How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

Abstract

BackgroundThe importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.MethodsA scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized.ResultsTen articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour.ConclusionsA robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

“…However, as reported elsewhere, when surveyed about challenging aspects of engaging, PCORI research partners described such experiences as difficulty managing competing demands, unmet expectations about project progress and insufficient communication about how their input was used . Other literature has described similar challenges of patient engagement in research . However, our study adds to the evidence showing that partners also experience many benefits from engaging in research.…”

Partnering with insiders: A review of peer models across community-engaged research, education and social care

“…Direct public involvement and community engagement of service users, consumers, patients and members of local communities in health research, education and social care have become more prevalent in the last decade (Brett et al, 2014;Cabassa, Camacho, Vélez-Grau, & Stefancic, 2017;Concannon et al, 2014;Domecq et al, 2014;Ellis & Kass, 2017;Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2006;Shen et al, 2017;Shippee et al, 2015). Within this arena of community-engaged work, peer models that engage and partner with local "insiders" are increasingly common.…”

Research and knowledge transfer priorities in developmental coordination disorder: Results from consultations with multiple stakeholders

“…Descriptive statistics were used to describe survey participants and satisfaction with forums. As recommended, 17,18 research and KT priority rankings were scored using a regular-interval scale (scores of 5, 4, 3, 2, 1) or an incremental interval scale wherein regular-interval values were squared (scores of 25,15,9,4,1). Both scales yielded similar results, but the incremental interval scale was adopted as it better reflected differences between priorities.…”

“…Stakeholder engagement in paediatric rehabilitation research, defined as the involvement in the research process of patients and individuals without a traditional research background (eg, families of children with disabilities, children and youth with disabilities, clinicians, health‐care managers, and policy makers), have been suggested as a strategy to foster evidence uptake in clinical practice . Such stakeholder engagement could decrease the research‐to‐practice gap by leading to the development of more clinically relevant research questions, and therefore more meaningful and readily applicable research results . However, it is challenging to achieve meaningful involvement of these stakeholders in the generation of research questions and grant proposals .…”

“…Such stakeholder engagement could decrease the research‐to‐practice gap by leading to the development of more clinically relevant research questions, and therefore more meaningful and readily applicable research results . However, it is challenging to achieve meaningful involvement of these stakeholders in the generation of research questions and grant proposals . Involving the stakeholders in the identification research priorities within a given clinical domain is a strategy that has been used by some rehabilitation researchers to ensure future researches meet patients and stakeholders expectations .…”