Melissa A. Green

Circles of Care: Implementation and Evaluation of Support Teams for African Americans With Cancer

Background. Community-based peer support may help meet the practical, emotional, and spiritual needs of African Americans with advanced cancer. Support teams are a unique model of peer support for persons facing serious illness, but research is rare. This study sought to (a) implement new volunteer support teams for African Americans with advanced cancer in two distinct regions and (b) evaluate support teams’ ability to improve support, awareness of services, and quality of life for these patients. Methods. The study used a pre–post design. Community and academic partners collaborated to implement volunteer support teams and evaluate the intervention using pre–post surveys of volunteers and patients. Patients who declined support teams were also interviewed as a comparison group. Results. Investigators enrolled and trained 130 volunteers who formed 25 support teams in two geographic regions. Volunteers supported 25 African American patients with advanced cancer (72%) or other diseases. After 2 months, patients with support teams reported fewer needs for practical, emotional, and spiritual support on a structured checklist. They more often communicated with someone about their cancer care needs (48% vs. 75%, p = .04), and were more aware of Hospice (4% vs. 25%, p = .04), but quality of life scores were unchanged. Comparison patients who refused a support team had fewer support needs at baseline and follow-up, suggesting that refusals were based on a lack of need. Conclusion. Coordinated volunteer support teams are a promising new model to provide peer support for African Americans facing cancer and other serious illnesses. Further testing in a pragmatic clinical trial is warranted.

Circles of Care Development and Initial Evaluation of a Peer Support Model for African Americans With Advanced Cancer

Peer support interventions extend care and health information to underserved populations yet rarely address serious illness. Investigators from a well-defined academic–community partnership developed and evaluated a peer support intervention for African Americans facing advanced cancer. Evaluation methods used the Reach, Efficacy, Adoption, Implementation, Maintenance (RE-AIM) framework. Investigators initially recruited and trained 24 lay health advisors who shared information or support with 210 individuals. However, lay advisors reported barriers of medical privacy and lack of confidence working alone with people with cancer. Training was modified to match the support team model for peer support; training reached 193 volunteers, 104 of whom formed support teams for 47 persons with serious illness. Support teams were adopted by 23 community organizations, including 11 African American churches. Volunteers in teams felt prepared to implement many aspects of supportive care such as practical support (32%) or help with cancer or palliative care resources (43%). People with serious illness requested help with practical, emotional, spiritual, and quality of life needs; however, they rarely wanted advocacy (3%) or cancer or palliative care resources (5%) from support teams. Volunteers had difficulty limiting outreach to people with advanced cancer due to medical privacy concerns and awareness that others could benefit. Support teams are a promising model of peer support for African Americans facing advanced cancer and serious illness, with reach, adoption, and implementation superior to the lay advisor model. This formative initial evaluation provides evidence for feasibility and acceptance. Further research should examine the efficacy and potential for maintenance of this intervention.

Evaluation of Amigas Latinas Motivando el Alma (ALMA): a pilot promotora intervention focused on stress and coping among immigrant Latinas.

Recent immigrant Latinas are at increased risk of poor mental health due to stressors associated with adapting to life in the United States. This study evaluated Amigas Latinas Motivando el Alma, a promotora intervention to reduce stress and promote health and coping among recent immigrant Latinas. Using a pre- and post-test design, we evaluated mental health outcomes, specifically, in promotoras. Promotoras’ knowledge levels related to role of promotora and stress management increased, depressive symptoms and stress levels decreased, and coping responses and perceived social support increased as well. Results suggest that promotora programs may be an effective way to improve mental health in recent immigrant Latinas.

Connecting communities to health research: development of the Project CONNECT minority research registry.

INTRODUCTIONnPrevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members.nnnMETHODSnWe describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics.nnnRESULTSnDuring the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry.nnnCONCLUSIONSnA health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations.

Examining Characteristics of Congregation Members Willing to Attend Health Promotion in African American Churches

Background. Although churches are an important partner for improving health within the African American community, it is not known how congregants are best reached by health promotion activities and thus how best to target members in recruitment. This study examined how characteristics of churches and congregants’ beliefs and interests in faith-based health promotion related to their willingness to attend church-based health promotion activities. Method. We surveyed adult congregants (n = 1,204) of 11 predominately African American churches in North Carolina. Surveys collected data within four domains: demographics (age, sex, education), behavioral (church attendance, respondent food choices, and physical activity), cognitive (church-based health promotion belief, Bible-based healthy living interest, healthy living resource interest), or environmental (family health, church travel distance, church health ministry activity, church members’ food choices). Analyses used a dichotomous outcome, interest in attending programs offered by the health ministry. Domain-specific models were constructed. Logistic generalized estimating equations adjusted for clustering. Results. Of the 1,204 congregants, 72% were female, 57% were 50 years or older, 84% had a high school education or more, and 77% had a chronic health condition. In bivariate analyses and in models adjusting for all four domains, cognitive factors had the highest odds of willingness to attend. Conclusion. Congregants’ belief in the church’s role in health promotion and their desire to learn about healthy behaviors highlight the role of the African American church as a partner in addressing health disparities and the need to capitalize on this expectation through stronger partnerships between medical and faith communities.

Using survivorship care plans to enhance communication and cancer care coordination: Results of a pilot study

PURPOSE/OBJECTIVESnTo compare a structured cancer survivorship care plan (SCP) transition visit versus an SCP transition visit coupled with a coordinated follow-up visit from the primary care provider (PCP).u2029.nnnDESIGNnPilot randomized, controlled study.u2029.nnnSETTINGnREX Cancer Hospital, a community cancer center in Raleigh, North Carolina.u2029.nnnSAMPLEn34 adults completing treatment with curative intent. u2029.nnnMETHODSnPatients and PCPs completed measures at baseline and at six weeks. Wilcoxon signed rank and rank sum tests were used for comparisons of SCP only versus SCP with PCP follow-up visit, as well as between high- and low-activated patients.u2029.nnnMAIN RESEARCH VARIABLESnConfidence in survivorship information and survivor concerns.u2029.nnnFINDINGSnThe intervention was feasible and acceptable to patients and their PCPs. All patients (N = 34) had less contradictory information about care after SCP receipt. PCPs reported improved confidence in patients, regardless of intervention arm. Highly activated or empowered patients benefited more and had increased confidence and fewer concerns about cancer care. u2029.nnnCONCLUSIONSnThe SCP interventions led to increased confidence in survivorship information, but some benefits were greater for highly activated patients. PCPs also had improved confidence in survivorship care after SCP receipt, whether or not they saw the patient in follow-up. A larger study is needed to further explore these findings and the changes over time.u2029.nnnIMPLICATIONS FOR NURSINGnNurses can be instrumental in facilitating the development and delivery of SCP to survivors and PCPs.

Evaluating a Community-Partnered Cancer Clinical Trials Pilot Intervention with African American Communities

Cancer clinical trial (CCT) accrual and retention rates remain disproportionately low among African Americans. Awarenesss and access to trials are crucial facilitators of trial participation. Strategies developed within a community-based participatory framework (CBPR) are potential solutions to increase awareness and access to CCTs. In this study, we describe the pilot phase of three innovative community-centered modules to improve basic CCT knowledge, awareness of locations to access CCT information, and opportunities to participate in CCTs. Four community organizations completed Community Bridges to CCT training-of-the-trainer and recruited adult African American volunteers to participate in one of three CCT education modules: a workshop about CCTs, a role play describing one person’s experience with CCTs, or a call and response session reviewing myths and facts about CCTs. Pre- and post-test surveys were collected and analyzed using McNemar agreement statistic to evaluate changes in knowledge and attitudes regarding trials. Trainers enrolled 125 participants in the call and response (nu2009=u200922), role play (nu2009=u200960), and workshop (nu2009=u200943) modules. Module participants were mostly African American, female, and with a mean age of 53xa0years. Comparison of pre- and post-test responses demonstrates favorable changes in awareness of CCTs and where to access CCTs across the sample. Analysis by module type indicates significant increases for participants in the call and response (pu2009<u20090.01) and role play modules (pu2009<u20090.001), but not the workshop module. Despite measures taken to increase the participation and retention rate of African Americans in clinical trials, little advancement has been made. Developing tailored community education modules on CCTs within the CBPR framework is a promising innovation to increase knowledge about CCTs and favorable attitudes about participation that are known precursors to trial enrollment.

Carrying the Burden: Perspectives of African American Pastors on Peer Support for People with Cancer

For African Americans facing advanced cancer, churches are trusted sources of support and ideal settings to improve access to supportive care. The Support Team model enhances community support for practical, emotional, and spiritual caregiving. We report on focus groups with pastors of 23 Black Churches and explore their perspective on the Support Team model for church members with cancer. Pastors describe the needs of church members facing cancer from a holistic perspective and recognize opportunities for synergistic faith–health collaboration. The results of this study indicate potential benefits of the Support Team model in Black Churches to reduce silent suffering among individuals facing cancer.

Abstract B20: Community bridges to cancer clinical trials: Evaluating community education modules

Cancer clinical trials are a source for high-quality cancer care. However, they are often perceived as an option of last resort. Raising consciousness about cancer clinical trials in community settings may lead to informed decision-making about cancer clinical trials. Objective: To modify and pilot training materials for a community organization intervention to positively impact knowledge, attitudes, beliefs, and behaviors regarding cancer research in African American communities in North Carolina. Methodology: The Education Network to Advance Cancer Clinical Trials, University of North Carolina at Chapel Hill, and four community-based organizations collaborated using CBPR methods to revise cancer clinical trials education materials for Southern African American communities. Three cancer clinical trials education modules were developed and piloted in African American Communities with 128 participatnts. Modules include: 1) a workshop about cancer clinical trials and what they mean for communities; 2) a storytelling discussion describing one person9s experience with cancer clinical trials; and 3) a discussion session that reviews the myths and facts about cancer clinical trials. Results/Impact: This presentation describes the preliminary findings of the intervention. Participants demonstrated understanding of the definition of clinical trials. Preliminary results establish consensus that participants desire equal access to cancer clinical trials, improved community education, and personal interest in learning more about clinical trials. Conclusions: Culturally sensitive community education sessions about cancer clinical trials improve favorable attitudes towards clinical trials. Actively engaging African American communities in dialogue about cancer research is necessary to create community awareness of the role of cancer research in reducing health disparities. Engaging community partners in cancer clinical trials education is synergistic with their mission of equal access to care. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):B20.

Conceptualizing trust in community-academic research partnerships using concept mapping approach: A multi-CTSA study

OBJECTIVESnCollaborations between communities, healthcare practices and academic institutions are a strategy to address health disparities. Trust is critical in the development and maintaining of effective collaborations. The aim of this pilot study was to engage stakeholders in defining determinants of trust in community academic research partnerships and to develop a framework for measuring trust.nnnMETHODSnThe study was conducted by five collaborating National Institute of Health Clinical and Translational Sciences Awardees. We used concept mapping to engage three stakeholders: community members, healthcare providers and academicians. We conducted hierarchical cluster analysis to assess the determinants of trust in community-academic research partnerships.nnnRESULTSnA total of 186 participants provided input generating 2,172 items that were consolidated into 125 unique items. A five cluster solution was defined: authentic, effective and transparent communication; mutually respectful and reciprocal relationships; sustainability; committed partnerships; and, communication, credibility and methodology to anticipate and resolve problems.nnnCONCLUSIONnResults from this study contribute to an increasing empirical body of work to better understand and improve the underlying factors that contribute to building and sustaining trust in community academic research partnerships.