Literature DB >> 21385259

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

J Swaine1, S L Parish, K Luken, L Atkins.   

Abstract

BACKGROUND: 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 randomised 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 randomised controlled trials at relatively high participation rates. Recruiting women who have guardians poses additional challenges for researchers.
© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

Entities:  

Mesh:

Year:  2011        PMID: 21385259     DOI: 10.1111/j.1365-2788.2011.01399.x

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


  8 in total

1.  Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records.

Authors:  Susan L Parish; Jamie G Swaine; Esther Son; Karen Luken
Journal:  Public Health Rep       Date:  2013 Nov-Dec       Impact factor: 2.792

2.  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

3.  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
Journal:  J Empir Res Hum Res Ethics       Date:  2014-07       Impact factor: 1.742

4.  A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities.

Authors:  Jacqueline M McGinley; Christina N Marsack-Topolewski
Journal:  Glob Qual Nurs Res       Date:  2022-05-11

5.  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

Review 6.  Strategies to improve recruitment to randomised trials.

Authors:  Shaun Treweek; Marie Pitkethly; Jonathan Cook; Cynthia Fraser; Elizabeth Mitchell; Frank Sullivan; Catherine Jackson; Tyna K Taskila; Heidi Gardner
Journal:  Cochrane Database Syst Rev       Date:  2018-02-22

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

Authors:  N E Conroy; K E McDonald; R S Olick
Journal:  J Intellect Disabil Res       Date:  2021-08-09

8.  A Digital Health App to Assess Decisional Capacity to Provide Informed Consent: Protocol for a Randomized Controlled Trial.

Authors:  Robert D Furberg; Melissa Raspa; Anne C Wheeler; Lauren A McCormack; Donald B Bailey
Journal:  JMIR Res Protoc       Date:  2018-11-19
  8 in total

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