'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.

Establishing priorities in child health: Giving parents and youth a voice.

Parents and youth across Alberta were engaged to identify specific research questions that are a priority to them. Two lists, containing 27 topics were developed with local parent and youth advisory groups, and sent to participants via online questionnaires. Topics were rated from one (least important) to five (most important) and ranked in order of priority. Initial questionnaires were completed by 263 (46%) parents and 308 (54%) youth. Parents rated five topics (behaviour, learning, and developmental disorders; mental health; food, environment and lifestyle; quality of health care; and vaccines) and youth rated four topics (brain and nerve health; mental health; quality of health care; and vaccines) as a high priority. Research questions stemming from 4 parent (12 [5%]) and 6 youth (21 [7%]) focus group discussions were then ranked in a second questionnaire, completed by 43 (43%) parents and 56 (56%) youth. Parents' highest ranked research question was 'What is the effect of screen time on cognition and neurodevelopment for children and adolescents?', while the highest ranked question from youth was 'What are the early signs of anxiety and depression and when should an individual seek help?'. These topics highlight areas that are important to parents and youth where funding, research, and knowledge mobilization efforts should be directed.

Adapting Child Health Knowledge Translation Tools for Use by Indigenous Communities: Qualitative Study Exploring Health Care Providers' Perspectives.

BACKGROUND: Our research groups have developed a number of parental knowledge translation (KT) tools to help families understand common childhood illnesses and make informed decisions regarding when to seek urgent care. We have developed a series of videos to help parents understand how to manage common acute childhood illnesses at home and when to contact emergency health care services. It is unclear whether the videos in their current form and language are useful for a wider range of populations, including Indigenous groups. OBJECTIVE: The purpose of this study was to explore whether and understand how our KT tools could be adapted for use with Indigenous communities. METHODS: Health care providers (HCPs) serving Indigenous families in Alberta, Canada, were asked to review 2 of our KT tools (one on croup and one on acute otitis media), complete a demographic survey, and participate in a one-on-one semistructured interview. HCPs were asked to reflect on the usability of the KT tools within their practice and what cultural adaptation considerations they felt would be needed to develop KT tools that meet the needs of Indigenous clients. Audio recordings from the interviews were transcribed verbatim and analyzed for relevant themes using thematic analysis. RESULTS: A total of 18 HCPs (n=15, 83% women and n=3, 17% men) from various health professions (eg, physician, registered nurse, and licensed practical nurse) were interviewed. Of these 18 HCPs, 7 (39%) self-identified as Indigenous. Four overarching themes were identified as important when considering how to adapt KT tools for use by Indigenous communities: accessibility, relatability, KT design, and relationship building. Access to tangible resources and personal and professional connections were considered important. Accessibility affects the types of KT tools that can be obtained or used by various individuals and communities and the extent to which they can implement recommendations given in those KT tools. In addition, the extent to which users relate to the depictions and content within KT tools must be considered. The environments, portrayals of characters, and cultural norms and values presented within KT tools should be relevant to users to increase the relatability and uptake of recommendations. Most importantly, fostering genuine and sustainable relationships with users and communities is a vital consideration for KT tool developers. CONCLUSIONS: These findings serve to cultivate a greater understanding of the various components that HCPs consider important when developing or culturally adapting KT tools for use by Indigenous families. This information will help support the effective adaptation and distribution of KT tools for use by a broad audience. Careful consideration of the themes identified in this study highlights the importance of working together with the knowledge users (health care consumers) when developing KT tools.

Adapting Child Health Knowledge Translation Tools for Somali Parents: Qualitative Study Exploring Process Considerations and Stakeholder Engagement.

BACKGROUND: We have developed a series of knowledge translation (KT) tools that integrate parental experiences to communicate evidence-based information about acute childhood health conditions to parents and caregivers. While we created these tools with parent input, it is unclear if they are useful for diverse parent groups, including specific immigrant and refugee groups in Canada. OBJECTIVE: This study aims to explore the usefulness of our preexisting KT tools within our local Somali community, and understand what cultural and linguistic adaptations could improve their usability. METHODS: After viewing 4 KT tools (differing in design and format) about various acute child health conditions, health care providers (HCPs) and knowledge brokers (KBs) who work with Somali families were interviewed about the usability of these tools and discussed considerations for adapting KT tools for use within the Somali community. RESULTS: A total of 13 HCPs and KBs participated and indicated that the Somali community values accessibility, representation, and the role of trusted others in delivering effective KT products. Understanding accessibility barriers, the power of adequate representation, and engaging meaningfully with prominent community leaders were key suggestions for ensuring relevance of KT products and uptake by community members. CONCLUSIONS: This study represents an essential piece of understanding processes for adapting or developing KT products for culturally and linguistically diverse communities.

Perspectives From French and Filipino Parents on the Adaptation of Child Health Knowledge Translation Tools: Qualitative Exploration.

BACKGROUND: A number of evidence-based knowledge translation (KT) tools for parents of children with acute health conditions have been developed. These tools were created and tested with parental input and disseminated to groups proficient in English. Therefore, it is unclear whether they are useful for populations that are more diverse. To enhance the reach of our current and future KT tools, language translation and cultural adaptations may promote relevance for previously underserved knowledge users. OBJECTIVE: This study aims to explore and understand considerations for the cultural and linguistic adaptation of a KT tool in French and Filipino communities. METHODS: A KT tool (whiteboard animation video) describing the signs and symptoms of croup was originally developed in English to provide parents with evidence-based information couched within a narrative reflecting parents' experiences with the condition. This KT tool was adapted (linguistics and imagery) for French- and Tagalog-speaking parents and caregivers through feedback from key stakeholders. The videos were presented to the respective language speakers for usability testing and discussion. Participants were asked to view the KT tool, complete a usability survey, and participate in semistructured interviews. Audio recordings from the interviews were transcribed verbatim, translated into English, and analyzed for relevant themes by using thematic analysis. RESULTS: French- (n=13) and Tagalog-speaking (n=13) parents completed the usability survey and were interviewed. Although analyzed separately, both data sets produced similar findings, with key themes relating to understanding, relatability, and accessibility. Both the French and Tagalog groups reported that the video and other KT tools were useful in their adapted forms. Participants in both groups cautioned against using verbatim vocabulary and suggested that cultural competency and understanding of health languages were essential for high-quality translations. Parents also discussed their preference for videos with diverse visual representations of families, home environments, and health care workers, as such videos represent their communities more broadly. CONCLUSIONS: French and Filipino parents appreciated having KT tools in their first language; however, they were also supportive of the use of English KT products. Their suggestions for improving the relatability and communication of health messages are important considerations for the development and adaptation of future KT products. Understanding the needs of the intended end users is a crucial first step in producing relevant tools for health evidence dissemination.