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Engaging children and families in pediatric Health Research: a scoping review.

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.

SUBMITTER: Flynn R

PROVIDER: S-EPMC6827239 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Engaging children and families in pediatric Health Research: a scoping review.

Flynn Rachel R Walton Sarah S Scott Shannon D SD

Research involvement and engagement 20191104

<h4>Aim</h4>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.<h4>Methods</h4>We followed Arksey and O'Malley (2005) and Levac et al., (2010) six-stage scoping review process. We conducted the search strategy ...[more]

PMID: 31700676

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Project description:INTRODUCTION:The rising popularity of social media, since their inception around 20 years ago, has been echoed in the growth of health-related research using data derived from them. This has created a demand for literature reviews to synthesise this emerging evidence base and inform future activities. Existing reviews tend to be narrow in scope, with limited consideration of the different types of data, analytical methods and ethical issues involved. There has also been a tendency for research to be siloed within different academic communities (eg, computer science, public health), hindering knowledge translation. To address these limitations, we will undertake a comprehensive scoping review, to systematically capture the broad corpus of published, health-related research based on social media data. Here, we present the review protocol and the pilot analyses used to inform it. METHODS:A version of Arksey and O'Malley's five-stage scoping review framework will be followed: (1) identifying the research question; (2) identifying the relevant literature; (3) selecting the studies; (4) charting the data and (5) collating, summarising and reporting the results. To inform the search strategy, we developed an inclusive list of keyword combinations related to social media, health and relevant methodologies. The frequency and variability of terms were charted over time and cross referenced with significant events, such as the advent of Twitter. Five leading health, informatics, business and cross-disciplinary databases will be searched: PubMed, Scopus, Association of Computer Machinery, Institute of Electrical and Electronics Engineers and Applied Social Sciences Index and Abstracts, alongside the Google search engine. There will be no restriction by date. ETHICS AND DISSEMINATION:The review focuses on published research in the public domain therefore no ethics approval is required. The completed review will be submitted for publication to a peer-reviewed, interdisciplinary open access journal, and conferences on public health and digital research.

Project description:BackgroundThe prevalence and consequences of obesity among children and adolescents remain a leading global public health concern, and evidence-based, multidisciplinary lifestyle interventions are the cornerstone of treatment. Mobile electronic devices are widely used across socioeconomic categories and may provide a means of extending the reach and efficiency of health care interventions.ObjectiveWe aimed to synthesize the evidence regarding mobile health (mHealth) for the treatment of childhood overweight and obesity to map the breadth and nature of the literature in this field and describe the characteristics of published studies.MethodsWe conducted a systematic scoping review in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews, by searching nine academic databases in addition to gray literature for studies describing acceptability, usability, feasibility, effectiveness, adherence, or cost-effectiveness of interventions assessing mHealth for childhood obesity treatment. We also hand searched the reference lists of relevant articles. Studies aimed at the prevention of overweight or obesity were excluded, as were studies in which mHealth was not the primary mode of treatment delivery for at least one study arm or was not independently assessed. A random portion of all abstracts and full texts was double screened by a second reviewer to ensure consistency. Data were charted according to study characteristics, including design, participants, intervention content, behavior change theory (BCT) underpinning the study, mode of delivery, and outcomes measured.ResultsWe identified 42 eligible studies assessing acceptability (n=7), usability (n=2), feasibility or pilot studies (n=15), treatment effect (n=17), and fidelity (n=1). Change in BMI z-scores or percentiles was most commonly measured, among a variety of dietary, physical activity, psychological, and usability or acceptability measures. SMS, mobile apps, and wearable devices made up the majority of mobile interventions, and 69% (29/42) of the studies specified a BCT used.ConclusionsPediatric weight management using mHealth is an emerging field, with most work to date aimed at developing and piloting such interventions. Few large trials are published, and these are heterogeneous in nature and rarely reported according to the Consolidated Standards of Reporting Trials for eHealth guidelines. There is an evidence gap in the cost-effectiveness analyses of such studies.

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Engaging children and families in pediatric Health Research: a scoping review.

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Engaging children and families in pediatric Health Research: a scoping review.

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