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

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          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.

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          Most cited references22

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          Formulating a researchable question: A critical step for facilitating good clinical research

          Developing a researchable question is one of the challenging tasks a researcher encounters when initiating a project. Both, unanswered issues in current clinical practice or when experiences dictate alternative therapies may provoke an investigator to formulate a clinical research question. This article will assist researchers by providing step-by-step guidance on the formulation of a research question. This paper also describes PICO (population, intervention, control, and outcomes) criteria in framing a research question. Finally, we also assess the characteristics of a research question in the context of initiating a research project.
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            Public involvement at the design stage of primary health research: a narrative review of case examples.

            To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Systematic literature search and narrative review. Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.
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              Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs.

              Reviewers independently extracted data on key components of PPIPs and barriers and facilitators to their operation. Data synthesis. Over half of the studies were published after 2002, and more than half originated from the United States, the United Kingdom, Australia, and Germany. CPGs that involved patients and the public addressed a variety of health problems, especially mental health and cancer. The most frequently cited objective for using PPIPs in developing CPGs was to incorporate patients' values or perspectives in CPG recommendations. Patients and their families and caregivers were the parties most often involved. used to recruit PPIP participants included soliciting through patient/public organizations, sending invitations, and receiving referrals and recruits from clinicians. Patients and the public most often participated by taking part in a CPG working group, workshop, meeting, seminar, literature review, or consultation such as a focus group, individual interview, or survey. Patients and the public principally helped formulate recommendations and revise drafts. Limitations. The authors did not contact the authors of the studies. This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.
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                Author and article information

                Contributors
                780-248-1025 , rachel.flynn@ualberta.ca
                sawalton@ualberta.ca
                shannon.scott@ualberta.ca
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                4 November 2019
                4 November 2019
                2019
                : 5
                : 32
                Affiliations
                Faculty of Nursing, Level 3, Edmonton Clinic Health Academy, 11405 87 Avenue, University of Alberta, Edmonton, Alberta T6G 1C9 Canada
                Author information
                http://orcid.org/0000-0003-2980-7441
                Article
                168
                10.1186/s40900-019-0168-9
                6827239
                31700676
                a12a619e-dabe-4df7-a829-b26029bfcef0
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 16 April 2019
                : 11 October 2019
                Categories
                Review Article
                Custom metadata
                © The Author(s) 2019

                patient engagement,pediatric,health services research

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