Factors affecting enrollment in literacy studies for English‐ and Spanish‐speaking cancer patients

Du, Hongwu; Valenzuela, Veronica; Diaz, Patricia I.; Cella, David; Hahn, Elizabeth A.

doi:10.1002/sim.3259

Cited by 4 publications

(1 citation statement)

References 36 publications

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“…Recruitment from cancer registries allows access to a population-based sample; however, the reach can be low. In addition, ethnic minorities are a hard-to-reach population because of several factors (e.g., age, educational attainment, distance, recruiting site [e.g., public hospital], income, language) (Du et al, 2008). Therefore, given the demographics of the current population, the drop-out rate was not significant.…”

Section: Lessons Learnedmentioning

confidence: 99%

Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study

Ashing-Giwa¹,

Rosales²

2012

Oncology Nursing Forum

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Section: Lessons Learnedmentioning

confidence: 99%

Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study

Ashing-Giwa¹,

Rosales²

2012

Oncology Nursing Forum

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Exploring the influence of demographic and medical characteristics of African-American and Latinas on enrollment in a behavioral intervention study for breast cancer survivors

2014

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Our findings suggest that enrollment in research studies may be influenced by complex and multi-dimensional factors stemming from subjects' characteristics including ethnicity, culture, language proficiency and literary, and socioeconomic status, as well as medical characteristics including co-occurring chronic illness and psychological status. Thus, comprehensive, multi-method research studies are urgently needed to better understand and address the challenge of minority recruitment in biomedical research. To increase research participation among cancer survivors, it is imperative to implement focused strategies that will support and encourage individuals' enrollment and continued participation in studies.

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Perspective: The Case for Research Justice: Inclusion of Patients With Limited English Proficiency in Clinical Research

et al. 2011

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Persons with limited English proficiency (LEP) constitute a growing portion of the U.S. population, yet they are underrepresented in clinical research. This inherently limits the societal benefits of the research and its generalizability to ethnic populations living in the United States. To illustrate the complexity associated with including LEP participants in clinical research, the authors critically evaluated LEP consent requirements posted on the Web sites of 134 academic health centers in March 2008. They found wide variability with regard to consent policies and striking interinstitutional differences in posted IRB policies and attitudes toward consent of LEP patients in research. The authors argue this variation highlights competing concerns between autonomy and justice. Outcomes-based justice requires inclusion of LEP patients in the research, yet the consent process is often resource-intensive and complex. The authors suggest that more uniform and specific guidance from federal agencies for enrollment of LEP patients in clinical research be established and that this guidance explicitly recalibrate the current balance between autonomy and justice. Investigators and institutional review boards should also develop streamlined best practices to reduce unnecessary effort and expense associated with recruitment of LEP individuals. LEP individuals should have fair access to clinical research in order to fully realize individual and societal benefits of their participation and to ensure the generalizability of scientific discovery.

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Factors affecting enrollment in literacy studies for English‐ and Spanish‐speaking cancer patients

Cited by 4 publications

References 36 publications

Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study

Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study

Exploring the influence of demographic and medical characteristics of African-American and Latinas on enrollment in a behavioral intervention study for breast cancer survivors

Perspective: The Case for Research Justice: Inclusion of Patients With Limited English Proficiency in Clinical Research

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