Review Article
A scoping review of end user involvement in disability research

https://doi.org/10.1016/j.dhjo.2015.10.001Get rights and content

Abstract

Background

Involving clients and consumers of health care in research, policy and health service development has been widely advocated for across a number of different fields and disciplines. Despite some promising evidence, ‘end users’ have not been meaningfully involved in all stages of the research process in the area of disability research.

Objective

To conduct a scoping review on end user involvement in disability research, service and policy development.

Methods

Literature was searched using electronic databases, hand searching reference lists of papers and grey literature. Electronic databases searched included the Cochrane Database of Systematic Reviews, MEDLINE, EMBASE, CINAHL, PsycINFO and Google Scholar. The search was restricted to articles published in English between January 2000 and April 2013.

Results

Two clear themes emerged from a review of twenty-seven articles. Firstly, end users can benefit research as ‘experts of experience’ through their role as a co-researcher. Secondly, evidence suggests end users add value at different stages of the research process in this role. However, less is understood about end user involvement in the latter stages of the research process.

Conclusions

This review suggests that end users can meaningfully contribute to the quality of disability research. End users are likely to engage in research with differing perspectives, desires to be involved at distinct stages of the process, differing roles and different abilities to participate in the research. Academic rigor, however, must be maintained by the researcher.

Section snippets

Methods

This scoping review was conducted following the six stage framework developed by Arksey and O'Malley.24

Summary characteristics

An overview of the 27 included articles for this review is presented in Table 1. Eleven articles (41%) were related to end users with a disability including six of these studies (22%) related directly to end user involvement in neurotrauma research. The majority of studies originated from the United Kingdom (55%), Canada (15%) and the Netherlands (11%). Eleven of the selected papers were literature reviews – 4 systematic reviews (15%) and seven narrative or non-systematic reviews (26%). Nine

Discussion

Historically, end users have not been meaningfully involved in disability and rehabilitation research. Examples of involvement have usually been at the priority setting stage and to a lesser degree at the research design phase. More recently, end users have been involved in user-led research projects which involve end users throughout all stages of the research process.

This scoping review has identified and examined existing evidence regarding end user involvement in health care and disability

Conclusions

This scoping review has shown that existing evidence points towards a range of benefits for both the end users and researchers when end users are meaningfully included in research. Due to the paucity of evidence about user involvement in the latter stages of the research, little is known about how end users can be involved in the dissemination and knowledge translation stages of the research process. This gap in evidence needs to be filled to ensure better understanding about the comprehensive

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    Funding: This review was funded by the Institute for Safety, Compensation and Recovery Research (ISCRR), Monash University, Melbourne, Australia.

    Prior presentation of abstracts: http://www.iscrr.com.au/research/programs/neurotrauma/22-32-01-user-engagement-summary-01nov13.pdf.

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