Literature DB >> 15816817

Beating the barriers: recruitment of people with intellectual disability to participate in research.

N Lennox1, M Taylor, T Rey-Conde, C Bain, D M Purdie, F Boyle.   

Abstract

BACKGROUND: The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research.
METHODS: Our project was a randomized controlled trial aiming to improve health advocacy of people with ID. We approached many organizations to recruit participants and kept records of our results. Recruitment was very low for the first 4 months. Then we adopted two new recruitment strategies--in-service telephone recruitment and meetings with prospective participants. We then monitored the subsequent recruitment rates. We also questioned participants about the difficulties they encountered when considering recruitment.
RESULTS: Initial recruitment of participants yielded less than one-third of the expected number. Additional strategies implemented were partially successful. Significant barriers to recruitment included several sectoral issues and the challenges arising from the research process.
CONCLUSIONS: While this population is a difficult one to reach for research, attempts to do so should not be abandoned, because the potential health benefits for this underserved group far outweigh the recruitment barriers experienced.

Entities:  

Mesh:

Year:  2005        PMID: 15816817     DOI: 10.1111/j.1365-2788.2005.00618.x

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


  36 in total

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Authors:  William F Sullivan; John Heng; Donna Cameron; Yona Lunsky; Tom Cheetham; Brian Hennen; Elspeth A Bradley; Joseph M Berg; Marika Korossy; Cynthia Forster-Gibson; Maria Gitta; Chrissoula Stavrakaki; Bruce McCreary; Irene Swift
Journal:  Can Fam Physician       Date:  2006-11       Impact factor: 3.275

Review 2.  Effects of health screening for adults with intellectual disability: a pooled analysis.

Authors:  Nicholas Lennox; Robert Ware; Chris Bain; Miriam Taylor Gomez; Sally-Ann Cooper
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3.  Making the invisible visible: professional education to eliminate disparities in clinical trials.

Authors:  Larry Laufman
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4.  Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders.

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Journal:  J Autism Dev Disord       Date:  2019-09

5.  Is It Worth It? Benefits in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick
Journal:  Intellect Dev Disabil       Date:  2016-12

6.  Parent ratings of ability to consent for clinical trials in fragile X syndrome.

Authors:  Donald B Bailey; Melissa Raspa; Anne Wheeler; Anne Edwards; Ellen Bishop; Carla Bann; David Borasky; Paul S Appelbaum
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7.  Mental illness, problem behaviour, needs and service use in adults with intellectual disability.

Authors:  Matthias Schützwohl; Andrea Koch; Nadine Koslowski; Bernd Puschner; Elke Voß; Hans Joachim Salize; Andrea Pfennig; Anke Vogel
Journal:  Soc Psychiatry Psychiatr Epidemiol       Date:  2016-03-07       Impact factor: 4.328

8.  Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders.

Authors:  Kaaren Haas; Debra Costley; Marita Falkmer; Amanda Richdale; Kate Sofronoff; Torbjörn Falkmer
Journal:  J Autism Dev Disord       Date:  2016-05

9.  Assessing Understanding and Obtaining Consent from Adults with Intellectual Disabilities for a Health Promotion Study.

Authors:  Willi Horner-Johnson; Danielle Bailey
Journal:  J Policy Pract Intellect Disabil       Date:  2013-09

10.  Doctor-patient communication with people with intellectual disability--a qualitative study.

Authors:  Magda Wullink; Wemke Veldhuijzen; Henny Mj van Schrojenstein Lantman-de Valk; Job F M Metsemakers; Geert-Jan Dinant
Journal:  BMC Fam Pract       Date:  2009-12-17       Impact factor: 2.497

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