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An Evaluation of Parents' Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study.

ABSTRACT: 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.

SUBMITTER: Thompson AP

PROVIDER: S-EPMC7435679 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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An Evaluation of Parents' Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study.

Thompson Alison P AP MacDonald Shannon E SE Wine Eytan E Scott Shannon D SD

JMIR research protocols 20200804 8

<h4>Background</h4>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 per ...[more]

PMID: 32663147

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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: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.

Project description:BackgroundChronic 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.ObjectiveThe 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.MethodsA 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.ResultsA 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.ConclusionsOur 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.

Project description:ObjectiveWe describe the use of an integrated knowledge translation (KT) approach in the development of the CONsolidated Standards Of Reporting Trials extension for equity ('CONSORT-Equity 2017'), and advisory board-research team members' ('the team') perceptions of the integrated KT process.DesignThis is an observational study to describe team processes and experience with a structured integrated KT approach to develop CONSORT-Equity 2017. Participant observation to describe team processes and a survey were used with the 38 team members.SettingUse of the CONSORT health research reporting guideline contributes to an evidence base for health systems decision-making, and CONSORT-Equity 2017 may improve reporting about health equity-relevant evidence. An integrated KT research approach engages knowledge users (those for whom the research is meant to be useful) with researchers to co-develop research evidence and is more likely to produce findings that are applied in practice or policy.ParticipantsResearchers adopted an integrated KT approach and invited knowledge users to form a team.ResultsAn integrated KT approach was used in the development of CONSORT-Equity 2017 and structured replicable steps. The process for co-developing the reporting guideline involved two stages: (1) establishing guiding features for co-development and (2) research actions that supported the co-development of the reporting guideline. Stage 1 consisted of four steps: finding common ground, forming an advisory board, committing to ethical guidance and clarifying theoretical research assumptions. Bound by the stage 1 guiding features of an integrated KT approach, stage 2 consisted of five steps during which studies for consensus-based reporting guidelines were conducted. Of 38 team members, 25 (67.5%) completed a survey about their perceptions of the integrated KT approach.ConclusionsAn integrated KT approach can be used to engage a team to co-develop reporting guidelines. Further study is needed to understand the use of an integrated KT approach in the development of reporting guidelines.

Project description:BackgroundDespite the increasing mobilization of researchers and funding organizations around knowledge translation (KT) in Canada and elsewhere, many questions have been only partially answered, particularly in the field of population health. This article presents the results of a systematic process to draw out possible avenues of collaboration for researchers, practitioners and decision-makers who work in the area of KT. The main objective was to establish a research agenda on knowledge translation in population health.MethodsUsing the Concept Mapping approach, the research team wanted to identify priority themes for the development of research on KT in population health. Mapping is based on multivariate statistical analyses (multidimensional scaling and hierarchical cluster analysis) in which statements produced during a brainstorming session are grouped in weighted clusters. The final maps are a visual representation of the priority themes of research on KT. Especially designed for facilitating consensus in the understanding and organization of various concepts, the Concept Mapping method proved suitable for achieving this objective.ResultsThe maps were produced by 19 participants from university settings, and from institutions within the health and social services network. Three main perspectives emerge from this operation: (1) The evaluation of the effectiveness of KT efforts is one of the main research priorities; (2) The importance of taking into consideration user contexts in any KT effort; (3) The challenges related to sharing power for decision-making and action-taking among various stakeholder groups. These perspectives open up avenues of collaboration for stakeholders who are involved in research on KT. Besides these three main perspectives, the concept maps reveal three other trends which should be emphasized.ConclusionThe Concept Mapping process reported in this article aimed to provoke collective reflection on the research questions that should be studied, in order to foster coherence in research activities in the field of population health. Based on this, it is appropriate to continue to support the development of research projects in KT and the formation of research teams in this field. Research on KT must lead to concrete outcomes within communities that are interested in the question.

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.

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An Evaluation of Parents' Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study.

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An Evaluation of Parents' Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study.

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