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PubMed2003

High rates and positive outcomes of HIV-serostatus disclosure to sexual partners: reasons for cautious optimism from a voluntary counseling and testing clinic in Dar es Salaam, Tanzania.

The rates, barriers, and outcomes of HIV serostatus disclosure to sexual partners are described for 245 female voluntary counseling and testing (VCT) clients in Dar es Salaam, Tanzania. VCT clients were surveyed 3 months after HIV testing to describe their HIV-serostatus disclosure experiences. Sixty-four percent of HIV-positive women and 79.5% of HIV-negative women (p = 0.028) reported that they had shared HIV test results with their partners. Among women who did not disclose, 52% reported the reason as fear of their partner's reaction. Both 81.9% of HIV-negative women and 48.9% of HIV-positive women reported that their partner reacted supportively to disclosure (p < 0.001). Less than 5% of women reported any negative reactions following disclosure. VCT should continue to be widely promoted. However, intervention approaches such as development of screening tools and new counseling approaches are important to ensure the safety of women who want to safely disclose HIV serostatus to their sexual partners.

Adolescent↗
PubMed1991

Privacy and disclosure in medical genetics examined in an ethics of care.

The progress of genetic knowledge magnifies existing ethical problems in medical genetics. Among the most troubling types of problems -- for medicine, patients, and the larger society -- are those of privacy and disclosure. Examples of the range of problems involving privacy and disclosure are: 1) disclosure of false paternity to an unsuspecting husband; 2) disclosure of a patient's genetic make-up to his or her unknowing spouse; 3) disclosure of information, against a patient's wishes, to relatives at genetic risk; 4) disclosure of ambiguous test results; 5) disclosure of adventitious nonmedical information, e.g., fetal sex; and 6) disclosure to institutional third parties, such as employers and insurers....

Attitude↗
PubMed2006

[Disclosure of HIV infection from the perspective of adolescents living with HIV/AIDS and their parents and caregivers].

The purpose of this study was to identify relevant issues in the disclosure of HIV-positive status in children and adolescents, aiming to improve the quality of their healthcare. A qualitative study included adolescents living with HIV/ AIDS and their parents and caregivers at AIDS reference services in São Paulo and Santos, Brazil. In-depth interviews and focus group were used. The main reasons for disclosure were: poor treatment adherence, sexual maturity, adolescent's request, and inadequate procedures by medical staff. Disclosure was a critical moment for adolescents, with a strong impact on their life plans and horizons. Adolescents infected through sexual transmission and drug use reported the most problematic scenes involved in disclosure. Despite its initial negative impact, disclosure resulted in improved healthcare and better dialogue among the adolescents, caregivers, and healthcare providers. The adolescents also requested clear, no-nonsense, honest information. The authors conclude that health services need to actively provide an adequate approach to facilitate disclosure of HIV-positive status to children and adolescents, realizing that it is a long-term process supported by the family and a multidisciplinary team.

Acquired Immunodeficiency Syndrome↗
PubMed1994

Genetic testing for children and adolescents. Who decides?

In the future there is likely to be a large array of DNA-based tests to diagnose single-gene disorders and to identify predispositions to genetically influenced disorders. This article focuses on ethical, legal, and psychological implications of testing healthy children and adolescents for such disorders. Testing may offer medical or psychological benefits but may harm parent-child bonds or the child's self-concept. Clinicians may encounter situations where they must weigh the child's or adolescent's wishes against wishes of parents. We examine the legal history and current status of minors as health care consumers; psychosocial research on their maturity to make choices; impact of testing on intrafamilial relationships; views of national commissions on appropriate ages of assent and full informed consent; ethical and legal requirements for competence in children and adolescents; and disclosure of genetic information. We propose guidelines for predictive genetic testing and counseling of children and discuss risks and benefits of testing.

Adolescent↗
PubMed1994

Informed consent in Missouri: where has it taken us?

Between 1987 and 1990 there has been an increase in the number of medical malpractice claims in which lack of informed consent was the sole allegation. This should alert physicians to the need for a better awareness of recent changes in the doctrine of informed consent. Some states have liberalized the scope of the disclosure made to the patient, but Missouri has resisted any further doctrinal expansion in this area. In contrast, changes in the law relating to the doctor/patient relationship are more universally applied and permanent. It is clear that any actual treatment or nontreatment decision remains solely a right of the patient (parent or surrogate). Easily applied guidelines for obtaining informed consent that incorporate these changes are suggested.

Communication↗
PubMed1998

Direct disclosure of bone density results to patients: effect on knowledge of osteoporosis risk and anxiety level.

If bone mineral density (BMD) screening is to achieve the aim of preventing the complications of osteoporosis, women with low BMD measurements must learn that they are at risk, and women at risk must know about and be willing to adopt and persist with measures that can prevent osteoporosis. In this paper we present the results of a randomized controlled trial designed to examine whether disclosing the results of a BMD scan directly to women, as well as through their general practitioners (GPs), improves their knowledge of their bone density results without adverse psychological sequelae. Direct disclosure resulted in 19% (59% vs 40%; 95% CI for difference in proportions: 9.8% to 27.8%) more women being aware of their BMD status at the spine and 22% (58% vs 36%; 95% CI for difference: 12.2% to 29.8%) at the hip. These differences were observed irrespective of risk status. There was no significant difference in anxiety levels between the randomized groups. We conclude, therefore, that direct disclosure of BMD results to women, as well as to their GPs, leads to increased knowledge of BMD status without increasing anxiety, and that BMD measurement services should consider informing women routinely of their results directly as well as through their GPs.

Anxiety↗
PubMed2006

Perceptions towards condom use, sexual activity, and HIV disclosure among HIV-positive African American men who have sex with men: implications for heterosexual transmission.

Disproportionately high HIV/AIDS rates and frequent non-gay identification (NGI) among African American men who have sex with men or with both men and women (MSM/W) highlight the importance of understanding how HIV-positive African American MSM/W perceive safer sex, experience living with HIV, and decide to disclose their HIV status. Thirty predominately seropositive and non-gay identifying African American MSM/W in Los Angeles participated in three semi-structured focus group interviews, and a constant comparison method was used to analyze responses regarding condom use, sexual activity after an HIV diagnosis, and HIV serostatus disclosure. Condom use themes included its protective role against disease and pregnancy, acceptability concerns pertaining to aesthetic factors and effectiveness, and situational influences such as exchange sex, substance use, and suspicions from female partners. Themes regarding the impact of HIV on sexual activity included rejection, decreased partner seeking, and isolation. Serostatus disclosure themes included disclosure to selective partners and personal responsibility. Comprehensive HIV risk-reduction strategies that build social support networks, condom self-efficacy, communication skills, and a sense of collective responsibility among NGI African American MSM/W while addressing HIV stigma in the African American community as a whole are suggested.

Adult↗
PubMed1992

Communication with dying patients in coronary care units.

There now seems to be a much greater willingness among hospital staff to disclose a terminal prognosis to a patient. The paper starts with a review of the changing attitudes towards disclosure and then considers communication with dying patients in Coronary Care Units. After considering general factors influencing nurse communication with dying patients sources of difficulty in such communication are considered. Characteristics of patients and relatives, of nurses, and features of the work environment may all contribute to communicational difficulties. The paper closes with a brief overview of basic communicative requirements.

Cardiovascular Diseases↗
PubMed2006

Attitudes about intimate partner violence screening among an ethnically diverse sample of young women.

PURPOSE: This clinic-based study investigated attitudes about intimate partner violence (IPV) screening among an ethnically diverse population of adolescent and young adult women (n = 645). METHODS: A cross-sectional quantitative and qualitative survey assessed experiences with and attitudes toward IPV screening. RESULTS: Almost all participants supported universal IPV screening and over 90% believed that a health care provider was the most appropriate adult to ask them about interpersonal violence. Young women's concerns toward screening varied by age and violence experience; those most likely to mind being screened were younger, had a history of childhood sexual abuse, and were victims of physical violence in the last year. However, even in these groups, over 70% supported IPV screening. Qualitative analyses suggested that provider qualities and confidentiality will affect the amount of disclosure to provider-initiated screening. Women also raised important questions about how to define IPV in relationships. CONCLUSIONS: Young women generally favor universal screening of interpersonal violence, but provider qualities and confidentiality issues affect responses to screening questions.

Adolescent↗
PubMed1997

Assessing literacy for patient teaching: perspectives of adults with low literacy skills.

The purpose of this qualitative study was to gain an understanding of the response of English speaking adults with low literacy skills to screening of reading ability in order to facilitate the planning of patient teaching in a hospital setting. The Rapid Estimate of Literacy in Medicine (REALM) was the screening tool used to provide a screening experience for research subjects. A multiple case study design was employed to gain insight, describe participant experiences and generate an evidence-based conceptual model. While all participants supported the principle of screening in the context of the hospital, response to the actual experience was varied. Factors found to influence responses to screening included perceived risks of illiteracy exposure, perceived risks of non-disclosure during hospitalization and the attribution of characteristics to the hospital leading to it's designation as a 'special' place. A conceptual model of screening response was developed and compared to the Health Belief Model and Knox's Proficiency Theory of adult learning. Implications for the health professions are also discussed.

Adult↗
PubMed2002

The telling and knowing of dying: philosophical bases for hospice care in Japan.

This article describes the historical and cultural factors that led to the modern definition of hospice in the United States and Japan. It also raises questions about the import of western hospice philosophy into Japan by examining some traditional values and cultural norms of behaviour surrounding dying in that country. The ethics of disclosure and open discussion, as a prerequisite to and foundational value in western hospice care, differs in Japan. If traditional Japanese values remain strong, expectations regarding hospice care based on this western ethics may be misplaced. This report ends with a suggestion of replacing the western imported hospice philosophy with an (as yet not explicated) Japanese philosophical ethic of the good.

Bioethics↗
PubMed2001

Paediatric HIV infection.

HIV and AIDS have made a huge global impact, permeating the social, cultural, and economic fabric of almost all nations. The first cases of HIV infection in children were reported in the late 1980s and numbers have since risen steadily throughout the world, with some of the poorest and least developed countries experiencing the highest prevalence. Combined drug regimes have changed the course of HIV-related illness and brought increased survival to those for whom treatment is available. With this, however, have come fresh concerns relating to drug resistance, treatment adherence, and the risk of second-generation vertical transmission as HIV-infected children now survive into adulthood and beyond. The psychological literature has addressed issues such as the direct effect of HIV on child development, social and cultural attitudes, family functioning and support, affected children and orphans of HIV-infected parents, sexual health education, disclosure of diagnosis, and long-term clinical management. The outcome for those living in wealthier countries is optimistic, but the spread of this virus in the rest of the world and its impact on family life and social and political systems remains of great concern.

Adolescent↗
PubMed1999

The ethics of information disclosure in HIV disease and cancer: a study of medical residents attitudes.

The study analyzes medical residents (MRs) attitudes on the ethics of information disclosure in two case scenarios--HIV disease and cancer. A purposeful sample of 120 MRs took part in a self-completion questionnaire administered. Responses were factor analyzed and three factors (17 statements) protecting rights of (1) spouse/family, (2) patient and (3) society, were retained for study. Analysis revealed that: (1) MRs perceived greater justification (P < 0.0001) in protecting family rights in HIV disease and patient rights (P < 0.0001) in cancer; (2) male MRs were significantly more inclined to protect spouse/family rights (P < 0.01) in HIV disease, when compared to female MRs; and (3) international MRs were significantly more inclined to protect spouse/family (P < 0.05) and societal rights (P < 0.01) in HIV disease, compared with United States MRs. Perception differences by MRs on ethics of information disclosure in HIV disease and cancer are based on MRs gender and their cultural background. It is important to document and address these attitudes during residency training.

Attitude of Health Personnel↗
PubMed1989

Maternal support following disclosure of incest.

The level of maternal support to incest victims following disclosure was found to be more closely related to perpetrator than to child characteristics. Lack of maternal support was significantly associated with foster placement and higher psychopathology scores in a clinical interview. Evidence is presented challenging the validity of maternal behavioral reports in assessments of incest victims.

Adolescent↗
PubMed2005

Disclosure of child abuse in conflict areas.

Analyzing legal policies requires an in-depth understanding of the sociopolitical contexts within which sexual abuse is disclosed. Data presented in this study are based on a larger study of 628 Palestinian Israeli girls aged 14 to 16 years. Of these 628 girls, 28 victims of sexual abuse discussed their abuse with the research team. In addition, interviews were conducted with professional helpers. The contextual analyses of the interviews focused on the way young girls perceived disclosure, social support, and legal intervention to their abuse. Data revealed that the girls' attitudes not only conformed to general findings on disclosure of sexual abuse but also reflected sociopolitical fears and stressors. Helpers struggled between their beliefs that they should abide by the state's formal legal policies and their consideration of the victim's context. The study reveals how decontextualizing child protection laws and policies can keep sexually abused girls from seeking help.

Adolescent↗
PubMed1997

Women's disclosure of HIV status: experiences of mistreatment and violence in an urban setting.

Women represent an increasing proportion of AIDS cases and anecdotal reports suggest some face substantial risks when others learn they are HIV-positive. The purpose of this paper is to describe women's fears and experiences regarding disclosure of their HIV status. Fifty HIV-positive women, ages 16-45 from urban teaching hospital outpatient clinics, were interviewed using an in-depth, qualitative interview. Eighty-six percent of the women were African American and 56% were current or former IVDU. At the time of the interview, 88% of the women had known their HIV status for a year or more. All but one woman had disclosed her HIV status to at least one person and 82% had disclosed to multiple people. Although two-thirds of the women had been afraid to disclose to others because of concerns about rejection, discrimination or violence, three-quarters of the sample reported only supportive and understanding responses to their disclosure. One-quarter of the sample reported negative consequences of disclosure, including rejection, abandonment, verbal abuse and physical assault. Disclosure-related violence was discussed by nine women (18%): two who feared violence were relieved to find a supportive response; four chose not to disclose their status because they feared violence; and three women were verbally or physically assaulted. Fear of mistreatment figured prominently in decisions about disclosure among this sample. That many women found supportive and understanding responses is encouraging. However, there were sufficient examples of negative consequences, including violence, to suggest individualized approaches to post-test counseling, enhanced support services for HIV-positive women, and public education to destigmatize HIV-disease.

Adolescent↗
PubMed2006

Gay men's report of regret of HIV disclosure to family, friends, and sex partners.

The purpose of this study was to examine whether HIV-positive MSM experience regret as a consequence of disclosing their HIV serostatus. Participants for this study were 76 HIV-positive MSM involved in a longitudinal study of HIV disclosure (N = 139). Men with at least one network member that was aware of his HIV infection were included in the analyses. Results revealed that overall, HIV-positive men do not regret family or friends knowing about their serostatus (63%). The observed proportion of regret events was practically negligible (4.2%). Compared with friends, the odds of experiencing regret were greater in the immediate family, with coworkers, and casual sex partners but was not significantly different in the extended family or committed sex partners. Despite disclosure being regarded as an anxiety provoking activity and negative reactions are typically anticipated, HIV disclosure appears to elicit very little regret to a wide variety of social network members. Furthermore, there were no differences in the occurrence of regret whether the HIV-positive person disclosed personally or if someone else disclosed for them. In both instances regret was remarkably low.

Adult↗