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

Swaine, Jamie G.; Parish, Susan L.; Luken, Karen; Atkins, Lou

doi:10.1111/j.1365-2788.2011.01399.x

Cited by 28 publications

(30 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…36 Briefly, the study began by identifying potential partner agencies across one Southeastern state in the U.S. The research team contacted community colleges, community rehabilitation programs, and mixed residential and vocational sites that provided services to adults with intellectual disabilities.…”

Section: Site Recruitmentmentioning

confidence: 99%

Determinants of Cervical Cancer Screening among Women with Intellectual Disabilities: Evidence from Medical Records

et al. 2013

View full text Add to dashboard Cite

Objective. We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state.Methods. Using medical records data from 2006 through 2010 for communitydwelling women with intellectual disabilities who were 18-65 years of age (n5163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics.Results. Of women 18-65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008-2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities.Conclusions. Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets.

show abstract

Section: Site Recruitmentmentioning

confidence: 99%

Determinants of Cervical Cancer Screening among Women with Intellectual Disabilities: Evidence from Medical Records

et al. 2013

View full text Add to dashboard Cite

show abstract

“…Study procedures to obtain consent and assent from women witb intellectual disability to enroll in the larger study are described elsewhere (Swaine, Parish, Luken, & Atkins, 2011). Potential respondents were contacted by phone.…”

Section: Sample Recruitment and Selectionmentioning

confidence: 99%

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

Swaine¹,

Dababnah²,

Parish³

et al. 2013

Intellectual and Developmental Disabilities

View full text Add to dashboard Cite

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n = 32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

show abstract

“…We still do not have a validated approach to enhance decisional capacity in individuals with IDD (Cleaver et al, 2010). A variety of techniques may be needed depending on the participant’s skills (Swaine et al, 2011). New technologies, primarily applications designed for tablets such as the iPad, have great potential for enhancing communication with people with IDD (Kagohara et al, 2013; Palmer, Wehmeyer, Davies, & Stock, 2012; Shane et al, 2012).…”

Section: Best Practicesmentioning

confidence: 99%

Parent Ratings of Ability to Consent for Clinical Trials in Fragile X Syndrome

Bailey

Raspa

Wheeler

et al. 2014

Journal of Empirical Research on Human Research Ethics

View full text Add to dashboard Cite

Advances in understanding neurobiology and intellectual disabilities have led to clinical trials testing new medications. This study assessed parents’ perceptions of the ability of their son or daughter with fragile X syndrome (FXS), an inherited form of intellectual disability, to participate in the consent process for clinical trials. Four hundred and twenty-two families participated in a survey that included six items assessing various aspects of the ability to provide consent. A rank ordering of decisional tasks was found. The easiest task was to understand that the medication was different from his or her medical treatment; the most difficult was the ability to understand and weigh the potential benefits and risks of study participation. Factor analysis suggested that despite the range in difficulty, the six items were best summarized by a single decisional ability score. Parents of 29% of males reported that their son was not at all capable of participating, but the remainder exhibited a range of decisional skills. Factors associated with this variability include age, and parents’ willingness to enroll their child in clinical trials. We conclude that many individuals with FXS appear to be able to participate at some level in the consent or assent process, but will likely need individualized support to maximize effective participation.

show abstract

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

Abstract: 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.

Cited by 28 publications

References 16 publications

Determinants of Cervical Cancer Screening among Women with Intellectual Disabilities: Evidence from Medical Records

Determinants of Cervical Cancer Screening among Women with Intellectual Disabilities: Evidence from Medical Records

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

Parent Ratings of Ability to Consent for Clinical Trials in Fragile X Syndrome

Contact Info

Product

Resources

About