A multimethods randomized trial found that plain language versions improved parents’ understanding of health recommendations

Elliott, Sarah A; Scott, Shannon D.; Charide, Rana; Stallwood, Lisa; Sayfi, Shahab; Motilall, Ashley; Baba, Ami; Lotfi, Tamara; Suvada, Jozef; Klugar, Miloslav; Kredo, Tamara; Mathew, Joseph L; Richards, Dawn P.; Butcher, Nancy J.; Offringa, Martin; Pottie, Kevin; Hartling, Lisa

doi:10.1016/j.jclinepi.2023.06.018

Cited by 5 publications

(4 citation statements)

References 26 publications

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“…The notion of breaking things down into plain language and the use of visuals to help communicate data was valued by many parents. This aligns well with previous research showing that parents preferred plain language summaries or blog shots over scientific abstracts or online information which used technical terms and medical jargon 37,38 …”

Section: Discussionsupporting

confidence: 90%

“…This aligns well with previous research showing that parents preferred plain language summaries or blog shots over scientific abstracts or online information which used technical terms and medical jargon. 37,38 Topics parents wanted resources for varied from supporting parents with how to talk to their child about COVID-19, as well as the various public health measures (e.g., vaccines, masking, social distancing, etc.) to information about long COVID-19 to help them make informed decisions.…”

Section: Information Needsmentioning

confidence: 99%

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

Hartling,

Elliott,

Wright

et al. 2024

Health Expectations

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IntroductionThroughout 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.MethodsWe 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).ResultsSixty‐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.ConclusionsTrying 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 ContributionMembers 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.

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Section: Discussionsupporting

confidence: 90%

Section: Information Needsmentioning

confidence: 99%

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

Hartling,

Elliott,

Wright

et al. 2024

Health Expectations

Self Cite

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“…We did not explore the mechanisms for these changes; however, we expect that increased exposure through regular discussions about research and KT as well as contributing to the KT tools likely impacted parents’ knowledge and confidence. Moreover, we made intentional efforts over the years to regularly discuss our research processes [ 6 ] and involved the parents in a number of KT and dissemination projects and activities [ 28 , 41 ]. Over the years, parent members have participated in presentations and workshops at scientific meetings and conferences, and have been co-authors on scientific publications in peer-reviewed journals.…”

Section: Discussionmentioning

confidence: 99%

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

Hartling,

Elliott,

Mabbott

et al. 2024

Res Involv Engagem

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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.

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“…These products have been developed as easy-to-understand summaries of health recommendations [ 6 , 7 ]. Our group’s previous findings suggest that parents prefer and better understand plain language versions compared to standard language recommendations [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

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

Cyrkot,

Hartling,

Scott

et al. 2024

JMIR Form Res

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

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A multimethods randomized trial found that plain language versions improved parents’ understanding of health recommendations

Cited by 5 publications

References 26 publications

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

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

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

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

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