Review ArticleA scoping review of end user involvement in disability research
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.