South Asian participation in clinical trials: The views of lay people and health professionals

Hussain-Gambles, Mah; Atkin, Karl; Leese, Brenda

doi:10.1016/j.healthpol.2005.07.022

Cited by 71 publications

(86 citation statements)

References 26 publications

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“…Similarly in the UK, The Race Relations Amendment Act (2000) and the NHS strategy to address inequalities (2000) have raised the bar for clinical trials enrollment of ethnic minorities, (e.g. South Asians who currently make up 4% of the UK population) who are under-represented in clinical trials (Hussain-Gambles et al 2006). For more than a decade, researchers in the US have been struggling to identify and overcome a wide range of barriers to minority accrual.…”

Section: Introductionmentioning

confidence: 99%

“…While the literature on ethnic minority recruitment is predominantly focused on the US, similar barriers have been raised in the UK (Jolly et al 2005;Hussain-Gambles et al 2006;McDaid 2006), and it is likely that these issues are relevant in other countries with increasingly diverse populations and persistent health disparities (e.g. in European and South American countries).…”

Section: Introductionmentioning

confidence: 99%

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Recruiting Low-Income Healthy Women to Research: An Exploratory Study

2007

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Objective-The study goals were (1) to assess the feasibility of using an existing telephone health information and referral service for low-income, ethnically diverse women to recruit women for research participation; (2) to assess the feasibility of recruiting low-income, African American and Latino men into health research through the women callers to the telephone service; and (3) to describe the challenges women face and the strategies they use when talking to men about the men's health and research participation.Design-We recruited women for individual semi-structured qualitative interviews via the Every Woman Counts (EWC) telephone information and referral service, a California Department of Health Services Cancer Detection Program. This paper describes our eligibility and recruitment assessment, and our qualitative data from 23 interviews with low-income African American and Latino women who called EWC.Results-We found that it was feasible to recruit women, but not to recruit men through women who call this telephone service. Almost 50% (113) of women demographically eligible for recruitment, completed our screening questionnaire, despite calling EWC for a different purpose. Some 48% (54) of those women were eligible for an interview. Of interview-eligible women, 58% (10) of African Americans and 35% (13) of Latinos completed an interview. Only 17% (4) of women referred a man for participation in an interview for our study. Several themes emerged from our analysis of interview data: (1) women's role in men's health can be significant but is often uneasy; (2) challenges when talking to men about their health include health access, gender dynamics, and men's fear of health care; (3) women's understanding of research may be limited; (4) women use a range of strategies to address and overcome men's resistance to taking care of their health and participating in research. Conclusions-The challenges women face when talking with men about their health affect their ability to effectively speak to men about research participation. However, EWC and similar telephone health services may be an effective means for recruiting low-income women to chemoprevention and other studies requiring healthy participants. HHS Public Access

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Recruiting Low-Income Healthy Women to Research: An Exploratory Study

2007

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“…Even when interpreters are available, patients with limited English proficiency may not be offered trials due to the logistical challenges of explaining trials to patients via an interpreter in a limited time period. 24,25 Clinicians may also worry about how well trained interpreters are to discuss clinical trials and the ramifications of inaccuracies in interpretation for achieving informed consent. 24,26 Clinicians' concerns about CALD patients with limited English proficiency struggling to understand trials are not unreasonable given that many English-speaking patients find trial information difficult to comprehend.…”

Section: Barriers To Trial Participationmentioning

confidence: 99%

“…24,25 Clinicians may also worry about how well trained interpreters are to discuss clinical trials and the ramifications of inaccuracies in interpretation for achieving informed consent. 24,26 Clinicians' concerns about CALD patients with limited English proficiency struggling to understand trials are not unreasonable given that many English-speaking patients find trial information difficult to comprehend. 27,28 Data regarding the use of interpreters or bilingual family members to explain trials was unavailable in this instance, but may be worth examining in future studies, along with levels of understanding among both interpreters and patients.…”

Section: Barriers To Trial Participationmentioning

confidence: 99%

Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers

Smith

Agar

Delaney

et al. 2017

Asia-Pac J Clncl Oncology

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Aim: Clinical trials play a critical role in advancing cancer care, but international research shows that few cancer patients, particularly culturally and linguistically diverse (CALD) patients, participate in trials. This limits generalizability of trial results and increases health disparities. This study aimed to establish rates and correlates of trial participation among CALD patients in South Western Sydney Local Health District (SWSLHD), a highly culturally diverse area. Conclusions: Limited English proficiency seems particularly unfavorable to trial participation.Development and evaluation of strategies to overcome language barriers (e.g. simplified and translated multimedia participant information materials) is needed.

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“…5 This often inadvertent exclusion has serious implications for medical science by limiting validity and generalisability 6 and for social justice by affecting the allocation of resources for services and research. Research involving minority ethnic groups is also relevant to the majority 'white' population, as it increases understanding of the aetiology and management of long-term conditions;…”

Section: The Need For Addressing the Under-representation Of Minoritymentioning

confidence: 99%