Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research

Brooker, Katie, van Dooren, Kate, Tseng, Chih-Han, McPherson, Lyn, Lennox, Nick and Ware, Robert (2015) Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research. Perspectives in Public Health, 135 4: 204-211. doi:10.1177/1757913914552583


Author Brooker, Katie
van Dooren, Kate
Tseng, Chih-Han
McPherson, Lyn
Lennox, Nick
Ware, Robert
Title Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research
Journal name Perspectives in Public Health   Check publisher's open access policy
ISSN 1757-9139
1757-9147
Publication date 2015-07
Year available 2014
Sub-type Critical review of research, literature review, critical commentary
DOI 10.1177/1757913914552583
Volume 135
Issue 4
Start page 204
End page 211
Total pages 8
Place of publication London, United Kingdom
Publisher Sage Publications
Collection year 2015
Language eng
Formatted abstract
Aims: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability.

Methods: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported.

Results: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases.

Conclusions: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.
Keyword Intellectual disability
Inclusion
Epidemiology
Research design
Systematic review
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Published online 7 November 2014

Document type: Journal Article
Sub-type: Critical review of research, literature review, critical commentary
Collections: Official 2015 Collection
School of Public Health Publications
School of Medicine Publications
 
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Created: Tue, 10 Feb 2015, 10:21:01 EST by Nicholas Lennox on behalf of Mater Research Institute-UQ