scholarly journals Recruiting ethnic minority participants to a clinical trial: a qualitative study

BMJ Open ◽  
2013 ◽  
Vol 3 (4) ◽  
pp. e002750 ◽  
Author(s):  
Virginia MacNeill ◽  
Chinedu Nwokoro ◽  
Chris Griffiths ◽  
Jonathan Grigg ◽  
Clive Seale
2013 ◽  
Vol 98 (Suppl 1) ◽  
pp. A73-A73
Author(s):  
C. Nwokoro ◽  
V. MacNeill ◽  
C. Griffiths ◽  
J. Grigg ◽  
C. Seale

Author(s):  
Renato M. Liboro ◽  
Sherry Bell ◽  
Brandon Ranuschio ◽  
Lianne Barnes ◽  
Jenna Despres ◽  
...  

Evidence-based research has highlighted the need for exploring factors that support the mental health of men who have sex with men living with HIV/AIDS (MSMLWH), and environmental influences that promote their resilience to HIV/AIDS. This exploratory study utilized a community-based participatory research approach to investigate barriers and facilitators to promoting resilience to HIV/AIDS, specifically among racial and ethnic minority, middle-aged and older MSMLWH, a population that continues to be significantly impacted by HIV/AIDS today. This collaborative, qualitative study recruited participants who identified as racial or ethnic minority MSMLWH, were aged 40 or older, and resided in Ontario, Canada. Participants (n = 24) discussed in their interviews barriers and facilitators to promoting resilience to HIV/AIDS, which they recognized from their lived experiences. Utilizing thematic analysis, themes related to barriers and facilitators to promoting resilience to HIV/AIDS were identified. Themes related to identified barriers included: (1) language proficiency, (2) racism, (3) pernicious norms in North American gay culture, and (4) HIV stigma. Themes related to identified facilitators included: (1) compartmentalization, (2) perseverance, and (3) community-based health and social services. This article discusses the implications of the study’s findings, particularly on how they may influence the development of future services for racial and ethnic minority, middle-aged and older MSMLWH.


2015 ◽  
Vol 31 (2) ◽  
pp. 325-334 ◽  
Author(s):  
Jing Jing Liu ◽  
Emma Davidson ◽  
Raj Bhopal ◽  
Martin White ◽  
Mark Johnson ◽  
...  

Circulation ◽  
2018 ◽  
Vol 137 (suppl_1) ◽  
Author(s):  
Sandi Shrager

Background: Retention of participants is a critical component of ensuring the scientific goals of longitudinal research studies. Differential rates of attrition for ethnic minority participants can be particularly problematic in the fields of health and cardiovascular research, where ethnic minorities are shown to have disproportionately higher rates of both cardiovascular disease and risk factors for heart disease such as diabetes, hypertension, and obesity. The ability to explore the underlying causes of these differences is adversely affected when attrition in a study occurs at a higher rate among the ethnic minority subject participants. Understanding and preventing the causes of subject drop-out to improve retention among all ethnic groups is therefore a vital endeavor of any longitudinal research or cohort study. Methods: We analyzed data on ten-year retention rates of Caucasian, Chinese, Hispanic, and African-American participants in the Multi-Ethnic Study of Atherosclerosis (MESA). 6814 participants were recruited into the study in 2000, and 5,865 participants were still alive for the fifth in-person examination ten years later. Of these, 4651 participants returned for this examination. Logistic regression was used to examine the association between retention in the study, race/ethnicity and various baseline demographic characteristics, including age, gender, marital status, income, employment, education, language, place of birth, health insurance status and overall health status as measured by a 10-year predicted cardiovascular disease rate. Results: Racial differences in retention were observed, with Chinese, African-American, and Hispanic participants having 30-40% lower odds of being retained than Caucasian participants. However, after adjusting for demographic variables, these differences were primarily explained by indicators of socioeconomic status. Higher income, higher education, employment status, availability of health insurance and health status were significantly associated with ten-year retention in the study across all racial/ethnic groups. Marital status, gender, age, and birthplace (US vs non-US) were not associated with retention. Conclusions: Although minority participants were retained at lower rates in MESA, this can be primarily explained by differences in socioeconomic status and health status. Individuals with higher SES indicators may have life circumstances making participation in an examination taking much of a full day more plausible. Future studies should consider how these findings may inform developing support services or incentives which make follow-up participation in clinical research more persuasive for these individuals.


Author(s):  
Fiona Ecarnot ◽  
Romain Chopard ◽  
Francois Schiele ◽  
Nicolas Meneveau

Introduction: Guidelines rely on evidence-based data, and clinical research is key to providing this evidence-base. Yet the factors that influence a patient’s decision to participate (or not) in research remain poorly documented. We aimed to investigate the factors that determine the decision to accept or decline clinical trial participation, using a qualitative approach. Methods: Single-centre, qualitative study using semi-directive interviews with patients (pts) who had been invited to participate in a randomized clinical trial and who had given their decision. Both pts who refused and pts who accepted were included. There were no inclusion criteria; all pts who met the inclusion criteria of the selected trial and had been approached for consent were eligible. Pts also completed a questionnaire rating 16 statements examining reasons for accepting or declining trial entry. Verbatim from the interviews were analysed using a grounded theory (GT) approach. Results: To date, 14 patients have been interviewed; average age 75±7 years. Two pts did not know if they were currently participating in a trial or not; 1 said he was not participating although he had provided consent. From a GT perspective, the main concern of patients does not appear to be the question of research participation, but rather the fact of being sick, and their overriding preoccupation is how to return to their previous state of wellbeing and overcome the current acute episode. Regarding the decision to participate in research, the main themes that arose were: (1) the positive value of the trial for the patient (benefitting from the intervention; interest in receiving closer and/or more regular follow-up due to trial participation), although some pts clearly do not understand the concept of randomization; (2) the level of engagement in the process of care (some pts do not bother to read the information given to them, but just accept what is proposed without question, while others decline immediately without reading trial information). Two dimensions emerge, namely physical and emotional health, with a spectrum ranging from fragile to robust. Where the patient is situated on this spectrum appears to influence their attitude towards research participation. Conclusions: The decision to participate (or not) in clinical research appears to be more related to the patient’s general behaviour and attitude when sick, rather than any specific trial-related constraints or advantages. The level of comprehension of pts who have been through the consent process casts a doubt on the “informed” character of the consent.


BMJ Open ◽  
2016 ◽  
Vol 6 (4) ◽  
pp. e009052 ◽  
Author(s):  
Floor van Rosse ◽  
Jeanine Suurmond ◽  
Cordula Wagner ◽  
Martine de Bruijne ◽  
Marie-Louise Essink-Bot

2011 ◽  
Vol 11 (1) ◽  
Author(s):  
Sinead Brophy ◽  
Annie Crowley ◽  
Rupal Mistry ◽  
Rebecca Hill ◽  
Sopna Choudhury ◽  
...  

2012 ◽  
Vol 27 (2) ◽  
pp. 257-262 ◽  
Author(s):  
Gwendolyn P. Quinn ◽  
Alexis Koskan ◽  
Kristen J. Wells ◽  
Luis E. Gonzalez ◽  
Cathy D. Meade ◽  
...  

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