Literature DB >> 34369629

A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.

N E Conroy1, K E McDonald2, R S Olick3.   

Abstract

BACKGROUND: Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust.
METHODS: Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation.
RESULTS: Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation.
CONCLUSIONS: Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.
© 2021 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Entities:  

Keywords:  adults with intellectual disability; attitudes; community-engaged research; research ethics; research participation; trust

Mesh:

Year:  2021        PMID: 34369629      PMCID: PMC8428784          DOI: 10.1111/jir.12877

Source DB:  PubMed          Journal:  J Intellect Disabil Res        ISSN: 0964-2633


  26 in total

1.  Recruitment and consent of women with intellectual disabilities in a randomised control trial of a health promotion intervention.

Authors:  J Swaine; S L Parish; K Luken; L Atkins
Journal:  J Intellect Disabil Res       Date:  2011-03-08

2.  Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Carolyn I Kim; Emily J LoBraico; Ellis M Prather; Robert S Olick
Journal:  J Empir Res Hum Res Ethics       Date:  2016-07-31       Impact factor: 1.742

3.  What's the Harm? Harms in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick; The Project Ethics Expert Panel
Journal:  Am J Intellect Dev Disabil       Date:  2017-01

4.  A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick
Journal:  Disabil Health J       Date:  2017-12-13       Impact factor: 2.554

5.  Where are persons with intellectual disabilities in medical research? A survey of published clinical trials.

Authors:  M A Feldman; J Bosett; C Collet; P Burnham-Riosa
Journal:  J Intellect Disabil Res       Date:  2013-09-03

6.  Ethical challenges and complexities of including people with intellectual disability as participants in research.

Authors:  Teresa Iacono
Journal:  J Intellect Dev Disabil       Date:  2006-09

7.  "You can't be cold and scientific": community views on ethical issues in intellectual disability research.

Authors:  Katherine E McDonald; Nicole M Schwartz; Colleen M Gibbons; Robert S Olick
Journal:  J Empir Res Hum Res Ethics       Date:  2015-03-13       Impact factor: 1.742

8.  The human rights context for ethical requirements for involving people with intellectual disability in medical research.

Authors:  T Iacono; R Carling-Jenkins
Journal:  J Intellect Disabil Res       Date:  2012-11

9.  Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent.

Authors:  Chris Taua; Christine Neville; Julie Hepworth
Journal:  Int J Ment Health Nurs       Date:  2014-05-30       Impact factor: 3.503

10.  Research ethics and intellectual disability: broadening the debates.

Authors:  Licia Carlson
Journal:  Yale J Biol Med       Date:  2013-09-20
View more
  1 in total

1.  Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.

Authors:  Katherine E McDonald; Colleen Gibbons; Nicole Conroy; Robert S Olick
Journal:  J Appl Res Intellect Disabil       Date:  2021-09-24
  1 in total

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