Disclosure Of Human Immunodeficiency Virus Status Research Articles

Influence of gender on loss to follow-up in a large HIV treatment programme in western Kenya

To determine the incidence of loss to follow-up in a treatment programme for people living with human immunodeficiency virus (HIV) infection in Kenya and to investigate how loss to follow-up is affected by gender. Between November 2001 and November 2007, 50 275 HIV-positive individuals aged ≥ 14 years (69% female; median age: 36.2 years) were enrolled in the study. An individual was lost to follow-up when absent from the HIV treatment clinic for > 3months if on combination antiretroviral therapy (cART) or for > 6months if not. The incidence of loss to follow-up was calculated using Kaplan-Meier methods and factors associated with loss to follow-up were identified by logistic and Cox multivariate regression analysis. Overall, 8% of individuals attended no follow-up visits, and 54% of them were lost to follow-up. The overall incidence of loss to follow-up was 25.1 per 100 person-years. Among the 92% who attended at least one follow-up visit, the incidence of loss to follow-up before and after starting cART was 27.2 and 14.0 per 100 person-years, respectively. Baseline factors associated with loss to follow-up included younger age, a long travel time to the clinic, patient disclosure of positive HIV status, high CD4+ lymphocyte count, advanced-stage HIV disease, and rural clinic location. Men were at an increased risk overall and before and after starting cART. The risk of being lost to follow-up was high, particularly before starting cART. Men were more likely to become lost to follow-up, even after adjusting for baseline sociodemographic and clinical characteristics. Interventions designed for men and women separately could improve retention.

Disclosure of HIV Status: Experiences and Perceptions of Persons Living With HIV/AIDS and Nurses Involved in Their Care in Africa

Most people with HIV have disclosed their status to someone, often with mixed results. Most health literature seems to favor disclosure by persons living with acquired immunodeficiency syndrome (AIDS), but it could be that to disclose is not always a good thing. We used a descriptive, qualitative research design to explore the experience of human immunodeficiency virus (HIV) and AIDS stigma of people living with HIV or AIDS and nurses involved in their care in Africa. Focus group discussions were held with respondents. We asked them to relate incidents that they themselves observed, and those that they themselves experienced in the community and in families. Thirty-nine focus groups were conducted in five countries in both urban and rural settings. This article is limited to a discussion of data related to the theme of disclosure only. The sub-themes of disclosure were experiences before the disclosure, the process of disclosure, and responses during and after disclosure.

Unprotected Sex Among HIV-Positive Injection Drug-Using Women and Their Serodiscordant Male Partners

We investigated the characteristics of human immunodeficiency virus (HIV)-positive injection drug-using women who reported unprotected vaginal and/or anal sex with HIV-negative or unknown serostatus (serodiscordant) male partners. Of 426 female study participants, 370 were sexually active. Of these women, 39% (144/370) and 40% (148/370) reported vaginal and/or anal sex with serodiscordant main and casual partners, respectively. Sixty percent of women inconsistently used condoms with their serodiscordant main partners, whereas 53% did so with casual partners. In multivariate analysis, during sex with main partners, inconsistent condom users were less likely to feel confident about achieving safe sex (self-efficacy), personal responsibility for limiting HIV transmission, and that their partner supported safe sex. Inconsistent condom use was also more likely among women who held negative beliefs about condoms and in couplings without mutual disclosure of HIV status. Regarding sex with casual partners, inconsistent condom users were more likely to experience psychologic distress, engage in sex trading, but they were less likely to feel confident about achieving safe sex. These findings suggest that there are widespread opportunities for the sexual transmission of HIV from drug-using women to HIV-uninfected men, and that reasons vary by type of partnership. Multifaceted interventions that address personal, dyadic, and addiction problems are needed for HIV-positive injection drug-using women.

HIV status disclosure and partner discordance: A public health dilemma

Before the advent of human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS), illnesses generally fitted into Parsons’ sick role model, defined as a form of deviant behaviour in which the patient has motivation to become and remain ill.1 Ross2 noted that for stigma-associated conditions like sexually transmitted diseases, classic models of illness behaviour did not apply. Observed patterns of HIV status disclosure and therefore assumption of the sick role tend to support Ross’s view. Studies conducted on the subject indicate that HIV status disclosure is not a random event. A study on parents’ disclosure patterns to their children revealed that mothers disclosed more often to their daughters than their sons. The study further established that disclosure was significantly more common among parents with poor health and stressful live events.3 HIV status disclosure is complicated further by the phenomenon of partner discordance, which makes disclosure to sexual partners much more difficult. In a poster exhibited at the 39th Annual Meeting of the Infectious Disease Society of America, a strong case was made for HIV status disclosure to sexual partners. It was argued that sexual partners of HIV-infected individuals are a population at high risk for HIV acquisition. Any efforts to prevent transmission within that specific population will have a much quicker ‘pay-off’ than anything that may be done within the general public, and part of these efforts should involve HIV status disclosure to sexual partners. The current paper reports the results of a study conducted in Houston, Texas, USA on a sample of 80 HIV-positive pregnant women. The study assessed HIV status disclosure patterns, partner’s HIV status, patterns of social support breakdown following HIV status disclosure, and patterns of social support breakdown relative to partner’s HIV status.

HIV epidemic and infant feeding in South Africa

To explore how the human immunodeficiency virus (HIV) epidemic has affected the infant-feeding experiences of HIV-positive mothers in South Africa. This was a qualitative interview study within a prospective cohort study. We purposively selected a subsample of 40 women from a larger cohort of 650 HIV-positive mothers for in-depth interviews. The HIV epidemic has changed the context in which infant-feeding choices are made and implemented. HIV-positive mothers in this study -- who were predominantly young, single and unemployed -- were struggling to protect their decision-making autonomy. Uncertainty about the safety of breastfeeding has increased the power and influence of health workers, who now act as gatekeepers to not only this new knowledge but also to essential resources such as formula milk. Fear of disclosure of HIV status and stigma has also weakened the ability of mothers to resist entrenched family and community norms that encourage early introduction of fluids and foods and that question non-breastfeeding. Women who chose to exclusively formula feed had difficulties accessing formula milk because of inflexible policies and a lack of supplies at clinics. Limited postpartum support led to social isolation and mothers doubting their ability to care for their children. The infant-feeding experiences of HIV-positive mothers have serious implications for the operational effectiveness of programmes that aim to prevent HIV transmission from mother to child. A better understanding of how HIV is changing infant-feeding practices can inform the development of interventions to improve infant-feeding counselling and postpartum support.

Custody plans among parents living with human immunodeficiency virus infection.

To describe and to examine predictors of making custody plans by parents living with the human immunodeficiency virus (HIV) infection. The custody plans of 296 parents living with HIV for 708 children were examined over 5 years, with at least 85% reassessed annually. Over time, increasing numbers of parents living with HIV made custody plans for all of their children (23.8%-52.8%), typically with extended family members. However, parents change plans frequently, and 44.8% of parents living with HIV died without custody plans. Custody planning was less likely in families with only adolescent children, when parents had a partner, or when parents were depressed. Parents' disclosure of HIV status, physical health status, substance use, and ethnicity were unrelated to making custody plans. Custody planning is a slow and unstable process in families affected by HIV.

Children of HIV-Positive Drug-Using Parents

Associations between human immunodeficiency virus (HIV) status of injection drug users (IDUs) and their children's psychopathology and social functioning were examined. Parents (N = 61) were drawn from an ongoing longitudinal study of inner city, primarily African-American IDUs. Children (N = 79) were 6 to 11 years of age, currently living with the IDU parent. Parental variables included HIV status, apparent and inapparent HIV infection (with HIV-related medical symptoms and/or disclosure of parental HIV status to children; with neither medical symptoms nor disclosure, respectively), presence of HIV-related medical symptoms, HIV disclosure status to each child, and depression as ascertained by the Center for Epidemiologic Studies-Depression. Children's outcomes (competencies, psychiatric symptoms, and disorders) were assessed with the Child Behavior Checklist and the Schedule for Affective Disorders and Schizophrenia for School-Age Children. Children of IDU parents exhibited high rates of psychopathology. Parental HIV infection per se had no discernible impact on children's outcomes. The apparent HIV infection of a parent was associated with an eightfold increase (odds ratio 7.80; 95% confidence interval 1.56-39.09) in the prevalence of disruptive behavior disorders (compared with children of HIV-negative parents). Parental depression was associated with a threefold increase in the prevalence of children's disruptive behavior disorders (odds ratio 3.49, 95% confidence interval 1.11-11.04). Parental HIV status per se does not seem to have a differential impact on the affected children. The apparent HIV infection of a parent may be associated with children's externalizing symptoms and disorders.

Disclosure of HIV status: cultural issues of Asian patients.

Disclosure of human immunodeficiency virus (HIV) status is a difficult emotional task creating opportunities for both support and rejection. For Asian patients there may be additional self-imposed barriers to disclosure that are rooted in cultural values. The purpose of this article is to describe how Asian cultural values of harmony and avoidance of conflict affect the disclosure experiences of HIV-positive Asian American and immigrants. Effective practice guidelines have been developed based on this information. Based on in-depth interviews with 16 HIV-positive Asian men, three focal issues were identified that serve as barriers to disclosure to family members: protection of family from shame, protection of family from obligation to help, and avoidance of communication regarding highly personal information. Additionally, patients felt disclosure was inhibited by the lack of HIV education to which families living overseas may have access. This is compounded by their lack of access to translated materials that they could send to family members. Similar to past disclosure research with non-Asian samples, the findings suggest that gay Asian men seek emotional support from gay friends. They would consider disclosing to relatives only when health reasons necessitated it. It is essential that helping professionals be attentive to the dishonor that patients may experience through disclosure and the stigma associated with being gay. Patients who are considering making a disclosure may need assistance with thinking through ways to provide HIV/acquired immune deficiency syndrome (AIDS) education to those family members that have little knowledge in this area. This may include translating or locating informational brochures translated into the family's language.

Reasons given for disclosure of maternal HIV status to children

The purpose of this investigation was to ascertain the reasons given by mothers diagnosed with AIDS (acquired immunodeficiency syndrome) for disclosing or not disclosing their HIV (human immunodeficiency virus) status to their children, a dilemma faced by most HIV-infected parents and those who counsel them. We interviewed 29 mothers residing in one of two New York City facilities that provide housing and medical treatment for adults with AIDS. The majority of these mothers do not live with their children, but all had recent face-to-face contact with them. The two reasons most frequently considered important for disclosing to children were that disclosure was the "right thing to do" and the need to make arrangements for children's future in case of maternal death or incapacity. The reason most frequently considered important for not disclosing was maternal concern about discussing death and dying with children. These findings have significant implications for counseling of HIV-positive parents.

Disclosure of HIV status to sexual partners: predictors and temporal patterns.

Failure to disclose human immunodeficiency virus (HIV) infection to sexual partners interferes with risk reduction. The purpose of this study was to identify factors associated with disclosure and failure to disclose HIV infection to sexual partners and to describe condom use with nondisclosure. A longitudinal survey study of HIV seropositive persons recruited at a public STD clinic. Approximately 76% of the study population (n = 147) reported disclosing their HIV status to their last sex partner at baseline. Predictors of disclosure included consistent condom use and being in a monogamous relationship. Twenty-two percent of those who disclosed at baseline reported nondisclosure during follow-up. Approximately 23% reported not using a condom with a person to whom their status was not disclosed. These results suggest that ongoing partner notification may be necessary to increase disclosure of HIV status to sex partners over time.

AIDS phobia, public health warnings, and lawsuits: deterring harm or rewarding ignorance?

Courts in more than a dozen states have decided cases in which a person has claimed money damages for his or her fear of getting acquired immunodeficiency syndrome (AIDS). Although most courts have rejected such claims in the absence of actual exposure to the human immunodeficiency virus (HIV), their reasoning has varied slightly from state to state. This article argues that negligence law should not permit people who are HIV negative to recover damages for an unfounded fear of AIDS. Public health statements intended to educate the public about preventing HIV transmission may have encouraged some fear-of-AIDS lawsuits against health care practitioners. Although well intentioned, such statements have been used to justify inappropriate restrictions on medical practice and disclosure of a practitioner's HIV status. To avoid such misuse, such statements should be revised to make clear that the way in which procedures are performed, not who performs them, determines HIV transmission.

Medicine and the Law

At the British Medical Association's 1987 conference, members approved a statement, contrary to the Association's official policy, that testing for human immunodeficiency virus (HIV) infection "should be at the discretion of the patient's doctor and should not necessarily require the consent of the patient." Brahams considers whether the practice is unlawful. General consent for treatment that requires blood tests could include HIV tests if not expressly excluded, but might be invalid if deception was involved. The mentally incompetent may be tested as good medical practice demands. Brahams also discusses the legal aspects of confidentiality and disclosure of HIV status to various third parties, and the legal liability and legal claims of HIV infected persons. She concludes that the law could be used to control the spread of AIDS by regulating behavior.