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Abstract 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/ ).

Public health measures (PHMs) implemented during the COVID-19 pandemic introduced sudden changes to adolescents’ everyday routines and required adolescents to repeatedly adapt their routines at a critical developmental stage. While meant to protect physical health, the PHMs destabilized mental health. Using a youth-engaged approach and interpretive description, this study explored adolescents’ perspectives on their mental health in relation to the COVID-19 pandemic-related PHMs in Canada from March 2020 to the time of data collection in March 2022. Four Youth Research Collaborators contributed an adolescent lens to informing study activities, and a total of 33 high-school aged adolescents ages 14 to 19 completed individual interviews. Findings suggest an overarching concept of a “timeline” through which adolescents described their experiences. Most adolescents described their mental health as worsening during the initial lockdown, although some adolescents experienced positive mental health outcomes. Several adolescents felt their mental health had not recovered after the PHMs were fully lifted. This study contributes young Canadians’ unique voices to the literature on the pandemic-related PHMs and adolescent mental health. It is essential that the impacts of the pandemic on adolescent mental health continue to be a focus of research and programming to better understand and address its ongoing effects.

Abstract 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.

Abstract 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.

Abstract Background Knowledge translation (KT) strategies are widely used to facilitate the implementation of EBIs into healthcare practices. However, it is unknown what and how KT strategies are used to facilitate the sustainability of EBIs in institutional healthcare settings. Objectives This scoping review aimed to consolidate the current evidence on (i) what and how KT strategies are being used for the sustainability of EBIs in institutional healthcare settings; (ii) the reported KT strategy outcomes (e.g., acceptability) for EBI sustainability, and (iii) the reported EBI sustainability outcomes (e.g., EBI activities or component of the intervention continue). Methods We conducted a scoping review of five electronic databases. We included studies describing the use of specific KT strategies to facilitate the sustainability of EBIs (more than 1-year post-implementation). We coded KT strategies using the clustered ERIC taxonomy and AIMD framework, we coded KT strategy outcomes using Tierney et al.’s measures, and EBI sustainability outcomes using Scheirer and Dearing’s and Lennox’s taxonomy. We conducted descriptive numerical summaries and a narrative synthesis to analyze the results. Results The search identified 3776 studies for review. Following the screening, 25 studies (reported in 27 papers due to two companion reports) met the final inclusion criteria. Most studies used multi-component KT strategies for EBI sustainability (n = 24). The most common ERIC KT strategy clusters were to train and educate stakeholders (n = 38) and develop stakeholder interrelationships (n = 34). Education was the most widely used KT strategy (n = 17). Many studies (n = 11) did not clearly report whether they used different or the same KT strategies between EBI implementation and sustainability. Seven studies adapted KT strategies from implementation to sustainability efforts. Only two studies reported using a new KT strategy for EBI sustainability. The most reported KT strategy outcomes were acceptability (n = 10), sustainability (n = 5); and adoption (n = 4). The most commonly measured EBI sustainability outcome was the continuation of EBI activities or components (n = 23), followed by continued benefits for patients, staff, and stakeholders (n = 22). Conclusions Our review provides insight into a conceptual problem where initial EBI implementation and sustainability are considered as two discrete time periods. Our findings show we need to consider EBI implementation and sustainability as a continuum and design and select KT strategies with this in mind. Our review has emphasized areas that require further research (e.g., KT strategy adaptation for EBI sustainability). To advance understanding of how to employ KT strategies for EBI sustainability, we recommend clearly reporting the dose, frequency, adaptations, fidelity, and cost of KT strategies. Advancing our understanding in this area would facilitate better design, selection, tailored, and adapted use of KT strategies for EBI sustainability, thereby contributing to improved patient, provider, and health system outcomes.

Abstract 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.

Abstract 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.

Abstract Background The chronicity of congenital heart disease (CHD) comes with significant psychosocial consequences for both children and adolescents living with CHD and their primary caregivers. Children and adolescents living with CHD undergo multiple traumatizing invasive surgical and medical procedures, struggle with disabilities resulting from their CHD, face unfair scrutiny and marginalization, and are at risk for mental health issues. Primary caregivers of children and adolescents living with CHD deal with increased stress, fear, anxiety, depression, and financial burden. The overarching objectives of this scoping review are to (1) determine the current state of knowledge on negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high-income countries and (2) inform research aimed at developing interventions in high-income countries to decrease the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers. Methods Databases and grey literature searched will include MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, Scopus, ProQuest Theses and Dissertations, and Google advanced search. Citation mining of included studies and relevant review articles will be completed. Studies will be screened by title and abstract and then full text by two independent reviewers, using pre-defined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies by two reviewers using MMAT Version 2018. Studies will not be excluded due to quality assessment. Data from all eligible studies will be independently extracted by the two reviewers and verified by consensus. Data will be presented and synthesized in evidence tables to examine potential patterns. Discussion The results of this review will provide recognition of the psychosocial impact of CHD and its treatments on children and adolescents living with CHD and their primary caregivers. It will also highlight interventions that have been developed to decrease these psychosocial consequences. The results from this review will inform a future integrated knowledge translation study by the first author aimed at decreasing one or more of the negative psychosocial consequences experienced by children or adolescents living with CHD and their primary caregivers. Systematic review registration Open Science Framework (OSF) Registration, https://doi.org/10.17605/OSF.IO/ZXYGW

PurposeThe COVID-19 pandemic has resulted in drastic changes in people's lives, more so in individuals with chronic conditions, such as children with chronic respiratory disorders requiring home non-invasive ventilation. Our research question was: How has the COVID-19 pandemic affected the daily lives of children using home NIV and their families and their NIV adherence?MethodsAn anonymous online survey was administered to caregivers of pediatric patients using home NIV followed at the Stollery's Pediatric NIV Program in Alberta, Canada, between September 2020 and September 2021. Thematic analysis was conducted for the identification of emerging themes.Results/findingsFour themes were identified: (1) positive effects, (2) negative effects, (3) neutral effects, and (4) impact on NIV adherence. Effects of COVID-19 on children and families were reported by 55 respondents (57% response rate). Positive effects included a slower lifestyle, more family time, and less recurrent acute respiratory illness. Negative effects included increased parental anxiety, prolonged social isolation beyond imposed restrictions, and limited access to health supplies. Despite these negative effects, 90% of respondents reported adequate maintenance or even increases in their child's NIV use. A general sense of benefit in the virtual specialized care model was also highlighted.ConclusionCOVID-19 resulted in varying levels of impact on the lives of children using NIV, not unlike the general population. Negative effects, however, appeared to intensify in these technology-dependent children. NIV adherence, however, was prioritized by families and even increased during COVID-19. Further research is needed to analyse the potential benefits of virtual models of specialized care.

Background: Smartphone applications offer a novel platform for delivering health information to parents. This study created and evaluated an app-based symptom checker that recommends educational tools to parents based on their child’s symptoms. Methods: Symptoms extracted from 23 knowledge translation (KT) tools for 10 children’s illnesses comprised a set of plain-language symptoms. The symptom checker works by producing confusion matrices evaluating a child’s reported symptoms against possible illnesses, comparing precision scores to examine how well each illness matched reported symptoms, and ordering possible illnesses by performance score. Performance was evaluated by extracting symptoms from 8 clinical vignettes, and examining correct first-try matches. Results: We created a final list of 54 plain-language symptoms. Visualizations of the symptom set creation process and logic mapping are presented, as well as images of the working symptom checker. The symptom checker matched 100% (8/8) of tested clinical vignettes to the appropriate illness resource. Discussion: Symptom checkers are a potentially useful tool to integrate into apps that parents use for their children’s health. The design of these systems has the potential to change parents’ relationship with technology, affecting both their adoption and acceptance of symptom checkers. Our design choices contribute to addressing current barriers to the adoption of symptom checkers, reducing functional, critical, and interactive literacy requirements for parents.

Abstract Introduction The COVID-19 pandemic underlined that guidelines and recommendations must be made more accessible and more understandable to the general public to improve health outcomes. The objective of this study is to evaluate, quantify, and compare the public’s understanding, usability, satisfaction, intention to implement, and preference for different ways of presenting COVID-19 health recommendations derived from the COVID-19 Living Map of Recommendations and Gateway to Contextualization (RecMap). Methods and analysis This is a protocol for a multi-method study. Through an online survey, we will conduct pragmatic allocation-concealed, blinded superiority randomized controlled trials (RCTs) in three populations to test alternative formats of presenting health recommendations: adults, parents, and youth, with at least 240 participants in each population. Prior to initiating the RCT, our interventions will have been refined with relevant stakeholder input. The intervention arm will receive a plain language recommendation (PLR) format while the control arm will receive the corresponding original recommendation format as originally published by the guideline organizations (standard language version). Our primary outcome is understanding, and our secondary outcomes are accessibility and usability, satisfaction, intended behavior, and preference for the recommendation formats. Each population’s results will be analyzed separately. However, we are planning a meta-analysis of the results across populations. At the end of each survey, participants will be invited to participate in an optional one-on-one, virtual semi-structured interview to explore their user experience. All interviews will be transcribed and analyzed using the principles of thematic analysis and a hybrid inductive and deductive approach. Ethics and dissemination Through Clinical Trials Ontario, the Hamilton Integrated Research Ethics Board has reviewed and approved this protocol (Project ID: 3856). The University of Alberta has approved the parent portion of the trial (Project ID:00114894). Findings from this study will be disseminated through open-access publications in peer-reviewed journals and using social media. Trial registration Clinicaltrials.gov NCT05358990 . Registered on May 3, 2022

Abstract Background There is limited evidence to evaluate the sustainability of evidence-based interventions (EBIs) for healthcare improvement. Through an integrative review, we aimed to identify approaches to evaluate the sustainability of evidence-based interventions (EBIs) and sustainability outcomes. Methods Following Whittemore and Knafl’s methodological process: (1) problem identification; (2) literature search; (3) data evaluation; (4) data analysis; and (5) presentation, a comprehensive search strategy was applied across five databases. Included studies were not restricted by research design; and had to evaluate the sustainability of an EBI in a healthcare context. We assessed the methodological quality of studies using the Mixed Methods Appraisal Tool. Results Of 18,783 articles retrieved, 64 fit the inclusion criteria. Qualitative designs were most commonly used for evaluation (48%), with individual interviews as the predominant data collection method. Timing of data collection varied widely with post-intervention data collection most frequent (89%). Of the 64 studies, 44% used a framework, 26% used a model, 11% used a tool, 5% used an instrument, and 14% used theory as their primary approach to evaluate sustainability. Most studies (77%) did not measure sustainability outcomes, rather these studies focused on sustainability determinants. Discussion It is unclear which approach/approaches are most effective for evaluating sustainability and what measures and outcomes are most commonly used. There is a disconnect between evaluating the factors that may shape sustainability and the outcomes approaches employed to measure sustainability. Our review offers methodological recommendations for sustainability evaluation research and highlights the importance in understanding mechanisms of sustainability to advance the field.

Abstract Background Stories can be a powerful tool to increase uptake of health information, a key goal of knowledge translation (KT). Systematic reviews demonstrate that storytelling (i.e. sharing stories) can be effective in changing health-promoting behaviours. Though an attractive KT strategy, storytelling is a complex approach requiring careful planning and consideration of multiple factors. We sought to develop a framework to assist KT researchers and practitioners in health contexts to consider and develop effective KT interventions that include stories or storytelling. Methods We conducted a broad search of the literature to identify studies that used storytelling as a KT intervention across different disciplines: health research, education, policy development, anthropology, organizational development, technology research, and media. We extracted purposes, theories, models, mechanisms, and outcomes and then mapped the theoretical and practical considerations from the literature onto the Medical Research Council guidance for complex interventions. The theoretical and practical considerations uncovered comprised the basis of the storytelling framework development. Through discussion and consensus, methodological experts refined and revised the framework for completeness, accuracy, nuance, and usability. Results We used a complex intervention lens paired with existing behaviour change techniques to guide appropriate theory-based intervention planning and practical choices. An intentional approach to the development of story-based KT interventions should involve three phases. The theory phase specifies the goal of the intervention, mechanisms of action, and behaviour change techniques that will achieve the intended effects. The modelling phase involves development and testing using an iterative approach, multiple methods and engagement of end-users. Finally, formal evaluation using multiple methods helps determine whether the intervention is having its intended effects and value added. Conclusions This framework provides practical guidance for designing story-based KT interventions. The framework was designed to make explicit the requisite considerations when determining the appropriateness and/or feasibility of storytelling KT, clarify intervention goals and audience, and subsequently, support the development and testing of storytelling interventions. The framework presents considerations as opposed to being prescriptive. The framework also offers an opportunity to further develop theory and the KT community’s understanding of effectiveness and mechanisms of action in storytelling interventions.

Abstract 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.

Abstract 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.

Objective: To systematically review the scientific literature examining parents' experiences and information needs for the management of their child's asthma exacerbations. Methods: We searched five databases for quantitative and qualitative studies in Canada and the United States from 2002 onwards. A convergent integrated approach and the Mixed Method Appraisal Tool were used to analyze and appraise the evidence, respectively. Results: We included 84 studies (27 quantitative, 54 qualitative, 3 mixed methods). Some parents lacked confidence in recognizing or managing exacerbations. A few parents were uncertain when and where to seek medical help. The main barrier to accessing care was cost. Impacts on parents included poor sleep, distress, and lifestyle disruptions. Parents felt they lacked information and wanted education on treatments and how to recognize and manage exacerbations via education sessions, written materials, community outreach and online resources. Conclusion: Improved education for parents may help reduce parents' stress, asthma-related morbidities for children and use of urgent health services. Innovation: The development of tailored interventions and knowledge translation strategies with input from target audiences (e.g. parents, health care providers) is necessary to meet their information needs and support adherence to clinical recommendations.

Objective: To explore parents' self-reported experiences and information needs regarding recognition and management of pediatric anaphylaxis. Methods: We searched Ovid Medline, Ovid PsychInfo, CINAHL Plus, the Cochrane Library, and grey literature to identify primary studies in English or French published since 2000. We used a mixed-method appraisal tool and convergent integrated approach to assess quality and synthesize data, respectively. Results: 43 studies were included (22 quantitative, 19 qualitative, and 2 mixed-method); 77% of studies had high methodological quality. Parents' experiences were categorized as: recognizing an anaphylactic reaction; managing and responding to a reaction; emotional impact of caring for a child at risk of anaphylaxis; and interaction with the health system and healthcare providers. Parents' information needs were categorized into themes relating to: gaps in knowledge and information; type of information desired; information sources; and information delivery format. Conclusion: Negative emotional experiences and a general lack of information were commonly reported by parents of included studies. Provision of relevant and comprehensible information may help parents to make informed decisions and manage reactions promptly. Innovation: The findings of this review are guiding the development of an innovative knowledge translation tool (KT) as part of a larger initiative of developing a suite of parent-focused KT tools for acute childhood conditions.

Abstract 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.

Plain English summary In 2016 we developed a parent advisory group to inform our research program in knowledge translation (i.e., sharing research in accessible ways to inform decision-making) for child health. The group provides input from a parent perspective. We conducted an online baseline survey of parent members and a follow-up online survey 16 months after the group had started. The surveys helped us understand reasons for parents’ participation, what they thought was working well with the group, and areas for improvement. Parents valued the opportunity to provide constructive feedback on research processes and outputs. They felt the meetings were well-organized and the group was open and welcoming. Parents felt that regular and ongoing communication with the researchers was critical for meaningful engagement. To this end, funding to support a dedicated coordinator was considered essential. Parents appreciated that the researchers organized the group around parents’ needs in terms of timing of meetings (evenings) and reimbursement for expenses to attend meetings (travel, childcare). Parents considered this type of group to be unique, particularly as it supports a research program over the long-term rather than for specific projects, and because of the relative maturity in terms of clearly defining group purpose, structure, and engagement approach. The ongoing involvement allows for benefits in terms of building relationships, providing many and varied opportunities to interact, and allowing parents to see how their input is implemented. Finally, an evaluation mechanism with communication of results and a commitment to implement findings is considered critical. Our parent advisory group can provide a model for other researchers or research organizations.

Digital storytelling aims to illuminate complex narratives of health and illness when used as a method in health research. Digital stories are three to five minute videos that integrate written and narrated stories with multiple aesthetic components. There is increasing interest in digital storytelling as a research method, yet there is limited synthesized knowledge about its use. A systematic review to advance methodological understanding was warranted. Our systematic review purpose was to identify and synthesize evidence on the use, impact, and ethical considerations of digital storytelling as a method in health research. Key databases and online sources were searched for qualitative, quantitative, and mixed methods studies using digital storytelling. Articles with pediatric or adult populations, family members, or healthcare professionals were included. The focus was on digital storytelling in health research, where it was used as a method, at any point in the research process. Two independent reviewers screened abstracts and full texts to confirm eligibility. We conducted a narrative synthesis of the extracted narrative data. The searches yielded 7285 articles. Following the removal of duplicates and screening, 46 articles met the inclusion criteria, which predominantly used qualitative methodology. An analysis of the extracted data resulted in seven descriptive themes which provided insight into the purpose, definition, process, context, impact and ethical considerations of this method. Digital storytelling is an empowering and disruptive method that captures voice through a process-oriented, flexible approach. It is particularly effective at honouring local and cultural knowledge, and evoking change. Researchers have used consistent facilitation approaches, but theoretical inconsistency, diverse positioning in analysis, and ethical complexity remain significant challenges. These findings provide methodological insight for applying digital storytelling in future research. Systematic review protocol registration: CRD42017068002.

Various multiple-disciplinary terms and concepts (although most commonly “interdisciplinarity,” which is used herein) are used to frame education, scholarship, research, and interactions within and outside academia. In principle, the premise of interdisciplinarity may appear to have many strengths; yet, the extent to which interdisciplinarity is embraced by the current generation of academics, the benefits and risks for doing so, and the barriers and facilitators to achieving interdisciplinarity, represent inherent challenges. Much has been written on the topic of interdisciplinarity, but to our knowledge there have been few attempts to consider and present diverse perspectives from scholars, artists, and scientists in a cohesive manner. As a team of 57 members from the Canadian College of New Scholars, Artists, and Scientists of the Royal Society of Canada (the College) who self-identify as being engaged or interested in interdisciplinarity, we provide diverse intellectual, cultural, and social perspectives. The goal of this paper is to share our collective wisdom on this topic with the broader community and to stimulate discourse and debate on the merits and challenges associated with interdisciplinarity. Perhaps the clearest message emerging from this exercise is that working across established boundaries of scholarly communities is rewarding, necessary, and is more likely to result in impact. However, there are barriers that limit the ease with which this can occur (e.g., lack of institutional structures and funding to facilitate cross-disciplinary exploration). Occasionally, there can be significant risk associated with doing interdisciplinary work (e.g., lack of adequate measurement or recognition of work by disciplinary peers). Solving many of the world’s complex and pressing problems (e.g., climate change, sustainable agriculture, the burden of chronic disease, and aging populations) demands thinking and working across long-standing, but in some ways restrictive, academic boundaries. Academic institutions and key support structures, especially funding bodies, will play an important role in helping to realize what is readily apparent to all who contributed to this paper—that interdisciplinarity is essential for solving complex problems; it is the new norm. Failure to empower and encourage those doing this research will serve as a great impediment to training, knowledge, and addressing societal issues.

Abstract 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.

Abstract Background Experimental designs for evaluating knowledge translation (KT) interventions can provide strong estimates of effectiveness but offer limited insight into how the intervention worked. Consequently, process evaluations have been used to explore the causal mechanisms at work; however, there are limited standards to guide this work. This study synthesizes current evidence of KT process evaluations to provide future methodological recommendations. Methods Peer-reviewed search strategies were developed by a health research librarian. Studies had to be in English, published since 1996, and were not excluded based on design. Studies had to (1) be a process evaluation of a KT intervention study in primary health, (2) be a primary research study, and (3) include a licensed healthcare professional delivering or receiving the intervention. A two-step, two-person hybrid screening approach was used for study inclusion with inter-rater reliability ranging from 94 to 95%. Data on study design, data collection, theoretical influences, and approaches used to evaluate the KT intervention, analysis, and outcomes were extracted by two reviewers. Methodological quality was assessed with the Mixed Methods Appraisal Tool (MMAT). Results Of the 20,968 articles screened, 226 studies fit our inclusion criteria. The majority of process evaluations used qualitative forms of data collection (43.4%) and individual interviews as the predominant data collection method. 72.1% of studies evaluated barriers and/or facilitators to implementation. 59.7% of process evaluations were stand-alone evaluations. The timing of data collection varied widely with post-intervention data collection being the most frequent (46.0%). Only 38.1% of the studies were informed by theory. Furthermore, 38.9% of studies had MMAT scores of 50 or less indicating poor methodological quality. Conclusions There is widespread acceptance that the generalizability of quantitative trials of KT interventions would be significantly enhanced through complementary process evaluations. However, this systematic review found that process evaluations are of mixed quality and lack theoretical guidance. Most process evaluation data collection occurred post-intervention undermining the ability to evaluate the process of implementation. Strong science and methodological guidance is needed to underpin and guide the design and execution of process evaluations in KT science. Registration This study is not registered with PROSPERO.

Abstract Aim Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to comprehensively map current PE strategies with parents and families across existing published pediatric health research literature. Methods We followed Arksey and O’Malley (2005) and Levac et al., (2010) six-stage scoping review process. We conducted the search strategy in Medline, Embase, CINAHL, and Psychinfo databases. Data were extracted from included articles; evidence tables were developed and narrative synthesis was completed. Results Of 3925 retrieved records, seventeen articles were included in the review. Patient engagement primarily occurred through strategies such as advisory groups, meetings, focus groups and interviews. Strategies were used to engage patients at various levels, for different purposes (e.g., to inform, participate, consult, involve collaborate and/or lead). These strategies were also used at various stages of the research process. Navigating power differences, time and money were commonly reported challenges. Inconsistent terminology plagued (e.g., stakeholder engagement, consumer participation, patient and public involvement, participatory research) this body of literature and clarity is urgently needed. Conclusions This review offers insights into current PE strategies used in pediatric health services research and offers insight for researchers considering employing PE in the future.

Abstract Aim Digital, art‐ and story‐based resources can be viable and engaging knowledge translation strategies in health care. Understanding the usability of these approaches can help maximize their impact. The aim of this work is to understand what aspects of ‘My Asthma Diary’, an art‐based digital knowledge translation tool for parents of children with asthma, has an impact on usability. Design Sequential explanatory mixed methods pilot study. Methods Eighteen parents of children with asthma reviewed ‘My Asthma Diary’ in a paediatric emergency department and completed a usability questionnaire. Follow‐up interviews were conducted with five parents and analysed with qualitative description. Results We identified four themes which complemented the quantitative results: (a) the eBooks are relatable and mirror personal experience; (b) the digital format is convenient and easy to navigate; (c) the narrative structure aids learning; and (d) the narrative and illustrations are synergistic. We summarize core usability considerations for subsequent research and creative knowledge translation tool development in other contexts.

Abstract 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.

Introduction Pediatric chronic pain affects 15%–39% of children. Chronic pain can have significant negative effects on a child’s physical functioning, psychological and cognitive functioning, quality of life, and social functioning. Parents of children with chronic pain have reported being affected by their child’s condition. There have been few studies exploring the experiences of parents of children with chronic pain through a qualitative descriptive lens. Methods Thirteen parents from a pediatric chronic pain clinic participated in semistructured interviews. Concurrent data collection and analysis occurred to allow for follow-up of ideas that emerged during analysis. Three phases of analysis occurred: coding, categorizing, and developing themes. Results Three themes were developed: (1) Parents’ emotional journey; (2) chronic pain affects the entire family; and (3) social support is critical. Parents described emotions caused by the arduous process of obtaining a chronic pain diagnosis, followed by difficulties finding strategies to help their child manage the pain. Family life was affected because special accommodations often had to be made. Families were affected financially, incurring costs due to time off of work or additional therapies. Finally, parents stressed the importance of a strong social support network to provide assistance and flexibility for the changing needs of their child. Discussion This research identified a better understanding of the impact of pediatric chronic pain on parents. These findings can be used to provide and promote more effective treatments and education to improve the psychological, physical, and social well-being of children with pediatric chronic pain and their families.

Abstract Background Overviews of reviews (overviews) compile information from multiple systematic reviews (SRs) to provide a single synthesis of relevant evidence for decision-making. Overviews may identify multiple SRs that examine the same intervention for the same condition and include some, but not all, of the same primary studies. There is currently limited guidance on whether and how to include these overlapping SRs in overviews. Our objectives were to assess how different inclusion decisions in overviews of healthcare interventions affect their comprehensiveness and results, and document challenges encountered when making different inclusion decisions in overviews. Methods We used five inclusion decisions to conduct overviews across seven topic areas, resulting in 35 overviews. The inclusion decisions were (1) include all Cochrane and non-Cochrane SRs, (2) include only Cochrane SRs, or consider all Cochrane and non-Cochrane SRs but include only non-overlapping SRs, and in the case of overlapping SRs, select (3) the Cochrane SR, (4) the most recent SR (by publication or search date), or (5) the highest quality SR (assessed using AMSTAR). For each topic area and inclusion scenario, we documented the amount of outcome data lost and changed and the challenges involved. Results When conducting overviews, including only Cochrane SRs, instead of all SRs, often led to loss/change of outcome data (median 31% of outcomes lost/changed; range 0–100%). Considering all Cochrane and non-Cochrane SRs but including only non-overlapping SRs and selecting the Cochrane SR for groups of overlapping SRs (instead of the most recent or highest quality SRs) allowed the most outcome data to be recaptured (median 42% of lost/changed outcome recaptured; range 28–86%). Across all inclusion scenarios, challenges were encountered when extracting data from overlapping SRs. Conclusions Overlapping SRs present a methodological challenge for overview authors. This study demonstrates that different inclusion decisions affect the comprehensiveness and results of overviews in different ways, depending in part on whether Cochrane SRs examine all intervention comparisons relevant to the overview. Study results were used to develop an evidence-based decision tool that provides practical guidance for overview authors.

Abstract Background Overviews of reviews of healthcare interventions (overviews) integrate information from multiple systematic reviews (SRs) to provide a single synthesis of relevant evidence for decision-making. Overviews may identify multiple SRs that examine the same intervention for the same condition and include some, but not all, of the same primary studies. Different researchers use different approaches to manage these “overlapping SRs,” but each approach has advantages and disadvantages. This study aimed to develop an evidence-based decision tool to help researchers make informed inclusion decisions when conducting overviews of healthcare interventions. Methods We used a two-stage process to develop the decision tool. First, we conducted a multiple case study to obtain empirical evidence upon which the tool is based. We systematically conducted seven overviews five times each, making five different decisions about which SRs to include in the overviews, for a total of 35 overviews; we then examined the impact of the five inclusion decisions on the overviews’ comprehensiveness and challenges, within and across the seven overview cases. Second, we used a structured, iterative process to transform the evidence obtained from the multiple case study into an empirically based decision tool with accompanying descriptive text. Results The resulting decision tool contains four questions: (1) Do Cochrane SRs likely examine all relevant intervention comparisons and available data? (2) Do the Cochrane SRs overlap? (3) Do the non-Cochrane SRs overlap? (4) Are researchers prepared and able to avoid double-counting outcome data from overlapping SRs, by ensuring that each primary study’s outcome data are extracted from overlapping SRs only once? Guidance is provided to help researchers answer each question, and empirical evidence is provided regarding the advantages, disadvantages, and potential trade-offs of the different inclusion decisions. Conclusions This evidence-based decision tool is designed to provide researchers with the knowledge and means to make informed inclusion decisions in overviews. The tool can provide practical guidance and support for overview authors by helping them consider questions that could affect the comprehensiveness and complexity of their overviews. We hope this tool will be a useful resource for researchers conducting overviews, and we welcome discussion, testing, and refinement of the proposed tool.

Urinary tract infections (UTIs) are common in children, however, clinical practice variations can leave parents unsure how to care for their child. We aim to develop knowledge tools that provide evidence-based information about pediatric UTIs. To inform tool development, we asked parents to share their experiences and information needs in caring for a child with a UTI. Using qualitative description methods, 16 semistructured interviews were conducted with 18 parents. Parents were recruited through the emergency department (ED) of a major Canadian urban pediatric hospital. Five major themes emerged: (1) parent descriptions of their child’s symptoms and behaviors; (2) UTIs have an effect on the entire family; (3) reasons for going to the ED; (4) parent experiences with UTI treatment, management, and follow-up strategies for their child; and (5) parent information needs and preferred information sources for UTIs. Our findings highlight the diversity of UTI symptoms children experience, which causes uncertainty and confusion for parents. This diversity suggests the development of knowledge tools for parents about UTIs is needed.

Abstract 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.

Abstract Background Lean is a quality improvement management system from the Toyota manufacturing industry. Since the early 2000’s, Lean has been used as an intervention for healthcare improvement. Lean is intended to reduce costs and improve customer value through continuous improvement. Despite its extensive use, the contextual factors and mechanisms that influence the sustainability of Lean in healthcare have not been well studied. Realist synthesis is one approach to “unpack” the causal explanations of how and why Lean is sustained or not in healthcare. We conducted a realist synthesis using the context (C) + mechanim (M) = outcome (O) heuristic, to further develop and refine an initial program theory with seven CMO hypotheses, on the sustainability of Lean efforts across pediatric healthcare. Methods Our search strategy was multi-pronged, iterative, and purposeful in nature, consisting of database, gray literature, and contact with three healthcare organizations known for Lean implementation. We included primary research studies, published and unpublished case studies or reports, if they included Lean implementation with a pediatric focus and sustainability outcome. We used the Normalization Process Theory and the National Health Services Sustainability Model, an operational definition for Lean and a comprehensive definition for sustainability as guidance for data extraction and analysis. Our initial program theory with was refined using a blend of abductive and retroductive analytical processes. Results We identified six published primary research studies, two published quality improvement case studies, and three unpublished quality improvement case reports. Five CMO hypotheses from our initial program theory were substantially supported after synthesis, “sense-making and value congruency,” “staff engagement and empowerment,” and the “ripple effect” or causal pathway between Lean implementation outcomes that served as facilitating or hindering contexts for sustainability. Overall, there was variation with the conceptualization and measurement of sustainability. Conclusions This study is the first to examine Lean sustainability in pediatric healthcare using realist methods. Future research should examine whether the predictors of implementation are the same or different to sustainability and evaluate the underlying mechanisms that influence the sustainability of Lean. There is also a need for research to develop and test conceptual models and frameworks on sustainability. Systematic review registration PROSPERO-CRD42015032252.

Abstract Background Pediatric acute gastroenteritis (AGE) is a common childhood illness with substantial health, family, and system impacts. Connecting parents to evidence-based patient education is key to effective decision-making and therapeutic management of AGE. Digital knowledge translation (KT) tools offer a promising approach to communicate complex health information to parents; therefore, we developed a whiteboard animation video for parents about AGE. To optimize future effectiveness evaluation of this video, the purpose of this pilot study is to assess feasibility of effectiveness outcomes and specific trial methods in four key trial domains. Methods A single-site, parallel-arm, pilot randomized trial will be conducted. The trial will employ quantitative and qualitative methods to evaluate feasibility objectives in key scientific, process, management, and resource domains. Parents seeking care for a child with AGE in the emergency department (ED) over a 6-month period will be randomized to receive the whiteboard animation video or a sham control video. Quantitative data will be collected electronically in the ED and at home (4–10 days post-ED visit). Qualitative data will be collected via semi-structured interviews with experimental condition participants after quantitative data collection. Data will be collected to perform a sample size calculation for a full-scale trial. Scientific outcomes will include parental knowledge, decision regret, and health utilization, and estimation for these outcomes will use confidence intervals (CI) of different widths to illustrate strength of preliminary evidence. CIs will be presented alongside minimum clinically important differences (MCIDs) calculated using two methods: (1) data driven and (2) patient perspective. Descriptive statistics will be calculated to describe process, management, and resource domain outcomes. Qualitative thematic analysis will be conducted to describe additional process, management, and resource outcomes in the experimental group. Analyses will be performed using intention-to-treat. Discussion This pilot randomized trial will inform the design and conduct of a full-scale, effectiveness trial by gathering key data in four domains: scientific, process, management, and resource. These results will impact the emerging field of KT efforts targeting health consumers and advance the science on the best mode of patient education for acute childhood illnesses. Trial registration clinicaltrails.gov registration number NCT03234777. Registered 31 July 2017.

Abstract 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.

Abstract Background Digital storytelling is an arts-based research method with potential to elucidate complex narratives in a compelling manner, increase participant engagement, and enhance the meaning of research findings. This method involves the creation of a 3- to 5-min video that integrates multimedia materials including photos, participant voices, drawings, and music. Given the significant potential of digital storytelling to meaningfully capture and share participants’ lived experiences, a systematic review of its use in healthcare research is crucial to develop an in-depth understanding of how researchers have used this method, with an aim to refine and further inform future iterations of its use. Methods We aim to identify and synthesize evidence on the use, impact, and ethical considerations of using digital storytelling in health research. The review questions are as follows: (1) What is known about the purpose, definition, use (processes), and contexts of digital storytelling as part of the research process in health research? (2) What impact does digital storytelling have upon the research process, knowledge development, and healthcare practice? (3) What are the key ethical considerations when using digital storytelling within qualitative, quantitative, and mixed method research studies? Key databases and the grey literature will be searched from 1990 to the present for qualitative, quantitative, and mixed methods studies that utilized digital storytelling as part of the research process. Two independent reviewers will screen and critically appraise relevant articles with established quality appraisal tools. We will extract narrative data from all studies with a standardized data extraction form and conduct a thematic analysis of the data. To facilitate innovative dissemination through social media, we will develop a visual infographic and three digital stories to illustrate the review findings, as well as methodological and ethical implications. Discussion In collaboration with national and international experts in digital storytelling, we will synthesize key evidence about digital storytelling that is critical to the development of methodological and ethical expertise about arts-based research methods. We will also develop recommendations for incorporating digital storytelling in a meaningful and ethical manner into the research process. Systematic review registration PROSPERO registry number CRD42017068002.

Abstract 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.

Background: Twitter is one of the most popular social media platforms. The growing use of Twitter by health-care consumers creates a novel venue to understand patient experiences. To understand the potential for this platform to be utilized in patient- and family-oriented health research, this study reviewed published literature on the use of Twitter in health research. Methods: In collaboration with the research team, a research librarian designed and implemented a search strategy in eight databases. Primary and secondary screenings were conducted using predetermined criteria by one reviewer. A second reviewer verified screening decisions in 10% of the studies. Evidence tables were created to synthesize across the following study elements: research design, data collection techniques, analytic approaches, and author’s insights on Twitter as a data collection method. Descriptive narrative analysis was used to synthesize data. Results: The search strategy captured 618 articles; 233 were eliminated in primary screening and 366 articles were eliminated during secondary screening. Verification by the second reviewer resulted in very good agreement (κ = .980). Seventeen articles were included in the final data set. Synthesis across the studies demonstrated that Twitter is currently used to search and mine research data, while active recruitment strategies on Twitter are just beginning to emerge. Conclusion: The novelty of Twitter for study recruitment and data collection with health-care consumers presents advantages and challenges that differ from traditional methods of data collection.

This article discusses four challenges to conducting qualitative focus groups: (1) maximizing research budgets through innovative methodological approaches, (2) recruiting health-care professionals for qualitative health research, (3) conducting focus groups with health-care professionals across geographically dispersed areas, and (4) taking into consideration data richness when using different focus group data collection methods. In light of these challenges, we propose two alternative approaches for collecting focus group data: (a) extended period of quantitative data collection that facilitated relationship building in the sites prior to qualitative focus groups and (b) focus groups by videoconference. We share our experiences on employing both of these approaches in two national research programs.