The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Research for Caregivers and Healthcare Professionals

Recruitment and consent of women with intellectual disabilities in a randomized control trial of a health promotion intervention

Swaine, J.G., Parish, S.L., Luken, K., Atkins, L.
Journal of Intellectual Disability Research
. 2011;55(5):474-483

Abstract:  The need for evidence-based health promotion interventions for women with intellectual and developmental disabilities is critical. However, significant barriers impede them from participating in research, including those related to recruitment and obtaining informed consent. Methods:  This study describes a procedure for the recruitment and consent of women with intellectual disabilities into a community-based, multi-site randomized controlled trial. Results:  Of 269 women who participated in information sessions, 203 (75%) enrolled in the study. While women with and without legal guardians consented at the same approximate rates (83% and 85%, respectively), those with legal guardians enrolled at significantly lower rates (61%) because of lower rates (74%) of guardian consent. Conclusions:  It is possible to recruit community-dwelling women with intellectual disabilities into randomized controlled trials at relatively high participation rates. Recruiting women who have guardians poses additional challenges for researchers.

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