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Res Involv Engagem. 2019 Nov 4;5:32. doi: 10.1186/s40900-019-0168-9. eCollection 2019.

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

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1
Faculty of Nursing, Level 3, Edmonton Clinic Health Academy, 11405 87 Avenue, University of Alberta, Edmonton, Alberta T6G 1C9 Canada.

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.

KEYWORDS:

Health services research; Patient engagement; Pediatric

Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

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