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The disclosure of the diagnosis of cancer.

Before significant efforts relative to patient education and subsequent informed decision making can occur, it is essential to assess the patient's perceptions and emotional responses to the diagnosis. The direction and depth of this exploration are likely to be determined by such factors as quality of the previous relationship with the patient, the patient's belief and support system, and the patient's previous experience with trauma. Other determining factors are the sense of urgency with which medical decisions need to be made and the interpersonal skills of the physician. It is important at the time of diagnosis to understand and respond to the patient's cognitive and emotional responses to the diagnosis. The sensitive physician allows time to acknowledge and legitimate those responses. It is often important to allow the ventilation of those reactions before further education and decision making can occur. By accepting and acknowledging the patient's reactions, the physician can reduce the patient's feelings of isolation and helplessness. The quality of such a relationship then becomes the foundation on which the patient and family and physician can begin to attend to the issues before them.

Decision Making↗

Predictors of nonadherence to single-dose nevirapine therapy for the prevention of mother-to-child HIV transmission.

BACKGROUND: Adequate adherence is required for prevention of mother-to-child transmission of HIV (pMTCT) programs to be effective. We investigated predictors and extent of nonadherence to single-dose nevirapine. METHODS: Data on nevirapine intake and possible predictors were collected among 760 HIV-positive women with liveborn babies enrolled in a study in Lusaka, Zambia. RESULTS: Most (94%) women took nevirapine before delivery, and most (91%) newborns received it soon after delivery. Maternal nonadherence was associated with home births (odds ratio [OR]: 3.2; 95% confidence interval [CI]: 1.3 to 7.4), no high school education (OR: 2.4; 95% CI: 1.1 to 5.3), and low newborn birth weight (OR: 4.6; 95% CI: 1.3 to 20.1). Disclosure of HIV status and couples counseling was only associated with adherence among home births. Failure to administer nevirapine to the newborn was associated with birth at the tertiary hospital (OR: 7.2; 95% CI: 3.7 to 13.8), lower 5-minute Apgar scores (OR: 0.5; 95% CI: 0.4 to 0.7), and neonatal death (OR: 5.8; 95% CI: 2.0 to 16.3). CONCLUSIONS: Excellent adherence to single-dose nevirapine for pMTCT can be achieved. Nonadherence seems to be affected by place of birth and by poor health status of the newborn. Procedures to ensure that viable yet ill neonates receive nevirapine should be part of clinical protocols and training within pMTCT programs.

Adult↗

"Living with the dirty secret": problems of disclosure for methadone maintenance clients.

This article focuses on the management of stigma by methadone maintenance patients. It explores (1) the consequences of this persistent stigma, which necessitates the need for secrecy, (2) the adaptations made in order to successfully "pass as normal," and (3) the contexts in which methadone-maintained individuals decide to disclose their stigmatized status. The data reported and analyzed were gathered between 1980 and 1989 during a series of studies funded by the National Institute on Drug Abuse. The three studies--"Women on Methadone," "Getting Off Methadone," and "Alameda County Methadone Study"--utilized qualitative, in-depth interviews and ethnographic sampling techniques, primarily chain referral sampling. After ten years of interviewing women and men in various stages of their methadone maintenance careers, recurring themes emerged, one of which was that being a methadone patient is a marginal identity; not quite junkie, not quite conventional. Clients' efforts to manage this stigmatized identity were often shrouded in anguish and secrecy. Methadone patients were in a kind of identity limbo; a holding pattern between two extremely different social worlds. They were trying to effect an identity transformation; however, in many circumstances they were still associated with and defined by their "dirty secret."

Adult↗

Exception from informed consent: viewpoint of institutional review boards--balancing risks to subjects, community consultation, and future directions.

Differences in interpretation of the Final Rule for exception from informed consent (EFIC) requirements for emergency research result in inconsistencies in implementation and difficulties for some institutional review boards (IRBs) to approve such research. During a consensus workshop organized by the editorial board of Academic Emergency Medicine, participants discussed how IRBs balance the risks to human subjects in EFIC research, the conduct of community consultation and its role in IRB decision making, and future directions to improve and research EFIC effects. Areas of consensus and diversity of opinion were identified. During the workshop, the National Institutes of Health model of consensus building was used to develop statements pertaining to specific questions of the effects, directions, implementation, and ultimate goals for emergency research using EFIC. The program was composed of an overview of the history and issues related to EFIC or Final Rule research and presentations of viewpoints of experts in this area of research. A final consensus was developed regarding the major topics, including IRB perspective, effective community consultation (often considered the main difficulty in implementing EFIC research), and goals for future directions and research on the topic. Roundtable discussions and breakout sessions involving interested parties were used as a format. In regard to how IRBs balance risks, by consensus it was agreed the regulations stipulate that EFIC studies must involve treatment that is unproven or unsatisfactory. The committee agreed that resuscitation rates are currently unsatisfactory, and thus current treatments are unsatisfactory. Many treatments currently used as standard care have never been proven to be effective. IRBs and the public need education that resuscitation research is needed. The same can be said for other conditions to which this rule applies. Because IRB expertise differs across the country, a group of peer reviewers to act as consultants should be available to help IRBs determine if current treatment for a condition is unproven or unsatisfactory. In regard to community consultation, the experiences of others are important and helpful as guidance. The amount and formats of community consultation should correspond to the amount of risk involved in the study proposed. In regard to future directions, communities should be asked how they define "success" of community consultation and public disclosure. Research on community attitudes is critical. Ways to continue/add to research include the following: research including major National Institutes of Health/Centers for Disease Control and Prevention funding acquisition for evaluation of the clinical impact of EFIC research; education for research funding agencies about emergency research, including current outcomes (e.g., survival rates); participation of emergency medicine researchers in meetings of research ethicists/IRB members (Public Responsibility in Medicine and Research/Applied Research Ethics National Association); publication of experiences and of the effects of EFIC research; future update meetings such as this one at the Society for Academic Emergency Medicine meeting; and more membership on IRBs of emergency physicians. While IRBs must approve EFIC research based on their own local environment, additional guidelines from regulatory agencies may be helpful. In general, current treatments for EFIC conditions are unsatisfactory and many are unproven. A group of peer reviewers can act as consultants to IRBs that do not have this expertise.

Community-Institutional Relations↗

Breaking bad news revisited: the push for negotiated disclosure and changing practice implications.

This article revisits the ethical, legal, professional and emotional issues involved with disclosing bad news. The authors examine the push for disclosure that has come from a number of quarters in the UK, including ethical and legal challenges, in particular the Bristol Royal Inquiry Report, professional codes of conduct, health policy and the expectations of the public. The contribution of nurses to breaking bad news is not widely discussed in the literature. With the development of new nursing roles and evidence-based practice it is timely to consider the role of nurses in this process. The article highlights some limitations with current guidelines for breaking bad news, in particular, that these guidelines tend to be constructed from a professional standpoint and lack patient-centred evidence. The issue of emotional labour and how it relates to giving bad news is discussed with respect to professional staff and patients. The article concludes by raising some practice implications, including: the importance of context and continuity; the significance of information and support; the desirable qualities of the professional; and issues to consider in determining patient preferences.

Emotions↗

Physician expressions of uncertainty during patient encounters.

Uncertainty is inherent in clinical medicine and may contribute to variability in physician practice patterns, patient satisfaction, and exchange of information. However, research on physician disclosure of uncertainty to patients is sparse. We measured the frequency of physician expressions of uncertainty to patients using audiotapes of visits to 43 physicians by 216 continuity patients in a university-affiliated general medicine clinic. We also analyzed the audiotapes using Roter Interaction Analysis. Physicians completed Gerrity's Physician's Reaction to Uncertainty scale and patients completed the Kranz Health Opinion Survey and a standardized satisfaction questionnaire. Physicians made verbal expressions of uncertainty in 71% of clinic visits. Physicians with greater self-rated reluctance to disclose uncertainty to patients made fewer expressions. Physicians who made more uncertainty expressions also used more positive talk and partnership building, and gave more information to patients. Physicians also expressed more uncertainty to patients with more education, greater desire for information, and more questions. Physician uncertainty expression were associated with greater patient satisfaction, but not independently of other physician verbal behaviors that were also associated with satisfaction.

Adult↗

Hidden victims: the healthcare needs and experiences of older women in abusive relationships.

BACKGROUND: Intimate partner violence (IPV) is a problem in older women, but older victims of IPV are often unidentified in the medical setting because providers think of IPV as a problem of younger women. The experiences of older women with IPV are unknown. This study reports on the healthcare experiences and needs of older victims of IPV. METHODS: Interviews were conducted with 38 women > 55 years who responded to an advertisement recruiting "women who had been in an abusive relationship since age 55." Interviews were audiotaped, transcribed, and analyzed for themes. RESULTS: The median age of participants was 58 years (range 55-90). The majority were Caucasian with annual incomes over dollar 40,000. The median relationship length was 24 years (range 2-67), and 39% remained in their abusive relationships. About half had discussed IPV with a healthcare provider. The themes that were identified included disclosure about IPV and both negative and positive experiences with healthcare providers. Reasons for nondisclosure were similar to those of younger women but were compounded by the generational mores of privacy about domestic affairs and society's lack of understanding and resources for IPV. Some of the women who disclosed IPV to their providers felt discounted and unsupported. Others reported receiving valuable help, including empathy, referrals to resources, assistance in naming the abuse, linking the stress of IPV to health, and respect for their decisions to continue their abusive relationships. CONCLUSIONS: Older women victims have difficulty initiating discussions about IPV with their providers. Providers are encouraged to identify signals of potential abuse and to create privacy with all patients to discuss difficult issues, such as IPV, and to be knowledgeable about appropriate referrals.

Aged↗

Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches.

PURPOSE: To compare Japanese and U.S. resident physicians' attitudes, clinical experiences, and emotional responses regarding making disclosures to patients facing incurable illnesses. METHOD: From September 2003 to June 2004, the authors used a ten-item self-administered anonymous questionnaire in a cross-sectional survey of 103 internal medicine residents at two U.S. sites in Los Angeles, California, and 244 general medical practice residents at five Japanese sites in Central Honshu, Kyushu, Okinawa, Japan. RESULTS: The Japanese residents were more likely to favor including the family in disclosing diagnosis (95% versus 45%, p<.001) and prognosis (95% versus 51%, p<.001) of metastatic gastric cancer. Of residents who favored diagnostic or prognostic disclosure to both the patient and family, Japanese residents were more likely to prefer discussion with the family first. Trainees in Japan expressed greater uncertainty about ethical practices related to disclosure of diagnosis or prognosis. Many Japanese and U.S. residents indicated that they had deceived a patient at the request of a family (76% versus 18 %, p<.001), or provided nonbeneficial care (56% versus 72%, p<.05), and many expressed guilt about these behaviors. CONCLUSIONS: The residents' approaches to end-of-life decision making reflect known cultural preferences related to the role of patients and their families. Although Japanese trainees were more likely to endorse the role of the family, they expressed greater uncertainty about their approach. Difficulty and uncertainty in end-of-life decision making were common among both the Japanese and U.S. residents. Both groups would benefit from ethical training to negotiate diverse, changing norms regarding end-of-life decision making.

Adult↗

Ethical perspectives for public and environmental health: fostering autonomy and the right to know.

In this paper we develop an ethical perspective for public and environmental health practice in consideration of the "right to know" by contrasting consequential and deontological perspectives with relational ethics grounded in the concept of fostering autonomy. From the consequential perspective, disclosure of public and environmental health risks to the public depends on the expected or possible consequences. We discuss three major concerns with this perspective: respect for persons, justice, and ignorance. From a deontological perspective, the "right to know" means that there is a "duty" to communicate about all public health risks and consideration of the principles of prevention, precaution, and environmental justice. Relational ethics develops from consideration of a mutual limitation of the traditional perspectives. Relational ethics is grounded in the relationship between the public and public/environmental health providers. In this paper we develop a model for this relationship, which we call "fostering autonomy through mutually respectful relationships." Fostering autonomy is both an end in public health practice and a means to promote the principles of prevention, precaution, and environmental justice. We discuss these principles as they relate to practical issues of major disasters and contaminants in food, such as DDT, toxaphene, chlordane, and mercury.

Disaster Planning↗

Disclosure of donor insemination to the child: the impact of Swedish legislation on couples' attitudes.

The question whether or not parents of children conceived after donor insemination (DI) tell their offspring about its biological background was addressed. Swedish legislation from 1985 gives the child born after DI the right, when grown up, to receive identifying information about the sperm donor. Until now no information about compliance with the law has been available. All parents who gave birth to a child by DI after the new legislation in two major Swedish fertility centres (Stockholm and Umeâ) received a questionnaire containing questions about the issue of informing the child. The response rate was 80%. The majority of parents (89%) had not informed their children, whereas 59% had told someone else. As a response to an open question, 105/132 parents chose to comment on their answer about not having informed their child. Of these families, 61 intended to tell their child later, 16 were not sure and 28 were not going to inform the child. Compliance with the law must be regarded as low since only 52% of the parents had told or intended to tell their child. In addition, concern is raised about the children who run the risk of being informed by someone other than their parents.

Adolescent↗

Consequences of HIV testing without consent.

The objective of this study is to explore the HIV-infected individuals' experience with HIV testing, counselling, disclosure of diagnosis and subsequent life events following diagnosis. The method used is a questionnaire survey of 340 consecutive HIV-positive victims, seen in two health institutions in southeast Nigeria within a one-year-period, November 2003 to October 2004. Three hundred and twenty respondents answered the questionnaire, 121 were men and 199 women, with 79% in the age range 20-39 years. Most respondents had known their HIV status for 3.2 (+/-1.1) years and the majority are in the lower social class. About 80% reported that their consent for HIV test was not asked for, resulting in feelings of fear, disbelief, shock and embarrassment on learning about their HIV status. Despite the initial reaction to the diagnosis, majority (81.9%) expressed satisfaction with the pattern of disclosure of diagnosis. There was some reluctance to inform spouse/partner of the diagnosis especially among asymptomatic, unmarried, childless or divorced victims. A serodiscordant couple resulted in mistrust and increased incidence of abandonment. Apart from spouse/partner the respondents are more likely to inform their siblings of the diagnosis than parents, children or friends. Despite being supportive, the respondents are more likely to suffer more neglect from siblings than their spouse (P<0.05) but the risk of being abandoned was more with the spouse than with siblings (P<0.05). Only 32.6% of the 129 respondents on antiretroviral therapy are regular with it mainly because of cost and non-availability of drugs. Default in treatment was more evident among the unmarried, those with low educational status and treatment with antiretroviral drugs for more than two years. Proper pre- and post-test counselling, promotion of behavioural change among the society about HIV/AIDS and provision of support and cost-effective care for HIV victims is advocated.

Adult↗

The role of disclosure patterns and unsupportive social interactions in the well-being of breast cancer patients.

The purpose of this study was to examine the nature and potential effects of disclosure patterns and unsupportive social interactions in breast cancer patients. Disclosure, the thoughts and feelings people communicate to others, and unsupportive social interactions, the upsetting or unsupportive responses people receive from others, have been infrequently studied in breast cancer patients. Sixty-six early stage breast cancer patients diagnosed less than one year completed a written questionnaire. Results indicated that the women reported confiding in family and friends more than in mental health workers. Fears of recurrence and worries about the effects of the illness on family members were the most important concerns, whereas concerns about body image were the least troublesome. Failure to disclose concerns was associated with low social support, high unsupportive social interactions, and low emotional well-being. Most of the unsupportive responses received from other people were either behaviors of minimizing or distancing. Unsupportive reactions were significantly associated with greater role limitations due to emotional problems and decreased social functioning. Implications for interventions and future research are discussed.

Adult↗

Disclosure of HIV status and human rights: the duties and responsibilities of couples, medical professionals, family members and the state.

This case history is about a young husband in India who became HIV positive and did not inform his wife. This man was working for a company in the city of Mumbai when he became ill with tuberculosis and was diagnosed with AIDS. This information was not disclosed to his 21-year-old wife, who was living with her parents-in-law in a rural area of South Kerala. He came home to recover and, supported by his parents' wishes, wanted his wife to become pregnant, even though she had asked that they wait until he had recovered. She came to know that her husband had AIDS and the dangers it posed only when she was eight months pregnant and he was seriously ill. Her husband died some three months after the baby was born and she went back to her parents' house, where she and the baby were living at the mercy of others. The contributors to this multi-authored Roundtable discuss the various human rights issues and the duties and responsibilities involved--not only of spouses and partners to each other but also of medical professionals, family members and the state--which arise from such a case.

Adult↗

Regulation of existing chemicals under TSCA: information disclosure as the route to reducing risk and increasing available data.

The Toxic Substances Control Act (TSCA) empowers the Environmental Protection Agency (EPA) to regulate risk associated with the use of existing chemicals and the introduction of new chemicals into commerce. Due to a number of concerns, however, the authority to regulate existing chemicals under TSCA has enjoyed limited success. A more generic and flexible approach is needed to achieve significant risk reduction for existing chemicals. This paper presents a frame-work for a generic approach to the regulation of existing chemicals. Under this framework, EPA would officially recognize that the distribution of chemical substances without evaluating and communicating to the user how to avoid operationally undesirable exposures represents an unreasonable risk to health or the environment. Acting under the authority of TSCA, EPA would then generically require suppliers to communicate acceptable exposure levels and information regarding safe use. This framework is consistent with the express policy of TSCA, which states that development of data with respect to the effects of chemical substances and mixtures on health and the environment should be the responsibility of manufacturers and processors of chemicals. The approach outlined here is consistent with and complements initiatives of the Office of Toxic Substances (OTS) and would enable OTS to accomplish some of the fundamental goals of TSCA.

Chemical Industry↗

Being asked not to tell: nurses' experiences of caring for cancer patients not told their diagnosis.

AIMS AND OBJECTIVES: The aim of the primary research was to investigate the impact of the nurse-patient relationship on clinical learning and subsequently clinical practice. Coincidently, 32 participants, all Registered Nurses in Hong Kong, provided details of nurse-patient encounters involving withholding of a cancer diagnosis. BACKGROUND: The changing face of clinical practice and cancer care has fuelled discussion and debate around disclosure or non-disclosure of the diagnosis of cancer, global consensus on this issue still does not exist. In different countries there is marked variation in how and what a patient may be told about their diagnosis and prognosis. There is considerable variability in the reported rate of cancer diagnosis disclosure across studies and countries. Being asked not to tell a patient their diagnosis of cancer presents many problems for nurses caring for those patients. The issue of non-disclosure directly affects nurses and their clinical practice. METHODS: This paper reports one of the findings of a large international qualitative study informed by phenomenology into the perceptions of nurses about caring for a patient with a diagnosis of cancer. RESULTS: Responses from participants revealed considerable difficulties for nurses when caring for patients who were not informed of their diagnosis. They recounted having learned from the encounters but remarked on the negativity of the experience. They discussed their inability to act decisively in the past situations but expressed hope that they had found a resolve to act in future. RELEVANCE TO CLINICAL PRACTICE: Although, overwhelmingly, participants doubted they would actually be able to change the reality of practice. The identified care episode and the nurse-patient relationship, according to participants, did change their clinical practice but often not for the better.

Adaptation, Psychological↗

Resources, stigma, and patterns of disclosure in rural women with HIV infection.

A growing number of cases of HIV infection are being diagnosed in rural communities especially among women. Although HIV-specific education and care delivery programs have been focused on rural areas in recent years, limited data are available on the impact of such initiatives on the lives of women with HIV infection. The purpose of this study was to examine characteristics of women with HIV disease living in rural communities. The study used a cross-sectional sample of rural women in Georgia. Data analysis indicated that although a majority of the women reported adequate resources, there was a group of women for whom resources for basic needs were not always adequate. Additionally, women with HIV who had not progressed to AIDS had greater difficulty in obtaining a number of resources. Almost half of the women felt stigmatized due to having HIV. Yet, a high percentage of these women had disclosed their HIV status to health care workers, sexual partners, and family. Study results provide insight into the needs of HIV-infected rural women from their perspective. This information can be important to nurses working in public health and community settings as they face the challenge of developing effective health care services for this population.

Adolescent↗

Patients' and physicians' attitudes regarding the disclosure of medical errors.

CONTEXT: Despite the best efforts of health care practitioners, medical errors are inevitable. Disclosure of errors to patients is desired by patients and recommended by ethicists and professional organizations, but little is known about how patients and physicians think medical errors should be discussed. OBJECTIVE: To determine patients' and physicians' attitudes about error disclosure. DESIGN, SETTING, AND PARTICIPANTS: Thirteen focus groups were organized, including 6 groups of adult patients, 4 groups of academic and community physicians, and 3 groups of both physicians and patients. A total of 52 patients and 46 physicians participated. MAIN OUTCOME MEASURES: Qualitative analysis of focus group transcripts to determine the attitudes of patients and physicians about medical error disclosure; whether physicians disclose the information patients desire; and patients' and physicians' emotional needs when an error occurs and whether these needs are met. RESULTS: Both patients and physicians had unmet needs following errors. Patients wanted disclosure of all harmful errors and sought information about what happened, why the error happened, how the error's consequences will be mitigated, and how recurrences will be prevented. Physicians agreed that harmful errors should be disclosed but "choose their words carefully" when telling patients about errors. Although physicians disclosed the adverse event, they often avoided stating that an error occurred, why the error happened, or how recurrences would be prevented. Patients also desired emotional support from physicians following errors, including an apology. However, physicians worried that an apology might create legal liability. Physicians were also upset when errors happen but were unsure where to seek emotional support. CONCLUSIONS: Physicians may not be providing the information or emotional support that patients seek following harmful medical errors. Physicians should strive to meet patients' desires for an apology and for information on the nature, cause, and prevention of errors. Institutions should also address the emotional needs of practitioners who are involved in medical errors.

Adult↗

From adolescence through young adulthood: psychosocial adjustment associated with long-term survival of HIV.

PURPOSE: To examine the psychosocial factors associated with long-term survival of pediatric human immunodeficiency virus (HIV) infection. METHODS: Children infected with HIV enrolled in clinical trials at the National Cancer Institute and their caregivers were interviewed and completed self-report measures 3 times, approximately 12 months apart, using the Child Behavior Checklist, Social Support Scale for Children, Self-Perception Profile for Children and Adolescents, and a structured interview designed by the investigators. Historical data were also extracted from patient medical charts. Average age of participants was 11.8 years at time 1 and 14 years at time 2; 56.3% of the original sample were male, racial composition was 72.2% white, 13.9% African-American, 6.9% Hispanic, and 6.9% "other"; 38.9% of participants contracted HIV perinatally, 34.7% through a hemophilia-related transfusion, and 26.4% through another type of transfusion. RESULTS: Pearson product-moment correlations revealed that disclosure was found to be positively related to social support, self-competence, and decreased problem behavior, except in the case of public disclosure, in which an independent-sample Student's t-test revealed that it was negatively associated with global self-competence. Social support was significantly negatively correlated with problem behavior. Chi-square analyses of the 5-year follow-up data indicated that participants aged 18 years and older were less likely to complete their academic education than their healthy peers (national norms). Adolescents who lost a parent were more likely to have suffered from depression during their lifetime. CONCLUSIONS: Social support and open communication about the diagnosis are essential, particularly at an age at which decisions about relationships, sexual activity, drug use, and plans for the future are the focus of adolescent development and individuation. With advances in medical treatment, HIV-infected children are more likely to survive into adolescence and beyond. Accordingly, their psychosocial needs are changing to more closely resemble the needs of the chronically ill individual, rather than the terminally ill. Families of HIV-infected children should seriously consider preparation for independent living.

Adolescent↗