Engaging African American breast cancer survivors in an intervention trial: culture, responsiveness and community (original) (raw)
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Journal of Cancer Education, 2013
Background-Despite an overall decline in mortality, breast cancer is the most commonly diagnosed cancer and the second most common cause of cancer death among African American women. As such, clinicians should prepare to address the unique sociocultural and psychological concerns encountered by African American women breast cancer survivors. Objective-To examine, using qualitative methods, the main coping facilitators used by African American women as they transition across the cancer continuum. The identification of these facilitators was then aligned with culturally sensitive interventions most useful with women coping with cancer, along the cancer continuum. Methods-This was a secondary analysis of 20 video-taped stories of African American breast cancer survivors collected as a part of the Washington University Center for Excellence in Cancer Communications project. The interview began with a discussion of how the survivor first became aware she had breast cancer, followed by a series of open-ended probes used to explore the following themes: coping, relationships, health care system experiences, follow up care, and quality of life living with breast cancer. Results-Survivors discussed their experiences and advice for targeting needs at each cancer stage, from screening to diagnosis, treatment, and then survivorship. Survivor narratives point to key evidence-based clinical intervention strategies at each stage of the cancer trajectory. Conclusion-This study found that survivors see a cyclical cancer course, whereby African American breast cancer survivors serve an important role in the lives of unscreened women, newly diagnosed women, and women in treatment.
Successful strategies for engaging Chinese breast cancer survivors in a randomized controlled trial
Translational Issues in Psychological Science, 2019
Chinese immigrant breast cancer survivors face various challenges due to cultural and socioecological factors. Research efforts to develop culturally sensitive interventions have been limited by lack of knowledge regarding successful recruitment and implementation practices among Chinese immigrant populations. This paper documents strategies utilized during the development and implementation of a randomized controlled trial of a culturally sensitive psychosocial intervention for Chinese immigrant breast cancer survivors. In partnership with a community agency, we developed culturally and linguistically appropriate research materials, recruited participants from community channels, and conducted longitudinal data collection. Key strategies include building equitable research partnerships with community agencies to engage participants; being responsive to the needs of community agencies and participants; considering within-group diversity of the research population; utilizing recruitment as an opportunity for relationship-building with participants; and developing key strategies to promote retention. Successful participant engagement in cancer intervention research is the result of collaboration among breast cancer survivors, community leaders and agencies, and academic researchers. The engagement process for this study is novel because we have emphasized cultural factors in the process and taken a relational approach to recruitment and retention.
Journal of Cancer Education, 2010
The dearth of evidence-based clinical trial education programs may contribute to the underrepresentation of African American and Hispanic American women in cancer research studies. This study used focus group-derived data from 80 women distributed among eight Spanish- and English-language focus groups. These data guided the researchers’ adaptation and refinement of the National Cancer Institute’s various clinical trials education programs into a program that was specifically focused on meeting the information needs of minority women and addressing the barriers to study participation that they perceived. A “sisterhood” theme was adopted and woven throughout the presentation.
Cancer Causes & Control, 2021
Aim: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. Method: Trained community health educators delivered a 30-minute presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre-and post-surveys one to two weeks after the session. Results: Paired-sample t-test showed signi cant increases in unadjusted mean scores for knowledge (p < .001), trust in medical researchers (p < .001), and willingness to participate in clinical trials (p = .003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained signi cant for the overall sample
African American women's perceptions of cancer clinical trials
Cancer Medicine, 2014
Cancer clinical trials are important for resolving cancer health disparities for several reasons; however, clinical trial participation among African Americans is significantly lower than Caucasians. This study engaged focus groups of 82 female African American cancer survivors or cancer caregivers, including those in better resourced, more urban areas and less resourced, more rural areas. Informed by an integrated conceptual model, the focus groups examined perceptions of cancer clinical trials and identified leverage points that future interventions may use to improve enrollment rates. Study findings highlight variation in community knowledge regarding cancer clinical trials, and the importance of community education regarding clinical trials and overcoming historical stigma associated with clinical research specifically and the health care system more generally. Study participants commented on the centrality of churches in their communities, and thus the promise of the church as loci of such education. Findings also suggested the value of informed community leaders as community information sources, including community members who have a previous diagnosis of cancer and clinical trial experience. The sample size and location of the focus groups may limit the generalizability of the results. Since the women in the focus groups were either cancer survivors or caregivers, they may have different experiences than nonparticipants who lack the close connection with cancer. Trust in the health system and in one's physician was seen as important factors associated with patient willingness to enroll in clinical trials, and participants suggested that physicians who were compassionate and who engaged and educated their patients would build important trust requisite for patient participation in clinical trials.
Journal of Cancer Education, 2022
Black and Latino adult cancer patients are underrepresented in cancer clinical trials, which limits generalizability of findings and amplifies disparities in healthcare access and outcomes. Community-level education programs designed to address barriers to participation could improve representation in cancer clinical trials. Through a community-campus partner framework, this study evaluated the Women United: Clinical Trials and the Fight Against Breast Cancer Program in Spanish and English. Participants were 422 women (141 Black, 140 Latina Spanish preference, 141 Latina English preference) who were randomized to view either the intervention (n = 215) or a control (n = 207) program. Assessments of clinical trials knowledge and barriers to clinical trials participation were taken before and after viewing. Results suggested that clinical trials knowledge increased and perceived barriers to participation decreased for those who viewed the educational program. More specifically, those in the intervention condition perceived fewer barriers related to personal benefits, mistrust, and familiarity of clinical trials. As expected, there were no differences in perceived barriers related to community support for either condition. Participants in both conditions were equally likely to join a subsequent study or a clinical trials community ambassador program. There were no differences in any of the outcomes across ethnicity or language, suggesting the program works equivalently across groups. This program is easy to administer and can be recommended for use among Black and Latina women to address factors related to clinical trials participation. Keywords Clinical trials • Cancer • Health disparities • Health education • Black • Latino Cancer clinical trials are research studies aimed at testing methods to prevent, identify, diagnose, treat, and manage cancer and its consequences. Such studies are essential to improving cancer-related outcomes, although only approximately 8% of adult cancer patients participate in
Evaluation of a Web-Based Program for African American Young Breast Cancer Survivors
American journal of preventive medicine, 2015
Among women aged <45 years, African Americans have the highest breast cancer incidence rates of any ethnic/racial group and disproportionately higher rates of mortality. Young breast cancer survivors (YBCSs) may require psychosocial and reproductive health support when navigating diagnosis, treatment, and follow-up care. To address these needs, the Young Sisters Initiative: A Guide to a Better You! Program (YSI) was developed, implemented, and evaluated. The purpose of this study was to assess implementation and fidelity; identify barriers and facilitators to implementation; and explore audience access, use, and perceived value of the YSI. A mixed-method, process evaluation of the YSI using interviews, an online screener, and post-use survey was conducted with data collected and analyzed from February through August 2013. Thematic analysis of qualitative data was conducted without qualitative data analysis software. Survey data were analyzed using PASW Statistics, version 18. YSI...
African American Women: Surviving Breast Cancer Mortality against the Highest Odds
International journal of environmental research and public health, 2015
Among the country's 25 largest cities, the breast cancer mortality disparity is highest in Memphis, Tennessee, where African American women are twice as likely to die from breast cancer as White women. This qualitative study of African-American breast cancer survivors explores experiences during and post treatment that contributed to their beating the high odds of mortality. Using a semi-structured interview guide, a focus group session was held in 2012 with 10 breast cancer survivors. Thematic analysis and a deductive a priori template of codes were used to analyze the data. Five main themes were identified: family history, breast/body awareness and preparedness to manage a breast cancer event, diagnosis experience and reaction to the diagnosis, family reactions, and impact on life. Prayer and family support were central to coping, and survivors voiced a cultural acceptance of racial disparities in health outcomes. They reported lack of provider sensitivity regarding pain, fina...