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PubMed1983

Educational self-help approaches in childhood asthma.

Self-help is defined as "a process whereby a layperson functions on his/her own behalf in health promotion and prevention and in disease detection and treatment. . . ." Evidence that benefits are derived for patients who subscribe to the self-care philosophy comes from research in the areas of (1) self-efficacy, (2) information sharing, (3) patient satisfaction, and (4) patient involvement. This article presents five criteria of educational self-help. These criteria are: (1) encouragement of client responsibility, (2) full disclosure of information pertaining to the illness, (3) training of the patient in decision-making skills, (4) use of peer educators, and (5) training of professionals to encourage self-help attitudes and behaviors of their patients. The asthma projects presented at the June 1981 meeting in Los Angeles, entitled Self-management Educational Programs for Childhood Asthma, are reviewed in terms of the above five criteria. Each program manifested varying numbers of criteria with different levels of expertise. Findings suggest that those programs that most completely incorporated these principles tended to be more effective in favorably influencing behavioral, physiologic, and financial outcomes.

Asthma↗
PubMed1994

Managing early HIV infection. Agency for Health Care Policy and Research.

This Quick Reference Guide for Clinicians contains highlights from the Clinical Practice Guideline on Evaluation and Management of Early HIV Infection, which was developed by a private-sector panel of health care providers and consumers. Selected aspects of evaluating and managing patients, both adults and children, who are in the early stages of human immunodeficiency virus infection are presented. Topics covered include disclosure of HIV status, monitoring of CD4 lymphocyte counts, prevention of Pneumocystis carinii pneumonia and infection with Mycobacterium tuberculosis, initiation of antiretroviral therapy, treatment of syphilis, eye and oral care, performance of Papanicolaou smears, diagnosis of HIV infection in infants and children, preventive therapy for PCP and assessment of neurologic problems in HIV-infected children, pregnancy counseling, and development of a comprehensive case management system. Algorithms are included that show the sequence of events related to evaluating and managing early HIV infection in adults and children, as well as drug dosing tables for antiretroviral, PCP, and M. tuberculosis therapies.

Adolescent↗
PubMed1999

The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia.

OBJECTIVE: To develop evidence based consensus statements on which to build clinical practice guidelines for primary care physicians toward the recognition, assessment and management of dementing disorders and to disseminate and evaluate the impact of these statements and guidelines built on these statements. OPTIONS: Structured approach to assessment, including recommended laboratory tests, choices for neuroimaging and referral, management of complications (especially behavioural problems and depression) and use of cognitive enhancing agents. POTENTIAL OUTCOMES: Consistent and improved clinical care of persons with dementia; cost containment by more selective use of laboratory investigations; neuroimaging and referrals; and appropriate use of cognitive enhancing agents. EVIDENCE: Authors of each background paper were entrusted to perform a literature search, discover additional relevant material, including references cited in retrieved articles, consult with other experts in the field and then synthesize information. Standard rules of evidence were applied. Based on this evidence, consensus statements were developed by a group of experts, guided by a steering committee of 8 individuals, from the areas of Neurology, Geriatric Medicine, Psychiatry, Family Medicine, Preventive Health Care and Health Care Systems. VALUES: Recommendations have been developed with particular attention to the context of primary care, and are intended to support family physicians in their ongoing assessment and care of patients with dementia. BENEFITS HARM AND COSTS: Potential for improved clinical care of people with dementia. A dissemination and evaluation strategy will attempt to measure the impact of the recommendations. RECOMMENDATIONS: Forty-eight recommendations are offered that address the following aspects of dementia care: early recognition; importance of careful history and examination in making a positive diagnosis; essential laboratory tests; rules for neuroimaging and referral; disclosure of diagnosis; importance of monitoring and providing support to caregivers; cultural aspects; detection and treatment of depression; observation and management of behavioural disturbances; detection and reporting of unsafe motor vehicle driving; genetic factors and opportunities for preventing dementia; pharmacological treatment with particular emphasis on cognitive enhancing agents. VALIDATION: Four other sets of consensus statement or guidelines have been published recently. These recommendations are generally congruent with our own consensus statements. The consensus statements have been endorsed by relevant bodies in Canada.

Automobile Driving↗
PubMed1987

Circumcision and informed consent. Is more information always better?

This study observes that physicians routinely inform parents about a small minority of the medical complications and risks associated with elective circumcisions. When selecting which medical complications to mention to parents, physicians appeared to use a policy based on their subjective assessment of the frequency and seriousness of the complications' occurrence. Subsequent analyses revealed that the physicians' probability estimates were biased and their seriousness assessments were consistently less than those expressed by mothers of newborn sons. Replacing the physicians' policy of partial disclosure with a comprehensive disclosure of "unbiased" information of possible risks and complications had no effect on the mothers' decisions to have their sons circumcised but did generate numerous influences on the mothers' attitudes. Among the effects observed in mothers were a reduction in their confidence in the appropriateness of their decision and a dissatisfaction with their physician's behavior. The implications of these findings to informed consent are discussed, and a greater flexibility in providing informed consent is advocated.

Adult↗
PubMed2004

Disclosure of genetic information obtained through research.

The rapid expansion of information and knowledge of genetics has implications for the question of whether, and under what circumstances, information discovered in the course of genetic research should be conveyed to research participants and/or their relatives. The aim of this paper is to propose an ethically defensible solution to a specific case example illustrating this problem. To do this we reviewed the literature to find answers to the following three questions: (1) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to research participants? (2) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to the relatives of research subjects? and (3) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research about former research participants who are now deceased? Our conclusion is that current U.S. federal guidelines governing the use of human subjects in research, as well as much of the current literature, do not adequately address the familial dimension inherent in genetic research, are virtually silent on the issue of sharing information of relevance to family members, and do not protect the deceased. It is our belief that this omission needs to be corrected and that explicit guidance on this issue needs to be provided to institutional review boards and researchers alike.

Genetic Counseling↗
PubMed2001

[Disclosure of a diagnosis of cancer: paradoxes and misunderstandings].

INTRODUCTION: Announcing to a patient that he has cancer is a key moment both in the relationship between this patient and his doctor and in the setting up of quality communications. However, the quality of this communication is often impaired by the presence of paradoxes and misunderstandings. CURRENT KNOWLEDGE AND KEY POINTS: The particularities of cancer, the defense mechanisms of the different contributors and cancer representations can increase the sources of misunderstandings, which will leave an indelible mark on the patient at the beginning of the disease. FUTURE AND PROJECTS: What's at stake in that type of announcement in terms of compliance should not be neglected. Practitioners becoming aware of those phenomena and communication rules should improve the modes of announcement.

Communication↗
PubMed2000

Women's lives after an HIV-positive diagnosis: disclosure and violence.

OBJECTIVES: This research addresses four questions: (1) What role do health care providers play in women's disclosure to others of their HIV-positive status? (2) What are women's concerns and experiences with disclosure? (3) What violence do women living with HIV experience? (4) How is the violence related to their diagnosis and disclosures? METHODS: Participants were 310 HIV-positive women enrolled in an HIV primary care clinic in an urban teaching hospital. Women were interviewed once using both quantitative and qualitative methods. RESULTS: Women had known they were HIV-positive for an average of 5.8 years; 22% had an HIV-positive partner; 58% had disclosed their status to more than 10 people; and 68% had experienced physical abuse and 32% sexual abuse as an adult. Fifty-seven percent of the sample reported that a health care provider had told them to disclose to their sex partners. Women who were afraid of disclosure-related violence (29%) were significantly more likely than those who were not to report that a health care provider helped them with disclosure (21% vs. 10%). Although 4% reported physical abuse following a disclosure event, 45% reported experiencing emotional, physical, or sexual abuse at some time after their diagnosis. Risk factors for experiencing abuse after diagnosis were a prior history of abuse, drug use, less income, younger age, length of time since diagnosis, and having a partner whose HIV status was negative or unknown. CONCLUSIONS: Identifying women at risk for abuse after an HIV-positive diagnosis is important for those who provide HIV testing and care. Routine screening for interpersonal violence should be incorporated into HIV posttest counseling and continuing primary care services.

Adolescent↗
PubMed1999

Initial experience using the Food and Drug administration guidelines for emergency research without consent.

Beginning November 6, 1996, Food and Drug Administration regulation 21 CFR 50.24 has allowed research without consent in limited circumstances while requiring additional patient protection in the form of community consultation and disclosure. We report our experience in complying with these regulations in Multicenter Vest CPR protocol, the first investigational device study done under this new ruling. We found uncertainty in inter-pretation of the requirements for community consultation. The acceptance of research without consent varied among the parties exposed to this protocol, but neither physicians nor the lay public expressed major reservations. The consultation process was time-consuming, demanding, and relatively costly. Further clarification of the community consultation standard and additional dialogue on this important topic will help to foster additional research in cardiopulmonary resuscitation.

Baltimore↗
PubMed2004

Doctors' duty to disclose error: a deontological or Kantian ethical analysis.

Medical (surgical) error is being talked about more openly and besides being the subject of retrospective reviews, is now the subject of prospective research. Disclosure of error has been a difficult issue because of fear of embarrassment for doctors in the eyes of their peers, and fear of punitive action by patients, consisting of medicolegal action and/or complaints to doctors' governing bodies. This paper examines physicians' and surgeons' duty to disclose error, from an ethical standpoint; specifically by applying the moral philosophical theory espoused by Immanuel Kant (ie. deontology). The purpose of this discourse is to apply moral philosophical analysis to a delicate but important issue which will be a matter all physicians and surgeons will have to confront, probably numerous times, in their professional careers.

Bioethical Issues↗
PubMed2006

Cultural context in medical ethics: lessons from Japan.

This paper examines two topics in Japanese medical ethics: non-disclosure of medical information by Japanese physicians, and the history of human rights abuses by Japanese physicians during World War II. These contrasting issues show how culture shapes our view of ethically appropriate behavior in medicine. An understanding of cultural context reveals that certain practices, such as withholding diagnostic information from patients, may represent ethical behavior in that context. In contrast, nonconsensual human experimentation designed to harm the patient is inherently unethical irrespective of cultural context. Attempts to define moral consensus in bioethics, and to distinguish between acceptable and unacceptable variation across different cultural contexts, remain central challenges in articulating international, culturally sensitive norms in medical ethics.

Biological Warfare↗
PubMed2004

A prospective study of the impact of polygraphy on high-risk behaviors in adult sex offenders.

This study examined whether polygraph testing would result in sex offenders engaging in fewer high-risk behaviors. Fifty adult male sex offenders taking part in community treatment programs were allocated into 2 groups: "Polygraph Aware" subjects were told they would receive a polygraph examination in 3 months regarding their high-risk behaviors, while "Polygraph Unaware" subjects were told their behavior would be reviewed in 3 months. Relevant behaviors for each subject were established at baseline interviews, following which both groups were polygraphed at 3 months. All subjects were polygraphed again at 6 months. The hypothesis was that subjects in the "Polygraph Aware" group would have engaged in fewer high-risk behaviors, based on their self-report during the examination. Thirty-two subjects (64%) attended the first polygraph examination, with 31 (97%) disclosing an average of 2.45 high-risk behaviors each previously unknown to supervising probation officers. There was no significant difference between the two groups. Because of the high failure rate, all subjects were told to expect a second polygraph. Twenty-one subjects (42%) completed the second polygraph test, with 71% disclosing an average of 1.57 behaviors, a significant decrease compared with the first test. Disclosures to treatment providers and probation officers also increased. It was concluded that polygraph testing resulted in offenders engaging in less high-risk behavior, although the possibility that offenders fabricated reports of high-risk behaviours to satisfy examiners is also considered; similarly, offenders seemed to be more honest with their supervisors, but this only occurred after experience of the test itself. Feedback from offenders who completed the study, taken together with the high drop out rate, suggested that those motivated not to reoffend found polygraphy useful, while those less motivated sought to avoid it.

Adult↗
PubMed2002

HIV transmission risk behaviours among HIV-positive persons in serodiscordant relationships.

As many as one in three persons living with HIV-AIDS continue to practise unprotected sexual intercourse and these practices often occur with HIV-negative or unknown HIV serostatus (serodiscordant) partners. The current study examined the rates of HIV transmission risk behaviours in non-regular (e.g. casual) and regular (e.g. steady) serodiscordant relationships. HIV positive men (n = 269) and women (n = 114) responded to measures of demographic characteristics, health and mental health status, and sexual behaviours assessed in partner-by-partner interviews. 257 (67%) participants were sexually active in the preceding three months and 182 (71%) of the sexually active persons had engaged in vaginal or anal intercourse with serodiscordant partners. Comparisons of persons with non-regular (n = 97) and regular (n = 85) serodiscordant partners showed that overall rates of unprotected and protected intercourse were greater with regular partners than non-regular partners. Disclosure of HIV status to regular and non-regular serodiscordant partners did not appear to influence the pattern of results. Mathematical modelling showed that HIV transmission estimates over a one-year horizon were significantly greater for male regular partners of HIV-positive men than non-regular partners and there was a trend toward greater HIV transmission rates from HIV-positive men to their regular serodiscordant female partners compared to non-regular partners. Results suggest an urgent need for HIV transmission risk reduction interventions for HIV serodiscordant couples, particularly for couples in established, regular relationships.

AIDS Serodiagnosis↗
PubMed2005

Reporting possible sexual abuse: a qualitative study on children's perspectives and the context for disclosure.

OBJECTIVE: The present study investigated the context in which children were able to report their child sexual abuse experiences and the children's views as to what made it difficult to talk about abuse and what helped them in the disclosing process. The aim was to study disclosures as they were occurring in their natural settings. METHOD: Data were obtained from therapeutic sessions and follow-up interviews from 20 families with 22 children. These children had said something that made their caregivers concerned about ongoing child sexual abuse. Qualitative analysis was conducted to capture the children's and caregiver's perspectives of the disclosure process. RESULTS: The children felt it was difficult to find situations containing enough privacy and prompts that they could share their experiences. They also were sensitive to others reactions, and whether their disclosures would be misinterpreted. When the children did disclose they did it in situations where the theme of child sexual abuse was in some form addressed or activated. The results indicate that disclosure is a fundamentally dialogical process that becomes less difficult if the children perceive that there is an opportunity to talk, and a purpose for speaking, and a connection has been established to what they are talking about. CONCLUSIONS: It is difficult for children to initiate a conversation about something secret, confusing and distressful, and where there are few conversational routines in a family for talking about such themes. Children also are sensitive to the needs of their caregivers and fear consequences for their family and offender. Children need a supportive structure or scaffold in order to reveal their experiences of child sexual abuse.

Adolescent↗
PubMed1997

Interim rules for amending ERISA disclosure requirements for group health plans; approval of information collection requirements--DoL. Interim rules; approval of information collection requirements.

On April 8, 1997, the Department of Labor published interim final rules governing disclosure requirements for private sector group health plans (62 FR 16979). The rules implemented changes to made to certain provisions of the Employee Retirement Income Security Act of 1974 (ERISA), enacted as part of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the Newborns' and Mothers' Health Protection Act of 1996 (NMHPA). In the April 8 publication, the Department submitted its revision of the currently approved collection regarding Summary Plan Description requirements under ERISA to the Office of Management and Budget (OMB) for emergency review under the Paperwork Reduction Act of 1965 (PRA 95). This document amends the April 8 Federal Register document to properly display the OMB control number, 1210-0039.

Career Mobility↗
PubMed1995

Ethnicity and attitudes toward patient autonomy.

OBJECTIVE: To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making. DESIGN: Survey. SETTING: Thirty-one senior citizen centers within Los Angeles County, California. RESPONDENTS: A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N = 800). MAIN OUTCOME MEASURES AND RESULTS: Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%). Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making. CONCLUSIONS: Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.

Black or African American↗
PubMed2006

[Breaking bad news].

Breaking bad news is a difficult task of the physician. With three short records of cancer patients frequent difficulties and errors in the disclosure of diagnosis and prognosis are highlighted. In addition to its medical definition "cancer" has also a metaphoric meaning, which may substantially compromise the communication between patient and physician. Therefore the term cancer has to be explicitly used in talking to the patient and its current meaning for the patient has to be clarified. In estimating the prognosis with the patient precaution is essential since wrong predictions may geopardize the confidence of the patient in this physician substantially and even compromise further treatment. Breaking bad news is not a one way communication. Patient reactions have to be acknowledged, understood and catched up in a supportive way.

Adult↗
PubMed2005

Genetic risk assessment for adult children of people with Alzheimer's disease: the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study.

As genetic risk factors continue to be identified for common, complex adult-onset diseases, it will become increasingly important to understand if, how, and when to translate these discoveries into clinical practice. This article provides an overview of and results to date from the REVEAL study, a multisite randomized clinical trial (n = 162) examining the impact of a genetic risk assessment program, including apolipoprotein E genotype disclosure, for adult children of people with Alzheimer's disease. The study's rationale and procedures are described, including the generation of numerical lifetime risk curves for use in the education and counseling protocol. Findings are summarized across numerous study questions, including (1) who seeks genetic risk assessment and why, (2) how apolipoprotein E results affect risk perceptions, (3) the psychological impact of genetic risk assessment, and (4) how risk information affects participants' subsequent health and insurance behaviors.

Age of Onset↗
PubMed1997

[A study on disclosure by HIV positives by use of simulation using case vignettes].

AIDS patients/HIV positives have been increasing in Japan, but a large proportion of university students, who have high risk sexual behavior, are not aware of the danger of HIV infection. Because of little disclosure by AIDS patients/HIV positives in Japan, the students have a poor chance of knowing of their risk in sexual behavior situations. Discrimination or prejudice toward AIDS patients/HIV positives has suppressed disclosure. However, as the real risk changes of disclosure is unknown, a simulation study, using case vignettes, was carried out to measure risks. A total of 1,128 university students (487 male and 641 female) were asked to read one of six vignettes describing HIV positives, that consisted of three infection routes (one by blood preparation and two by sexual intercourse) with disclosure or without disclosure. After reading a vignette, they answered questions about the images of HIV positives and their attitudes to him or her. As a result of reading these vignettes, friendly images were enhanced and the disagreeable images were decreased, but students' attitudes were unchanged. Significant differences were recognized in attitudes concerning responsibility for the infection and sympathy toward HIV positives, depending on the infection routes (blood preparation or sexual intercourse). Female students had a tendency to be more favorable to HIV positives than the male students. This simulation study showed the difficulty of changing students' attitudes regardless of the image of HIV positives, and demonstrated the need for effective action toward reducing discrimination or prejudice.

Adult↗