Communicating environmental exposure results and health information in a community-based participatory research study.

BACKGROUND: Communicating results to participants is a fundamental component of community-based participatory research (CBPR). However, in environmental exposure studies this is not always practiced, partly due to ethical concerns of communicating results that have unknown clinical significance. METHODS: Growing Up Healthy was a community-based participatory research study that sought to understand the relationship between environmental exposures to phthalates and early puberty in young girls. After in-depth consultation with a Community Advisory Board, study investigators provided group summary results of phthalate exposures and related health information to the parents of study participants. Parents' comprehension and knowledge of the health information provided was then assessed through questionnaires. RESULTS: After receiving the information from the research team, responders were able to correctly answer comprehension questions about phthalate exposures in their community, were able to identify ways to reduce exposure to phthalates, and indicated plans to do so. Questionnaires revealed that parents wanted more information on phthalates, and that children's environmental health was an important concern. CONCLUSIONS: We conclude that effective communication of exposure results of unknown clinical significance to participants in environmental health studies can be achieved by providing group summary results and actionable health information. Results suggest that there was an improvement in knowledge of environmental health and in risk reduction behaviors in our study population.

Community capacity building: a collaborative approach to designing a training and education model.

BACKGROUND: Successful community-academic research partnerships require building the capacity of both community-based organizations (CBOs) and academics to conduct collaborative research of mutual interest and benefit. Yet, information about the needs and goals of research-interested CBOs is lacking. Our partnership aimed to conduct a community research needs assessment and to use results to develop future capacity-building programs for CBOs. METHODS: Based on our review of the literature, informal interviews with research-interested CBOs and community-engaged research groups locally and nationally, we developed a needs assessment survey. Key domains of this survey included history and experience with research collaboration, interest in specific research topics, and preference for learning format and structure. We trained community health workers (CHWs) to recruit senior leaders from CBOs in New York City (NYC) and encourage them to complete an on-line survey. RESULTS: Fully 54% (33/61) of CBOs completed the needs assessment. Most (69%) reported involvement with research or evaluation in the last 2 years and 33% had some funding for research. Although 75% had collaborated with academic institutions in the past, 58% did not rate this experience well. The four areas respondents prioritized for skills building were program evaluation, developing needs assessments, building surveys, and understanding statistical analyses. They were less interested in learning to build collaborations with academics. CONCLUSIONS: A formal needs assessment of research training and educational needs of CBOs revealed that most had experience, albeit negative, with academic collaborations. CBO leaders wanted to build skills to conduct and analyze assessments and program evaluations. Our community-academic partnership is using these findings to develop a research capacity-building course. Other partnerships should consider conducting such assessments to transform the capacity of CBOs to be active research partners and leaders.

Associations between neighborhood resources and physical activity in inner-city minority children.

OBJECTIVE: The role of neighborhood physical activity resources on childhood physical activity level is increasingly examined in pediatric obesity research. We describe how availability of physical activity resources varies by individual and block characteristics and then examine its associations with physical activity levels of Latino and black children in East Harlem, New York City. METHODS: Physical activity resource availability by individual and block characteristics were assessed in 324 children. Availability was measured against 4 physical activity measures: average weekly hours of outdoor unscheduled physical activity, average weekly metabolic hours of scheduled physical activity, daily hours of sedentary behavior, and daily steps. RESULTS: Physical activity resource availability differed by race/ethnicity, caregiver education, and income. Presence of one or more playgrounds on a child's block was positively associated with outdoor unscheduled physical activity (odds ratio [OR] = 1.95, 95% confidence interval [CI] 1.11-3.43). Presence of an after-school program on a child's block was associated with increased hours of scheduled physical activity (OR = 3.25, 95% CI 1.41-7.50) and decreased sedentary behavior (OR = 3.24, 95% CI 1.30-8.07). The more resources a child had available, the greater the level of outdoor unscheduled physical activity (P for linear trend = .026). CONCLUSIONS: Neighborhood physical activity resource availability differs by demographic factors, potentially placing certain groups at risk for low physical activity level. Availability of select physical activity resources was associated with reported physical activity levels of East Harlem children but not with objective measures of physical activity.

Cancer care in East and Central Harlem: community partnership needs assessment.

In the largely African American and Hispanic communities of East and Central Harlem in New York City (NYC), health inequities are glaring. Mortality from cancer is 20-30 % higher than in Manhattan and 30-40 % higher than rates in the general population in NYC. Despite advances in risk assessment, early detection, treatment, and survivorship, individuals in Harlem and similar urban communities are not benefiting equally. Guided by community-based participatory research, this study serves as an important step in understanding cancer care needs and the range of factors that impact the disparate rates of cancer in East and Central Harlem. Forty individual interviews were conducted with community leaders and residents. Major themes included: need for appropriate supportive services; health care access and financial challenges; beliefs related to stigma, trust, and accountability; and the impact of the physical environment on health. Education was seen as a critical area of need and intervention.

Shared governance in building community capacity: A case study of sleep apnea.

East Harlem has the highest diabetes mortality rate in New York City, NY. Using Community Based Participatory Research principles, the East Harlem Partnership for Diabetes Prevention-a community- academic partnership-formed to build community capacity with a goal to address health disparities in East Harlem. As part of prevention efforts, community partners chose to study the prevalence of obstructive sleep apnea and its relationship to pre-diabetes and progression to diabetes. However, community partners insisted any study of sleep apnea go beyond simple assessment to ensure the largely uninsured, minority population enrolled also have access to state of the art diagnosis and treatment. Through compromise and collaboration, the partnership developed a culturally appropriate and scientifically rigorous method to diagnose and treat sleep apnea as part of a novel research program.

Dietary and physical activity behaviors of New York City children from different ethnic minority subgroups.

OBJECTIVE: To examine racial/ethnic differences in diet and physical activity behaviors in ethnic minority New York City children. METHODS: Cross-sectional data from a community-based study of 486 6- to 8-year-old children were used. Race/ethnicity was derived using a caregiver's report of child's race and Hispanic ancestry. Dietary intake was obtained by 24-hour diet recalls using the Nutrition Data System for Research. Physical activity was assessed with pedometers and caregiver interviews. We compared diet and activity measures across racial/ethnic subgroups using chi-square and analysis of variance tests. Multivariate analyses adjusted for age, gender, body mass index, and caregiver education (with breastfeeding history and total energy intake included in diet models). RESULTS: Participants (N = 486) were categorized as Mexican (29.4%), Dominican (8.4%), Puerto Rican (20.6%), other/mixed Hispanic (14.0%), or non-Hispanic black (27.6%). Obesity rates were lower in non-Hispanic blacks (18%) than in Hispanics (31%). Mexicans had the lowest obesity rates among Hispanic subgroups (25%), and Dominicans had the highest (39%). There were differences in mean daily servings of food groups, with Mexicans having healthier diets and Puerto Ricans and non-Hispanic Blacks having less healthy diets. Sedentary time was lower in Mexicans than in other groups in adjusted models. Examination of additional models, including home language, did not show significant differences in the estimates. CONCLUSION: Diet and activity behaviors varied across racial/ethnic subgroups. Specifically, Mexican children had healthier diets, the least amount of sedentary time, and the lowest rates of obesity among the Hispanic subgroups examined. Targeted interventions in ethnic subgroups may be warranted to address specific behaviors.

Associations between phthalate metabolite urinary concentrations and body size measures in New York City children.

OBJECTIVE: To examine prospectively associations between urinary phthalate metabolite concentrations and body size measures in children. METHODS: Urinary concentrations of nine phthalate metabolites: monoethyl (MEP); mono-n-butyl (MBP); mono-(3-carboxypropyl) (MCPP); monobenzyl (MBzP); mono-isobutyl (MiBP); mono-(2-ethylhexyl) (MEHP); mono-(2-ethyl-5-oxohexyl) (MEOHP); mono-(2-ethyl-5-carboxypentyl) (MECPP); and mono-(2-ethyl-5-hydroxyhexyl) phthalate (MEHHP) and the molar sum of the low molecular-weight phthalate metabolites (low MWP: MEP, MBP and MiBP) and high molecular-weight phthalate metabolites (high MWP: MECPP, MEHHP, MEOHP, MEHP and MBzP) and of four di-(2-ethylhexyl) phthalate (DEHP) metabolites (ΣDEHP: MEHP, MEHHP, MEOHP, MECPP) and anthropometry, including body mass index and waist circumference were measured among 387 Hispanic and Black, New York City children who were between six and eight years at cohort enrollment (2004-2007). Relationships between baseline metabolite concentrations and body size characteristics obtained one year later were examined using multivariate-adjusted geometric means for each body size characteristic by continuous and categories of phthalate metabolite concentrations. Stratified analyses by body size (age/sex specific) were conducted. RESULTS: No significant associations are reported among all girls or boys. Dose response relationships were seen with monoethyl phthalate and the sum of low molecular-weight phthalates and body mass index and waist circumference among overweight children; for increasing monoethyl phthalate concentration quartiles among girls, adjusted mean body mass indexes were as follows: 21.3, 21.7, 23.8, 23.5 and adjusted mean waist circumference (cm) were as follows: 73.4, 73.5, 79.2, 78.8 (p-trend<0.001 for both). CONCLUSION: In this prospective analysis we identified positive relationships between urinary concentrations of monoethyl phthalate and the sum of low molecular-weight phthalates and body size measures in overweight children. These are metabolites with concentrations above 1 µM.

Temporal variability in urinary concentrations of perchlorate, nitrate, thiocyanate and iodide among children.

Perchlorate, nitrate and thiocyanate are ubiquitous in the environment, and human exposure to these chemicals is accurately measured in urine. Biomarkers of these chemicals represent a person's recent exposure, however, little is known on the temporal variability of the use of a single measurement of these biomarkers. Healthy Hispanic and Black children (6-10-year-old) donated urine samples over 6 months. To assess temporal variability, we used three statistical methods (n=29; 153 urine samples): intraclass correlation coefficient (ICC), Spearman's correlation coefficient between concentrations measured at different timepoints and surrogate category analysis to assess how well tertile ranking by a single biomarker measurement represented the average concentration over 6 months. The ICC measure of reproducibility was poor (0.10-0.12) for perchlorate, nitrate and iodide; and fair for thiocyanate (0.36). The correlations for each biomarker across multiple sampling times ranged from 0.01-0.57. Surrogate analysis showed consistent results for almost every surrogate tertile. Results demonstrate fair temporal reliability in the spot urine concentrations of the three NIS inhibitors and iodide. Surrogate analysis show that single-spot urine samples reliably categorize participant's exposure providing support for the use of a single sample as an exposure measure in epidemiological studies that use relative ranking of exposure.

Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study.

In order for DNA biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be recruited. This study explored reasons for participating in a new biobank among primarily Hispanic and African American individuals, as well as their general attitudes towards genetic research, and their views on obtaining genetic tests. Focus groups were conducted with Mount Sinai Biobank participants recruited from predominantly lower income, minority communities. The topic guide included questions on The Mount Sinai Biobank, genetic research, and genetic testing. All focus groups were audio recorded, transcribed, and analyzed using thematic analysis. The six focus groups comprised 43 participants: 39 females and four males, aged 27-76 years, with a median household income category of $20,000-$39,999. Twenty-one participants were Hispanic, 20 African American, one Asian, and one White. Participants' reasons for participating in the biobank included altruism, personal and family benefit, and general curiosity. Although there was evidence of conflation between genetic research and genetic testing, most participants held positive views of genetic research and expressed interest in receiving personal genetic test results. Participants wanted to learn more about genetic research and suggested various venues such as health fairs for disseminating information. Participation in biobanks by racial and ethnic minorities is apparently driven by altruism, and desire for personal or collective health benefits. Participants had generally positive attitudes, limited understanding of genetics and genetic research, and made useful suggestions regarding information dissemination mechanisms.

Measures of obesity associated with asthma diagnosis in ethnic minority children.

Objective. The study objective was to examine relationships between different body size measurements and asthma in ethnic minority children. Methods. We used data from a community-based study of 505 children aged 6-to-8 years old to study the association of percent body fat, fat distribution, and BMI percentile with asthma diagnosis. Poisson regression models were used to compute prevalence ratios (PRs) for sex-specific quintiles of the body fat measures on the main outcome of asthma. Results. When comparing the highest quintile of each body fat measure to the combined lowest two quintiles, higher body mass index percentile, percent body fat, and waist circumference all were associated with a higher likelihood of physician-diagnosed asthma (PR = 1.63 (95% CI 1.12-2.39), 1.50 (95% CI 1.02-2.21), and 1.56 (95% CI 1.04-2.34), resp.). Conclusions. This study found a significant association between increased body size and asthma diagnosis, regardless of the measurement examined.

Early experiences and predictors of recruitment success for the National Children's Study.

OBJECTIVES: We aimed to describe 17 months of experience with household recruitment of live births for the National Children's Study in Queens, a highly urban, diverse borough of New York City (NYC), and to assess predictors of recruitment success. METHODS: Recruitment data (enumeration, pregnancy screening of age-eligible women, identification of pregnancies, and consent) for the period of January 2009 through May 2010 were calculated. Geographic information systems were used to create 11 community-level variables for each of the 18 study segments where recruitment occurred, using US Census, NYC Office of Vital Statistics, NYC Department of City Planning, and NYC Police Department data. Recruitment yields were analyzed with respect to these variables at the segment level. RESULTS: Enumeration identified 4889 eligible women, of whom 4333 (88.6%) completed the pregnancy screener. At least 115 births were lost because of an inability of the pregnancy screener to identify pregnant women, whereas another 115 could be expected to be lost because of missed enumerations and pregnancy screeners. The consent rate was 60.3%. Segments with higher percentages of low birth weight had higher enumeration, pregnancy screening, and consent rates. CONCLUSIONS: In a highly immigrant, urban setting, households could be approached for recruitment of women to participate in the National Children's Study with consent rates equal to those experienced in clinical settings. Refinement of the pregnancy screener and other recruitment materials presents an opportunity to optimize recruitment, improve the representativeness of study participants, and improve the cost-effectiveness of study execution.

Community engagement in children's environmental health research.

Community engagement strategies and skills can build trust and reduce historical mistrust between researchers, communities, and populations being studied, as well as contribute to the quality of study designs, methods, and dissemination of findings. This review paper discusses why community engagement is of increasing importance in children's environmental health research, describes models and the continuum of methods that are used, and discusses their challenges and benefits. Two case studies, representing different study designs and using different community engagement models and methods, and lessons learned from these cases, are described. Community engagement methods are best understood on a continuum based on the degree to which community members or representatives of community populations are involved in research planning, decision-making, and dissemination. Methods along this continuum include community consultation, community-based participatory research, and community consent to research. Community engagement knowledge and skills are especially important in the conduct of children's environmental health research, with its emphasis on reducing environmental risks at the community level, the increasing focus on genetics and gene-environment interactions, and the importance placed on translation of scientific results into behaviors and policies that protect the community. Across study designs, whether qualitative survey research, an observational epidemiology study, or a randomized intervention trial, understanding community interests, norms, and values is necessary to describe attitudes and behaviors of specific population groups, build evidence of cause and effect between environmental exposures and health, and demonstrate the effectiveness of interventions to reduce risks.

Effective recruitment of minority populations through community-led strategies.

BACKGROUND: Traditional research approaches frequently fail to yield representative numbers of people of color in research. Community-based participatory research (CBPR) may be an important strategy for partnering with and reaching populations that bear a greater burden of illness but have been historically difficult to engage. The Community Action Board, consisting of 20 East Harlem residents, leaders, and advocates, used CBPR to compare the effectiveness of various strategies in recruiting and enrolling adults with prediabetes into a peer-led, diabetes prevention intervention. METHODS: The board created five recruitment strategies: recruiting through clinicians; recruiting at large public events such as farmers markets; organizing special local recruitment events; recruiting at local organizations; and recruiting through a partner-led approach, in which community partners developed and managed the recruitment efforts at their sites. RESULTS: In 3 months, 555 local adults were approached; 249 were appropriate candidates for further evaluation (overweight, nonpregnant, East Harlem residents without known diabetes); 179 consented and returned in a fasting state for 1/2 day of prediabetes testing; 99 had prediabetes and enrolled in a pilot randomized trial. The partner-led approach was highly successful, recruiting 68% of those enrolled. This strategy was also the most efficient; 34% of those approached through partners were ultimately enrolled, versus 0%-17% enrolled through the other four strategies. Participants were predominantly low-income, uninsured, undereducated, Spanish-speaking women. CONCLUSIONS: This CBPR approach highlights the value of partner-led recruitment to identify, reach out to, and motivate a vulnerable population into participation in research, using techniques that may be unfamiliar to researchers but are nevertheless rigorous and effective.

Childhood obesity and neighborhood food-store availability in an inner-city community.

OBJECTIVE: Prior studies have shown an association between fast-food restaurants and adolescent body size. Less is known about the influence of neighborhood food stores on a child's body size. We hypothesized that in the inner-city, minority community of East Harlem, New York, the presence of convenience stores and fast-food restaurants near a child's home is associated with increased risk for childhood obesity as measured by body mass index (BMI). DESIGN: Baseline data of 6- to 8-year-old East Harlem boys and girls (N=323) were used. Anthropometry (height and weight) was conducted with a standardized protocol. Food-store data were collected via a walking survey. Stores located within the same census block as the child's home address were identified by using ArcGIS 8.3. We computed age- and sex-specific BMI percentiles by using national norms of the Centers for Disease Control and Prevention. Using odds ratios, we estimated risk of a child's BMI percentile being in the top tertile based on number and types of food stores on their census blocks. RESULTS: Convenience stores were present in 55% of the surveyed blocks in which a study particpant lived and fast-food restaurants were present in 41%. Children (n=177) living on a block with 1 or more convenience stores (range, 1-6) were more likely to have a BMI percentile in the top tertile (odds ratio 1.90, 95% confidence interval, 1.15-3.15) compared with children having no convenience stores (n=146). CONCLUSIONS: The presence of convenience stores near a child's residence was associated with a higher BMI percentile. This has potential implications for both child- and neighborhood-level childhood obesity interventions.

Race and food store availability in an inner-city neighbourhood.

BACKGROUND: A growing body of research has shown that disparities in resources, including food stores, exist at the neighbourhood level and the greatest disparities are seen in minority neighbourhoods, the same neighbourhoods at increased risk of obesity and diabetes. Less is known about whether differences in availability of resources by African American or Latino race/ethnicity exist within a single minority community. OBJECTIVE: The present study examined whether census blocks either 75% African American (AA) or 75% Latino (L) are associated with food store availability, as compared with racially mixed (RM) census blocks, in East Harlem, New York. DESIGN/METHODS: A cross-sectional study utilising a walking survey of East Harlem was performed. Food stores were classified into: supermarkets, grocery stores, convenience stores, specialty stores, full-service restaurants and fast-food stores. RESULTS: One hundred and sixty-five East Harlem census blocks were examined; 17 were AA, 34 were L and 114 were RM. Of AA census blocks, 100% had neither supermarkets nor grocery stores. AA census blocks were less likely to have convenience stores (prevalence ratio (PR) = 0.25, 95% confidence interval (CI) 0.07-0.86) compared with RM census blocks. In contrast, predominantly L census blocks were more likely to have convenience stores (PR = 1.8, 95% CI 1.20-2.70), specialty food stores (PR = 3.74, 95% CI 2.06-7.15), full-service restaurants (PR = 1.87, 95% CI 1.04-3.38) and fast-food restaurants (PR = 2.14, 95% CI 1.33-3.44) compared with RM census blocks. CONCLUSIONS: We found that inequities in food store availability exist by race/ethnicity in East Harlem, New York. This has implications for racial/ethnic differences in dietary quality, obesity and obesity-related disorders.

The occlusion effect in unilateral versus bilateral hearing aids.

The benefit of bilateral hearing aids is well documented, but many hearing-aid users still wear only one aid. It is plausible that the occlusion effect is part of the reason for some hearing-aid users not wearing both hearing aids. In this study we quantified the subjective occlusion effect by asking ten experienced users of bilateral hearing aids and a reference group of ten normal-hearing individuals to rate the naturalness of their own voice while reading a text sample aloud. The subjective occlusion effect was evaluated in the unilateral versus bilateral condition for a variety of vent designs in earmolds and in a custom hearing aid. The subjective occlusion effect was significantly higher for bilateral hearing aids with all vent designs with the exception of a non-occluding eartip option. The subjective occlusion effect was reduced with the more open vent designs in both the unilateral and bilateral conditions. Assuming that the occlusion effect is a barrier to bilateral hearing aid use, these results indicate that open-hearing-aid fittings can help promote the use of two aids.

Creating alliances to improve cancer prevention and detection among urban medically underserved minority groups. The East Harlem Partnership for Cancer Awareness.

The East Harlem Partnership for Cancer Awareness (EHPCA) was formed in 1999 to reduce disparities in cancer screening and prevention among medically underserved minorities residing in a large urban community (East Harlem, New York City) by increasing awareness of cancer risk, prevention, and treatment, and promoting greater participation in breast, cervical, colorectal, and prostate cancer screening and early detection. The Partnership augments a 20-year collaboration between an academic medical center, a public hospital, and 2 community health centers. Needs assessments were conducted to inform program development. Cancer education, outreach, and screening programs were developed based on the PRECEED-PROCEED model for health education and health promotion programming. Needs assessments revealed that although the majority of the population (86%) was insured and had a source of primary care, cancer screening guidelines for breast, cervical, prostate, and colorectal cancers were not being followed. Outreach strategies, targeted curricula, educational sessions, and screening programs have been developed and implemented to improve knowledge levels and increase screening participation. The EHPCA is a model of a successful partnership among the public and private sectors to reduce disparities in cancer screening and prevention in a diverse, medically underserved, urban minority community. Future efforts to reduce cancer screening disparities in this population will include patient navigation and improved access to standard-of-care screening such as colonoscopy. Cancer 2006. (c) 2006 American Cancer Society.

Community-based participatory research: lessons learned from the Centers for Children's Environmental Health and Disease Prevention Research.

Over the past several decades there has been growing evidence of the increase in incidence rates, morbidity, and mortality for a number of health problems experienced by children. The causation and aggravation of these problems are complex and multifactorial. The burden of these health problems and environmental exposures is borne disproportionately by children from low-income communities and communities of color. Researchers and funding institutions have called for increased attention to the complex issues that affect the health of children living in marginalized communities--and communities more broadly--and have suggested greater community involvement in processes that shape research and intervention approaches, for example, through community-based participatory research (CBPR) partnerships among academic, health services, public health, and community-based organizations. Centers for Children's Environmental Health and Disease Prevention Research (Children's Centers) funded by the National Institute of Environmental Health Sciences and U.S. Environmental Protection Agency were required to include a CBPR project. The purpose of this article is to provide a definition and set of CBPR principles, to describe the rationale for and major benefits of using this approach, to draw on the experiences of six of the Children's Centers in using CBPR, and to provide lessons learned and recommendations for how to successfully establish and maintain CBPR partnerships aimed at enhancing our understanding and addressing the multiple determinants of children's health.