"We need a little strength as well": Examining the social context of informal caregivers for Black women with breast cancer.

BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.

Strategies to Achieve Breast Health Equity in the St. Louis Region and Beyond over 15+ Years.

Community-based participatory strategies are a promising approach to addressing disparities in community health outcomes. This paper details the efforts of Siteman Cancer Center to achieve breast health equity over the past 15+ years. We begin by describing the activities and successes arising from our breast health community partnerships including identifying priorities, developing recommendations, and implementing patient navigation services to advance breast health. This system-wide coordinated navigation approach that includes primary and specialty care providers helped to increase potential impact on reducing breast health disparities by expediting care, increasing care efficiency, and standardizing referral procedures across systems for all women including those who are uninsured and underinsured. We also discuss a mobile mammography unit that has been deployed to serve women living in both urban and rural regions. The van reached a particularly vulnerable population that was mostly poor, uninsured, and with limited educational backgrounds regardless of their zip code of service. This work shows that collaborations between academic and community partners have resulted in decreased late stage at diagnosis and improved access to mammography. Furthermore, we offer lessons learned and recommendations that may be applicable to other communities.

Development and Validation of a Brief Version of the Research Engagement Survey Tool.

The Research Engagement Survey Tool (REST) examines the level of partner engagement in research studies. This study used mixed methods, including web-based surveys (N = 336), a modified Delphi process (N = 18), and cognitive response interviews (N = 16), with convenience sampling to develop and validate a short version of the REST. We conducted factor analysis and calculated internal consistency for the condensed REST. We validated the condensed REST against the comprehensive REST. All analyses were carried out on two scales (quality and quantity) based on Likert-type response options. We examined convergent validity with other measures theoretically associated with the REST (e.g., the Community Engagement Research Index and the Partnership Self-Assessment Tool). This study produced a 9-item condensed version of the REST. The condensed REST loads on 1 factor, has high internal consistency (Cronbach's alpha = 0.92 for the quantity scale; 0.94 for the quality scale), is significantly correlated (ρ = 0.97; p < 0.001 for both scales) with the comprehensive (32-item) REST, and has negligible, low, and moderate correlation with other measures (e.g., the Partnership Assessment In community-based Research, trust in medical researchers, and the Coalition Self-Assessment Survey). Use of the condensed REST will reduce participant burden and time to complete. This standardized and validated quantitative measure is useful to compare engagement across projects or within a project over time.

Reaching Consensus on Principles of Stakeholder Engagement in Research.

BACKGROUND: Stakeholder-engaged research is an umbrella term for the types of research that have community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as approaches used in the research process. The level of stakeholder engagement across studies can vary greatly, from minimal engagement to fully collaborative partnerships. OBJECTIVES: To present the process of reaching consensus among stakeholder and academic experts on the stakeholder engagement principles (EPs) and to identify definitions for each principle. METHODS: We convened 19 national experts, 18 of whom remained engaged in a five-round Delphi process. The Delphi panel consisted of a broad range of stakeholders (e.g., patients, caregivers, advocacy groups, clinicians, researchers). We used web-based surveys for most rounds (1-3 and 5) and an in-person meeting for round 4. Panelists evaluated EP titles and definitions with a goal of reaching consensus (>80% agreement). Panelists' comments guided modifications, with greater weight given to non-academic stakeholder input. CONCLUSIONS: EP titles and definitions were modified over five Delphi rounds. The panel reached consensus on eight EPs (dropping four, modifying four, and adding one) and corresponding definitions. The Delphi process allowed for a stakeholder-engaged approach to methodological research. Stakeholder engagement in research is time consuming and requires greater effort but may yield a better, more relevant outcome than more traditional scientist-only processes. This stakeholder-engaged process of reaching consensus on EPs and definitions provides a key initial step for the content validation of a survey tool to examine the level of stakeholder engagement in research studies.

Barriers and Strategies to Participation in Tissue Research Among African-American Men.

Before the burgeoning field of biospecimen collection can advance prevention and treatment methods, researchers must access diverse molecular data samples. However, minorities, especially African-American men, remain reticent to join these studies. This study, using theory-based approaches, investigated African-American men's barriers to participating in biorepository research. Fourteen focus groups were conducted among 70 African-American men (ages 40 to 80). The groups were stratified by prostate cancer history and educational attainment background. Participants identified perceived factors that promoted or hindered study participation when questioned about their knowledge and attitudes about biospecimen research. Ninety-four percent of participants indicated never participating in a study that collected biological samples. Barriers to their participation included lack of knowledge and understanding regarding biospecimen research practices and uses. In addition, they extensively cited a prevalent mistrust of the medical community and discomfort with study recruitment practices. African-American males were more willing to participate in biorepository studies with physician endorsement or if they understood that participation could benefit future generations. Men also wanted more recruitment and advertising done in familiar places.

Applying projective techniques to formative research in health communication development.

This article describes a new approach to formative research in which projective techniques commonly used in psychological assessment were adapted for use in focus groups to help design colorectal-cancer screening materials for African American men and women. Participants (N = 20) were divided into six "design teams." Each team was given a selection of design supplies and asked to create and discuss a visual layout for screening materials. Participants chose design elements that reflected visual preferences that they felt would connect meaningfully with other African Americans. The dynamics within the design teams were different than in traditional focus groups, with participants having more control over the group's direction. Using projective techniques helped draw out unique information from participants by allowing them to "project" their opinions onto objects. This approach may be a valuable tool for health-promotion and health-communication practitioners seeking insight on the implicit values of a priority population.