Public health and research ethics education: the experience of developing a new cadre of bioethicists at a Ugandan institution.

Research ethics education is critical to developing a culture of responsible conduct of research. Many countries in sub-Saharan Africa (SSA) have a high burden of infectious diseases like HIV and malaria; some, like Uganda, have recurring outbreaks. Coupled with the increase in non-communicable diseases, researchers have access to large populations to test new medications and vaccines. The need to develop multi-level capacity in research ethics in Uganda is still huge, being compounded by the high burden of disease and challenging public health issues. Only a few institutions in the SSA offer graduate training in research ethics, implying that the proposed ideal of each high-volume research ethics committee having at least one member with in-depth training in ethics is far from reality. Finding best practices for comparable situations and training requirements is challenging because there is currently no "gold standard" for teaching research ethics and little published information on curriculum and implementation strategies. The purpose of this paper is to describe a model of research ethics (RE) education as a track in an existing 2-year Master of Public Health (MPH) to provide training for developing specific applied learning skills to address contemporary and emerging needs for biomedical and public health research in a highly disease-burdened country. We describe our five-year experience in successful implementation of the MPH-RE program by the Mbarara University Research Ethics Education Program at Mbarara University of Science and Technology in southwestern Uganda. We used curriculum materials, applications to the program, post-training and external evaluations, and annual reports for this work. This model can be adapted and used elsewhere in developing countries with similar contexts. Establishing an interface between public health and research ethics requires integration of the two early in the delivery of the MPH-RE program to prevent a disconnect in knowledge between research methods provided by the MPH component of the MPH-RE program and for research in ethics that MPH-RE students are expected to perform for their dissertation. Promoting bioethics education, which is multi-disciplinary, in institutions where it is still "foreign" is challenging and necessitates supportive leadership at all institutional levels.

The CARE (Curiosity, Attentiveness, Respect and Responsiveness, and Embodiment) Model: Operationalizing Cultural Humility in the Conduct of Clinical Research.

Cultural competence training has been criticized for reinforcing existing stereotypes, ignoring intersectionality and inadvertently marginalizing some individuals and groups. In contrast, cultural humility offers the possibility of transformational learning, requiring individuals to pursue a lifelong course of self-examination. This approach makes authentic engagement with others possible. We review the premises underlying cultural competence and cultural humility, as well as proposed models for the integration of cultural humility into the clinical context. We propose a new model for the integration of cultural humility into clinical research: CARE, signifying Curiosity, Attentiveness, Respect and Responsiveness, and Embodiment. We conclude that the concept of cultural humility can be integrated into the conduct of clinical research.

Teaching and Practicing Humanism and Empathy through Embodied Engagement.

Concerns have been raised regarding medicine's dehumanization of patients and providers and regarding the need to include, in the medical school curriculum, components that encourage the development of empathy and humanistic practice. This essay suggests that the development of humanistic practice requires attention to not only the cognitive and affective/emotive aspects of humanism, but also to the nurturing of intersubjectivity between the provider and the patient through strategies designed to promote embodied awareness. Several approaches to the development of embodied awareness are discussed, including puppetry pedagogy, drama, and virtual reality applications.

Trust in Medical Research: A Comparative Study among Patients at a Regional Referral Hospital and Community Members in Lira District, Northern Uganda.

Events such as the Tuskegee syphilis study shaped how the public perceives and trusts medical research globally. However, few studies have examined trust in medical research in developing countries. We tested the hypothesis that levels of trust may be lower among community members compared to hospitalized persons in Uganda. We enrolled 296 participants in rural northern Uganda, and 148(50%) were from the community, 192(65%) were female. Mean level of trust for medical research was higher among hospitalized persons compared to community members (p = 0.0001). Previous research participation (p = 0.03), and willingness to participate in future research (p = 0.001) were positively associated with trust. Medical personnel should engage more with the communities in which they practice fostering trust in medical research.

Female migrant sex workers in Moscow: gender and power factors and HIV risk.

This study aimed to build formative knowledge regarding HIV risks in female migrant sex workers in Moscow, focusing on gender and power. This was a collaborative ethnographic study, informed by the theory of gender and power, in which researchers conducted minimally structured interviews with 24 female sex workers who were migrants to Moscow and who provided sexual services to male migrant laborers. Overall, the female migrant sex workers engaged in HIV risk behaviors and practiced inadequate HIV protection with their clients. These behaviors were shaped by gender and power factors in the realms of labor, behavior, and cathexis. In the labor realm, because some female migrants were unable to earn enough money to support their families, they were pushed or pulled into sex work providing service to male migrants. In the behavior realm, many female migrant sex workers were intimidated by their male clients, feared violence, and lacked access to women's health care and prevention. In the cathexis realm, many had a sense of shame, social isolation, emotional distress, and lacked basic HIV knowledge and prevention skills. To prevent HIV transmission requires addressing the gender and power factors that shape HIV/AIDS risks among female migrant sex workers through multilevel intervention strategies.

Trauma exposure, PTSD, and HIV sexual risk behaviors among labor migrants from Tajikistan.

Little is known about the role of trauma and PTSD symptoms in the context of migration-associated HIV risk behaviors. A survey of Tajik married male seasonal labor migrants in Moscow was completed by 200 workers from 4 bazaars and 200 workers from 18 construction sites as part of a mixed method (quantitative and qualitative) study. The mean PC-PTSD score was 1.2 with one-quarter of migrants scoring at or above the cutoff of 3 indicating likely PTSD diagnosis. PC-PTSD score was directly correlated with both direct and indirect trauma exposure, but PC-PTSD score did not predict either HIV sexual risk behaviors or HIV protective behaviors. HIV sexual risk behavior was associated with higher indirect trauma exposure. PC-PTSD score was associated with some indicators of increased caution (e.g., more talking with partners about HIV and condoms; more use of condom when drinking). Qualitative findings were used to illustrate the differences between direct and indirect traumas in terms of HIV sexual risk. The study findings call for future efforts to address labor migrant's mental health needs and to integrate trauma dimensions into HIV prevention.

Ethical issues in a study of bipolar disorder and HIV risk among African-American men who have sex with men: case study in the ethics of mental health research.

African-American men who have sex with men (MSM) are at increased risk of HIV infection, as are individuals with severe mental illness. This study was conducted at the behest of members of the African-American MSM community in Cleveland, Ohio, to assess the co-occurrence of HIV risk and bipolar disorder among African-American MSM. A sample of 125 participants was recruited via flyers and word of mouth at venues used by members of this community. Individuals were assessed for HIV risk and severe mental illness. Various ethical issues were presented, including participant capacity and voluntariness and the risk-benefit ratio. Divergent perspectives of the local institutional review board and the community advisory group with respect to the risks and benefits of participation required reconciliation before the study could proceed. Solutions for the resolution of such conflicts are discussed.

Intimate partner violence victimization and perpetration by Puerto Rican women with severe mental illnesses.

Previous research indicates a higher prevalence of victimization among severely mentally ill women. Few studies have either compared these levels across diagnostic categories or evaluated perpetration by the women. We report qualitative and quantitative findings regarding intimate partner violence perpetrated both against and by a sample of 53 Puerto Rican women diagnosed with major depression, bipolar disorder, or schizophrenia. Interviewers shadowed participants for a period of 2 years. Two-thirds of the women with serious mental illness had histories of victimization. However, 23% of the women also reported histories of violence towards their significant others. This was attributed to various reasons, such as anger, revenge, control, and self-defense. Participants described their personal conceptualization of the violence they received and perpetrated. This has implications for programs designed to prevent family violence, for health care professionals in general, and for psychiatrists, who may be called upon to address future risk of victimization or commission of violence.

GLOBAL PANDEMICS: CONSIDERATIONS OF PUBLIC HEALTH, HUMAN RIGHTS, AND BIOETHICS.

Pandemics threaten the health and lives of peoples worldwide, sometimes requiring the imposition of numerous, restrictive public health measures to diminish their impact and preserve health and life. Such measures, however well-intended, have the potential to contravene human rights and raise significant ethical questions at the individual, community, national, and international levels. This article explores the impact of public health measures adopted in an effort to ameliorate the transmission of COVID-19 on access to care, the right to privacy, protection of marginalized communities from discrimination, and violence against women. The discussion of bioethical concerns focuses on resource allocation, the presumed obligation of healthcare workers to provide care, and governmental obligations in the face of a pandemic. The discussion concludes with a review of lessons learned: the need for a coordinated response across levels of government and the private sector, attention to existing structural inequalities that may exacerbate the impact of the pandemic and/or the public health measures adopted to contain the pandemic, the protection of vulnerable and marginalized persons, a clear delineation of and support for workers deemed to be essential, and the provision of relevant training to law enforcement personnel.

EVANGELICALISM IN UGANDA: IMPLICATIONS FOR PUBLIC HEALTH AND BIOETHICS.

Considered attention is needed to the interplay between evangelical and charismatic religions and legislation in Uganda and their implications for public health, bioethics, and medical education. This manuscript examines the growth of the evangelical and charismatic movements in Uganda during the past several decades, concurrent trends in the formulation and implementation of law and public policy, and implications for the prevention and treatment of sexually transmitted infections, family violence, physician-patient communication, and medical and health education. The article concludes with suggested strategies to address the adverse consequences stemming from the interjection of religious perspectives into the domains of public health, clinical care, and health education.

Impact of psychiatric and social characteristics on HIV sexual risk behavior in Puerto Rican women with severe mental illness.

BACKGROUND: Latinos in the United States have been identified as a high-risk group for depression, anxiety, and substance abuse. HIV/AIDS has disproportionately impacted Latinos. Review findings suggest that HIV-risk behaviors among persons with severe mental illness (SMI) are influenced by a multitude of factors including psychiatric illness, cognitive-behavioral factors, substance use, childhood abuse, and social relationships. OBJECTIVE: To examine the impact of psychiatric and social correlates of HIV sexual risk behavior in Puerto Rican women with SMI. METHODS: Data collected longitudinally (from 2002 to 2005) in semi-structured interviews and from non-continuous participant observation was analyzed using a cross-sectional design. Bivariate associations between predictor variables and sexual risk behaviors were examined using binary and ordinal logistic regression. Linear regression was used to examine the association between significant predictor variables and the total number of risk behaviors the women engaged in during the 6 months prior to baseline. RESULTS: Just over one-third (35.9%) of the study population (N = 53) was diagnosed with bipolar disorder and GAF scores ranged from 30 to 80 with a median score of 60. Participants ranged in age from 18 to 50 years (M = 32.6 ± 8.7), three-fourths reported a history of either sexual or physical abuse or of both in childhood, and one-fourth had abused substances in their lifetimes. Bivariate analyses indicated that psychiatric and social factors were differentially associated with sexual risk behaviors. Multivariate linear regression models showed that suffering from increased severity of psychiatric symptoms and factors and living below the poverty line are predictive of engagement in a greater number of HIV sexual risk behaviors. PRACTICAL IMPLICATIONS: Puerto Rican women with SMI are at high risk for HIV infection and are in need of targeted sexual risk reduction interventions that simultaneously address substance abuse prevention and treatment, childhood abuse, and the indirect effects associated with SMI such as living in poverty. Mental health programs should address risk behavior among adults with SMI in the context of specific symptomatology and comorbidities.

The New Wallet Biopsy and Involuntary Patient Transfers Abroad: How Physicians Can Help Protect Patients.

The Emergency Medical Treatment and Active Labor Act in 1986 was intended to bring an end to incidents of "patient dumping." However, due to the conflation of various federal legislative provisions, hospitals faced with the prospect of long-term unreimbursed care of an immigrant patient, whether legally present in the United States or not, are in some cases having such patients transported to another country. These transfers are often being effectuated without patient consent. After an overview of the flaws in the legal system that have effectively encouraged such patient transfers, this essay uses a clinical case to demonstrate how physicians can collaborate with an interdisciplinary team and with family members to ensure that the best interests of immigrant patients are met. Finally, the essay calls on physicians to advocate for the development of hospital policies and practices that will protect patients from international patient dumping.

Manualized cognitive behavioral group therapy to treat vasomotor symptoms for women diagnosed with mood disorders.

OBJECTIVE: This 6-week, prospective, single-arm study examined the feasibility, acceptability, and preliminary efficacy of cognitive behavioral group therapy in peri- and postmenopausal women with mood disorders (major depression or bipolar) and problematic vasomotor menopausal symptoms. METHODS: 59 participants from an outpatient clinic with mood disorders and problematic vasomotor symptoms were enrolled. The primary outcomes were change from baseline to 6 weeks in Hot Flush Night Sweat Problem Rating, Hot Flash Related Daily Interference, and Quality of Life. Secondary outcomes were change in Hot Flush Frequency, depression, anxiety, perceived stress, anhedonia, beliefs and cognitive appraisals of menopause. ClinicalTrials.gov [identifier: NCT02860910]. RESULTS: On the Hot Flush Night Sweat Problem Rating, 39.3% improved 2 or more points, which was clinically relevant. Changes in Quality of Life (p = .001) and the Hot Flash Related Daily Interference Scale were also significant (p < .001). Significant results were found on most secondary outcomes (hot flush frequency on the Hot Flush Daily Diary, depression, anxiety, perceived stress (p < .001) and anhedonia (p = .001). One of six subscales (control subscale) on the cognitive appraisal of menopause significantly improved (p < .001). Three subscales on the beliefs measure did not change significantly (p = .05, p = .91, and p = .14). Six-week study retention was robust (N = 55, 93%) and 94.2% of individuals reported that cognitive behavioral group therapy sessions were useful. CONCLUSION: This exploratory study suggests that CBGT is acceptable, feasible, and efficacious in women with mood disorders and problematic menopause vasomotor symptoms. Further studies are needed using more rigorous and controlled methods.

Teaching Vulnerability in Research: A Study of Approaches Utilized by a Sample of Research Ethics Training Programs.

This article reports the outcomes of qualitative research on the teaching of "vulnerability in research" undertaken with principal investigators of international bioethics training programs funded by the Fogarty International Center of the National Institutes of Health (NIH) of the United States. To properly contextualize this research, we begin with an overview of the various ways in which vulnerability has been conceptualized both by writers and by ethical guidance from low-, middle-, and high-income countries. We conclude with some preliminary suggestions for best practice and recommendations for further research. To the best of our knowledge, this is the first time research of this kind has been carried out.

Active Learning on Center Stage: Theater as a Tool for Medical Education.

Introduction: Knowledge and skill development related to communication must incorporate both affective and behavioral components, which are often difficult to deliver in a learning activity. Using theater techniques and principles can provide medical educators with tools to teach communication concepts. Methods: This 75-minute faculty development workshop presents a variety of techniques from theater and adapts them for use in medical education. Using examples related to diversity and inclusion, this session addresses general educational and theater principles, role-play, sociodrama, applied improvisation, and practical aspects of involving theater partners. The session materials include a PowerPoint presentation with facilitator notes, interactive activities to demonstrate each modality, and an evaluation. The sessions can be extended to longer formats as needed. Results: Forty-five participants at Learn Serve Lead 2016: The AAMC Annual Meeting attended the 75-minute session. We emailed 32 participants 5 months after the conference, and eight responded. Participants reported that their confidence level in using theater techniques as a tool for medical education increased from low-to-medium confidence presession to high confidence postsession. All survey respondents who were actively teaching said they had made changes to their teaching based on the workshop. All commented that they appreciated the active learning in the session. Many indicated they would appreciate video or other follow-up resources. Discussion: Principles and techniques from theater are effective tools to convey difficult-to-teach concepts related to communication. This workshop presents tools to implement activities in teaching these difficult concepts.

Incidence and prevalence of intimate partner violence by and against women with severe mental illness.

Although a significant body of research has focused on the victimization of severely mentally ill persons and their perpetration of violence against others, relatively little attention has specifically addressed partner violence inflicted against and committed by severely mentally ill women. We conducted a review of the existing research to examine these issues. The published literature suggests that severely mentally ill women are at increased risk of being victimized by their partners and that a high proportion of severely mentally ill individuals may assault their intimate partners. Directions for future research and suggestions for clinical practice are presented.

Research issues for improving treatment of U.S. Hispanics with persistent mental disorders.

This article reports on the outcome of an expert consensus meeting in August 2005 sponsored by the National Institute of Mental Health, which assembled 15 senior researchers with a background in treatment and services research with the Hispanic population. The purpose of the workshop was to identify research issues most pertinent for improving quality and effectiveness of treatment for Hispanics experiencing persistent mental disorders, defined as psychiatric syndromes that are of sufficient severity and duration to cause long-term impairment in social and occupational functioning and significant disability. The spectrum of ideas and recommendations advanced at the one-day meeting was wide and overlapping; therefore, the rich body of material was subsequently organized into five topics: diagnosis, quality of care and culturally appropriate services, psychosocial intervention development, psychopharmacologic interventions, and access to care. Although the authors recognize that the review was broad and the agenda presented is ambitious and in many instances generalizes to priority areas in overall mental health services and treatment research, the recommendations are intended to stimulate research for addressing the unique problems and research deficits that affect Hispanics with persistent mental disorders.

Linking the Heart and the Head: Humanism and Professionalism in Medical Education and Practice.

BACKGROUND: This paper articulates a practical interpretive framework for understanding humanism in medicine through the lens of how it is taught and learned. Beginning with a search for key tensions and relevant insights in the literature on humanism in health professions education, we synthesized a conceptual model designed to foster reflection and action to realize humanistic principles in medical education and practice. The resulting model centers on the interaction between the heart and the head. The heart represents the emotive domains of empathy, compassion, and connectedness. The head represents the cognitive domains of knowledge, attitudes, and beliefs. The cognitive domains often are associated with professionalism, and the emotive domains with humanism, but it is the connection between the two that is vital to humanistic education and practice. The connection between the heart and the head is nurtured by critical reflection and conscious awareness. Four provinces of experience nurture humanism: (1) personal reflection, (2) action, (3) system support, and (4) collective reflection. These domains represent potential levers for developing humanism. Critical reflection and conscious awareness between the heart and head through personal reflection, individual and collective behavior, and supportive systems has potential to foster humanistic development toward healing and health.

Community health advocacy.

Competing health needs of diverse populations and ever shrinking resources available to support these needs often serve as the impetus for the initiation of advocacy efforts to improve community health. However, perceptions of what constitutes a community differ, as do approaches to advocacy itself. This glossary addresses five key questions: (1) What is advocacy?; (2) What is meant by community?; (3) What are the different approaches to community health advocacy?; (4) How are priorities established in the face of competing health advocacy goals?; (5) How can community health advocacy efforts be evaluated?; and (6) What challenges may be encountered in advocating for community health? Each of these issues could serve as the basis for a text on that subject alone. Accordingly, this article is not meant to be comprehensive text on these issues but is, instead, intended to highlight key foundational issues. And, although advocacy efforts can be conducted by individuals, this article focuses specifically on advocacy efforts of communities, however they may be defined and characterised.

Caring for an adult child with cognitive disabilities: meeting the dual needs of an adult and child.

A significant proportion of families in the United States provide care for an adult child who has a cognitive impairment. Significant issues may arise in the context of providing this care, including medical concerns, the nature of the relationship between the adult cognitively impaired child and his or her parents, safety concerns in the home, difficulties that the adult child may face in the community, and employment-related issues. We focus, as well on the need to plan for the future through the execution of powers of attorney, living wills, and accessing government benefits for the individual Caregiver stress is also a concern. We provide various alternatives for the management of these issues.