more so than Lean itself. Specifically, the language, messaging and training approaches used triggered mechanisms of innovation fatigue, poor 'sense-making' and a lack of engagement for frontline staff. The mandated, top-down, externally led nature of implementation and lack of customization to context served as potential pitfalls. Overall, there was variation between leadership and frontline staff's perceptions on how embedded Lean was in their contexts, and the degree to which participants supported Lean sustainability. CONCLUSIONS: This research illuminates important contextual factors and mechanisms to the process of Lean sustainment that can be applicable to those implementing systems changes. Future work is needed to continue to develop the science on the sustainability of interventions for healthcare improvement.

Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care.

BACKGROUND: Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators. METHODS: Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators. RESULTS: A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support. CONCLUSIONS: The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.

Knowledge Translation Strategies Used by Healthcare Professionals in Child Health Settings: An Updated Systematic Review.

PROBLEM: Strategies assisting healthcare professionals to make evidence-based decisions are crucial for quality patient care and outcomes. To date, there is one systematic review (Albrecht et al., 2016) examining knowledge translation (KT) efforts in child health settings. This systematic review aims to provide an update on current evidence identifying KT interventions implementing research into child health settings. ELIGIBILITY CRITERIA: Nine electronic databases were searched, restricted by date (2011-2018) and language (English). Eligibility included: 1) randomized controlled trials (RCT), controlled clinical trials (CCT), or controlled before-and-after (CBA) studies; 2) interventions implementing research into child health practice; and 3) outcomes were measured at the healthcare professional/process, patient, or economic level. SAMPLE: Health care professionals working in child health settings. RESULTS: 48 studies (38 RCT, 7 CBA, 3 CCT) were included. Studies employed single (n = 34) and multiple (n = 14) interventions. The methodological quality of studies was moderate (n = 18), strong (n = 16) and weak (n = 14). Studies showing significant, positive effects included (n = 9) RCTs, (n = 3) CBAs and (n = 2) CCTs. These studies employed (n = 11) single KT interventions and (n = 3) multiple KT interventions. Interventions included educational (n = 6), reminders (n = 3), computerized decision supports (n = 2), multidisciplinary teams (n = 2) and financial and educational interventions combined (n = 1). CONCLUSIONS: Effective KT strategies used by health care professionals in child health settings were found to be online education curriculums and computerized decision supports or reminders. IMPLICATIONS: This review update serves as an up-to-date 'state of the science' on KT strategies used in pediatric health professionals' clinical practice, assessed by the most rigorous research designs.

Procedural pain in children: a qualitative study of caregiver experiences and information needs.

BACKGROUND: Children experience multiple painful procedures when being cared for in emergency departments (EDs). Unfortunately, evidence-based interventions to manage such pain and distress are under-utilized across EDs. Caregivers are uniquely positioned and invested to advocate for the adaptation of such evidence into practice. Our objective was to gather information from caregivers of children experiencing procedural pain in the ED to inform the development of a novel, caregiver-focused knowledge translation (KT) tool. METHODS: The study design was qualitative description. Caregivers of children who underwent intravenous (IV) insertion or venipuncture in the pediatric ED at an urban tertiary care centre were interviewed. Thematic analysis was applied to the data. The TRanslating Emergency Knowledge for Kids (TREKK) Parent Advisory Group continuously informed this study, and provided input on interview guide development and piloting, data collection, analysis of the data, interpretation of the results, and development of next steps. RESULTS: Interviews revealed four major themes: 1) source of healthcare information; 2) delivering healthcare information; 3) communication with caregivers; and 4) procedure-related anxiety and long-term effects. Caregivers most valued receiving information directly from their healthcare provider. They also expressed that healthcare providers should direct information about the procedure to their child and identified strategies to involve children in their care. Caregivers wanted to be empowered to ask informed questions of their healthcare providers. Finally, caregivers reported negative experiences with procedures for their children, occurring mainly at non-pediatric centres. CONCLUSIONS: We have identified core information needs for caregivers whose children are experiencing IV insertion or venipuncture. These results will form the foundation for the development of a KT tool that may empower caregivers to actively participate in their child's healthcare.

Developing "My Asthma Diary": a process exemplar of a patient-driven arts-based knowledge translation tool.

BACKGROUND: Although it is well established that family-centered education is critical to managing childhood asthma, the information needs of parents of children with asthma are not being met through current educational approaches. Patient-driven educational materials that leverage the power of the storytelling and the arts show promise in communicating health information and assisting in illness self-management. However, such arts-based knowledge translation approaches are in their infancy, and little is known about how to develop such tools for parents. This paper reports on the development of "My Asthma Diary" - an innovative knowledge translation tool based on rigorous research evidence and tailored to parents' asthma-related information needs. METHODS: We used a multi-stage process to develop four eBook prototypes of "My Asthma Diary." We conducted formative research on parents' information needs and identified high quality research evidence on childhood asthma, and used these data to inform the development of the asthma eBooks. We established interdisciplinary consulting teams with health researchers, practitioners, and artists to help iteratively create the knowledge translation tools. RESULTS: We describe the iterative, transdisciplinary process of developing asthma eBooks which incorporates: (I) parents' preferences and information needs on childhood asthma, (II) quality evidence on childhood asthma and its management, and (III) the engaging and informative powers of storytelling and visual art as methods to communicate complex health information to parents. We identified four dominant methodological and procedural challenges encountered during this process: (I) working within an inter-disciplinary team, (II) quantity and ordering of information, (III) creating a composite narrative, and (IV) balancing actual and ideal management scenarios. CONCLUSIONS: We describe a replicable and rigorous multi-staged approach to developing a patient-driven, creative knowledge translation tool, which can be adapted for use with different populations and contexts. We identified specific procedural and methodological challenges that others conducting comparable work should consider, particularly as creative, patient-driven knowledge translation strategies continue to emerge across health disciplines.

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.

Knowledge translation tools for parents on child health topics: a scoping review.

BACKGROUND: An emerging field of knowledge translation (KT) research has begun to focus on health consumers, particularly in child health. KT tools provide health consumers with research knowledge to inform health decision-making and may foster 'effective consumers'. Thus, the purpose of this scoping review was to describe the state of the field of previously published effectiveness research on child health-related KT tools for parents/caregivers to understand the evidence-base, identify gaps, and guide future research efforts. METHODS: A health research librarian developed and implemented search strategies in 8 databases. One reviewer conducted screening using pre-determined criteria. A second reviewer verified 10% of screening decisions. Data extraction was performed by one reviewer. A descriptive analysis was conducted and included patient-important outcome classification, WIDER Recommendation checklist, and methodological quality assessment. RESULTS: Seven thousand nine hundred fifty two independent titles and abstracts were reviewed, 2267 full-text studies were retrieved and reviewed, and 18 articles were included in the final data set. A variety of KT tools, including single- (n = 10) and multi-component tools (n = 10), were evaluated spanning acute (n = 4), chronic (n = 5) and public/population health (n = 9) child health topics. Study designs included: cross-sectional (n = 4), before-after (n = 1), controlled before-after (n = 2), cohort (n = 1), and RCTs (n = 10). The KT tools were evaluated via single primary outcome category (n = 11) and multiple primary outcome categories (n = 7). Two studies demonstrated significant positive effects on primary outcome categories; the remaining studies demonstrated mixed effects (n = 9) and no effect (n = 3). Overall, methodological quality was poor; studies lacked a priori protocols (n = 18) and sample size calculations (n = 13). Overall, intervention reporting was also poor; KT tools lacked description of theoretical underpinnings (n = 14), end-user engagement (n = 13), and preliminary research (n = 9) to inform the current effectiveness evaluation. CONCLUSIONS: A number of child health-related knowledge translation tools have been developed for parents/caregivers. However, numerous outcomes were used to assess impact and there is limited evidence demonstrating their effectiveness. Moreover, the methodological rigor and reporting of effectiveness studies is limited. Careful tool development involving end-users and preliminary research, including usability testing and mixed methods, prior to large-scale studies may be important to advance the science of KT for health consumers.