Embracing an "African Ethos" to facilitate African immigrants participation in medical genetics and genomics research.

BACKGROUND: Limited published research exists on perceptions and potentials for black African immigrants' participation in medical genetics and genomics research. PURPOSE: This study explores the inclination and disinclination of African immigrants to be involved in genetics and genomics research. METHODS: In-depth qualitative interviews were employed in which a sample of black African immigrants 18 years and older (n = 34) were interviewed. DISCUSSION: Barriers included contrary beliefs and customs about disease and the human body that differs from Western conceptions, and lack of genuine connection to the health care system. Facilitators included promotion of an "African ethos," wherein Africans unite with one another in a communal extension of self and robust community involvement across the life span of genetic studies. CONCLUSION: It is important for researchers and genetic counselors to understand the sociocultural underpinnings of African immigrants about genetics and genomics research as an initial step to encouraging their participation.

Life With HIV: Insights from HIV-infected Women in Cameroon, Central Africa.

Women in Cameroon are disproportionately burdened by HIV illness. Understanding the impact HIV has on women is essential for developing interventions to enhance their quality of life. Our aim was to explore and provide an in-depth understanding of the daily experiences of a sample of women living with HIV in Cameroon. Qualitative semi-structured in-depth interviews were conducted with women (N = 30) from the northwest region of Cameroon who self-reported being infected with HIV. Participants shared that they had multiple challenges in their daily experiences living with HIV. The themes that emerged included: (a) receiving an HIV diagnosis is traumatic, (b) living with HIV is a constant struggle, (c) limited resources and support cause problems, and (d) stigma and powerlessness exacerbate the impact of HIV. We provide insight into the daily experiences of HIV-infected women in Cameroon. Implications for improving health care and social services to women living with HIV in Cameroon are suggested.

The Ebola epidemic in West Africa: challenges, opportunities, and policy priority areas.

The ongoing Ebola epidemic in West Africa has drawn attention to global health inequalities, in particular the inadequacies of health care systems in sub-Saharan African countries for appropriately managing and containing infectious diseases. The purpose of this article is to examine the sociopolitical and economic conditions that created the environment for the Ebola epidemic to occur, identify challenges to and opportunities for the prevention and control of Ebola and future outbreaks, and discuss policy recommendations and priority areas for addressing the Ebola epidemic and future outbreaks in West Africa. Articles in peer-reviewed journals on health system reforms in developing countries and periodicals of international organizations were used to gather the overview reported in this article. We identify individual, structural, and community challenges that must be addressed in an effort to reduce the spread of Ebola in West Africa. The Ebola epidemic in West Africa underscores the need for the overhaul and transformation of African health care systems to build the capacity in these countries to address infectious diseases. Public-private partnerships for investment in developing countries' health care systems that involve the international community are critical in addressing the current Ebola epidemic and future outbreaks.

Exploring future nurses' attitudes and beliefs related to childhood overweight.

Millions of American children enjoy good health due to public health interventions addressing childhood-related diseases; however, such gains are being compromised due to the increasing proportion of overweight or obese children. Nurses are positioned to play a pivotal role in addressing the overweight and obesity epidemic among children. This cross-sectional study examined the attitudes and beliefs of undergraduate prenursing students and students in the clinical nursing major about children who are overweight or obese. A secondary aim was to examine whether there are differences or similarities in attitudes and beliefs about children who are overweight or obese between prenursing students and students in the clinical nursing major. Findings indicated that undergraduate prenursing students and students in the clinical nursing major have negative perceptions of overweight children. However, negative perspectives varied between the prenursing and clinical nursing major students on overweight children in relation to perceptions of causative factors for children being overweight and their subsequent quality of life.

Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study.

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they "had never been asked." Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Reflections and perspectives of African-American community leaders regarding genetics and genomics research: sentiment and wisdom of Sankofa.

Advances in genetic and genomic research are shifting the typical disease timeline. For those afflicted by disease and for population groups known to experience excess disease-related morbidity and mortality, the ability to use genetics and genomics to predict an individuals' predisposition for developing a disease and/or to anticipate an individual's response to treatments holds tremendous promise. Over the past two decades several public and private institutions within the United States have been established for the purpose of collecting and storing biological specimens for the purpose of conducting genetic/genomic research. Multiple reports indicate that the involvement of racial/ethnic minority participants in these bio-repositories is limited. Little is known about the willingness of African-Americans, one of the largest and most vulnerable racial/ethnic population groups, to participate in genetic research, genomic research, and to contribute biological specimens to bio-repositories. An exploratory study was undertaken using principles of community engagement and community-based participatory research to examine the perspectives of leaders within the African-American community about participation in genetics research, genomics research, and bio-banking. Semi-structured focus groups with twenty-one African-American community leaders were the primary means of gathering the study data. Reflections and commentary of the community leaders were interspersed with sentiments of "Sankofa." The emergent themes, health-related disparities, historical injustices in medical research, the promise of genetic and genomic research, and genetics/genomic research engagement, implicated the importance of conducting genetics/genomics research in the context of the community interdependent with efforts to address determinants of health and health disparities.

Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives.

There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

Black African immigrant community leaders' views on participation in genomics research and DNA biobanking.

BACKGROUND: The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all. PURPOSE: The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation. METHODS: As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities. FINDINGS/DISCUSSION: Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise. CONCLUSION: To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy.

Relationship of symptoms, perceived health, and stigma with quality of life among urban HIV-infected African American men.

OBJECTIVES: To explore the relationship of symptom prevalence and intensity, perceptions of health, and stigma on quality of life (QOL) among HIV-infected African American men. DESIGN: Cross-sectional correlational descriptive study. SAMPLES: The sample consisted of HIV-infected African American men (N=55), all urban, age range 23-66 years (M=48.84, SD=7.67), average length of time since HIV diagnosis 10.79 years (SD=6.4). MEASUREMENTS: A questionnaire consisting of 5 instruments was used: (a) sociodemographic characteristics, (b) Holzemer Signs and Symptom Checklist for HIV, (c) perceptions of health, (d) Berger HIV Stigma Scale, and (e) Holmes HIV/AIDS-Targeted Quality of Life Scale. RESULTS: Prevalent symptoms were fatigue (98%), fear (92.7%), shortness of breath (92.7%), gastrointestinal upset (85.5%), numbness (80.0%), and headache (76.4%). Symptoms with the highest intensity were gastrointestinal upset, body changes, fear, and fatigue. Symptom intensity was significantly associated with the measures of stigma and QOL. CONCLUSIONS: The results underscore the importance of incorporating a holistic view of the relationship of symptoms with QOL for HIV-infected African American men. Without efforts to ameliorate stigmatizing effects, however, nurses may be falling short in helping individual African American men with HIV infection achieve a better QOL.

Challenges and opportunities for HIV prevention and care: insights from focus groups of HIV-infected African American men.

Given the inordinate burden of HIV illness borne by African American men, investigations of HIV prevention and care in this population are urgently needed. In this qualitative study, a sample of 20 HIV-infected African American men participated in two focus groups in which they exchanged experiences and ideas about living with HIV. They shared details about how they were personally impacted by HIV, and together they constructed a perspective on the larger societal context in which the HIV infection rate among African American men continues unabated. The men focused on growing complacency about HIV/AIDS in the United States, underfunding of supports and services, stigmas operative in African American communities, and differential care based on race, gender, and diagnosis. They saw opportunity in personal strategies that help individual men infected with HIV to take a more empowered stance to deal with the disease and improve their health but looked for changes undertaken by African Americans at the community level to make a real difference in the epidemic. Their vision included enhanced support for HIV prevention and care from influential community institutions like Black churches, more open dialogue about drugs and sexual behavior, and capacity-building for families whose members are HIV-infected or at risk for HIV.

Constrained but not determined by stigma: resistance by African American women living with HIV.

BACKGROUND: HIV stigma is widely regarded as a major obstacle to effective HIV prevention, risk reduction, testing, and treatment. Research is urgently needed to anticipate, understand, and combat HIV stigma in the African American cultural context because African Americans have the highest HIV incidence, HIV/AIDS prevalence, and HIV mortality. PURPOSE: The purpose of this analysis was to explore African American women's narratives of living with HIV to understand how they experienced and responded to HIV stigma. METHOD: Twenty-nine HIV-infected African American women participated in this longitudinal qualitative study. Each narrated her life since HIV diagnosis in ten open-ended interviews conducted over the course of two years. A multi-staged narrative analysis was used. FINDINGS: HIV stigma, which these African American women experienced on multiple levels, manifested internally as existential despair, socially as shunning and callousness, and institutionally as disregard. While participants were constrained by this multi-layered hegemonic cultural negativity about HIV, they refused to be determined by it. Their stories demonstrate how they resisted stigma. Over time, by enlisting support, facing the illness, disclosing only at strategic times, redefining stigma as ignorance, and becoming advocates, they were able to challenge and oppose the shame and discredit that HIV infection had brought into their lives. CONCLUSION: The elements of stigma resistance described in this study may be starting points for designing participatory interventions for and with African American women living with HIV.

Nursing contributions to the elimination of health disparities among African-Americans: review and critique of a decade of research.

The excessive burden of disease experienced by African-Americans has long been described by authorities in the public, private, and professional sector as a national health concern. Several reports have been published in the peer-reviewed literature that describe the outcomes of nurse-directed studies aimed at addressing the factors associated with the disparities experienced by African-Americans and these reports were also aimed toward the design of interventions to reduce and/or eliminate them. However, little is known about the scope, quality, and impact of these efforts relative to the promotion of health and the prevention of disease among African-Americans. This report presents the results of a review, analysis, and critique of reports of outcomes of nursing research aimed toward reducing health-related disparities among African-Americans. These reports were described in a selected group of African-American nursing organizations and journals dedicated to providing a forum for the discussion of issues focused on cultural diversity, transcultural nursing, and multicultural health care issues. Included among the journals were the Journal of the National Black Nurses Association, the Journal of the Association of Black Nursing Faculty, the Journal of Chi Eta Phi Sorority, the Journal of Cultural Diversity, the Journal of Transcultural Nursing, and the Journal of Multicultural Nursing and Health. Results of the review will be reported in three parts, the first of which was reported in an earlier edition (Journal of National Black Nurses Association, Volume 15, No. 1) and the second part of which is reported here. The third part will be reported in a future issue of the Journal of National Black Nurses Association. The results revealed that this body of nursing research provides the profession with a broad base of knowledge and insights. This knowledge is relative to the individual and familial impact of cardiovascular disease, cancer, diabetes, HIV/AIDS, mental health and mental illness, and Sickle Cell Disease within the African-American community. Knowledge and insights relative to the concerns and needs of childbearing, parenting the elderly caregivers and caregiving in African-American population groups is essential if health-care disparities are to be truly eliminated. This review, analysis, and critique also revealed several gaps and limitations within this body of nursing research.

Nursing contributions to the elimination of health disparities among African-Americans: review and critique of a decade of research--Part III.

The excessive burden of disease experienced by African-Americans has long been described by authorities in the public, private, and professional sector as a national health concern. Several reports have been published in the peer-reviewed literature that describe the outcomes of nurse-directed studies aimed at addressing the factors associated with the disparities experienced by African-Americans and these reports were also aimed toward the design of interventions to reduce and/or eliminate them. However, little is known about the scope, quality, and impact of these efforts relative to the promotion of health and the prevention of disease among African-American population groups. This report presents the results of a review, analysis, and critique of reports of outcomes of nursing research aimed toward reducing health-related disparities among African-Americans. These reports were described in a selected group of African-American nursing organizations and journals dedicated to providing a forum for the discussion of issues focused on cultural diversity, transcultural nursing, and multicultural health care issues. Included among the journals were the Journal of the National Black Nurses Association, the Journal of the Association of Black Nursing Faculty, the Journal of Chi Eta Phi Sorority, the Journal of Cultural Diversity, the Journal of Transcultural Nursing, and the Journal of Multicultural Nursing and Health. Results of the review will be reported in three parts. The first part was reported in an earlier edition (Journal of National Black Nurses Association, Volume 15, No. 1), the second part was reported in Volume 16, No 1, of the Journal of National Black Nurses Association, and the third part is reported here. The results of this critique revealed that this body of nursing research provides the profession with a broad base of knowledge and insights. This knowledge is relative to the individual and familial impact of cardiovascular disease, cancer, diabetes, HIV/AIDS, mental health and mental illness, and sickle cell disease within the African-American community. Knowledge and insights relative to the concerns and needs of childbearing, parenting, the elderly caregivers and care giving in African-American population groups is essential if health care disparities are to be truly eliminated. This review, analysis, and critique also revealed several gaps and limitations within this body of nursing research.

Patterns of sexual behaviour among secondary school students in Swaziland, southern Africa.

Among the many sub-Saharan African countries hardest hit by HIV/AIDS is the Kingdom of Swaziland. In an effort to reduce the spread of HIV, young people are an important group to reach with prevention messages. However, before developing such programmes, it is essential to understand young people's sexual risk behaviours. Students (n=941) from four coeducational secondary schools in Swaziland participated in a cross-sectional survey of sexual behaviours. Results indicate that considerable proportions of young people in this study were sexually experienced, irrespective of gender. Findings also suggest unacceptable high levels of sexual coercion, irrespective of age or gender. While boys may be less likely than girls to experience sexual coercion, being a male in this setting was not a protective factor. No significant differences were found on these variables in relation to location of the schools (rural vs. urban). Implications for developing and implementing HIV prevention programmes are suggested.

Nursing contributions to the elimination of health disparities among African-Americans: review and critique of a decade of research.

The excessive burden of disease experienced by African-Americans has long been described by authorities in the public, private, and professional sector as a national health concern. Several reports have been published in the peer-reviewed literature that describe the outcomes of nurse-directed studies aimed at addressing the factors associated with the disparities experienced by African-Americans and these reports were also aimed toward the design of interventions to reduce and/or eliminate them. However, little is known about the scope, quality, and impact of these efforts relative to the promotion of health and the prevention of disease among African-American population groups. This report presents the results of a review, analysis, and critique of reports of outcomes of nursing research aimed toward reducing health-related disparities among African-Americans. These reports were described in a selected group of African-American nursing organizations and journals dedicated to providing a fonrum for the discussion of issues focused on cultual diversity, transcultural nursing, and multicultural health care issues. Included among the journals were the Journal of the National Black Nurses Association, the Journal of the Association of Black Nursing Faculty, the Journal of Chi Eta Phi Sorority, the Journal of Cultural Diversity, the Journal of Transcultural Nursing, and the Journal of Multicultural Nursing and Health. Results of the review, reported in two parts, the later of which will be reported in an upcoming edition, revealed that this body of nursing research provides the profession with a broad base of knowledge and insights. This knowledge is relative to the individual and familial impact of cardiovascular disease, cancer diabetes, HIV/AIDS, mental health and mental illness, and sickle cell disease within the African-American community. Knowledge and insights relative to the concerns and needs of childbearing, parenting, the elderly, caregivers and caregiving in African-American population groups is essential if health care disparities are to be truly eliminated. This review, analysis, and critique also revealed several gaps and limitations within this body of nursing research.

The nurse-community health advocate team for urban immigrant primary health care.

PURPOSE: To describe: (a) development and implementation of an urban outreach health program for Latino immigrants; (b) nurse-community-health advocate (CHA) partnership roles in primary health care delivery, and (c) lessons learned from these activities over 7 years in urban community settings. METHODS: Descriptive study of a community-based health project in a large Midwestern American city. Information was gathered from participants and staff, from observing staff, and from a variety of sources to describe the program and its individual, family, and community effects. FINDINGS: Major findings pertain to the project team's ability to address the health promotion needs of Latino immigrant families and to successfully incorporate CHAs in planning and implementing the program. CHAs were a "bridge" between health programs and the community, promoting cultural sensitivity. CHAs and nurses provided a range of services including health education and promotion, outreach through home visits, assessment of family needs for referrals to appropriate resources, and follow-up support. CONCLUSIONS: The nurse-CHA team was an effective strategy for promoting Latino immigrant families' access to needed health care. This framework allowed for flexibility in assisting clients of different cultural backgrounds to obtain appropriate health care.

Minority international research training program: global collaboration in nursing research.

In the current century, nurses, along with other health professionals, require preparation for their roles in international health. For faculty and students to practice and learn in this global community, they also will want to have added knowledge of economics, business, and public policy. To gain an immersion experience in global health, nursing faculty and students will need to spend time abroad collaborating with nursing colleagues in other countries. This report describes an academic-research training program (Minority International Research Program [MIRT]) established 7 years ago to enhance the international health experience of minority nursing students. Qualified undergraduate and graduate nursing students are recruited and paired with faculty mentors to conduct short-term research abroad for a period of 10 to 14 weeks. The purpose of international research experiences for minority nursing students is to develop leaders in nursing science and to increase collaboration in the resolution of global health issues. To date, 26 undergraduate students, 22 graduate students, 6 postdoctoral trainees, and 11 faculty mentors have participated and completed the program through research immersion experiences in 9 countries. The program is described in terms of its strengths, challenges, and lessons learned, as well as opportunities for future activities.

Primary and preferred sources for HIV/AIDS and sexual risk behavior information among adolescents in Swaziland, Southern Africa.

The HIV/AIDS epidemic in Sub-Saharan Africa poses a massive diffusion and persuasion challenge for health professionals. Individuals working with adolescents to prevent the spread of HIV/AIDS must gain an understanding of adolescent's preference in obtaining information about HIV/AIDS and sexual behaviors. This study describes the primary and preferred sources of information regarding HIV/AIDS and sexual risk behavior in relation to several socio-demographic variables (n=941) in Swaziland, Southern Africa. Although print/broadcast media was the primary source for HIV/AIDS and sexual risk behavior information for the students, most participants preferred information from the healthcare workers. This study suggests a greater role for healthcare providers in providing HIV/AIDS and sexual risk information.

Cultural and gender issues related to HIV/AIDS prevention in rural Swaziland: a focus group analysis.

HIV/AIDS is a serious public health problem in Swaziland, a small land-locked Southern African country. The epidemic affects all subpopulations, but women are increasingly at risk for contracting the disease. Focus groups were conducted in a rural area to obtain qualitative information on the rural dimensions of HIV/AIDS, vulnerability to HIV/AIDS, and sociocultural factors influencing the spread of AIDS. Five themes were identified from analyses of the focus groups that are relevant in developing an AIDS prevention program for this population in Swaziland. Implications for future research and health care practice focus on gender-sensitive cultural research (e.g., women and men's roles and responsibilities in rural Swaziland society) and how social, economic, and cultural factors impact the spread of AIDS. Recommendations include reorienting and allocating resources for health, education, and social services to address the relative neglect of rural areas and strengthening policies and programs to achieve the equal participation of all women in all aspects of society's decisions. Specifically, policies related to economic and food security should result in programs to improve local access by women to all resources.