Caroline D. Bergeron

What do people really know and think about clinical trials? A comparison of rural and urban communities in the South.

Clinical trials (CTs) have the potential to provide the most advanced medical treatments and screening options and help medically underserved individuals, including those in rural communities, obtain the medical care they need. Despite the need for access to care, CT participation remains low in rural communities. This study examined what individuals in both rural and urban communities of a Southeastern state know and think about CTs. Nineteen focus groups and eight interviews were conducted statewide with a total of 212 men and women. Discussions assessed participants’ beliefs, perceptions, and sources of information about CTs, and their willingness to participate in a CT. Focus group and interview transcripts were analyzed qualitatively for themes. Urban and rural participants expressed similar beliefs about CTs. Common misperceptions were that CTs were intended for people who could not afford care and that completing a survey or participating in a focus group constituted a CT. Rural residents believed that CTs involved deception more often than urban residents, and they were less willing than urban residents to participate in a CT in the future. Urban residents more frequently discussed their distrust of the medical system as a reason for not wanting to participate. Many individuals expressed that their participation would depend on whether their doctor recommended it or whether the trial would benefit a family member’s health. Findings have important implications for health communication. Messages should be developed to address misperceptions of rural and urban communities and convey the importance of CT participation to promote and protect the health of their communities.

A Qualitative Study of Recruitment Barriers, Motivators, and Community-Based Strategies for Increasing Clinical Trials Participation Among Rural and Urban Populations

Purpose. Participation in clinical trials (CTs) is low among rural communities. Investigators report difficulty recruiting rural individuals for CTs. The study purpose was to identify recruitment barriers, motivators, and strategies to help increase access to and participation in CTs in rural and urban communities. Approach. Qualitative focus groups/interviews. Setting. Rural and urban counties in one southeastern state. Participants. Two hundred twelve African-American and white men and women ages 21+. Method. Nineteen focus groups and nine interviews were conducted. Audio files were transcribed and organized into NVivo10. Recurring themes were examined by geographic location. Results. Although similar barriers, motivators, and strategies were reported by urban and rural groups, perceptions regarding their importance varied. Recruitment barriers mentioned in both rural and urban groups included fear, side effects, limited understanding, limited time, and mistrust. Rural groups were more mindful of time commitment involved. Both rural and urban participants reported financial incentives as the top motivator to CT participation, followed by personal illness (urban groups) and benefits to family (rural groups). Recruitment strategies suggested by rural participants involved working with schools/churches and using word of mouth, whereas partnering with schools, word of mouth, and media were recommended most by urban groups. Conclusion. Perceived recruitment barriers, motivators, and strategies did not differ considerably between rural and urban groups. Major barriers identified by participants should be addressed in future CT recruitment and education efforts. Findings can inform recruitment and communication strategies for reaching both urban and rural communities.

Barriers to Clinical Trial Participation: Comparing Perceptions and Knowledge of African American and White South Carolinians

Analyzing data from a survey of African American and White residents in South Carolina, this study attempts to understand how to better promote clinical trial participation specifically within the African American population. To explore why participation is lower in the African American population, the authors examined two sets of potential barriers: structural/procedural (limited accessibility, lack of awareness, doctors not discussing clinical trial options, lack of health insurance) and cognitive/psychological (lack of subjective and factual knowledge, misperceptions, distrust, fear, perceived risk). Findings revealed that African Americans were significantly less willing than Whites to participate in a clinical trial. African Americans also had lower subjective and factual knowledge about clinical trials and perceived greater risk involved in participating in a clinical trial. The authors found that lack of subjective knowledge and perceived risk were significant predictors of African Americans’ willingness to participate in a clinical trial. Implications of the findings are discussed in detail.

Barriers to Clinical Trial Participation: A Comparison of Rural and Urban Communities in South Carolina

Analyzing data from a telephone survey of rural and urban residents in South Carolina, this study attempts to understand how to better promote clinical trials (CTs) in rural areas. To explore why participation is lower among the rural population, we examine two groups of potential barriers: structural and procedural barriers (limited accessibility, lack of awareness, lack of health insurance) and cognitive and psychological barriers (lack of knowledge, misperceptions, distrust, fear). We then make a series of comparisons between rural and urban residents to see whether rural residents are significantly different from urban residents in terms of structural/procedural and cognitive/psychological barriers they are facing. Findings indicate that there are no significant differences between rural and urban residents in their willingness to participate in a CT. However, rural residents were more likely to perceive limited access to CT sites and lack of awareness of available trials. Rural residents also indicated greater lack of knowledge about CTs. Finally, we found that distrust and fear were important barriers in shaping one’s willingness to participate in a CT. Implications of the findings are discussed in detail.

Communicating Effectively About Clinical Trials With African American Communities A Comparison of African American and White Information Sources and Needs

Clinical trial (CT) participation is low among African Americans (AAs). To better communicate with AAs about the importance of CTs, the purpose of this study was to explore the communication sources and perceived effective communication channels and strategies through which the general public, AAs, and White individuals receive CT information. A quantitative telephone survey was conducted with AAs and Whites in one Southern state (N = 511). The measures assessed CT sources of information, perceived effectiveness of communication channels and strategies, CT understanding, and CT participation. Descriptive and bivariate analyses were used to compare responses overall and by race. AAs reported being exposed to more CT information than Whites. AAs received CT information most often through television, social media, and doctors compared to Whites. Perceived effectiveness of communication strategies and channels varied by race. AAs preferred simple and easy-to-understand CT information distributed through faith-based organizations. Whites preferred to receive CT information through a trustworthy source (e.g., doctor). There were no significant differences between AAs and Whites in their perceived effectiveness of media sources (e.g., Internet). Recommendations are provided to help health promotion practitioners and CT recruiters tailor information and communicate it effectively to potential AA and White CT participants.

Dodging the Debate and Dealing with the Facts: Using Research and the Public Library to Promote Understanding of the Affordable Care Act

This study reports on an innovative, community-based effort to promote awareness and understanding of the Affordable Care Act (ACA) through a public library system in one southeastern county. Specifically, this study assesses the current knowledge, perceptions, and communication sources and needs regarding the ACA among adults in one southeastern county in an effort to determine the feasibility of establishing the public library as a trusted and nonpartisan source of ACA-related information. Results of formative research are discussed, and campaign development activities are chronicled. Findings indicate that public libraries can serve as a hub of information on important health-related issues through their efforts to communicate with, educate, and engage with the communities they serve.

Older women's responses and decisions after a fall: The work of getting “back to normal”

ABSTRACT In this descriptive qualitative research, we examined older womens responses and decisions after experiencing a fall. Falls were unexpected, sudden events that heightened these womens awareness of their physical, emotional, spiritual, and social independence. Interviewees reported assessing personal, physical, and emotional needs; feeling burdened by the extra work; trying to get back to normal; seeking and obtaining assistance and spiritual support; avoiding specific people, objects, and places; planning ahead; and putting the fall out of mind. Consideration of older womens post-fall responses and decisions should be incorporated into fall prevention and management programs, services, and clinical recommendations.

Developing an evaluation tool for disaster risk messages

Purpose – Risk communication is a critical component of individual health decision making and behavior. In disaster situations, it is crucial that risk-related messages are communicated accurately and that they reach and inform target audiences about the steps they can take to protect their health. Despite a global recognition of the importance of risk communication in responding to disasters, there remains a dearth of evidence on how to evaluate the effectiveness of risk communication messages. The purpose of this paper is to develop and assess a pilot tool to evaluate the effectiveness of disaster risk messages. Design/methodology/approach – A pilot evaluation tool was developed using the existing risk communication literature. An expert assessment of the tool was conducted using an open-ended survey and a focus group discussion with 18 experts at the Public Health Agency of Canada in February 2013. Findings – The tool measures content, reach, and comprehension of the message. It is intended to be a qui...

Correlates of CVD and discussing sexual issues with physicians among male military veterans

PURPOSE This study aims to identify socio-demographic and health behavior factors associated with cardiovascular disease (CVD) diagnosis and patient-physician communication concerning sexual issues among older Veterans. METHODS Cross-sectional data were collected from 635 male Veterans over age 55 years as part of the 2010 National Social Life, Health and Aging Project, a nationally-representative, population-based study of community-dwelling older Americans. Two independent logistic regression analyses were performed. RESULTS Over 33% of Veterans were aged 75 years or older. Over one-half of participants reported having a CVD diagnosis (58%) and sexual intercourse within the previous year (58%); over one-third (37%) reported having one or more sexual dysfunctions and discussing sexual issues with their physician (42%). Veterans diagnosed with CVD were significantly more likely to self-identify as racial/ethnic minorities (OR=1.89, P=0.021), have more chronic disease comorbidities (OR=1.23, P=0.041), and have more sexual dysfunctions (OR=1.19, P=0.028). Veterans diagnosed with CVD were significantly less likely to report having sex within the previous year (OR=0.53, P=0.005). Veterans who reported discussing sexual issues with a physician were significantly more likely to be ≥75 years (OR=1.79, P=0.010), and report more than a high school education (OR=1.62, P=0.016), CVD diagnosis (OR=1.59, P=0.015), sex within the previous year (OR=1.69, P=0.033), and trouble achieving/maintaining an erection (OR=3.39, P<0.001). IMPLICATIONS These findings suggest older male Veterans, particularly racial/ethnic minorities and those less-educated, may benefit from VA and community-based aging and sexual health/counseling services. These services should promote increased patient-physician communication as well as referrals between physicians and sex health/counseling specialists.

Involvement of Family Members and Professionals in Older Women’s Post-Fall Decision Making

ABSTRACT This exploratory, descriptive study examined involvement of family members and professionals in older women’s post-fall decision making. We conducted semistructured interviews with 17 older women who had recently fallen and 11 individuals these women identified as being engaged in their post-fall decision-making processes. Qualitative data analysis involved open and axial coding and development of themes. After experiencing a fall, these older women’s openness to others’ opinions and advice; their assessments of types and credibility of potential information sources; and the communication practices they established with these sources influenced how they accessed, accepted, or rejected information from family members and professionals. Increased awareness of the involvement of others in post-fall decision making could enhance communication with older women who fall. Developing and implementing practical strategies to help family members and professionals initiate and engage in conversations about falls and their consequences could lead to more open decision making and improved post-fall quality of life among older women.