Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Aug;20(4):543-554.
doi: 10.1111/hex.12490. Epub 2016 Aug 12.

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

Shuoqi Shen  1 , Krissy A R Doyle-Thomas  1 , Lori Beesley  1 , Amir Karmali  2 , Laura Williams  3 , Nadia Tanel  1 , Amy C McPherson  1   4
Affiliations

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

Shuoqi Shen et al. Health Expect. 2017 Aug.

Abstract

Background: The 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.

Methods: A 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.

Results: Ten 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.

Conclusions: A 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.

Keywords: family-centred care; participatory research; patient engagement; patient involvement.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Search results and process
See this image and copyright information in PMC

References

    1. Johnson BH. Family‐centered care: four decades of progress. Fam Syst Health. 2000;18:137–156.
    1. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family‐centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2011;16:297–305. - PMC - PubMed
    1. Rosenbaum R. Family‐centered research: what does it mean and can we do it? Dev Med Child Neurol. 2011;53:99–100. - PubMed
    1. Shelton TL, Jeppson ES, Johnson BH. Family‐Centered Care for Children with Special Health Care Needs. Washington, DC: Association for the Care of Children's Health; 1987.
    1. Sample PL. Beginnings: participatory action research and adults with developmental disabilities. Disabil Soc. 1996;11:317–332.

Publication types

LinkOut - more resources