Sexual Health Research Among Youth Representing Minority Populations: To Waive or Not to Waive Parental Consent

Human immunodeficiency virus (HIV) and other sexually transmitted infections (STIs) significantly burden youth 13–24 years of age in the United States. Directly engaging youth in sexual health research is a public health priority and urgently needed to develop targeted, youth-friendly, and culturally relevant HIV/STI prevention interventions. Controversies arise, however, regarding informed assent and consent, parental permission or consent, and the definition of “child”/“minor” as it relates to medical, legal, and ethical issues. In this article, we describe challenges in the human subjects review processes that were undertaken before beginning an HIV/STI prevention research project with sexually active youth in an urban setting. These findings provide important contextual information to facilitate youth sexual health research and care, and Institutional Review Board approval processes with fewer delays.     

Measuring health status and quality of life in HIV and AIDS

Abstract

HIV can diminish quality of life profoundly, and it is important to understand and measure such effects of HIV and its treatments Although the term quality of life is commonly used, “health status” more accurately describes dimensions that are directly health related and that may be affected by traditional interventions. There is a substantial literature on general health status measurement, and several of the most established measures have been applied or adapted for use in HIV infected populations These measures include the Medical Outcomes Study health ratings, the Quality of Well-Being scale, and the Sickness Impact Profile. Cancer-specific measures such as the EORTC Quality of Life Core Questionnaire and the CARES have also been adapted. In the last three years, health status measures for HIV have been completed by several thousand patients, and have generally proved to be reliable and valid indicators of relevant clinical differences such as disease stage, numbers of symptoms, and other psychometic measures of disability and distress. Health status measures were included in a few completed clinical trials, and are being incorporated in a growing number of antiretroviral and antimicrobial studies. Health status measures provide the best way to evaluate psychosocial interventions directly aimed at improving patients' quality of life. Although challenges remain in further developing health status measures for HIV disease and in applying them, measurement of these concepts has proved to be both technically and operationally feasible. Measures of health status and quality of life can play an important role in the evaluation of clinical treatments in research studies, directing clinical treatment, assessing changes in health care delivery, and planning health care services.     

Increased research literacy to facilitate community ownership of health research in low and middle income countries

ABSTRACT

The expansion of health research to low and middle income countries has increased the likelihood of exploitation and undue influence in economically vulnerable populations. In behavioral research, “reasonable availability”, which was originally developed for biomedical research and advocates for the equitable provision of any product developed during the research process, cannot always prevent exploitation. In such cases and settings, the informed consent process may lack cross-cultural validity and therapeutic misconceptions may arise. This article advocates for a mutual learning framework where international researchers can gain cultural competence while training and empowering local partners, increasing community ownership of health research.     

Knowledge of drug-related health problems among injecting drug users: Implications for the transmission of HIV infection

Abstract

In a project that investigated the HIV-related risk behaviour of injecting drug users, respondents were categorized along dimensions of expertness in HIV/AIDS knowledge and knowledge about drug-related health problems. Knowledge about drug-related health problems was found to be significantly associated with sharing. Better informed respondents were less likely to share injecting equipment and to predict they would share in future. They were more likely to adopt consistent injecting hygiene, seek information about AIDS, and perceive themselves as in control of their lives. No significant relationships were observed between sharing and HIV/AIDS knowledge. The data have relevance for AIDS educational strategies, since knowledge about AIDS and HIV transmission appears to be insufficient to induce behavioural change. Greater emphasis on the health problems that afflict most injectors may be a way of encouraging general harm minimization.     

Aids-risk behavior among homosexual males: The role of attitudes and substance abuse

Abstract

This paper reports the results of a broad survey of homosexual males regarding AIDS-risk behavior. A very high proportion reported both anxiety over possible HIV infection, and a high probability of exposure to HIV. Although over 80% of respondents reported changes in sexual behavior, the frequency of monogamous, stable relationships is unchanged from that found 16 years ago, and 19% reported continued frequent sexual partners. Consistent with “health belief” models, fear of future exposure and perceived control over behavior were strongly related to behavioral change. However, those who felt they had already been exposed were not substantially more likely to decrease current AIDS-risk behavior, which may have important public health ramifications. Alcohol and drug abuse were related to “high risk” behavior, particularly among respondents who are generally motivated to use substances to decrease “tension” or self-monitoring. Thus, using substances to decrease stress may not only relate to substance abuse itself, but to the role of substances in increasing AIDS-risk behavior.     

AIDS as Threat,AIDS as Stigma correlates of AIDS beliefs among the Dutch general public

Abstract

The central question of this article is whether findings about social and cultural correlates of preventive and public attitudes towards AIDS that were found in other western countries are also valid for the Netherlands. Answering this question contributes to the international accumulation of empirical knowledge about attitudes of the general public and might as well be relevant for the international transfer of knowledge about the public into assumptions of information campaigns. Eight hypotheses derived from international literature were tested on data of the 1987 module of “Cultural changes in the Netherlands,” a general opinion survey of the Dutch population (16-80 years old). In line with international research, younger age and more education are correlated with preventive knowledge and social acceptance; however sex and urbanization do not make a difference in the Netherlands As expected, a negative attitude towards homosexuals is related to a lack of acceptance of people suffering from AIDS, support for mandatory screening for HIV, as well as a lack of preventive knowledge. Also in accordance with earlier research, “authoritarian attitudes” are far more important in explaining the public attitudes than beliefs about AIDS as an individual threat.     

Experiences of transgender prisoners and their knowledge,attitudes, and practices regarding sexual behaviors and HIV/STIs: A systematic review

Background: Despite transgender people being more visible in prison systems, research suggests they are at higher risk of experiencing sexual violence compared to other prisoners. Research also suggests that transgender prisoners experience harassment, and physical and sexual assault by fellow prisoners, and prison officers who lack transgender-specific health knowledge. There exist no systematic reviews on the experiences of transgender people in prisons. This review aims to fill this research gap. The following question developed in consultation with transgender, sexual health/HIV and corrective services stakeholders has guided the systematic review: What are transgender and gender-diverse prisoners’ experiences in various prison settings and what are their knowledge, attitudes and practices regarding sexual behaviors and HIV/STIs?

Methods: The review followed the PRISMA guidelines and searches were conducted in four databases for the period of January 2007 to August 2017. Studies were assessed against predetermined inclusion and exclusion criteria. Included studies were peer-reviewed, written in English with online full-text availability and reported data on transgender and gender-diverse prisoner experiences relevant to the research question.

Results: Eleven studies (nine qualitative, one quantitative, one mixed-methods; nine in USA, two in Australia) met the criteria for review. Four studies were of high quality, six were of good/acceptable quality, and one study was of modest quality. Transgender and gender-diverse prisoners reported a range of challenges which included sexual assault, discrimination, stigma, harassment, and mistreatment. Information on their sexual health and HIV/STIs knowledge, attitudes, practices is in short supply. Also, their lack of access to gender-affirming, sexual health/STIs and mental health services is commonplace.

Conclusions: The experiences of transgender prisoners as reported in this review are almost uniformly more difficult than other prisoners. Their “otherness” is used as a weapon against them by fellow prisoners through intimidation and violence (including sexual) and by prison officers through neglect and ignorance.     

Gender as an Obstacle in HIV/AIDS Prevention: Considerations for the Development of HIV/AIDS Prevention Efforts for Male-to-Female Transgenders

SUMMARY

Social discourses regarding gender are responsible for molding people's cognitions, perceptions, behaviors, and interactions with others. Approaching and understanding gender socialization is an important strategy that must be included in the development of HIV/AIDS prevention intervention efforts targeting male-to-female (MTF) transgender people.

This paper represents an effort to identify the influence of gender construction among a group of MTF transgenders in Puerto Rico. Using combined methodology, authors examined results from a questionnaire and in-depth interviews with a convenience sample of MTF transgenders living in the San Juan metropolitan area.

Quantitative analysis demonstrated that this sample is composed of young, unemployed, and undereducated population. Many participated in the sex industry. Participants reported need for basic health and social services and alienation from social networks. Qualitative analysis confirmed their traditional social construction of the “feminine.” Their discourse underlines their need to reinforce their identity by the construction of a female self which undermines their possibilities for negotiating safer sex, as happens to most females in Latino societies.

Social vulnerability, institutional exclusion, and gender construction issues are obstacles for the HIV prevention efforts among these communities.     

Working class homosexuality and HIV/AIDS prevention some recent research from Sydney,Australia

Abstract

Surveys on gay and bisexual men in Sydney and non-metropolitan New South Wales (NSW) indicate uneven patterns of HIV/AIDS knowledge and sexual behaviour change. As a follow-up action-research study, the Class, Homosexuality and AIDS Prevention (CHAP) project pursued audio-recorded, semistructured interviews with men in western Sydney and Nullangardie, a provincial city in NSW, to investigate the relationship between homosexuality and class.

One-to-one interviews with working-class, homosexually active men revealed particular patterns of homosexual initiation and sexual relationships, and a distinct culture being slowly affected by notions of being “gay” and “gay community”. This impact of modern gay life on western Sydney was different from that in the provincial city. More prominent were the effects of class—unemployment, poor education, poverty, and cultural marginalisation—on the experience and elaboration of homosexuality. Group interviews confirmed an experience of “difference” from prominent gay communities, especially Sydney's “Oxford Street” gay quarter. Working-class men offered a critique of gay community-initiated HIV/AIDS prevention strategies, pointing toward different education initiatives involving local social networks.

Case studies are presented to argue the importance of the relation between sexuality and class, and its consequences for HIV/AIDS education.     

Duties When an Anonymous Student Health Survey Finds a Hot Spot of Suicidality

Abstract

Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that included school-level analysis discovered a school with alarmingly prevalent student suicidality. Given confidentiality protocols typical of surveillance, the surveyors were uncertain whether and how to intervene. We searched literature for duties to warn at-risk groups discovered during public health surveillance, but we found no directly applicable guidance or cases. Reasoning by analogy, we conclude that surveyors should contact the school’s leaders to call attention to its outlier status, but public warning is unwarranted. However, such an ad hoc decision to issue a warning, even if only to school leaders, raises significant practical, legal and ethical issues. National public health and education associations should produce guidance that clarifies ethical and legal duties owed to schools and students involved in population health-risk surveillance.     

Health behaviour and attitudes to publicity campaigns for health promotion

Abstract

A sample of 403 members of the public responded to a postal questionnaire concerning their own health behaviour and their attitudes towards health publicity. A principal components analysis of these attitudes revealed three factors, the first of which reflected a tendency to deny the “relevance” of health campaigns. This tendency was higher among those who smoked, took less exercise and had less healthy diets. It is inferred that the direct effects of such campaigns may be impeded by the fact that they appeal most to those people whose own behaviour (from the point of view of health) is in least need of change.     

Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain

Abstract

The purpose of this qualitative study was to explore temporal aspects of chronic pain patients' conceptions of their selves; what they were in the past, how they were functioning at the present and what they thought about their potential and future. In-depth interviews with 21 chronic pain patients were performed and analysed. The main results of the analysis included four higher-order conceptual patterns: “the body and I”, “maintaining the consistency of past self”, the “entrapped self”, and “projected selves, defined by others”. These results are presented in a systems-oriented model illustrating the temporal dynamic between the perceived functioning self, the body and others, such as health care personnel and significant others. The mechanisms of the process of how selves are developing in the chronisation or healing process of pain are finally discussed. A clinical implication of these findings might be that with an enlarged insight of the temporal dynamic and the importance of interactive and social factors in shaping positive possible selves, health care personnel can contribute more effectively in stew-arding the chronic pain patient toward health-promotive ends and a concomitantly higher quality of life.     

The colour of AIDS

Abstract

The African debate on HIV/AIDS has been approached in terms that either foreground its biomedical implications, on the one hand, or its economic challenges, on the other. From the biomedical perspective, HIV/AIDS is a health problem, calling for appropriate behaviour modification strategies; from the economic perspective, however, HIV/AIDS in Africa is viewed as a structural effect of capitalist-induced poverty. This article aims at providing a philosophical basis for understanding the African debate on HIV/AIDS. Its primary contention is that, in order to understand the African experience of HIV/AIDS, we need to overcome the crippling legacy of the modernist-colonialist discourse on Africa, in which “reason” is invariably regarded as the exclusive privilege of the (“white”) Western philosophical “mind”.     

Workplace Violence and Worker Injury in Elderly Care Settings

Abstract

Many incidents of injury, assault, and abuse occur in health care settings. To better examine the situational context of the workplace, this paper examines whether workers providing care to elderly persons experience injuries that are consistent with the “for-profit” and “interpersonal conflict” explanations of elder abuse or neglect. Using data from the Bureau of Labor Statistics, results indicate that nursing home workers and home health care workers have higher rates of workplace injuries resulting from assaults and overexertion than do other workers. The data suggest that there are unique structural and situational factors present in the nursing home, which create a work setting vulnerable to conflict, violence, and elder abuse.     

Psychosocial adjustment along the HIV disease continuum

Abstract

Evidence suggests that certain indices of stage of HIV disease are determinants of psychological distress, although information is lacking on how disease stage impacts on multiple domains of adjustment. The present study aimed: (1) to explore differences among clinical stages of HIV on measures of psychosocial adjustment, and (2) to explore the relationship between indices of psychosocial adjustment to HIV and self-report measures of physical health. Ninety six HIV-infected persons and 33 HIV seronegative comparison group participants were interviewed and completed self-administered scales. Participants were divided into four groups (the independent variable): a comparison group and three HIV groups, representing the three clinical indices of illness stage (asymptomatic, early symptomatic and AIDS). Three subjective health indices included number of HIV-related symptoms, global health rating, and T4 count. The dependent variables included 5 psychosocial adjustment measures. Results indicated that social and instrumental domains of adjustment were significantly associated with both clinical stage and all 3 subjective health indices. Levels of psychological distress were associated with number of physical symptoms and global health rating, but were unrelated to clinical stage and T4 count. Emotional and existential concerns were unrelated to all indices of illness stage.     

Informed Consent Revisited: Japan and the U.S.

Informed consent, decision-making styles and the role of patient–physician relationships are imperative aspects of clinical medicine worldwide. We present the case of a 74-year-old woman afflicted with advanced liver cancer whose attending physician, per request of the family, did not inform her of her true diagnosis. In our analysis, we explore the differences in informed-consent styles between patients who hold an “independent” and “interdependent” construal of the self and then highlight the possible implications maintained by this position in the context of international clinical ethics. Finally, we discuss the need to reassess informed-consent styles suitable to the needs of each patient regardless of whether he or she resides in the United States or in Japan.     

我国公共卫生中的伦理学问题

在公共卫生研究中重点探讨了伦理审查、研究对象选择、知情同意、保护研究对象隐私、对研究对象的适当补偿等方面的伦理学问题;在公共卫生实践中重点探讨了传染病防治、疾病监测、计划免疫、疾病筛查及卫生资源配置领域中的伦理学问题。重视这些问题并参照一定的伦理学原则将有助于解决问题,更好地促进公共卫生事业的发展,促进人群健康。     

Narrating Rape: An Ethnographic Case-Study of Non-Consensual Sexual Debut in Tanzania

ABSTRACT

This article explores the issue of (female) sexual consent in a non-western context by examining narratives of the non-consensual sexual debut in Tanzania within the institutional and cultural tolerance for intimate violence, and the role of the state and media in condoning “proper” gender roles. None of the young women interviewed during a year of ethnographic fieldwork on a college campus were willing to identify this activity as “rape,” though they frequently detailed the ways that aspirations for “respectability” created conditions of vulnerability to ongoing exploitative sexual relationships with older men in positions of authority whom they once trusted. In the socio-sexual premarital landscape of school girls, sex is never given away for free, but may be dispensed with reasonable expectation of return. In an effort to contextualize sexual intimacy and avoid careless use of labels like “prostitution,” feminist public health researchers began to frame sexual encounters in transactional terms. Although not entirely unproblematic, the less stigmatizing terminology reveals more nuanced intimate economies among men and women which include structurally and culturally-derived elements of deprivation, agency, and instrumentality. This article pays careful attention to the narrative of one young women who describes a socio-sexual premarital landscape which almost universally positions male partners as culturally-empowered to proceed with aggressive, even violent, advances toward young women they wish to have sex with, “date,” or marry. Within this context, this article then teases out emerging discourses about structural conditions that reinforce violence.     

Changes in health status after one year for persons at-risk for and with HIV infection

Abstract

Health status is an important component of the evaluation of patient outcome in HIV infection where disease is chronic, progressive, and debilitating. This paper compares patient self-report for 9 dimensions of health status for patients followed in ATHOS (AIDS Time-Oriented Health Outcome Study). We compared changes in functioning after 12 months for 1, 524 patients with varying HIV disease severity: 238 asymptomatic, 447 symptomatic, 441 AIDS, and 398 HIV-negative individuals who are at-risk for infection.

Declines in health status were observed for all HIV-infected persons, including also asymptomatic patients. Individuals with symptomatic disease or AIDS had significant declines (p < 0.001) in physical functioning, energy, global health, pain, and increased disease symptoms, but no significant declines in health distress, cognition, or mental health. Persons with AIDS had greater declines than those with symptomatic disease. All HIV-infected individuals reported significantly fewer hours at work and more disability days than HIV-negative patients from similar risk pools. The adverse impact that HIV infection has on the health status of HIV-positive asymptomatic individuals is striking; HIV-negative individuals are more similar to HIV-positive individuals than to the general population.