Clinical trials are essential to advancing knowledge to reduce disease morbidity and mortality; however, ethnic and racial minorities remain under-represented in those studies. We explored knowledge and perceptions of clinical trials among Mexican-Americans in Texas. We conducted focus groups (N = 128) stratified by gender, language preference, and geographical location. This paper presents four emergent, primary themes: 1) knowledge and understanding of clinical trials, 2) fears and concerns about participating, 3) perceived benefits of participating, and 4) incentives to participate. Results suggest that lack of knowledge and understanding of clinical trials leads to misunderstanding about research, including fears and lack of trust. Participants indicated that fears related to perceived experimentation, harm, immigration status, and lack of clinical trial opportunities within their communities were barriers to participation. On the other hand, free healthcare access, helping family members in the future, and monetary incentives could facilitate participation. We also found differences across themes by language, gender, and place of residence. Findings from our study could inform the development of interventions to enhance recruitment of Mexican-American participants into clinical trials.
Hispanics are under-represented in clinical research. To ensure that the Hispanic population benefits from advances in public health and medicine, including personalized medicine, there is a need to increase their participation in clinical trials and biobanking. There is a great need for improving awareness and addressing concerns individuals may have about participation. The purpose of this study was to adapt, implement, and evaluate educational materials about clinical trials and biobanking for Hispanic individuals. We adapted existing materials based on focus group data. We then trained four promotoras de salud to deliver education to Hispanic adults in community settings in Houston, TX. The promotoras educated 101 Hispanic adults, 51 on biobanking and 50 on clinical trials. Study staff administered brief pre- and post-test questionnaires that measured benefits, barriers, norms, self-efficacy, and intention to participate in either clinical trials or biobanking. Our sample was predominately female (83%) and Spanish-speaking (69%) and made less than $25,000 a year (87%). This intervention increased perceived benefits of participating in biobanking and clinical trials, self-efficacy for donating biospecimens, and intention to participate in biobanking if invited. Perceived barriers to participating declined. This study demonstrated that brief education can result in improved perceptions and attitudes related to participation in biobanking and clinical trials, and could increase participation. Researchers and practitioners could use these educational materials to educate Hispanic community members on clinical research potentially increasing participation rates in the future.
Background An expanding body of research documents the benefits of physical activity for cancer survivors' physical functioning and quality of life, but few successful models provide community‐based physical activity programs to cancer survivors. This report presents an evaluation of Active Living After Cancer, an evidence‐based physical activity program for breast cancer survivors, adapted for community delivery to minority and medically underserved survivors. Methods Survivors were recruited from health care and community settings. The program consisted of 12 weekly group sessions providing training in cognitive and behavioral skills for behavior change, brief physical activity, and cancer survivorship‐related content. At the baseline and follow‐up, participants completed assessments of their physical activity, quality of life, and physical functioning (6‐minute walk and 30‐second sit‐to‐stand test). At follow‐up, they also completed questionnaires to measure program content mastery and satisfaction. Results The outcome analysis included 127 participants. Physical activity and quality of life (mental and physical) improved from the baseline to follow‐up (all P < .01). Physical functioning improved, with increases in sit‐to‐stand repetitions (mean, 12.5 at the baseline vs 14.9 at the follow‐up; P < .01) and 6‐minute walk distances (mean, 428 m at the baseline vs 470 m at the follow‐up; P < .01). Conclusions The results highlight the effectiveness of an evidence‐based program adapted for community‐based delivery to minority and medically underserved breast cancer survivors. The program could be delivered to improve outcomes in diverse survivor populations. Lay Summary Physical activity in breast cancer survivors is related to better quality of life and longer cancer‐free survival. However, there are few community‐based programs to help breast cancer survivors to become more physically active. The Active Living After Cancer program was adapted from an evidence‐based program and delivered in community‐based settings to minority and medically underserved breast cancer survivors. It consisted of 12 weekly group sessions in which participants learned skills to increase their physical activity. The program participants increased their physical activity and improved their mental and physical well‐being and physical functioning.
Little research is currently available that captures variation in the degree to which individuals who have, or had cancer in the past (but are in remission) integrate their cancer experience into their sense of self or their cancer-associated identity. Such research should cover how those identities shape personal narratives within existing or new social networks so that, ultimately, we understand the implications for treatment choices and health outcomes. Particularly understudied are the social factors influencing the incorporation of cancer into identity, learning, and behavior. Social network analysis captures specific relationships, what they offer, and the structure or constellation of these relationships around someone who has cancer or has had cancer. Some studies point to potential cultural differences in ethnic or social groups in how social influences on the cancer experience play out in terms of individual coping strategies. In some populations, social cohesion or tight networks are common and of particular importance to individuals and include social institutions like church communities. Social status might also generate social pressures not typically noticed or experienced by other groups. We will discuss how social network analysis can be used to elucidate these factors and, conversely, how the specific context of cancer diagnosis can be used through social network analysis to better understand the role of community in helping individuals address situations of severe adversity.
Latino day laborers (LDLs) are at a high risk for injury and accidents at work and have limited socioeconomic resources to deal with their consequences. While little is known about LDLs’ perceptions of their own vulnerability at the workplace, less is known about the strategies they adopt to confront these risks. The purpose of this qualitative study was to assess LDLs’ perceptions of their workplace dangers and to document the strategies they adopt and endorse to confront them. Guided by a participatory research approach, four focus groups stratified by age were conducted with 34 LDLs in Houston, Texas. Main focus group themes were identified using a combination of qualitative analysis methods involving a thematic analysis conducted by the interview team, LDL advisors, and bilingual Latino researchers. All participants were Latino males (mean age = 40), the majority reported having completed sixth grade or less (64.2%) and having lived in the United States for an average of 12.7 years. We described three categories of strategies to reduce risk for workplace injury generated by local LDLs (practical knowledge and job experience, interpersonal, and personal). These strategies should be explored and encouraged to assist in planning risk-reduction programs, presented in the voice and language of Latino “inside experts” with firsthand experience. The findings of the focus group suggest that LDLs already possess a broad repertoire of strategies to cope with risks at work that can be incorporated in safety programs for LDLs and other immigrant Latino workers.
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