African American Community Members Research Articles

Toward a Beloved Community: Facilitated Group Listening as a Tool for Community Development and Civic Engagement

Toward a Beloved Community: Facilitated Group Listening as a Tool for Community Development and Civic Engagement

The Relationship between dementias and zip codes in the US: The African American community and higher rate of Alzheimer’s disease

AbstractBackgroundNot many people will connect the dementia rate with the person’s ZIP Code, but unfortunately, our ZIP Code significantly influences our overall health, including dementia. Many Black Americans experience a higher rate of Alzheimer’s and vascular dementia compared to whites, and the disproportionate impact is devastating, especially for black women. The risk of developing Alzheimer’s is two to three times higher for Black Americans—who are diagnosed at later stages—than for the general population.MethodThrough literature search, small group discussion with African American community members and faith‐based community leaders, education about relationship between dementia and zip codes was addressed.ResultsFaith‐based communities can play a significant role in improving chronic conditions, awareness, and early detection, especially in the African American patient population.ConclusionAs the U.S. population ages and communities of color become a higher proportion of the older population, a higher percentage of those with Alzheimer’s disease will be people of color. It is not entirely clear why Black Americans are at a higher risk. Still, current research suggests that the increase may be related to three factors: Higher rate of Chronic conditions ‐ the connection between vascular conditions and dementia; Delayed diagnosis ‐ Black participants in Alzheimer’s disease research studies were 35% less likely to be diagnosed than white participants and Social Determinants of Health (SDOH) ‐ there is a link between SDOH and dementia. Unfortunately, in the USA, our zip code is more important than our genetic code.

Engaging the community on colorectal cancer screening: Additional factors identified by African Americans as potential barriers during focus groups

ObjectiveAfrican-Americans have the highest rate of colorectal cancer deaths. Adherence to colorectal cancer screening guidelines can improve outcomes. The objective of this study was to evaluate physician trust and barriers to screening utilizing a unique bi-directional learning focus group involving African-American adults and health care learners. MethodsA focus group of African-American adults from a community church and university health care learners was conducted to identify colon cancer screening barriers. Health care learners were medical students, resident physicians and gastroenterology fellows. Pre-focus group surveys, including the Wake Forest Physician Trust Scale (WFPTS) and a colon cancer screening knowledge survey, were administered. Audio recording of the focus group was transcribed with subsequent thematic analysis. A post-focus group survey evaluated the colorectal cancer screening barriers identified during the focus group. Analysis of pre- and post- focus group surveys was performed using Fisher Exact test with significance set at p<0.05. ResultsThe focus group consisted of 18 members (7 African-American community members, 11 non-African American health care learners). WFPTS revealed that 83% (86% community members, 82% health care learners; p = 1.0) strongly agree / agree that their physician would advocate for their health. 77% (86% community members, 73% health care learners; p = 1.0) strongly agree / agree that they trusted their physician. 100% recognized that colon cancer screening is recommended. The focus group identified lack of awareness (81%), colonoscopy preparation (81%), trust in physician (60%), lack of insurance coverage (56%), transportation (56%), colonoscopy wait time (50%), insufficient physician discussion (50%) and fear of procedure or cancer (35%) as screening barriers. Post-focus group surveys revealed that community members more frequently identified racial disparity in health care (p = 0.0474), physician respect toward patients (p = 0.0128) and insufficient physician discussion (p = 0.0006) as screening barriers. ConclusionsFocus group discussion identified multiple barriers for colorectal cancer screening. Notably, differences in the perceptions of African-American community members and non-African-American health care learners about racial disparity in health care, physician respect toward patients and insufficient physician discussion were revealed. The integration of bi-directional focus group learning can be considered as a potential strategy to assist in the development of focused screening interventions.

"A cuff is not enough": A community-based participatory research approach to soliciting perspectives of African Americans with hypertension and their family members on self-management intervention features.

We aimed to solicit the perspectives of African Americans with hypertension and their family members on the desired features of a behavioral hypertension self-management intervention. Using a community-based participatory approach to intervention design, we conducted four dyadic focus groups, including African American community members with hypertension (n = 23) and their family members (n = 23), recruited from African American-serving Christian churches in a large, southern metropolitan area. We used open-ended questions to elicit participants' perspectives regarding program features they would recommend, intervention delivery, and barriers necessary to address. Our grounded theory analysis identified themes reflecting participants' recommendations for hypertension self-management interventions to enhance health literacy and provide communication training via an accessible, population-tailored, family-based approach, which they believed has the potential to create family-level impact on health across generations. Participants also recommended intervention researchers engage in advocacy (i.e., via physician education and policy change) as part of a broader impact on structural inequities driving worse hypertension and health outcomes for African Americans. The perceptions and recommendations of African Americans with a lived experience of hypertension, as well as their family members, aid in shaping acceptable and efficacious behavioral interventions aiming to promote hypertension self-management behavior while leveraging the unique power of family relationships to create sustained behavior change.

Perspectives of Infant Mortality from African American Community Members.

Infant mortality (IM) is often used to determine overall population health and well-being. Health disparities exist with African American (AA) infants having higher rates of IM than White infants. The purpose of this study was to examine the knowledge, attitudes, and perceptions of members in an AA community regarding IM, which can be used to develop interventions. A qualitative descriptive design guided this study. A county in the state of Indiana was the setting from which the researchers enrolled participants in this study. The participants consisted of 16 AA community members who were recruited from a local agency and who had completed an educational program on IM. Through semistructured phone interviews, participants described their understanding of IM. The data analysis of the transcribed interviews was performed via content analysis to yield overall themes from the data. The analysis identified three themes describing AA Community members' perspectives on IM: (1) Shying Away from the Topic of Infant Mortality; (2) Receiving Misinformation from Family Members; and (3) Considering Infant Mortality as Unpreventable. The findings of this study suggest that participants avoided the topic of IM, often received misinformation from family members, and believed infant death could not be prevented. Health care providers should have an open and culturally competent discussion about issues of IM, engage family members, and support community-based initiatives and education for members in AA communities.

Abstract 1942: Effectiveness of community outreach/engagement and faith-based strategies among African American &amp; African Nationals to increase cancer clinical trials participation using a culturally tailored educational manual

Abstract Background: The importance of diversity in clinical trials is vital to ensure treatments and medications work and respond well for everyone. In contrast to other ethnic groups, AAs are disproportionately affected by various types of cancers in the U.S., such as prostate &amp; pancreatic cancer, and have higher cancer mortality rates. Yet AA participation in cancer clinical trials remains extremely low. Black/African Americans make up 13.4% of the US population and have a clinical trial enrollment rate of less than 5%. In comparison, White/Caucasians make up about 67% of the US population and have a 75% enrollment rate in clinical trials and the Asian community makes up less than 6% of US population and have a 15% participation rate in clinical trials. Reported factors that have influenced Black/African American clinical trials enrollment rates are little awareness of clinical trials, religious beliefs, and access to health care barriers. Improving clinical trial participation among African Americans/African Nationals (AA/AN) is essential to reduce cancer health disparities because it gives opportunity to increased access to breakthrough cancer therapies and treatments. Methods: To address these disparities, we composed an AA/AN Clinical Trials manual to be distributed among these populations living in Los Angeles County (LAC). The AA/AN manual modules review: 1) Intro to Clinical Trials 2) Demographics 3) Types of clinical trials 4) Phases of clinical trials 5) Safety of clinical trials 6) The role of faith among AA communities and 7) Life during and after clinical trials. There is also a Call to Action to share the manual information with friends and family, to talk with one’s primary care physician and get screened, and to participate in clinical trials. The manual was culturally and linguistically adapted to deliver lay messages on clinical trials as needed, using graphs, infographics, and educational videos featuring clinical trials cancer researchers and experts. Results: 90 Churches in Los Angeles County serving AA/AN communities have been provided with avirtual copy of the Clinical Trials manual to be disseminated among their communities. Additionally, have participated in 7 major community health events in LAC to outreach and engage African American community members at which we have distributed 822 hard copy clinical trials manuals between November of 2021 and November of 2022. Conclusion: Involvement of faith-based communities in outreach and engagement strategies mayincrease cancer clinical trials participation among African American communities. The utilization of culturally sensitive and adapted educational materials may increase access to information on clinical trials and contribute to tackle clinical trials enrollment barriers affecting underserved minorities. Citation Format: Lourdes A. Baezconde-Garbanati, Carolina Aristizabal, Eduardo Ibarra, Cynthia Quince. Effectiveness of community outreach/engagement and faith-based strategies among African American &amp; African Nationals to increase cancer clinical trials participation using a culturally tailored educational manual [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 1942.

A Struggle for Heritage: Archaeology and Civil Rights in a Long Island Community by Christopher N. Matthews (review)

Reviewed by: A Struggle for Heritage: Archaeology and Civil Rights in a Long Island Community by Christopher N. Matthews Katherine Hayes (bio) A Struggle for Heritage: Archaeology and Civil Rights in a Long Island Community by Christopher N. Matthews University Press of Florida, 2020 A STRUGGLE FOR HERITAGE recounts a community-academic partnership grounded in building the case for preservation of a remarkable historic presence for the Native and African American community in Setauket (Long Island, New York). Matthews frames the archaeological work in the project as "archaeology as political action," identifying the preservation legislative system as state-sanctioned recognition and power. Although the community carries a strong sense of their history, elder members are concerned with the literal loss of grounds as younger generations choose not to remain in Setauket. Thus the recognition in preservation is aimed both inward (community persistence) and outward (state power). The prevalent white settler narrative that Matthews refers to as the "authorized heritage discourse" conflicts with the community-preserved history (37). Settler history focuses on the Revolutionary War, and Matthews describes a wide variety of its manifestations: written into local histories, promoted by historical organizations, celebrated in representational artwork, and embedded in landscapes, an ever-familiar story of white settlers' successful struggles for survival while others quietly disappear. In contradistinction to the assertions of disappearance, the next chapter provides a "Counter-map of Setauket" where the same landscape is marked by and mapped with places that Native and African American community members remember as their own deep history. Matthews frames the major inquiry of the book in terms of a shift from "creole synthesis"—in the early New York postemancipation years of greater racial integration—to "racial modernity," a midcentury rising tide of anti-Black racism and antiabolitionist sentiment that transitioned into Jim Crow segregation (105). He uses an eclectic mix of evidence, including an extended analysis of genre paintings by William Sidney Mount, historical newspaper writing, and censuses. Censuses provide neighborhood demographics and demonstrate an initial period of relatively greater integration followed by pronounced racial segregation that concentrated the Native and African American community into one or two areas of Setauket. Census [End Page 200] data guided the selection of the two sites for archaeological excavation and interpretation by the community collaborative partnership. Both were home sites associated with known families and individuals, well contextualized through archival records, photos, oral histories, and personal memories. The goal was to compare the experiences of the historical community over time in the context of changing structures of racism. The following two chapters detail the findings of the excavations and material analyses. The two sites reveal distinct differences, particularly in access to resources and environmental conditions. The nineteenth-century site was home to a multigenerational family who sustained themselves on an independent farm while also drawing on the abundant wild plants and fauna around them. The early twentieth-century site was home to a family pressed into low-wage labor and dependent upon the market for staple foods and materials. Generations beyond emancipation, we see the material evidence of declining opportunities: a strong argument against the tone of a progressive pluralistic society often championed by heritage organizations. While the book impressively outlines a rich history, Matthews closes with a rather pessimistic note about the value of political action via preservation, stating that despite a successful nomination of a historic district to the National Register of Historic Places, little change in the social and racial context of Setauket has occurred. While sympathizing greatly with the community members, this comes as little surprise; and the author's conclusion highlights my concern with the book. Despite the emphasis on the community's diversity and the refusal to essentialize its members, the study and interpretation is grounded in critical Black studies and an analysis of structural racism. What of settler colonialism? Where is the discussion of Indigenous sovereignty and the efforts of the Setalcott Nation in seeking federal recognition? Referencing Native scholars such as Audra Simpson or Glen Coulthard could reframe the recourse to the politics of preservation, showing that preservation practice is fundamentally shaped by settler and white supremacist values and epistemologies. Why would a community, steeped in its own...

Utilizing Readers Theater for Health Promotion Education in a Rural Setting

Purpose: The aims of the study were to bring in healthy foods, such as fruits and vegetables, provide cardiac health promotion information, and build a community-based partnership with a rural community in West Alabama by soliciting members of the community to participate in and attend a play on cardiovascular health promotion. Sample: The sample population was mostly older African American community members from a non-incorporated, rural area along with individuals from surrounding communities in an Alabama Black Belt county. Through community collaboration, 67 persons were recruited to participate as actors via reading a script and (n =13) and all remaining persons were audience members for the community play (n = 54). Method: This study utilized a community-based participatory research approach with a qualitative, descriptive research design. The Farmers Theater Toolkit, which utilizes a readers theater technique was used to bring cardiovascular health promotion information to a rural community setting. Findings: The majority of audience participants either strongly or somewhat agreed that what they learned from the community play would help them make better food choices (96.3%). Conclusion: Utilizing the Farmers Theater Toolkit in a rural community was an innovative, fun way to share health promotion information. The citizens of this community were very welcoming to the researcher and were excited to partner with an academic institution. Health promotion education may reduce health risk behaviors such as unhealthy food choices. This type of intervention may serve as an impetus to making better food choices. Keywords: rural community, theater, health eating, health promotion DOI: https://doi.org/10.14574/ojrnhc.v22i1.696

Development of a Culturally Concordant Goals of Care Conversation Guide Created by and for African American Community Members; Phase I: Partnering with the African American Community

Development of a Culturally Concordant Goals of Care Conversation Guide Created by and for African American Community Members; Phase I: Partnering with the African American Community

Engaging Patient Advisory Boards of African American Community Members with Type 2 Diabetes in Implementing and Refining a Peer-Led Medication Adherence Intervention.

African Americans are more likely than non-Hispanic whites to be diagnosed with and die from diabetes. A contributing factor to these health disparities is African Americans’ poor diabetes medication adherence that is due in part to sociocultural barriers (e.g., medicine and illness misperceptions), which negatively affect diabetes management. In our prior work, we engaged with community stakeholders to develop and test a brief version of a culturally adapted intervention to address these barriers to medication adherence. The objective of this study was to elicit feedback to inform the refinement of the full 8-week intervention. We utilized a community-engaged study design to conduct a series of meetings with two cohorts of patient advisory boards of African Americans with type 2 diabetes who were adherent to their diabetes medicines (i.e., peer ambassadors). In total, 15 peer ambassadors were paired with 21 African American participants (i.e., peer buddies) to provide specific intervention support as peers and serve in an advisory role as a board member. Data were collected during nine board meetings with the patient stakeholders. A qualitative thematic analysis of the data was conducted to synthesize the findings. Feedback from the patient advisory board contributed to refining the intervention in the immediate-term, short-term, and long-term. The inclusion of African American community members living with type 2 diabetes on the advisory board contributed to further tailoring the intervention to the specific needs of African Americans with type 2 diabetes in the community.

Abstract PO-058: Increasing liver cancer prevention knowledge through a community-based education initiative to improve liver cancer prevention for underserved African, Asian, and Hispanic communities

Abstract Background: Though a largely preventable disease, liver cancer is now the fastest-increasing cause of cancer death in the US, and it is highly fatal. Hepatocellular carcinoma (HCC) is the most common type of liver cancer, and it disproportionally affect racial/ethnic minorities, especially the medically underserved. Most HCC cases are associated with hepatitis B virus (HBV) and hepatitis C virus (HCV). Methods: To increase awareness of liver cancer prevention and screening, we partnered with community-based organizations through NCI funded U54 TUFCCC/HC Cancer Partnership Community Outreach Core, in the greater Philadelphia metropolitan and New York City to design and conduct a liver cancer prevention project. Pre- and post- survey data was collected from underserved Asian, African, and Hispanic American community members who participated in educational workshops. This abstract will report the 473 eligible participants' knowledge on HBV, HCV, and liver cancer both before and after the education. We conducted wilcoxon Signed-rank, Kruskal-Wallis, and Wilcoxon sum-rank tests. Results: Knowledge of risk factors increased significantly in all three communities from the pre-survey to the post-intervention survey (2.15 vs. 3.69, p&amp;lt;0.0001). Knowledge of risk factors also significantly increased within the African (1.11, p&amp;lt;0.0001), Asian (1.88, p&amp;lt;0.0001) and Hispanic (3.21, p&amp;lt;0.0001) American Communities. There were no significant differences in increased knowledge by gender (male= 2.18 vs female=2.25, p=0.72). Conclusions: The findings of our study show the importance and effectiveness educational interventions have on promoting liver cancer prevention knowledge among the minority groups who are most affected in the U.S. by liver cancer disparity. Citation Format: Wenyue Lu, Lin Zhu, Safa Ibrahim, Kerry Traub, Ellen Kim, Ada Wong, Nathaly Rubio-Torio, Evelyn Gonzalez, Marilyn A. Fraser, Ming-Chin Yeh, Grace X. Ma, Olorunseun O. Ogunwobi, Yin Tan. Increasing liver cancer prevention knowledge through a community-based education initiative to improve liver cancer prevention for underserved African, Asian, and Hispanic communities [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-058.

Sign of the times: Community engagement to refine a cardiovascular mHealth intervention through a virtual focus group series during the COVID-19 Pandemic

BackgroundAfrican-Americans are underrepresented in mobile health intervention research studies which can perpetuate health inequities and the digital divide. A community-based, user-centered approach to designing mobile health interventions may increase their sociocultural relevance and effectiveness, especially with increased smartphone use during the coronavirus disease 2019 pandemic. We aimed to refine an existing mobile health intervention via a virtual focus group series.MethodsAfrican-American community members (n = 15) from churches in Minneapolis-St. Paul and Rochester, Minnesota were enrolled in a virtual (via videoconferencing), three-session focus group series over five months to refine a cardiovascular health-focused mobile health application (FAITH! [Fostering African-American Improvement in Total Health!] App). Participants accessed the app via their smartphones and received a Fitbit synced to the app. Participants engaged with multimedia cardiovascular health-focused education modules, a sharing board for social networking, and diet/physical activity self-monitoring. Participant feedback on app features prompted iterative revisions to the FAITH! App. Primary outcomes were app usability (assessed via Health Information Technology Usability Evaluation Scale range: 0–5) and user satisfaction.ResultsParticipants (mean age [SD]: 56.9 [12.3] years, 86.7% female) attended a mean 2.8 focus groups (80% attended all sessions). The revised FAITH! App exceeded the goal Health Information Technology Usability Evaluation Scale score threshold of ≥4 (mean: 4.39, range: 3.20–4.95). Participants positively rated updated app content, visual appeal, and use of social incentives to maintain engagement. Increasing user control and refinement of the moderated sharing board were identified as areas for future improvement.ConclusionsCommunity-partnered, virtual focus groups can optimize usability and increase participant satisfaction of mobile health lifestyle interventions that aim to promote cardiovascular health in African-Americans.

Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.

Engaging African American Clergy and Community Members to Increase Access to Evidence-Based Practices for Depression.

African American clergy provide informal counseling for community members with depression. Through a qualitative case study with two African American clergy and 25 community members in New York City, the authors explored perspectives on training clergy in interpersonal counseling (IPC). Data were analyzed by using thematic analysis. Results were grouped into three themes: mistrust of institutions, depression stigma, and feasibility of training clergy in IPC. Clergy members wanted IPC training but did not want to counsel more people. Thus, training clergy may be insufficient to reduce racial disparities in access to evidence-based depression services.

Engaging the Community on Colorectal Cancer Screening Education: Focus Group Discussions Among African Americans.

Colorectal cancer (CRC) is the third most diagnosed cancer in the USA, and African Americans experience disproportionate CRC diagnosis and mortality. Early detection could reduce CRC incidence and mortality, and reduce CRC health disparities, which may be due in part to lower screening adherence and later stage diagnosis among African Americans compared to whites. Culturally tailored interventions to increase access to and uptake of CRC stool-based tests are one effective strategy to increase benefits of screening among African Americans. The objectives of this study were to obtain feedback from African Americans on CRC educational materials being developed for a subsequent behavioral clinical trial and explore participants’ knowledge, attitudes, and beliefs about CRC and CRC screening. Seven focus groups were conducted between February and November 2020. Participants were African Americans recruited through community contacts. Four focus groups were held in-person and three were conducted virtually due to Covid-19 restrictions. Participants ranked CRC educational text messages and provided feedback on a culturally tailored educational brochure. A focus group guide with scripted probes was used to elicit discussion and transcripts were analyzed using traditional content analysis. Forty-two African Americans participated. Four themes were identified from focus group discussions: (1) knowledge, attitudes, and beliefs on CRC and CRC screening; (2) reliable sources of cancer education information; (3) cultural factors affecting perspectives on health; and (4) community insights into cancer education. Participant input on the brochure was incorporated in content creation. Engaging African American community members to qualitatively examine cancer prevention has value in improving implementation strategy and planning for behavioral clinical trials.

Gown Goes to Town: Negotiating Mutually Beneficial Relationships between College Students, City Planners, and a Historically Marginalized African-American Neighborhood

University–community partnerships have long sought to develop interventions to empower historically marginalized community members. However, there is limited critical attention to tensions faced when community engaged courses support urban planning initiatives in communities of color. This article explores how three Florida State University planning classes sought to engage the predominantly African-American Griffin Heights community in Tallahassee, Florida. Historically, African-American communities have been marginalized from the planning process, undermining community trust and constraining city planning capacity to effectively engage and plan with African-American community members. In this context, there are opportunities for planning departments with relationships in the African-American community to facilitate more extensive community engagement and urban design processes that interface with broader city planning programs. However, mediating relationships between the community and the city within the context of applied planning classes presents unique challenges. Although city planners have increasingly adopted the language of community engagement, many processes remain inflexible, bureaucratic, and under resourced. Reliance on inexperienced students to step in as community bridges may also limit the effectiveness of community engagement. Thus, while community engaged courses create opportunities to facilitate community empowerment, they also at times risk perpetuating the disenfranchisement of African-American community members in city planning processes.

Understanding African Americans’ Attitudes toward Nonhuman Animals: Historical and Psychological Perspectives

Abstract Historical and current literature is reviewed and social psychological theory is applied to support novel theories about African Americans’ attitudes toward nonhuman animals. Due to psychological reactions stemming from their brutal U.S. history, involving shared suffering with animals, African Americans are theorized to have either negative or positive beliefs about animals. Two studies revealed the latter: that African Americans have positive attitudes toward animals overall, as measured by a new, statistically reliable Attitudes toward Animals Scale. In Study 1, African American university students’ attitudes were somewhat less positive than White students’ attitudes, but in Study 2, older African American community members’ attitudes were more positive than Whites’. This cross-study difference, however, results from less positive White attitudes in Study 2, rather than from any important difference in African Americans’ attitudes across the two samples. The results and unique theoretical framework pave the way for future research on this important issue.

How Do African-American Community Members' Perceptions About Environmental Risks of Breast Cancer Compare with the Current State of the Science?

African-American (AA) women experience higher mortality from breast cancer than any other racial group. Understanding community-held perceptions of environmental contaminants as risk factors for breast cancer can inform the development of tailored prevention and education efforts for improve health outcomes. Six focus groups were conducted with AA participants in two counties in South Carolina, and themes were identified using open and axial coding. Perceived environmental risks for breast cancer most frequently discussed by participants were compared to findings from published systematic reviews. Frequently discussed environmental risk factors by participants were deodorants containing aluminum, plastics, pesticides, and air and water pollution. While perceptions of aluminum and air pollution as risk factors did not align with the state of the science, perceived risk factors of chemicals in plastics and pesticides were found to be in alignment. There is some congruence between perceived environmental risks for breast cancer within the AA community and the current state of the science; however, there is a need to communicate information that reflects current science regarding commonly held misconceptions. Development of evidence-based, clear, and culturally appropriate messaging that reflects the current state of the science is warranted.

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community.

Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ≥65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.

Don't get it twisted: Untangling the psychology of hair discrimination within Black communities.

Systems of oppression have shaped the prejudicial treatment of Black people based on the appearance of their hair, from the era of chattel enslavement to present-day America. Hair discrimination is a social injustice characterized by unfairly regulating and insulting people based on the appearance of their hair. A sampling of 90 African American community members narrated memories of hair discrimination using the guided hair autobiography method. While the hair narratives revealed texture, length, and style were the most common entry points into discriminatory behaviors, color, hair augmentation, density, and product choice were also tools of "othering" within a Eurocentric aesthetic value system. The narratives suggested that men and women experience interpersonal rejections early in their development in both emotionally intimate (at home with family) and public settings (at school with teachers and classmates). Sadness was the most frequently reported emotional response to these rejections. These findings extend the current literature on the psychological significance of hair within Black lives and pleads for policies of hair protection at work, hair-based professional development for teachers in schools, hair-influenced educational curriculum for students, community-based programming in hair care settings, and family interventions during hair combing interactions. (PsycInfo Database Record (c) 2020 APA, all rights reserved).