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"I Did It for Us and I Would Do It Again": Perspectives of Rural Latinos on Providing Biospecimens for Research
Abstract
Objectives:
We elicited perspectives of rural Latino farmworkers and non-farmworkers about their participation in a community-based participatory pesticides exposure study in which they provided multiple biospecimens.
Methods:
Between March and April 2012, we conducted semistructured, one-on-one interviews with 39 rural Latino farmworkers and non-farmworkers in Washington State (n = 39). Nineteen open-ended interview questions aimed to elicit participants' attitudes toward, expectations and experiences of biospecimen collection for research, and willingness to participate in future biomedical research studies. We reviewed and coded transcriptions using qualitative principles of grounded theory in which concepts were identified and themes derived from interview data.
Results:
We grouped themes into 3 major categories: (1) motivation to participate, (2) challenges of participation, and (3) perceived rewards of participation. Many participants were motivated by the perceived importance of the study topic and a desire to acquire and contribute to new knowledge. Respondents said that the benefits of participation outweighed the challenges, and many expressed satisfaction to be able to contribute to research that would benefit future generations.
Conclusions:
Our findings supported the use of community-based participatory research to engage minorities as participants and invested parties in such studies.
... To our knowledge, only two studies have focused on psychosocial factors that influence biobanking participation among Mexican-Americans. In one study, rural Hispanics, primarily of Mexican-American descent, reported donating biospecimens because of their interest in contributing to science and benefiting future generations [15] . In the other study, Mexican-Americans indicated that lack of knowledge and information about biobanking limits their participation, but that medical distrust was not an important issue for them [16] . ...
... Many of our findings are consistent with those of other studies examining Hispanics' willingness to participate in biobanking. As observed in studies with other Hispanic subgroups, Mexican-Americans in our study expressed an interest in donating biospecimens to a biobank [8,20] and were willing to do so to help advance scientific research or for other altruistic reasons, such as potentially benefiting family in the future [10,[12][13][14][15][16]21] . Studies with other racial/ethnic minority groups, such as African Americans, Vietnamese and Chinese individuals [10,13,14,21] as well as non-Hispanic Whites [22] , also found that the desire to help future generations and contribute to science was a motivator for participating in biobanking. ...
... Similar to studies across other Hispanics and racial/ ethnic groups [12,13,15,21,25] , some participants had a misperception that participation in biobanking would result in personal benefit such as being diagnosed if they had a disease, and this may also have informed their willingness to participate. Often called diagnostic misconception, this belief is when individuals misunderstand the intent of the research and believe there will be a personal benefit to participating through receipt of additional medical care, such as diagnosis of conditions of which they may have been previously unaware [16] . ...
Background:
Most biospecimens in the US are collected from non-Hispanic Whites, limiting the generalizability of findings. There is a need to increase participation in biobanking among ethnic and racial minorities. The purpose of this study was to use qualitative methods to identify factors that may influence Mexican-American individuals' willingness to participate in biobanking.
Methods:
We conducted 15 focus groups in three Texas cities with Mexican-American individuals, in both Spanish and English.
Results:
Lack of knowledge about medical research and biobanks, lack of information about the specifics of biobanking participation, lack of communication of the results, fear of pain or harm, and distrust of the healthcare system or health research were identified as barriers to biobanking participation. Facilitators to participation were altruism, safety, understanding biobanking procedures and purposes, perceived benefits to participation, and culturally appropriate recruitment strategies. Although Mexican-Americans living in Texas are willing to donate biospecimens for altruistic reasons, such as helping society or advancing science, they want more information about what biobanking entails. They want to be assured that participation will not cause them harm and that the research is conducted with good intentions.
Conclusion:
Results from this study can inform educational materials or interventions to increase Hispanic participation in biobanking.
... There is an expanding body of literature that documents the significant efforts to engage ethnically and racially diverse communities in biospecimen research across the US (Braun et al. 2014;Cohn et al. 2014;Dang et al. 2014;Dash et al. 2014;Erwin et al. 2013;Lopez et al. 2014;Luque et al. 2012;Rodriguez et al. 2013). To date, only a few studies have explored biobanking awareness, perceptions, beliefs (Hohl et al. 2014;Luque et al. 2012;Rodriguez et al. 2013), willingness to donate biospecimens (Hohl et al. 2014;Lopez et al. 2014), and attitudes toward biobanking (Hohl et al. 2014) among Hispanic populations in the US. Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (Luque et al. 2012;Rodriguez et al. 2013). ...
... There is an expanding body of literature that documents the significant efforts to engage ethnically and racially diverse communities in biospecimen research across the US (Braun et al. 2014;Cohn et al. 2014;Dang et al. 2014;Dash et al. 2014;Erwin et al. 2013;Lopez et al. 2014;Luque et al. 2012;Rodriguez et al. 2013). To date, only a few studies have explored biobanking awareness, perceptions, beliefs (Hohl et al. 2014;Luque et al. 2012;Rodriguez et al. 2013), willingness to donate biospecimens (Hohl et al. 2014;Lopez et al. 2014), and attitudes toward biobanking (Hohl et al. 2014) among Hispanic populations in the US. Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (Luque et al. 2012;Rodriguez et al. 2013). ...
... There is an expanding body of literature that documents the significant efforts to engage ethnically and racially diverse communities in biospecimen research across the US (Braun et al. 2014;Cohn et al. 2014;Dang et al. 2014;Dash et al. 2014;Erwin et al. 2013;Lopez et al. 2014;Luque et al. 2012;Rodriguez et al. 2013). To date, only a few studies have explored biobanking awareness, perceptions, beliefs (Hohl et al. 2014;Luque et al. 2012;Rodriguez et al. 2013), willingness to donate biospecimens (Hohl et al. 2014;Lopez et al. 2014), and attitudes toward biobanking (Hohl et al. 2014) among Hispanic populations in the US. Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (Luque et al. 2012;Rodriguez et al. 2013). ...
Background: Few research studies with non-English-Speaking audiences have been conducted to explore community members’ views on biospecimen donation and banking, and no validated Spanish-language multi-scale instruments exist to measure community perspectives on biobanking. This study describes the development and psychometric properties of the Biobanking Attitudes aNd Knowledge Survey-Spanish (BANKS-SP).
Methods: The BANKS was translated into Spanish using the Brislin method of translation. Draft BANKS-SP items were refined through cognitive interviews, and psychometric properties were assessed in a sample of 85 Spanish-speaking individuals recruited at various community events in a three county area in Central West Florida, USA.
Results: The final BANKS-SP includes 3 scales: Attitudes, Knowledge, and Self-Efficacy; as well as 3 single items, which evaluated receptivity and intention to donate a biospecimen for research. The final Cronbach’s alpha coefficients for the two scales that use Likert response format indicated adequate internal consistency (Attitudes: α=.79; Self-Efficacy: α=.91). Intention to donate blood and intention to donate urine were positively correlated with attitudes, self-efficacy, and receptivity to learning more about biobanking (all p’s <.001). BANKS-SP-Knowledge was not statistically significantly correlated with other BANKS-SP scales or single items measuring intention to donate a biospecimen for research and receptivity for learning more about biospecimen research.
Conclusions: The BANKS-SP Attitudes and Self-Efficacy scales show evidence of satisfactory reliability and validity. Additional research should be conducted with larger samples to assess the BANKS-SP instrument’s reliability and validity. A valid and reliable Spanish-language instrument measuring Spanish-speaking community members’ views about biobanking may help researchers evaluate relevant communication interventions to enhance understanding, intention, and actual biospecimen donation among this population.
... Two recent studies, by Hohl et al. (2014) and Cottler et al. (2013) [1,2], provide support for the need to meaningfully engage underrepresented minorities as invested parties in community-based participatory research to address inequalities in health. Hohl et al. (2014) [1] published a study entitled "I Did It for Us and I Would Do It Again: Perspectives of Rural Latinos on Providing Biospecimens for Research". ...
... Two recent studies, by Hohl et al. (2014) and Cottler et al. (2013) [1,2], provide support for the need to meaningfully engage underrepresented minorities as invested parties in community-based participatory research to address inequalities in health. Hohl et al. (2014) [1] published a study entitled "I Did It for Us and I Would Do It Again: Perspectives of Rural Latinos on Providing Biospecimens for Research". ...
... Two recent studies, by Hohl et al. (2014) and Cottler et al. (2013) [1,2], provide support for the need to meaningfully engage underrepresented minorities as invested parties in community-based participatory research to address inequalities in health. Hohl et al. (2014) [1] published a study entitled "I Did It for Us and I Would Do It Again: Perspectives of Rural Latinos on Providing Biospecimens for Research". Investigators reported results from 39 semi-structured interviews to understand the perspectives of rural Latino farmworkers and non-farmworkers living in Yakima Valley, Washington, on providing biospecimens for research. ...
... Ethical concerns are magnified for Latino populations, who face substantial barriers to accessing health care in the US [8], but are increasingly sought after as research participants to improve generalizability, particularly in genomic studies [9,10]. Factors influencing Latinos' participation in studies involving the collection of biologic samples and accompanying phenotypic information have not been well studied [11,12]. Whether expectations of receiving personally meaningful health information as a fringe benefit of participation drive sample donation in a coercive manner is particularly unclear. ...
... Recruitment efforts relied on an NCI Community Networks Program Center (CNPC) based in Sunnyside, Washington with strong connections to the Latino community there. Latinos living in this area of Eastern Washington State, called the lower Yakima Valley, are almost exclusively from Mexico and are similar to Latinos living on the border with respect to income, acculturation, education, and health care access [6,11,21]. Recruitment and survey administration were conducted by two CNPC staff members who are residents of the lower Yakima Valley and fluent in both English and Spanish. Study participants completed the surveys in person at community events, CNPC-sponsored health fairs, and local shopping facilities. ...
... Latinos are projected to make up 31 % of the US population by 2060 [29], but currently lack robust representation in clinical research funded by the National Institutes of Health as well as large scale biomarker and other in vitro studies that use de-identified biological samples [30,31]. A growing body of research indicates, however, that Latinos are highly willing to provide biospecimens for research [11,12,32,33]. Eighty four percent of our sample was 'very' or 'somewhat' likely to provide a sample for research in the future. ...
Background:
Expectations of receiving personal health information as a fringe benefit of biospecimen donation-termed diagnostic misconception-are increasingly documented. We developed an instrument measuring conflation of observational biospecimen-based research and clinical care for use with Latino communities, who may be particularly affected by diagnostic misconception due to limited health care access.
Methods:
The instrument was developed using prior qualitative research, revised through cognitive interviewing and expert review, and field tested in a convenience sample of 150 Latino adults in Eastern Washington State. It was further refined through exploratory factor analysis and validated against existing measures of genetic knowledge and researcher trust.
Results:
The final instrument demonstrated high internal consistency, evidence of content and construct validity, and no floor and ceiling effects. Individuals who were unemployed, spoke only Spanish, had no health insurance, received health care outside of traditional venues, and had good self-rated health received higher scores, indicating greater conflation of biospecimen-based research and clinical care.
Conclusions:
The ability to systematically measure beliefs related to diagnostic misconception will help facilitate ethically-informed efforts to recruit Latinos into biospecimen-based research studies.
... Katz et al., 2007;Jimmie B Vaught, Lockhart, Thiel, & Schneider, 2007) In recent years, the efforts to gather biospecimens from underrepresented populations has focused on the importance of working with such communities to promote awareness of the need for biospecimens. Erwin et al., 2012;Hohl, Gonzalez, Carosso, Ibarra, & Thompson, 2014;Kiviniemi et al., 2012) Subsequently, much recent research has underscored the value of community engaged approaches in increasing the number of biospecimens from underrepresented groups. Hohl et al., 2014;Kiviniemi et al., 2012;O'Doherty, Hawkins, & Burgess, 2012) Although working with communities is a necessary part of increasing biospecimen donation, it is not sufficient to the end goal of biospecimen collection. ...
... Erwin et al., 2012;Hohl, Gonzalez, Carosso, Ibarra, & Thompson, 2014;Kiviniemi et al., 2012) Subsequently, much recent research has underscored the value of community engaged approaches in increasing the number of biospecimens from underrepresented groups. Hohl et al., 2014;Kiviniemi et al., 2012;O'Doherty, Hawkins, & Burgess, 2012) Although working with communities is a necessary part of increasing biospecimen donation, it is not sufficient to the end goal of biospecimen collection. A system must be established to encourage health care providers and their ancillary staff, as well as community organizations' representatives, to talk to individuals about the need for biospecimen donation and to offer opportunities to do so. ...
In a personalized medicine environment, it is necessary to have access to a range of biospecimens to establish optimal plans for disease diagnosis and treatment for individual patients. Cancer research is especially dependent on biospecimens for determining ideal personalized treatment for patients. Unfortunately, the vast majority of biospecimens are collected from non-Hispanic White individuals; thus, minority representation is lacking. This has negative implications for comprehensive cancer treatment. The Geographic Management of Cancer Health Disparities Program (GMaP) Region 6 implemented a series of biospecimen education seminars adapted from the Biospecimen and Biobanking module of an existing Cancer Education and Training Program. Regional GMaP partners participated in a train-the-trainer webinar to familiarize themselves with the training materials. Participants trained by the trainers completed pre- and posttests to document changes in awareness, knowledge, and intention. Nine biospecimen education seminars were offered in 2013; 255 health care professionals and representatives from community organizations attended. Participants demonstrated a significant increase in knowledge, intention to donate samples, and intention to talk to patients about biospecimen sample donation. Representatives from community organizations had more improvement on knowledge scores than health care providers. Participation in a well-designed biospecimen education program may ameliorate some of the distrust of biomedical research experienced by racial/ethnic minorities and, in turn, increase needed minority representation in biospecimen collection.
... Similarly, in our study, SOC facilitated the decisional balance by maintaining feelings of belonging, inclusivity, convivial environments, and altruism towards others in the program and future generations. Community members felt that they mattered to each other and the research group and relied on the belief that members' needs would be met through their commitment to being together as previously supported by other studies [6,56]. ...
Latinx represent the second largest ethnic group in the USA and remain significantly underrepresented in research studies. Efforts to better include Latinx make use of community-engaged research (CEnR) approaches, peer-navigators, and cultural humility training for research teams. While these efforts have led to slight increases in Latinx participation, studies to identify strategic practices for better inclusion of Latinx participants are needed. The objective of this study was to qualitatively examine factors leading to successful recruitment and retention of Latinx participants in the Promoting Activity and Stress Reduction in the Outdoors (PASITO) intervention. For this intervention, 99 low-income Latinx clients in a local community were contacted and 52 participants were recruited (53%). All were retained in the 3-month intervention. Of these, 12 were interviewed within 6 months of the close of PASITO by bi-cultural and bi-lingual non-research staff. They conducted one-on-one structured telephone interviews. Of the twelve participants, three (25%) were men, nine (75%) were women, and the mean age was 43.7 (SD = 8.7). Four critical themes for the recruitment and retention of Latinx populations emerged from the interviews: (1) importance of insider researchers; (2) sense of community and belonging; (3) responsive programming; and (4) health-promoting activities. These findings support the significant role insider researchers can play, and social identity theory provides a useful framework for understanding the role of insider researchers in recruiting and retaining Latinx, and likely other minoritized groups, in clinical studies. Insider researchers possess the skills, training, community cultural wealth, in-depth understanding of their communities, and structural competencies that position them to carry out more inclusive studies to address the needs of marginalized communities and advance science.
... Facilitators and barriers to Latino participation in genetic studies and use of genetic screening and testing remain understudied [25][26][27]. Similarly, studies describing the lived experiences of Latino patients who choose to receive genomic screening have been limited to date [23]. ...
Purpose:
The aim of the study was to characterize experiences of Latino participants receiving genomic screening results.
Methods:
Participants were recruited at a federally qualified health center in the USA. In-person, semi-structured interviews were conducted in either Spanish or English by a bilingual, bicultural interviewer. Questions focused on motivations for pursuing genomic sequencing, concerns about receiving genomic screening results, and perceived benefits of receiving genomic information. Interviews were audio-recorded, transcribed, and translated.
Results:
Fifty individuals completed an interview; 39 were conducted in Spanish. Participants described mixed motivations for pursuing genomic screening. Participants viewed the benefits of genomic screening in relation to not only their personal health but to the health of their families and their communities. Participants tended to have few concerns about genomic screening. Those concerns related to potential loss of privacy, misuses of genomic information, and the possibility of receiving distressing results. Some participants had misunderstandings about the scope of the test and the potential implications of their results. Most felt it was better to know about a genetic predisposition to disease than to remain uninformed. Participants felt that genomic screening was worthwhile.
Discussion:
This is one of the first studies to examine the experiences of Latino individuals receiving genomic screening results. Our results suggest that many Latino patients in the US see value in genomic screening and have limited concerns about its potential to cause harm. These results inform ongoing efforts to increase the availability of genomic medicine to underrepresented populations and add to our understanding of sociocultural drivers in the adoption of precision medicine.
... 21 Earlier studies have found that even African Americans with distrust will participate in biobank research; 22 however, it remains unclear if these privacy concerns would lead African Americans to avoid precision medicine. Hispanics also participate in biobanking research 23,24 and have higher awareness of direct-to-consumer genetic testing than African Americans. 25 Nonetheless, biobank participation does not necessarily translate into precision medicine use. ...
Objective:
To better understand African American and Hispanic perspectives on the potential benefits of precision medicine, along with the potential barriers that may prevent precision medicine from being equally beneficial to all. We also sought to identify if there were differences between African American and Hispanic perspectives.
Design:
Six semi-structured focus groups were conducted between May 2017 and February 2018 to identify benefits and barriers to precision medicine. Three groups occurred in Nashville, TN with African American participants and three groups occurred in Miami, FL with Hispanic participants.
Setting:
At community-based and university sites convenient to community partners and participants.
Participants:
A total of 55 individuals participated (27 in Nashville, 28 in Miami). The majority of participants were women (76.5%) and the mean age of participants was 56.2 years old.
Results:
Both African Americans and Hispanics believed precision medicine has the potential to improve medicine and health outcomes by individualizing care and decreasing medical uncertainty. However, both groups were concerned that inadequacies in health care institutions and socioeconomic barriers would prevent their communities from receiving the full benefits of precision medicine. African Americans were also concerned that the genetic and non-genetic personal information revealed through precision medicine would make African Americans further vulnerable to provider racism and discrimination in and outside of health care.
Conclusions:
While these groups believed precision medicine might yield benefits for health outcomes, they are also skeptical about whether African Americans and Hispanics would actually benefit from precision medicine given current structural limitations and disparities in health care access and quality.
... Consent to give blood and urine samples for future research did not differ between Mexican Americans and NHWs who participated in the 2011-2012 National Health and Nutrition Examination Survey [31]. Focus groups and surveys assessing knowledge and beliefs about biospecimens among Hispanics have also found high willingness to provide biospecimens for biomedical research [32][33][34][35][36]. ...
Purpose
Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.
Methods
We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.
Results
Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73–76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92–95%) and relatives (82–87%), but lower for some Asian–American subgroups (probands: 72–88%; relatives: 71–88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.
Conclusions
These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.
... Noting Latinos are the largest and fastest growing minority population in the United States (Ortman & Guarneri, 2009;Passel, Cohn, & Lopez, 2011), such underrepresentation has significant implications in terms of prevention, treatment, and post-treatment care of acute and chronic illness. Extensive qualitative research, has revealed factors that may inhibit participation-such as fear, mistrust of scientists and the government, and lack of understanding-or promote participation-such as such as altruism, race or cultural concordance between researcher and participants, and perception of the importance of the topic-in biomedical research among racial/ethnic minorities (Bakken, Lantigua, Busacca, & Bigger, 2009;Brewer et al., 2014;Calderón et al., 2006;Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999;Friedman, Foster, Bergeron, Tanner, & Kim, 2015;Fryer et al., 2015;Hohl, Gonzalez, Carosso, Ibarra, & Thompson, 2014;van der Velde, Williamson, & Ogilvie, 2009). Katz and colleagues developed a quantitative survey for general use among racial/ethnic minorities (Katz et al., 2006). ...
Racial/ethnic minorities, rural populations, and those with low socioeconomic status income are underrepresented in research in the United States (U.S.). Assessing preferences for recruitment, participation, and the role of beliefs about biomedical research in specific and unique underserved communities represents a potentially critical step in reducing barriers to biomedical research participation. We developed a culturally informed survey to measure factors related to participation, knowledge, expectations, and barriers to biomedical research participation among Latinos living in a U.S. border community. We employed a multidisciplinary team approach to a sequential, three-phase qualitative study that included interviews ( n = 35), focus groups ( n =24), and "think-aloud" cognitive interviews ( n = 5). Our study demonstrates the value of applying multiple qualitative approaches to inform a culturally relevant quantitative survey incorporating words and constructs relevant to the population of interest. The study contributes to qualitative method research paradigms by developing a research protocol that integrates the expertise and perspectives of researchers and community members from multiple disciplines and institutions.
... The present exploratory study in partnership with a Latino farmworker community validated a new approach to study pesticide exposures and their biological effects in children. The high acceptance rate of the procedures in this study confirms enthusiasm for this newly validated approach, and highlights the capacity and potential for integrating basic science research methodology with CBPR methodology among rural Latino communities [44]. In addition, immunostaining of plucked hair follicles proved to be a sensitive, reliable, and non-invasive, procedure -provided that sufficient hair samples are collected. ...
Agriculture in the United States employs youth ages ten and older in work environments with high pesticide levels. Younger children in rural areas may also be affected by indirect pesticide exposures. The long-term effects of pesticides on health and development are difficult to assess and poorly understood. Yet, epidemiologic studies suggest associations with cancer as well as cognitive deficits. We report a practical and cost-effective approach to assess environmental pesticide exposures and their biological consequences in children. Our approach combines silicone wristband personal samplers and DNA damage quantification from hair follicles, and was tested as part of a community-based participatory research (CBPR) project involving ten Latino children from farmworker households in North Carolina. Our study documents high acceptance among Latino children and their caregivers of these noninvasive sampling methods The personal samplers detected organophosphates, organochlorines, and pyrethroids in the majority of the participants (70%, 90%, 80%, respectively). Pesticides were detected in all participant samplers, with an average of 6.2 ± 2.4 detections/participant sampler. DNA damage in epithelial cells from the sheath and bulb of plucked hairs follicles was quantified by immunostaining 53BP1-labled DNA repair foci. This method is sensitive, as shown by dose response analyses to γ radiations where the lowest dose tested (0.1 Gy) led to significant increased 53BP1 foci density. Immunolabeling of DNA repair foci has significant advantages over the comet assay in that specific regions of the follicles can be analyzed. In this cohort of child participants, significant association was found between the number of pesticide detections and DNA damage in the papilla region of the hairs. We anticipate that this monitoring approach of bioavailable pesticides and genotoxicity will enhance our knowledge of the biological effects of pesticides to guide education programs and safety policies.
... The BPRHS reported a retention rate of 84% at 2-years follow-up [62], and a study of older adults (≥60y) in PR had 90% retention for the second wave [24], suggesting participants' commitment to the studies. Other studies have suggested that Latinos have a strong willingness and trust to participate in biomedical studies, and are motivated by the perceived importance of the study topic and a desire to acquire and contribute to new knowledge [61,[63][64][65]. While material incentives are not always a strong motivation for participation in health programs among Puerto Ricans [66], they should be fair and commensurate to the time and effort of the study [60]. ...
Background
Prevalence of chronic diseases and unhealthy lifestyle behaviors among the adult population of Puerto Rico (PR) is high; however, few epidemiological studies have been conducted to address these. We aimed to document the methods and operation of establishing a multisite cross-sectional study of chronic diseases and risk factors in PR, in partnership with academic, community, clinical, and research institutions. Methods
The Puerto Rico Assessment of Diet, Lifestyle and Diseases (PRADLAD) documented lifestyle and health characteristics of adults living in PR, with the goal of informing future epidemiological and intervention projects, as well as public health, policy, and clinical efforts to help improve the population’s health. The study was conducted in three primary care clinics in the San Juan, PR metropolitan area. Eligible volunteers were 30–75y, living in PR for at least 10 months of the previous year, and able to answer interviewer-administered questionnaires without assistance. Questions were recorded electronically by trained interviewers, and included socio-demographic characteristics, lifestyle behaviors, self-reported medically-diagnosed diseases, and psychosocial factors. Waist and hip circumferences were measured following standardized protocols. A subset of participants answered a validated food frequency questionnaire, a legumes questionnaire, and had medical record data abstracted. Process and outcome evaluation indicators were assessed. ResultsThe study screened 403 participants in 5 months. Of these, 396 (98%) were eligible and 380 (94%) had reliable and complete information. A subset of 242 participants had valid dietary data, and 236 had medical record data. The mean time to complete an interview was 1.5 h. Participants were generally cooperative and research collaborators were fully engaged. Having multiple sites helped enhance recruitment and sociodemographic representation. Diagnosed conditions were prevalent across sites. Challenges in data monitoring, interviewer training, and scheduling were identified and corrected, and should be addressed in future studies. Conclusions
Epidemiological studies in PR can be successfully implemented in partnership with multiple institutions. Effective recruitment and implementation requires concerted planning and continued involvement from partners, frequent quality control, brief interviews, reasonable incentives, and thorough training/re-training of culturally-sensitive interviewers. Further studies are feasible and needed to help address highly prevalent chronic conditions in PR.
... The analysis component of the project was exploratory in nature and integrated features of grounded theory for review. Grounded theory used in previous minority biospecimen research analysis [11] helped construct a framework of categorical processes that explained the relationships between how the project was meaningful at the micro, mezzo, and macro levels of utilization as it pertained to Native American communities. Categories and their intertwining properties and dimensions that emerged from the data assisted in the explanation of how minority participants, through the lens and awareness of their community, brought meaning to their voices. ...
Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.
... The low levels of stress are unique and may be related to support factors not assessed in this study. This idea is substantiated by other studies in this cohort have demonstrated that our study participants have a positive outlooks exhibited by their strong commitment to their communities and future generations (Hohl, Gonzalez et al. 2014). ...
Characterization of stress exposure requires understanding seasonal variability in stress biomarkers.
To compare acute and chronic stress biomarkers between two seasons in a cohort of rural, Hispanic mothers.
Stress questionnaires and cortisol measurements (hair, blood and saliva) were collected in the summer and fall.
Cortisol biomarkers were significantly different and stress questionnaires were significantly correlated between seasons.
The variability in cortisol and relative stability of questionnaires between seasons may indicate that cortisol responds to subtle stressors not addressed in questionnaires.
There are significant differences in stress biomarkers in our cohort between seasons.
... It is possible that if Latinos understand that biomedical research often does not include individual results, they may be less likely to participate even with the recognition of potential benefits to humanity (Wallace, 2013). However, a recent study in a community of similar ethnic and socioeconomic status in Washington State suggests motivations to participate in biomedical research (among participants in a pesticide exposure study) included the idea of therapeutic misconception, a desire to benefit their own children who may have been exposed to pesticides as well as advancing general scientific knowledge (Hohl, Gonzalez, Carosso, Ibarra, & Thompson, 2014). In this sense, the findings were similar to the current study's and may be indicative of a willingness to participate in biomedical research for the purpose of benevolence and the greater society, despite a lack of individualized health information. ...
Latinos are under-represented in biomedical research conducted in the United States, impeding disease prevention and treatment efforts for this growing demographic group. We gathered perceptions of biomedical research and gauged willingness to participate through elicitation interviews and focus groups with Latinos living on the U.S.-Mexico border. Themes that emerged included a strong willingness to participate in biomedical studies and suggested that Latinos may be under-represented due to limited formal education and access to health information, not distrust. The conflation of research and clinical care was common and motivated participation. Outreach efforts and educational interventions to inform Latinos of participation opportunities and clarify harms and benefits associated with biomedical research participation will be essential to maintain trust within Latino communities.
© The Author(s) 2014.
The degree to which sustainability is taught is often varied and inconsistent across colleges, departments, and higher education institutions. However, educating students and future generations regarding the different pillars of sustainability, including economic, social, and environmental topics, is increasing in importance and urgency. A mixed methods case study utilized surveys and interviews to investigate why instructors incorporate sustainability, what impacts course incorporation of sustainability, and barriers that instructors face. This study found that instructors’ beliefs regarding the importance of sustainability relate to the extent to which sustainability is incorporated into their curriculum. Topics of sustainability incorporated into a class are not impacted by instructors' specific beliefs. Instead, the pillars of sustainability taught are determined by instructors’ industry and college. Instructors are more intrinsically versus extrinsically motivated to teach sustainability topics. They face a variety of external barriers that include a lack of resources, time, and opportunities. By investigating instructors’ beliefs related to teaching sustainability concepts and instructors’ backgrounds from a variety of disciplines, this research fills a void in the published literature and provides the following general recommendations for how to support faculty and university change that include: clarifying university expectations through signaling the importance of sustainability and improving the culture of sustainability. Advisor: Dave Goesslin
Introduction: Interest in the return of research results has been increasing; however, little is known about how Hispanics/Latinos perceive and value receiving results. This study examined differences among Hispanics/Latinos by education and income in the experience and expectations about the return of research results, perceived value of specific types of information, and the least and most valuable specific information. Method: Retrospective observational design using a cross-sectional national survey sample of Hispanics/Latinos (n = 327). Results: Higher educational attainment was positively associated with the expectation to receive research results, likelihood to participate in research if given study findings, and likelihood to trust researchers if given results. Higher income was positively associated with the perceived value of getting results. Respondents with higher education specifically perceived greater value in information about how lifestyle and genetics affect their risk of disease, how genetics affect how they respond to medications, their ancestry, available clinical trials near them, and how to connect with other study participants. Respondents with higher income perceived greater value in information about how genetics affect their risk of disease and how they respond to medications. Conclusion: The findings offer important insights for planning research initiatives and for developing culturally targeted educational materials for Hispanics/Latinos.
Obtaining biological samples for research purposes from members of marginalized communities demands careful social and ethical consideration. This paper aims to discuss how feasibility and acceptability translate into methodological and ethical considerations for collecting hair samples in a study comprised of young, pregnant Latinx and African-American women participating in a digital storytelling intervention (DST). Transcripts from two focus groups with Healthy Families home visitor staff (N =10) and follow-up interviews with DST participants (N = 8) were analyzed through qualitative content analysis for hair sampling acceptability. Responses regarding the feasibility of obtaining a hair sample were generally positive amongst Healthy Families home visitor staff participating in the two focus groups, though responses overall were more favorable with the pregnant women participants who were interviewed post-DST intervention. Home visitors emphasized clear communication to participants around the reasoning for obtaining biological samples. Social and ethical considerations for communication of biomarker data to participants, as well as the intersection of lay knowledge of stress and participants' perspectives on providing a hair sample for cortisol analysis, is discussed.
In the past 10 years, the licit and illicit use of opioids has skyrocketed in the United States and internationally (Kocherlakota, 2014). A large proportion of those affected are reproductive-age women (Ailes et al., 2015), and opioid use during pregnancy has increased fivefold (Patrick et al., 2012), resulting in a dramatic increase in the number of infants born with neonatal abstinence syndrome (NAS) (Klaman et al., 2017; Winkelman, Villapiano, Kozhimannil, Davis, & Patrick, 2018). Infants with NAS require expensive pharmacological and intensive care treatment after birth (Winkelman et al., 2018), and they are at increased risk for a range of behavioral and neurodevelopmental problems (Lee, Pritchard, Austin, Henderson, & Woodward, 2020; Levine & Woodward, 2017; McGlone & Mactier, 2015; Nygaard, Slinning, Moe, & Walhovd, 2016; Stover & Davis, 2015). NAS is particularly prominent in the southeastern United States (that is, Tennessee, Kentucky, Mississippi, West Virginia, and Alabama), with incidence rates of up to 5.06 percent of all live hospital births (compared with 0.73 percent nationally; Brown, Doshi, Pauly, & Talbert, 2016; Erwin, Meschke, Ehrlich, & Lindley, 2017; Patrick, Davis, Lehmann, & Cooper, 2015). In our geographic catchment area in rural Tennessee, the highest incidence rates were reported in 2017 for Sullivan County, the North East and East Health regions, Upper Cumberland, and Knox County (up to 9.3 percent); however, a decrease in NAS rates was observed in 2018 (Miller & McDonald, 2019).
In this chapter, the authors discuss eight types of trauma that Latino children are likely to encounter by residing in rural or geographically-isolated communities. The authors contend that there exist more “rural-specific” types of childhood trauma that Latino children are at-risk for when compared to “urban-specific” types of trauma. For example, Latino children who reside in rural communities are more likely to traumatized by parental deportation, migrating from one town to another because parents follow the harvest, language brokering or translating for their parents, experiencing or witnessing farming accidents, relocating from the city to the country, isolation from extended family, pesticide poisoning of the child or a family member, and living in labor camps or substandard housing. It is important to note that Latino children, like children from other cultural, racial, and ethnic backgrounds, can experience all types of trauma irrespective of whether they reside in urban or rural settings.
Background:
Latinos are underrepresented in biomedical research, particularly biomarker research, yet they constitute the nation's largest ethnic/racial minority. Optimal methods for obtaining biospecimens for biomarker research among Latinos need to be identified. To minimize barriers and enhance participation, this study developed and tested tailored strategies for collecting biomarkers of chronic stress and premature aging among Spanish-speaking Latina breast cancer survivors.
Methods:
This study used a community-based participatory approach and selected hair and saliva as noninvasive biospecimens to assess telomere length, the cortisol awakening response (CAR), and hair cortisol concentration. We developed bilingual multimedia instructional materials, and community health workers assisted in collections. Telephone surveys assessed willingness to participate in future studies, barriers to sample collection, and recommendations for improving the strategies.
Results:
A total of 103 participants were recruited over 18 months from two rural sites in California, and 88 were retained at 6-month follow-up. At baseline, rates of donating salivary DNA for telomere length measurement, saliva for CAR analysis, and hair for cortisol concentration were 98%, 89%, and 52%, respectively. At follow-up, rates were 83%, 76%, and 55%, respectively. The majority of participants reported being very willing to provide hair (72%) or saliva (74%) for future studies.
Conclusions:
Our results support the feasibility of including minorities in biomedical research. We report excellent rates of saliva collection when community partners are engaged in the process, and when patient-centered and culturally tailored recruitment methods are implemented.
Impact:
The development of methods to facilitate the inclusion of minorities in biomedical research is critical to eliminate racial/ethnic health disparities.
In this chapter, the authors discuss eight types of trauma that Latino children are likely to encounter by residing in rural or geographically-isolated communities. The authors contend that there exist more "rural-specific" types of childhood trauma that Latino children are at-risk for when compared to "urbanspecific" types of trauma. For example, Latino children who reside in rural communities are more likely to traumatized by parental deportation, migrating from one town to another because parents follow the harvest, language brokering or translating for their parents, experiencing or witnessing farming accidents, relocating from the city to the country, isolation from extended family, pesticide poisoning of the child or a family member, and living in labor camps or substandard housing. It is important to note that Latino children, like children from other cultural, racial, and ethnic backgrounds, can experience all types of trauma irrespective of whether they reside in urban or rural settings.
Objective: Addressing health disparities requires well designed, culturally adapted research. However, recruiting/retaining minority participants has often been challenging. We present strategies used to successfully recruit and retain rural Hispanic women during a breastfeeding education intervention.
Design: This study involved a two-group repeated measures quasi-experimental design with assessments at seven intervals between enrollment and 6 months postpartum. Participants (Hispanic women ≥ 15 years old) were recruited through a regional hospital.
Results: We successfully met our recruitment goals, most women contacted were enrolled (46 of 58), and 100% completed the study.
Discussion: Research staff with ties within the community helped establish trust. Using bilingual study materials, simple language, and an interpreter addressed language/literacy concerns. Phone assessments facilitated participation as transportation was an issue. Accommodating requests to deliver or mail study materials and providing incentives were important. Extra effort was needed to maintain contact when phone service was disrupted or participants moved. Keys to success were persistence, flexibility, and alleviating barriers to participation.
Biospecimen donation is key to the Precision Medicine Initiative, which pioneers a model for accelerating biomedical research through individualized care. Personalized medicine should be made available to medically underserved populations, including the large and growing US Hispanic population. We present results of a study of 140 Hispanic women who underwent a breast biopsy at a safety-net hospital and were randomly assigned to receive information and request for consent for biospecimen and data sharing by the patient’s physician or a research assistant. Consent rates were high (97.1% and 92.9% in the physician and research assistant arms, respectively) and not different between groups (relative risk [RR] = 1.05, 95% confidence interval [CI] = 0.96 to 1.10). Consistent with a small but growing literature, we show that perceptions of Hispanics’ unwillingness to participate in biospecimen sharing for research are not supported by data. Safety-net clinics and hospitals offer untapped possibilities for enhancing participation of underserved populations in the exciting Precision Medicine Initiative.
While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation. I analyze interviews with Mexican male participants in an observational HPV study, and their wives, to examine how research participants themselves focus on relationships when imagining research-related benefits. I argue that couples incorporated the local trope of the Mexican citizenry as a biologically homogeneous national body, which individual members help or harm through their gendered health behavior, to understand these benefits. I use the concept of “ethical intercorporeality” to discuss spouses’ understandings themselves as parts of bio-social wholes - the couple, family and society - which they believed men's research participation could aid both physically and socially. This finding extends the insight that focusing on relationships rather than individuals is necessary for understanding the consequences of medical research, by showing how participants themselves might apply this perspective in context-specific ways. This article is protected by copyright. All rights reserved
Opposed to large nationally sponsored health initiatives or biobanks, little is known about gathering genetic samples from young adults participating in academic community-based epidemiologic studies of mental health and substance use, especially samples with a large number of minority participants. This study describes our experience of establishing a genetic arm within a longitudinal study of a cohort of young adults (mean age 29, 75 % African American, 58 % female). In total, 75 % of those interviewed in the most recent wave donated a DNA sample (31.6 % blood and 68.4 % saliva) and over 90 % provided consent for storage and sharing. Current smokers were more likely to donate a sample than nonsmokers (adjusted odds ratio (aOR) = 1.59, 95 % confidence interval (CI) = 1.14, 2.22). The odds of obtaining a saliva sample were increased for those who were former cannabis smokers and who drank more regularly, but decreased among participants with less education and a history with drug use. Fewer minorities (aOR = 0.37, 95 % CI = 0.18, 0.75; p = 0.006) and cannabis users (aOR = 0.46, 95 % CI = 0.27, 0.77) consented to sharing their sample with other investigators. Findings also illustrate there are many study parameters that are important in planning biologic collection efforts. Building strong rapport and trust with subjects, minimizing the burden involved by the respondent to obtain a biological sample, offering a choice to provide blood or saliva, and offering an incentive will increase the likelihood of obtaining a sample and, importantly, increase the opportunity to store and share the sample for the future.
This article gives specific steps on how to create a codebook for coding interview data. The authors examine the development of theory- and data-driven codes through the discussion of a professional development (PD) research project. They also discuss how to train others to code using the codebook, including how to establish reliability. The authors end with practical suggestions from their experiences in creating a codebook.
Biospecimen banking programs are critically dependent on participation of diverse population members. The purpose of this study was to test a pilot intervention to enhance recruitment to a biospecimen bank among racially diverse community members. A mixed methods, community-based participatory research (CBPR) orientation was used to develop and pilot an intervention to educate and recruit participants to a biospecimen bank. Pre- and post-assessments of knowledge about research, perceived costs and benefits of participation (expected utility), and emotional states associated with research participation (affective associations) as well as post-intervention participation in biobanking were examined to determine intervention effectiveness. The pilot intervention educated 148 community members; 107 (73 %) donated blood and 77 (52 %) completed a 36-page lifestyle questionnaire. Thirty-two percent of participants were African American and 11 % were Native American. Participating in the educational program significantly reduced negative affect associated with research involving collection of genetic material or completion of a survey. Improved knowledge and understanding of biobanking and research through a CBPR approach are likely to increase participation rates in biobanking for diverse community members. Accurate information and improved knowledge can reduce individual anxiety and concerns that serve as barriers to research participation.
Much has been written concerning ethno-cultural constructs and their application to the behavioral health treatment of Latinas(os). Perhaps because of the inherent complexity of attempting to describe ethno-cultural beliefs and treatment implications while avoiding stereotyping and overgeneralizing, writings in this area often begin with brief descriptions of select cultural values. Often what follow are treatment implications and recommendations, embedded in a broader theoretical discussion. This article builds upon this work by placing cultural concepts in ecological perspective and offering practice recommendations that follow from specific cultural beliefs. Although not exhaustive, these recommendations are intended to offer concrete approaches to care that are consistent with a contextual understanding of individuals of Hispanic heritage, particularly of individuals of Puerto Rican ethnicity living in an urban setting. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Preparing healthy community members with timely communications prior to engaging them in a request to donate biospecimens
promises to improve the experience of biobanking participation. To this end, a qualitative study was conducted to assess community
member knowledge, attitudes, beliefs, and informational needs about cancer-related biospecimen collection in a large metropolitan
area in southwest Florida. The study utilized purposive sampling techniques to recruit a total of 95 participants to participate
in 12 focus groups, segmented by race/ethnicity and language preference (mixed race, African American only, and Spanish speaking)
and age (18–29, 30–54, and 55 and older). Focus group interviews were analyzed using content analysis to identify emergent
themes. Overall, participants in the 30years and older groups were favorable toward participating in biobanking if their
concerns were addressed, such as confidentiality and consent issues, in contrast to participants aged 18–29 who were more
skeptical. For all participants, the desire to participate in research that seeks new cancer treatments outweighed mistrust.
Moreover, many cited the potential scientific benefit for future generations as a primary motivator. Finally, in some groups
a therapeutic misconception was expressed, where participants expressed a willingness to forego confidentiality of their health
status in exchange for therapeutic benefit. This study contributes to the literature on community perceptions of the benefits
and barriers of biobanking and adds to the development of meaningful education communication priming tools to advance understandings
about biobanking.
KeywordsBiobanking–Biospecimens–Tissue Donor–Focus Group–Informed Consent–Ethics
Members of racially and ethnically diverse groups have been persistently underrepresented in biomedical research in general, possibly due to mistrust with the medical and research community. This article describes the perceptions, understandings, and expectations of Alaska Native people about research involving the collection and storage of biological specimens.
Stratified focus groups.
Twenty-nine focus groups with Alaska Native people (n = 178) were held in 14 locations using a semi-structured moderator guide. ATLAS.ti was used for thematic analysis through iterative readings and coding. Alaska Native peoples' perceptions, understandings, and expectations of researcher beneficence, informed consent processes, and provision of research findings were elicited.
Alaska Native people desired extensive disclosure of information beyond that typically provided in consent and results dissemination processes. Information germane to the motivation and intent of researchers and specifics of specimen storage and destruction were specifically requested. A clear and extensive process of informed consent and continued improvements in sharing results may enhance the transparency of research intent, conduct, and use of obtained results among Alaska Native people. Meeting expectations may improve relationships between researchers and the Alaska Native population which could result in increased research participation. Our findings offer a guide for researchers and communities when planning and implementing research with biological specimens.
Cancer is the second leading cause of death among Native Americans, who have-some of the poorest cancer survival rates of any race/ethnicity nationwide. Considering the cancer burden experienced by Native Americans and the lack of research exploring Northeastern tribal communities' cancer experiences, a qualitative investigation of Native Americans' cancer coping strategies and health education needs was undertaken. Data were collected through group (74) and individual (17) interviews with 91 Native Americans from the Northeast. Relationships between intergenerational mistrust, individual mistrust, and utilization of biomedical health care systems for Northeastern Native Americans are presented. Trust is central to the provider-patient relationship and the foundation for developing and maintaining connections to Native American communities. Intergenerational mistrust, shaped by historical and contemporary issues of prejudice and miscommunication, affect cancer health experiences and views. Approaches for reducing mistrust and building relationships between health care providers and Native communities are highlighted.
The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in health.
We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n = 4659) of the general population.
Our research demonstrates that when considering participating in a genomic biobank, individuals want ongoing choices and control over access to their samples and information.
BACKGROUND: It is widely claimed that racial and ethnic minorities, especially in the US, are less willing than non-minority individuals to participate in health research. Yet, there is a paucity of empirical data to substantiate this claim. METHODS AND FINDINGS: We performed a comprehensive literature search to identify all published health research studies that report consent rates by race or ethnicity. We found 20 health research studies that reported consent rates by race or ethnicity. These 20 studies reported the enrollment decisions of over 70,000 individuals for a broad range of research, from interviews to drug treatment to surgical trials. Eighteen of the twenty studies were single-site studies conducted exclusively in the US or multi-site studies where the majority of sites (i.e., at least 2/3) were in the US. Of the remaining two studies, the Concorde study was conducted at 74 sites in the United Kingdom, Ireland, and France, while the Delta study was conducted at 152 sites in Europe and 23 sites in Australia and New Zealand. For the three interview or non-intervention studies, African-Americans had a nonsignificantly lower overall consent rate than non-Hispanic whites (82.2% versus 83.5%; odds ratio [OR] = 0.92; 95% confidence interval [CI] 0.84-1.02). For these same three studies, Hispanics had a nonsignificantly higher overall consent rate than non-Hispanic whites (86.1% versus 83.5%; OR = 1.37; 95% CI 0.94-1.98). For the ten clinical intervention studies, African-Americans' overall consent rate was nonsignificantly higher than that of non-Hispanic whites (45.3% versus 41.8%; OR = 1.06; 95% CI 0.78-1.45). For these same ten studies, Hispanics had a statistically significant higher overall consent rate than non-Hispanic whites (55.9% versus 41.8%; OR = 1.33; 95% CI 1.08-1.65). For the seven surgery trials, which report all minority groups together, minorities as a group had a nonsignificantly higher overall consent rate than non-Hispanic whites (65.8% versus 47.8%; OR = 1.26; 95% CI 0.89-1.77). Given the preponderance of US sites, the vast majority of these individuals from minority groups were African-Americans or Hispanics from the US. CONCLUSIONS: We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.
This essay identifies and categorizes terms used to designate the Hispanic/Latino population in addition to specific names used to designate distinct groups in the US. A brief taxonomy of terms is given in an attempt to clarify the complexity of ethnic identification. As Hispanic/Latinos bear a plural identity, ethnic names that are appropriate today may be obsolete or even offensive tomorrow. The mediating factors in self-designation are gaining a voice and power to name one's identity and define one's reality. The article provides an analysis framing the process of ethnic self-designation within an ethnopolitical and psychosocial context. The analysis concludes by presenting mestizaje and transculturation as processes involved in the evolution of Latino identity.
Farmers in Washington State use pesticides to control harmful pests that might interfere with the quality of their products. Farmworkers, who are primarily responsible for thinning, harvesting, and other agricultural work, are often exposed to these pesticides and take home pesticide residues on their clothing, shoes, and skin, potentially exposing children in the household to pesticides. We designed a project to reduce children's exposure by using a community organization model. To better understand the community views regarding pesticide exposure, we conducted a qualitative community analysis. Two methods of data gathering were used to collect information. Individual interviews were conducted with some respondents, and small group discussions were held with others. Analysis indicated wide disparity among involved groups in their views on pesticides; however, a number of themes common to the majority of the constituents were identified and discussed with a community planning group. Because of the contention around pesticides, the group recommended every constituent participate in decision making. The group noted it was important to emphasize that the research project could provide scientific information on pesticide exposure to everyone in the Lower Yakima Valley. Our study demonstrates both the widely varying views of different constituents around the issue of pesticide exposure and common themes that can form the basis for collaboration and consensus on approaching the issue.
We analyzed organophosphorus pesticide exposure in 218 farm worker households in agricultural communities in Washington State to investigate the take-home pathway of pesticide exposure and to establish baseline exposure levels for a community intervention project. House dust samples (n = 156) were collected from within the homes, and vehicle dust samples (n = 190) were collected from the vehicles used by the farm workers to commute to and from work. Urine samples were obtained from a farm worker (n = 213) and a young child (n = 211) in each household. Dust samples were analyzed for six pesticides, and urine samples were analyzed for five dialkylphosphate (DAP) metabolites. Azinphosmethyl was detected in higher concentrations (p < 0.0001) than the other pesticides: geometric mean concentrations of azinphosmethyl were 0.53 micro g/g in house dust and 0.75 micro g/g in vehicle dust. Dimethyl DAP metabolite concentrations were higher than diethyl DAP metabolite concentrations in both child and adult urine (p < 0.0001). Geometric mean dimethyl DAP concentrations were 0.13 micro mol/L in adult urine and 0.09 micro mol/L in child urine. Creatinine-adjusted geometric mean dimethyl DAP concentrations were 0.09 micro mol/g in adult urine and 0.14 micro mol/g in child urine. Azinphosmethyl concentrations in house dust and vehicle dust from the same household were significantly associated (r2 = 0.41, p < 0.0001). Dimethyl DAP levels in child and adult urine from the same household were also significantly associated (r2 = 0.18, p < 0.0001), and this association remained when the values were creatinine adjusted. The results of this work support the hypothesis that the take-home exposure pathway contributes to residential pesticide contamination in agricultural homes where young children are present.
This study investigates factors that facilitate and impede minority participation in medical and scientific research studies. Four focus group sessions involving 18 participants aged 18 to 55 years were conducted. Participants, all members of minority groups, were asked a series of questions about why minorities in the Twin Cities area might or might not participate in medical research. Focus group participants indicated they would be willing to participate as research subjects if study findings were shored with them and their primary care physician and if results would benefit their community. Participants cited 4 major barriers to their participation in research: limited knowledge of health studies, mistrust of researchers, limited community involvement in the design of health studies, and use of invasive procedures. Results from this study suggest that researchers seeking to include minority subjects need to use more participatory or community-centered approaches to research.
Despite the importance of diversity of cancer trial participants with regard to race, ethnicity, age, and sex, there is little recent information about the representation of these groups in clinical trials.
To characterize the representation of racial and ethnic minorities, the elderly, and women in cancer trials sponsored by the National Cancer Institute.
Cross-sectional population-based analysis of all participants in therapeutic nonsurgical National Cancer Institute Clinical Trial Cooperative Group breast, colorectal, lung, and prostate cancer clinical trials in 2000 through 2002. In a separate analysis, the ethnic distribution of patients enrolled in 2000 through 2002 was compared with those enrolled in 1996 through 1998, using logistic regression models to estimate the relative risk ratio of enrollment for racial and ethnic minorities to that of white patients during these time periods.
Enrollment fraction, defined as the number of trial enrollees divided by the estimated US cancer cases in each race and age subgroup.
Cancer research participation varied significantly across racial/ethnic and age groups. Compared with a 1.8% enrollment fraction among white patients, lower enrollment fractions were noted in Hispanic (1.3%; odds ratio [OR] vs whites, 0.72; 95% confidence interval [CI], 0.68-0.77; P<.001) and black (1.3%; OR, 0.71; 95% CI, 0.68-0.74; P<.001) patients. There was a strong relationship between age and enrollment fraction, with trial participants 30 to 64 years of age representing 3.0% of incident cancer patients in that age group, in comparison to 1.3% of 65- to 74-year-old patients and 0.5% of patients 75 years of age and older. This inverse relationship between age and trial enrollment fraction was consistent across racial and ethnic groups. Although the total number of trial participants increased during our study period, the representation of racial and ethnic minorities decreased. In comparison to whites, after adjusting for age, cancer type, and sex, patients enrolled in 2000 through 2002 were 24% less likely to be black (adjusted relative risk ratio, 0.76; 95% CI, 0.65-0.89; P<.001). Men were more likely than women to enroll in colorectal cancer trials (enrollment fractions: 2.1% vs 1.6%, respectively; OR, 1.30; 95% CI, 1.24-1.35; P<.001) and lung cancer trials (enrollment fractions: 0.9% vs 0.7%, respectively; OR, 1.23; 95% CI, 1.16-1.31; P<.001).
Enrollment in cancer trials is low for all patient groups. Racial and ethnic minorities, women, and the elderly were less likely to enroll in cooperative group cancer trials than were whites, men, and younger patients, respectively. The proportion of trial participants who are black has declined in recent years.
It is widely claimed that racial and ethnic minorities, especially in the US, are less willing than non-minority individuals to participate in health research. Yet, there is a paucity of empirical data to substantiate this claim.
We performed a comprehensive literature search to identify all published health research studies that report consent rates by race or ethnicity. We found 20 health research studies that reported consent rates by race or ethnicity. These 20 studies reported the enrollment decisions of over 70,000 individuals for a broad range of research, from interviews to drug treatment to surgical trials. Eighteen of the twenty studies were single-site studies conducted exclusively in the US or multi-site studies where the majority of sites (i.e., at least 2/3) were in the US. Of the remaining two studies, the Concorde study was conducted at 74 sites in the United Kingdom, Ireland, and France, while the Delta study was conducted at 152 sites in Europe and 23 sites in Australia and New Zealand. For the three interview or non-intervention studies, African-Americans had a nonsignificantly lower overall consent rate than non-Hispanic whites (82.2% versus 83.5%; odds ratio [OR] = 0.92; 95% confidence interval [CI] 0.84-1.02). For these same three studies, Hispanics had a nonsignificantly higher overall consent rate than non-Hispanic whites (86.1% versus 83.5%; OR = 1.37; 95% CI 0.94-1.98). For the ten clinical intervention studies, African-Americans' overall consent rate was nonsignificantly higher than that of non-Hispanic whites (45.3% versus 41.8%; OR = 1.06; 95% CI 0.78-1.45). For these same ten studies, Hispanics had a statistically significant higher overall consent rate than non-Hispanic whites (55.9% versus 41.8%; OR = 1.33; 95% CI 1.08-1.65). For the seven surgery trials, which report all minority groups together, minorities as a group had a nonsignificantly higher overall consent rate than non-Hispanic whites (65.8% versus 47.8%; OR = 1.26; 95% CI 0.89-1.77). Given the preponderance of US sites, the vast majority of these individuals from minority groups were African-Americans or Hispanics from the US.
We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.
Sheikh discusses a new study that found that the main barrier to the participation of minority ethnic people in research lies in their reduced likelihood of being invited to participate.
Our ability, as leaders in public health scholarship and practice, to achieve and measure progress in addressing racial/ethnic disparities in health status and health care is severely constrained by low levels of participation of racial/ethnic minority populations in health-related research. Confining our review to those minority groups federally defined as underrepresented (African Americans/blacks, Latinos/Hispanics, and Native Americans/American Indians), we identified 95 studies published between January 1999 and April 2005 describing methods of increasing minority enrollment and retention in research studies, more than three times the average annual output of scholarly work in this area during the prior 15-year period. Ten themes emerged from the 75 studies that were primarily descriptive. The remaining 20 studies, which directly analyzed the efficacy or effectiveness of recruitment/retention strategies, were examined in detail and provided useful insights related to four of the ten factors: sampling approach/identification of targeted participants, community involvement/nature and timing of contact with prospective participants, incentives and logistical issues, and cultural adaptations. We then characterized the current state of this literature, discussing implications for future research needs and directions.
Members of vulnerable populations are underrepresented in research studies.
To evaluate and synthesize the evidence regarding interventions to enhance enrollment of vulnerable populations into health research studies.
Studies were identified by searching MEDLINE, the Web of Science database, personal sources, hand searching of related journals, and article references. Studies that contained data on recruitment interventions for vulnerable populations (minority, underserved, poor, rural, urban, or inner city) and for which the parent study (study for which recruitment was taking place) was an intervention study were included. A total of 2,648 study titles were screened and 48 articles met inclusion criteria, representing 56 parent studies. Two investigators extracted data from each study.
African Americans were the most frequently targeted population (82% of the studies), while 46% targeted Hispanics/Latinos. Many studies assessed 2 or more interventions, including social marketing (82% of studies), community outreach (80%), health system recruitment (52%), and referrals (28%). The methodologic rigor varied substantially. Only 40 studies (71%) incorporated a control group and 21% used statistical analysis to compare interventions. Social marketing, health system, and referral recruitment were each found to be the most successful intervention about 35-45% of the studies in which they were attempted, while community outreach was the most successful intervention in only 2 of 16 studies (13%) in which it was employed. People contacted as a result of social marketing were no less likely to enroll than people contacted through other mechanisms.
Further work with greater methodologic rigor is needed to identify evidence-based strategies for increasing minority enrollment in research studies; community outreach, as an isolated strategy, may be less successful than other strategies.
We examined the range and nature of investigators' communication and relationship building as they recruit minority participants in their research. Semistructured, in-depth interviews were conducted with 33 investigators conducting research with human participants. The response rate was 77%. Investigators described several kinds of relationships that are formed or called upon when including minority participants in research. The relationships ranged from study-related, short-term interactions geared solely to facilitate recruitment to others that were longer term, extending beyond a particular project. The data suggest that a range of relationships is important as investigators seek to include minority populations in research. These relationships can both facilitate the recruitment process as well as aid in the interpretation of research findings.
The purposes of this analysis were to compare the self-reported willingness of blacks, Puerto-Rican Hispanics and whites to participate as research subjects in biomedical studies, and to determine the reliability of the Tuskegee Legacy Project Questionnaire (TLP).
The TLP Questionnaire, initially used in a four-city study in 1999-2000, was administered in a follow-up study within a random-digit-dial telephone survey to a stratified random sample of adults in three different U.S. cities: Baltimore, MD; New York City; and San Juan, PR. The questionnaire, a 60-item instrument, contains two validated scales: the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale.
Adjusting for age, sex, education, income and city, the LOP Scale was not statistically significantly different for the racial/ethnic groups (ANCOVA, p=87). The GPFF Scale was statistically significantly higher for blacks and Hispanics as compared to whites (adjusted ANCOVA, p<0.001).
The of the findings from the current three-city study, as well as from our prior four-city study, are remarkably similar and reinforce the conclusion that blacks and Hispanics self-report that, despite having a higher fear of participation, they are just as likely as whites to participate in biomedical research.
The Cancer Genetics Network (CGN) is one of a growing number of large-scale registries designed to facilitate investigation of genetic and environmental contributions to health and disease. Despite compelling scientific and social justice arguments that recommend diverse participation in biomedical research, members of ethnic minority groups continue to be chronically underrepresented in such projects. The CGN studies reported in this issue used strategies well documented to increase minority participation in research activities, including use of community-targeted materials, addressing community trust concerns, and the adoption of personalized and flexible research protocols. Here, we review the outcome of these efforts to increase minority recruitment to the CGN, and ask what lessons the findings suggest for future minority recruitment initiatives.
Exposure to organophosphate (OP) pesticides is an occupational hazard for farmworkers and affects their children through the take-home pathway.
We examined the effectiveness of a randomized community intervention to reduce pesticide exposure among farmworkers and their children.
We conducted a baseline survey of a cross-sectional sample of farmworkers (year 1) in 24 participating communities. Communities were randomized to intervention or control. After 2 years of intervention, a new cross-sectional survey of farmworkers was conducted (year 4). Farmworkers with a child 2-6 years of age were asked to participate in a substudy in which urine was collected from the farmworker and child, and dust was collected from the home and the vehicle driven to work.
The median concentration of urinary metabolites was higher in year 4 than in year 1 for dimethylthiophosphate (DMTP) and dimethyldithiophosphate in adults and for DMTP for children. There were significant increases within both the intervention and control communities between year 1 and year 4 (p < 0.005); however, the differences were not significant between study communities after adjusting for year (p = 0.21). The dust residue data showed azinphos-methyl having the highest percentage of detects in vehicles (86% and 84% in years 1 and 4, respectively) and in house dust (85% and 83% in years 1 and 4, respectively). There were no significant differences between intervention and control communities after adjusting for year (p = 0.49).
We found no significant decreases in urinary pesticide metabolite concentrations or in pesticide residue concentrations in house and vehicle dust from intervention community households compared with control community households after adjusting for baseline. These negative findings may have implications for future community-wide interventions.
Although intervention research is vital to eliminating health disparities, many groups with health disparities have had negative research experiences, leading to an understandable distrust of researchers and the research process. Community-based participatory research (CBPR) approaches seek to reverse this pattern by building trust between community members and researchers. We highlight strategies for building and maintaining trust from an American Indian CBPR project and focus on 2 levels of trust building and maintaining: (1) between university and community partners and (2) between the initial project team and the larger community. This article was cowritten by community and academic partners; by offering the voices of community partners, it provides a novel and distinctive contribution to the CBPR literature.
This essay identifies and categorizes terms used to designate the Hispanic/Latino population in addition to specific names used to designate distinct groups in the US. A brief taxonomy of terms is given in an attempt to clarify the complexity of ethnic identification. As Hispanic/Latinos bear a plural identity, ethnic names that are appropriate today may be obsolete or even offensive tomorrow. The mediating factors in self-designation are gaining a voice and power to name one's identity and define one's reality. The article provides an analysis framing the process of ethnic self-designation within an ethnopolitical and psychosocial context. The analysis concludes by presenting mestizaje and transculturation as processes involved in the evolution of Latino identity.
Our ability, as leaders in public health scholarship and practice, to achieve and measure progress in addressing racial/ethnic disparities in health status and health care is severely constrained by low levels of participation of racial/ethnic minority populations in health-related research. Confining our review to those minority groups federally defined as underrepresented (African Americans/blacks, Latinos/Hispanics, and Native Americans/American Indians), we identified 95 studies published between January 1999 and April 2005 describing methods of increasing minority enrollment and retention in research studies, more than three times the average annual output of scholarly work in this area during the prior 15-year period. Ten themes emerged from the 75 studies that were primarily descriptive. The remaining 20 studies, which directly analyzed the efficacy or effectiveness of recruitment/retention strategies, were examined in detail and provided useful insights related to four of the ten factors: sampling approach/identification of targeted participants, community involvement/nature and timing of contact with prospective participants, incentives and logistical issues, and cultural adaptations. We then characterized the current state of this literature, discussing implications for future research needs and directions.
This review explores the field of biobanking as it has evolved from a simple collection of frozen specimens to the virtual biobank. Biorepository and biospecimen science has evolved in response to the changing landscape of external regulatory pressures, the advances made in the biological sciences, and the advent of the computer chip. Biospecimen banking is a growing enterprise crucial to health science research and other biological sciences. In this review we discuss the history of biobanking, highlight current and emerging issues, discuss demands and responses, and describe an example of a biobank, the UCSF AIDS Specimen Bank that has functioned for 30 years.
To examine barriers and facilitators of biomedical research participation among Hispanics in a rural community in Washington State.
Questionnaires addressed socio-demographics, health care access, and barriers and facilitators of participation in biomedical studies. This is a descriptive analysis of the findings.
Barriers include the need to care for family members (82%), fear of having to pay for research treatments (74%), cultural beliefs (65%), lack of time (75%) and trust (71%), and the degree of hassle (73%). Facilitators include having a friend/relative with the disease being researched (80%) and monetary compensation (73%).
Researchers should be mindful of these facilitators and barriers when recruiting for biomedical research studies.
Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs.
To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners.
We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach.Results: We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health.
This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.
Objective:
To assess associations of protective workplace and home practices with pesticide exposure levels.
Methods:
Using data from orchard workers in the Yakima Valley, Washington, we examined associations of workplace and home protective practices with (1) urinary metabolite concentrations of dimethylthiophosphate (DMTP) in adults and children aged 2 to 6 years and (2) azinphos-methyl levels in house and vehicle dust.
Results:
Data were collected from 95 orchard workers and 94 children. Contrary to expectation, adult farm workers who wore boots or washed hands using hand sanitizer had higher concentrations of DMTP than those who did not. Children who attended daycare had higher DMTP concentrations than children who did not.
Conclusions:
Few workplace or home practices were associated with pesticide exposure levels; workers who used hand sanitizer had higher concentrations of DMTP, as did children who attended daycare.
Background
Farmworkers and their families are exposed to pesticides through multiple pathways. Few studies have examined the frequency with which farmworkers engage in pesticide safety practices and the factors associated with their adoption.Methods
Using a large sample of farmworkers (n = 554), we evaluated relationships between pesticide safety behaviors and farmworkers' beliefs, training history, handling of pesticides at work, perceived occupational exposure, and employers' provision of personal protective equipment.ResultsPerforming behaviors at work was determined largely by whether personal protective equipment was provided. For home behaviors, female gender, living in a labor camp, being trained in the last 5 years, handling pesticides directly, and not perceiving organizational barriers to protecting oneself were associated with taking more precautions.Conclusions
These findings call for interventions that involve and engage multiple stakeholders to increase adoption of pesticide safety behaviors and reduce pesticide exposure in farmworkers. Am. J. Ind. Med. 51:69–81, 2008. © 2007 Wiley-Liss, Inc.
OBJECTIVE: To describe barriers to participation of African Americans in research.
DESIGN: Focus group interviews conducted in 1997.
PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups.
MEASUREMENTS AND MAIN RESULTS: African-American patients’ attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research.
CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.
To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities.
All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010.
We performed a systematic literature review.
Data were extracted on each study's characteristics, community involvement in research, subject recruitment and retention, and intervention effects.
We found 19 articles meeting inclusion criteria. Of these, 14 were published from 2007 to 2010. Articles described some measures of community participation in research with great variability. Although CBPR trials examined a wide range of behavioral and clinical outcomes, such trials had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects.
Significant publication gaps remain between CBPR and other interventional research methods. CBPR may be effective in increasing participation of racial and ethnic minority subjects in research and may be a powerful tool in testing the generalizability of effective interventions among these populations. CBPR holds promise as an approach that may contribute greatly to the study of health care delivery to disadvantaged populations.
This article explores expressions of therapeutic misconception (TM) in a deliberative-engagement project focused on the return of aggregate and individual genetic results from biobank-based research.
We enrolled 45 self-described African Americans in a deliberative-engagement project to explore their attitudes regarding the return of results from biobank-based research. Four groups of individuals participated in four sessions over 2 days that included both educational and focus-group components.
TM was expressed by individuals from both clinics on each day that they met. Three main typological categories of TM were noted: (i) the reasons for consenting to participate in a biobank, (ii) the conflation of research with clinical care, and (iii) mistrust about the meaning of biomedical research findings.
Although trust may explain why some research participants express TM, it was also fueled by mistrust (e.g., a disbelief that a condition described as untreatable was truly untreatable). We also found that TM is not due solely to research participants' misunderstandings but is a bidirectional phenomenon that can be exacerbated by researchers. This finding raises questions about how to engage prospective research participants in the long-term goals of biobank-based research without unintentionally overstating possible short-term clinical benefits.
As of December 31, 2008, an estimated 663,084 persons were living with a diagnosis of human immunodeficiency virus (HIV) infection in the 40 U.S. states that have had confidential name-based HIV infection reporting since at least January 2006. Although HIV surveillance programs in the United States collect information about persons who have received a diagnosis of HIV infection and acquired immunodeficiency syndrome (AIDS), supplemental surveillance projects are needed to collect information about care-seeking behaviors, health-care use, and other behaviors among persons living with HIV. Data on the clinical and behavioral characteristics of persons receiving medical care for HIV infection are critical to reduce HIV-related morbidity and mortality and for program planning to allocate services and resources, guide prevention planning, assess unmet medical and ancillary service needs, and help develop intervention programs and health policies at the local, state, and national levels.
Data were collected during June 2007-September 2008 for patients who received medical care in 2007 (sampled from January 1-April 30).
The Medical Monitoring Project (MMP) is an ongoing, multisite supplemental surveillance project that assesses behaviors, clinical characteristics, and quality of care of HIV-infected persons who are receiving medical care. Participants must be aged ≥ 18 years and have received medical care at sampled facilities that provide HIV medical care within participating MMP project areas. Self-reported behavioral and selected clinical data are collected using an in-person interview. A total of 26 project areas in 19 states and Puerto Rico were funded to collect data during the 2007 MMP data collection cycle.
The results from the 2007 MMP cycle indicated that among 3,643 participants, a total of 3,040 (84%) had some form of health insurance or coverage during the 12 months before the interview; of these, 45% reported having Medicaid, 37% reported having private health insurance or coverage through a health maintenance organization, and 30% reported having Medicare. A total of 3,091 (85%) of the participants were currently taking antiretroviral medications. Among 3,609 participants who reported ever having a CD4 T-lymphocyte test, 2,996 (83%) reported having three or more CD4 T-lymphocyte tests in the 12 months before the interview. Among 3,567 participants who reported ever having an HIV viral load test, 2,946 (83%) reported having three or more HIV viral load tests in the 12 months before the interview. Among 3,643 participants, 45% needed HIV case management, 33% needed mental health counseling, and 32% needed assistance finding dental services during the 12 months before the interview; 8%, 13%, and 25% of these participants who needed the services, respectively, had not received these services by the time of the interview. Noninjection drugs were used for nonmedical purposes by 1,117 (31%) participants during the 12 months before the interview, and 122 (3%) participants had used injection drugs for nonmedical purposes. Unprotected anal intercourse was reported by 527 (54%) of 970 men who reported having anal sex with a man during the 12 months before the interview. Unprotected anal or vaginal intercourse was reported by 176 (32%) of the 553 men who reported having anal or vaginal intercourse with a woman during the 12 months before the interview. Unprotected anal or vaginal intercourse was reported by 216 (42%) of the 516 women who reported having anal or vaginal intercourse with a man during the 12 months before the interview.
The findings in this report indicate that in 2007, most persons with HIV infection who were receiving medical care were taking antiretroviral therapy and had some form of health insurance or coverage; however, some persons were not receiving needed critical ancillary services, such as HIV case management or help finding dental services. In addition, some persons living with HIV infection engaged in behaviors, such as unprotected sex, that increase the risk for transmitting HIV to sexual partners, and some used noninjection or injection drugs for nonmedical purposes, which might decrease adherence to antiretroviral therapy and increase health-risk behaviors.
MMP data can be used to monitor the national HIV/AIDS strategy goal of increasing access to care and optimizing health outcomes among persons living with HIV. Persons infected with HIV who are not receiving needed ancillary services highlight missed opportunities for access to care and other supportive services, information that can be used to advocate for additional resources. Drug use among persons with HIV infection underscores the continued need for substance abuse treatment services for this population. In addition, prevention services and programs are needed to decrease the number of HIV-infected persons engaging in unprotected sex. The data in this report can be included in local, state, and national HIV/AIDS epidemiologic profiles and shared with community stakeholders. Although data from the 2007 MMP cycle might not be representative of all persons receiving medical care for HIV infection in the United States or in the individual project areas, future MMP cycles are expected to yield weighted national estimates representing all HIV-infected persons receiving medical care in the United States.
Since 1946, CDC has monitored and responded to challenges in the nation's health, with particular focus on reducing gaps between the least and most vulnerable U.S. residents in illness, injury, risk behaviors, use of preventive health services, exposure to environmental hazards, and premature death. We continue that commitment to socioeconomic justice and shared responsibility with the release of CDC Health Disparities and Inequalities in the United States -- 2011, the first in a periodic series of reports examining disparities in selected social and health indicators.
Libro de metodología cualitativo para investigación en las ciencias sociales. La utilización de la computadora, el uso de datos y la recolección de los mismos. Se describen detalladamente numerosos métodos de datos y análisis.
Despite an increasing arsenal of effective treatments, there are mounting challenges in developing strategies that prevent and control cardiovascular diseases, and that can be sustained and scaled to meet the needs of those most vulnerable to their impact. Community-based participatory research (CBPR) is an approach to conducting research by equitably partnering researchers and those directly affected by and knowledgeable of the local circumstances that impact health. To inform research design, implementation and dissemination, this approach challenges academic and community partners to invest in team building, share resources, and mutually exchange ideas and expertise. CBPR has led to a deeper understanding of the myriad factors influencing health and illness, a stream of ideas and innovations, and there are expanding opportunities for funding and academic advancement. To maximize the chance that CBPR will lead to tangible, lasting health benefits for communities, researchers will need to balance rigorous research with routine adoption of its conduct in ways that respectfully, productively and equally involve local partners. If successful, lessons learned should inform policy and inspire structural changes in healthcare systems and in communities.
Previous research suggests that Latinos tend to score higher than Anglos on psychometric indicators of socially desirable responding. The purpose of the current study was to test several methodological and cultural explanations for these group differences. Hypothesized explanations included varying levels of problems in living, measurement bias, differential structure of socially desirable responding measures, reliabilities of response style indicators, or cultural factors. Results supported previous findings that self-identified Latino (N=143) respondents score significantly higher than Anglos (N=93) on some socially desirable responding indicators. Groups did not differ in levels of psychopathology and socially desirable responding indicators demonstrated structural similarity, equivalent relations to external criteria, and equivalent reliabilities across groups. Thus, data suggest normative differences between these groups in social presentation that should be considered in culturally sensitive clinical practice.
A common misconception about sampling in qualitative research is that numbers are unimportant in ensuring the adequacy of a sampling strategy. Yet, simple sizes may be too small to support claims of having achieved either informational redundancy or theoretical saturation, or too large to permit the deep, case-oriented analysis that is the raison-d'être of qualitative inquiry. Determining adequate sample size in qualitative research is ultimately a matter of judgment and experience in evaluating the quality of the information collected against the uses to which it will be put, the particular research method and purposeful sampling strategy employed, and the research product intended.
Little is known about pesticide exposure among farmworkers, and even less is known about the exposure associated with performing specific farm tasks. Using a random sample of 213 farmworkers in 24 communities and labor camps in eastern Washington State, we examined the association between occupational task and organophosphate (OP) pesticide residues in dust and OP metabolite concentrations in urine samples of adult farmworkers and their children. The data are from a larger study that sought to test a culturally appropriate intervention to break the take-home pathway of pesticide exposure. Commonly reported farm tasks were harvesting or picking (79.2%), thinning (64.2%), loading plants or produce (42.2%), planting or transplanting (37.6%), and pruning (37.2%). Mixing, loading, or applying pesticide formulations was reported by 20% of our sample. Workers who thinned were more likely than those who did not to have detectable levels of azinphos-methyl in their house dust (92.1% vs. 72.7%; p = 0.001) and vehicle dust (92.6% vs. 76.5%; p = 0.002). Thinning was associated with higher urinary pesticide metabolite concentrations in children (91.9% detectable vs. 81.3%; p = 0.02) but not in adults. Contrary to expectation, workers who reported mixing, loading, or applying pesticide formulations had lower detectable levels of pesticide residues in their house or vehicle dust, compared with those who did not perform these job tasks, though the differences were not significant. Future research should evaluate workplace protective practices of fieldworkers and the adequacy of reentry intervals for pesticides used during thinning.
Farmworkers are exposed to pesticides and may take home pesticide residues to their families. In this paper, self-reported pesticide exposure and home practices to reduce the amount of pesticide residues taken home were examined among 571 farmworkers. Urine samples from a subsample of farmworkers and children and dust samples from households and vehicles also assessed pesticide exposure. Overall, 96% of respondents reported exposure to pesticides at work. Many employers did not provide resources for hand washing. Farmworkers' protective practices to keep pesticide residues out of the home were at a low level. In a subset of respondents, pesticide levels above the limit of quantitation were seen in the urine of children and adults and in house and vehicle dust. The results support the take-home pathway of pesticide exposure. Ways must be found to reduce this pesticide exposure among children of farmworkers.
Few studies have examined the relationship between reported health symptoms and exposure to organophosphate (OP) pesticides.
Fisher's exact test was used to assess the relationship between self-reported health symptoms and indicators of exposure to OP pesticides in 211 farmworkers in Eastern Washington.
The health symptoms most commonly reported included headaches (50%), burning eyes (39%), pain in muscles, joints, or bones (35%), a rash or itchy skin (25%), and blurred vision (23%). Exposure to pesticides was prevalent. The proportion of detectable samples of various pesticide residues in house and vehicle dust was weakly associated with reporting certain health symptoms, particularly burning eyes and shortness of breath. No significant associations were found between reporting health symptoms and the proportion of detectable urinary pesticide metabolites.
Certain self-reported health symptoms in farmworkers may be associated with indicators of exposure to pesticides. Longitudinal studies with more precise health symptom data are needed to explore this relationship further.
Breast carcinoma prevention trials must recruit large cohorts of women who have an above-average risk of developing breast carcinoma. Recruitment for the Study of Tamoxifen and Raloxifene (STAR) trial required volunteers to complete a risk assessment questionnaire form (RAF). Women whose estimated risk of developing breast carcinoma in the next 5 years was > or = 1.67% based on the Gail model were invited to participate in STAR. Less than 4% of participants in the previously conducted P1 (tamoxifen vs. placebo) trial were minority women. We, therefore, studied barriers to minority participation in STAR among black, white, and Hispanic women who completed an RAF.
The authors analyzed the association of Gail model risk factors, education, and insurance with race/ethnicity using chi-square tests and two-sided P values. They developed logistic regression models of trial eligibility, controlling for the Gail model risk factors, education, and insurance status.
Among 823 women who completed an RAF, white women were 10 times as likely as Hispanic women and 45 times as likely as black women to be eligible for STAR. Age at first birth (P = 0.04), having an affected first-degree relative (P < 0.0001), having had a biopsy (P < 0.0001), education (P < 0.0001), and insurance status (P < 0.0001) varied by race/ethnicity. All variables except insurance status were associated with eligibility when race was excluded from the model. In a model that included race/ethnicity, the same factors remained statistically significant.
These findings suggested that both the race/ethnicity adjustment and socioeconomic factors were barriers to eligibility for and contribute to low minority participation in breast cancer prevention trials.
Latinos have low representation in cancer prevention trials and intervention studies. Culturally appropriate recruitment strategies are needed to address this issue.
To describe and summarize the effectiveness of recruitment strategies used by the Latin American Cancer Research Coalition (LACRC).
Descriptive report of recruitment methods.
Uninsured Latino immigrants (N=1,170; 77% female, 23% male) from Central and South America recruited to 7 cancer control studies.
The LACRC recruitment model involved inclusion of Latino researchers and providers, and use of culturally acceptable materials released through culturally appropriate outlets such as Latino radio stations.
The overall participation rate was high-96% of patients identified as eligible agreed to participate. Women were excellent referrals for recruiting men to research studies. Additionally, a local Latino radio program was used to efficiently recruit eligible study participants.
Latinos are interested and willing to participate in cancer control studies when culturally relevant approaches are used. Research teams that partner with Latino researchers and with Latino service providers are important in educating Latinos about cancer control and encouraging participation in research.
In January 2006, Cancer Epidemiology, Biomarkers & Prevention ( CEBP ) introduced the new subject area of Biorepository and Biospecimen Science. In creating this new category, the journal is recognizing what many investigators, including molecular epidemiologists, have known for years: that the
Although the roles of clotting proteins and enzymes that activate or inhibit fibrin production and lysis are well characterized, the underlying contribution of genetic variation in these constituents to risk of venous thrombosis (VT) has not been fully investigated.
To describe the association of common genetic variation in 24 coagulation, anticoagulation, fibrinolysis, and antifibrinolysis candidate genes with risk of incident nonfatal VT in postmenopausal women.
Population-based case-control study conducted in a large integrated health care system in Washington State. Participants were perimenopausal and postmenopausal women aged 30 to 89 years who sustained a first VT event between January 1995 and December 2002 (n = 349) and 1680 controls matched on age, hypertension status, and calendar year (n = 1680).
Risk of venous thrombosis associated with global variation within a gene as measured by common haplotypes and with individual haplotypes and single nucleotide polymorphisms (SNPs). Significance of the associations was assessed by a .20 threshold of the false-discovery rate q value, which accounts for multiple testing.
Only the tissue factor pathway inhibitor gene demonstrated global association with risk (q = .13). Five significant SNP associations were identified across 3 of the candidate genes (factors V, XI, and protein C) in SNP analyses. Two associations have been previously reported. Another 22 variants across 15 genes had P values less than .05 but q values between .20 and .35. Five of these confirm previously reported associations (fibrinogen genes and protein C), 2 were inconsistent with earlier reports (thrombomodulin and plasminogen activator inhibitor 1), and 15 were new discoveries.
After accounting for multiple testing, 5 SNPs associated with VT risk were identified, 3 of which have not been previously reported. Replication of these novel associations in other populations is necessary to corroborate these findings and identify which genetic factors may influence VT risk in postmenopausal women.
To determine the recruitment goals that investigators set for racial/ethnic minorities and the factors associated with failure to meet those goals.
Four hundred forty principal investigators (PIs) conducting clinical research funded by the National Heart, Lung, and Blood Institute (NHLBI) in 2001 completed a mailed survey providing their minority recruitment goals and enrollment data for their most recent NHLBI-funded study.
Ninety-two percent of PIs set goals for African Americans, 68% for Hispanics, 55% for Asian Americans, 35% for Native Hawaiians/Pacific Islanders, and 23% of PIs set recruitment goals for American Indians/Native Alaskans. Among those PIs who did set minority recruitment goals, the mean goal for the recruitment of African Americans was 31%, 16% for Hispanics, and 9% for Asian Americans. Twenty-seven percent of PIs failed to meet their recruitment goals for African Americans, 23% for Asian Americans, and 23% for Hispanics. After adjusting for multiple investigator and trial characteristics, the type of study (odds ratio [OR] 1.8; 95% confidence interval [CI] 1.2, 3.4 for observational vs. phase III trial) completion of study enrollment (OR 2.0; 95% CI 1.2, 3.4), and PI identification of a larger number of major barriers to participation (OR 1.8; 95% CI 1.1, 3.0) were all associated with failure to meet recruitment goals for African Americans. However, no factors were consistently associated with failure to meet recruitment goals across different racial/ethnic groups.
Investigators often do not set recruitment goals for some racial/ethnic groups. Factors associated with failure to meet recruitment goals vary in the recruitment of different minority groups.
Examples of cancer prevention and screening trials in the Southwest are reviewed as a platform for highlighting gaps in research on Latino recruitment. Three trials are described, using "message/source/channel" categories as a framework. Each trial engaged community members to facilitate recruitment and developed tailored strategies to meet challenges emerging after recruitment began. Although we affirm that culturally relevant messages, community member referral networks, and adjustment to community realities seem important to Latino recruitment, current anecdotal and research findings do not allow evidence-based recommendations to be made. We suggest a research agenda to further illuminate critical factors for successful Latino recruitment.