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Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study.

ABSTRACT: Chronic pain in childhood is increasingly being recognized as a significant clinical problem for children and their families. Previous research has identified that families want information about the causes of their child's chronic pain, treatment options, and effective strategies to help their child cope with the pain. Unfortunately, parents have reported that finding this information can be challenging.The aim of this study was to actively work together with children attending a pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of an art and narrative-based electronic book (e-book) for pediatric chronic pain.A multiphase, multi-method research design employing patient engagement techniques was used to develop, refine, and evaluate the usability of an art and narrative based e-book for pediatric chronic pain management to facilitate knowledge translation for parents with a child with chronic pain. The multiple phases included the following: (1) qualitative interviews to compile parents' narratives using qualitative interviews; (2) qualitative data analysis; (3) development of an e-book prototype; (4) expert clinician feedback; (5) parent usability evaluation, knowledge change, and confidence in knowledge responses using an electronic survey; (6) e-book refinement; and (7) dissemination of the e-book.A 48-page e-book was developed to characterize the experiences of a family living with a child with chronic pain. The e-book was a composite narrative of the parent interviews and encompassed descriptions of the effects the condition has on each member of the family. This was merged with the best available research evidence on the day-to-day management of pediatric chronic pain. The e-book was vetted for clinical accuracy by expert pediatric pain clinicians. All parents that participated in the usability evaluation (N=14) agreed or strongly agreed the content of the e-book was easy to understand and stated that they would recommend the e-book to other families who have children with chronic pain. Our research identified up to a 21.4% increase in knowledge after using the e-book, and paired t tests demonstrated a statistically significant difference in confidence in answering two of the five knowledge questions (chronic pain is a disease involving changes in the nervous system; the use of ibuprofen is usually effective at controlling chronic pain); t13=0.165, P=.001 and t13=0.336, P=.002, respectively, after being exposed to the e-book.Our results demonstrate that parents positively rated an e-book developed for parents with a child with chronic pain. Our results also identify that overall, parents' knowledge increased after using the e-book, and confidence in their knowledge about chronic pain and its management increased in two aspects after e-book exposure. These results suggest that art and narrative-based knowledge translation interventions may be useful in transferring complex health information to parents.

SUBMITTER: Reid K

PROVIDER: S-EPMC5746621 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

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Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study.

Reid Kathy K Hartling Lisa L Ali Samina S Le Anne A Norris Allison A Scott Shannon D SD

Journal of medical Internet research 20171214 12

<h4>Background</h4>Chronic pain in childhood is increasingly being recognized as a significant clinical problem for children and their families. Previous research has identified that families want information about the causes of their child's chronic pain, treatment options, and effective strategies to help their child cope with the pain. Unfortunately, parents have reported that finding this information can be challenging.<h4>Objective</h4>The aim of this study was to actively work together wit ...[more]

PMID: 29242180

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Project description:BackgroundPediatric 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.MethodsA 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.DiscussionThis 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 registrationclinicaltrails.gov registration number NCT03234777. Registered 31 July 2017.

Project description:BackgroundVaccination is a common painful procedure for children. Parents' concern regarding vaccination pain is a significant driver of vaccine hesitancy. Despite the wealth of evidence-based practices available for managing vaccination pain, parents lack knowledge of, and access to, these strategies. Knowledge translation (KT) tools can communicate evidence-based information to parents, however little is known about what factors influence parents' use of these tools. A two-page, electronic KT tool on psychological, physical, and pharmacological vaccination pain management strategies for children, was shared with parents as part of a larger mixed methods study, using explanatory sequential design, exploring factors related to uptake of this KT tool. The aim of this qualitative study was to understand what influenced parents' perceptions of the relevance of the KT tool, as well as their decision as to whether to use the tool.MethodsA qualitative descriptive design was used. A total of 20 parents of children aged 0-17 years (n = 19 mothers) reviewed the KT tool ahead of their child's upcoming vaccination and participated in a semi-structured interview at follow-up. Interviews were recorded, transcribed verbatim, and analyzed with reflexive thematic analysis using an inductive approach.ResultsThe analysis generated three interrelated themes which described factors related to parents' use of the KT tool: (1) Relevance to parents' needs and circumstances surrounding their child's vaccination; (2) Alignment with parents' personal values around, and experiences with, vaccination pain management (e.g., the importance of managing pain); and (3) Support from the clinical environment for implementing evidence-based strategies (e.g., physical clinical environment and quality of interactions with the health care provider).ConclusionsSeveral factors were identified as central to parents' use of the KT tool, including the information itself and the clinical environment. When the tool was perceived as relevant, aligned with parents' values, and was supported by health care providers, parents were more inclined to use the KT tool to manage their children's vaccination pain. Future research could explore other factors related to promoting engagement and uptake when creating parent-directed KT tools for a range of health-related contexts.

Project description: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.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.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.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.

Project description:BackgroundA 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.ObjectiveThis study aims to explore and understand considerations for the cultural and linguistic adaptation of a KT tool in French and Filipino communities.MethodsA 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.ResultsFrench- (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.ConclusionsFrench 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.

Project description:BackgroundThe field of knowledge translation (KT) has been criticized for neglecting contextual and social considerations that influence health equity. Intersectionality, a concept introduced by Black feminist scholars, emphasizes how human experience is shaped by combinations of social factors (e.g., ethnicity, gender) embedded in systemic power structures. Its use has the potential to advance equity considerations in KT. Our objective was to develop and conduct usability testing of tools to support integrating intersectionality in KT through three key phases of KT: identifying the gap; assessing barriers to knowledge use; and selecting, tailoring, and implementing interventions.MethodsWe used an integrated KT approach and assembled an interdisciplinary development committee who drafted tools. We used a mixed methods approach for usability testing with KT intervention developers that included semi-structured interviews and the System Usability Scale (SUS). We calculated an average SUS score for each tool. We coded interview data using the framework method focusing on actionable feedback. The development committee used the feedback to revise tools, which were formatted by a graphic designer.ResultsNine people working in Canada joined the development committee. They drafted an intersectionality primer and one tool that included recommendations, activities, reflection prompts, and resources for each of the three implementation phases. Thirty-one KT intervention developers from three countries participated in usability testing. They suggested the tools to be shorter, contain more visualizations, and use less jargon. Average SUS scores of the draft tools ranged between 60 and 78/100. The development committee revised and shortened all tools, and added two, one-page summary documents. The final toolkit included six documents.ConclusionsWe developed and evaluated tools to help embed intersectionality considerations in KT. These tools go beyond recommending the use of intersectionality to providing practical guidance on how to do this. Future work should develop guidance for enhancing social justice in intersectionality-enhanced KT.

Project description:BACKGROUND:The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. OBJECTIVE:This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. METHODS:Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients' support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. RESULTS:Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. CONCLUSIONS:This study will provide valuable information about parents' experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/19108.

Project description:BackgroundConnecting parents to research evidence is known to improve health decision making. However, guidance on how to develop effective knowledge translation (KT) tools that synthesize child-health evidence into a form understandable by parents is lacking.ObjectiveThe aim of this study was to conduct a comparative usability analysis of three Web-based KT tools to identify differences in tool effectiveness, identify which format parents prefer, and better understand what factors affect usability for parents.MethodsWe evaluated a Cochrane plain language summary (PLS), Blogshot, and a Wikipedia page on a specific child-health topic (acute otitis media). A mixed method approach was used involving a knowledge test, written usability questionnaire, and a semistructured interview. Differences in knowledge and usability questionnaire scores for each of the KT tools were analyzed using Kruskal-Wallis tests, considering a critical significance value of P=.05. Thematic analysis was used to synthesize and identify common parent preferences among the semistructured interviews. Key elements parents wanted in a KT tool were derived through author consensus using questionnaire data and parent interviews.ResultsIn total, 16 parents (9 female) with a mean age of 39.6 (SD 11.9) years completed the study. Parents preferred the Blogshot over the PLS and Wikipedia page (P=.002) and found the Blogshot to be the most aesthetic (P=.001) and easiest to use (P=.001). Knowledge questions and usability survey data also indicated that the Blogshot was the most preferred and effective KT tool at relaying information about the topic. Four key themes were derived from thematic analysis, describing elements parents valued in KT tools. Parents wanted tools that were (1) simple, (2) quick to access and use, and (3) trustworthy, and which (4) informed how to manage the condition. Out of the three KT tools assessed, Blogshots were the most preferred tool by parents and encompassed these four key elements.ConclusionsIt is important that child health evidence be available in formats accessible and understandable by parents to improve decision making, use of health care resources, and health outcomes. Further usability testing of different KT tools should be conducted involving broader populations and other conditions (eg, acute vs chronic) to generate guidelines to improve KT tools for parents.

Dataset Information

Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study.

Publications

Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study.

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