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PubMed2002

[Disclosure of a diagnosis of childhood autism and parents' acceptance of the disability].

Mothers of 14 children (10 boys, 4 girls) with childhood autism answered the self-report questionnaire regarding the disclosure of a diagnosis of autism and their acceptance of the disability. The children's mean age at the study was 8.6 years, and their ages at the time of the disclosure and acceptance were 4.0 and 5.2 years, respectively. The age at acceptance exhibited a statistically significant positive correlation with the age of disclosure indicating that early disclosure was related to early acceptance. The results obtained in the questionnaire suggested that the increased understanding of autistic behavior, the accumulated experience as to how to communicate with their own child and the existence of a self-care group to support the parents were important factors for the acceptance of the disability. The significance of the professionals' sympathetic manner at the time of disclosure, full explanation of the disability, instruction as to how to cope the disability and providing the information on social resources available in the local district was also discussed in relation to the acceptance of the disability.

Autistic Disorder↗
PubMedDate not supplied

Disclosing HIV status: are mothers telling their children?

OBJECTIVE: Mothers living with HIV face a complex set of child-rearing decisions, often within the context of many competing stressors. One difficult decision for HIV-infected mothers is whether to disclose their HIV status to their children. The purpose of this study is to provide information to HIV-affected families and the professionals working with them as they approach disclosure-related decisions. METHODS: Eighty-seven HIV-infected African American mothers and one of their children who was not HIV-infected were separately interviewed on two occasions. Mothers reported whether they disclosed their HIV status to the child and provided their assessment of the child's functioning. Children also completed an assessment of their functioning. RESULTS: Results revealed that less than one-third of mothers disclosed their HIV status to their children. Disclosure was associated with mother's income level and perceived severity of physical symptoms. In addition, children disclosed to were more often older and female. Contrary to expectation, disclosure was not related to child functioning. CONCLUSIONS: Professionals should note the low rate of disclosure among these families. In the absence of conclusive data regarding impact on child functioning, professionals must remain aware of the complexity of disclosure-related decisions when working with HIV-affected families, particularly in terms of the family and cultural milieu within which families operate.

Adult↗
PubMed1998

Patients' assessment and recall of surgical information after laparoscopic cholecystectomy.

BACKGROUND: While patients' needs for adequate preoperative information are generally recognized, data evaluating the effectiveness of the consultation before laparoscopic cholecystectomy have not been published until today. This prospective study was performed to investigate the success of preoperative information. METHODS: A combination of oral and written information was given to all patients in two interviews. Information concentrated on indications for surgery, operative procedures, and risks. Patients were asked to answer questionnaires 5 days after the operation. RESULTS: From January 1996 to January 1997, 200 patients were interviewed. Ninety-seven percent indicated to wish detailed information. Eighty-four percent indicated a high level of satisfaction with the presented information. While the levels of knowledge concerning indications for surgery and procedures were satisfactory in 85 and 51% respectively, only 30% were able to name at least one risk factor of laparoscopic cholecystectomy. CONCLUSION: This study demonstrated that patients' evaluation of their surgical knowledge and the process by which it was communicated to them did not correspond to their ability to recall this information after surgery.

Adolescent↗
PubMed1993

On being a whistleblower: the Needleman case.

We believe that members of the scientific community have a primary obligation to promote integrity in research and that this obligation includes a duty to report observations that suggest misconduct to agencies that are empowered to examine and evaluate such evidence. Consonant with this responsibility, we became whistleblowers in the case of Herbert Needleman. His 1979 study (Needleman et al., 1979), on the effects of low-level lead exposure on children, is widely cited and highly influential in the formulation of public policy on lead. The opportunity we had to examine subject selection and data analyses from this study was prematurely halted by efforts to prevent disclosure of our observations. Nevertheless, what we saw left us with serious concerns. We hope that the events here summarized will contribute to revisions of process by which allegations of scientific misconduct are handled and that such revisions will result in less damage to scientists who speak out.

Biomedical Research↗
PubMed2004

Health plan members' views about disclosure of medical errors.

BACKGROUND: Various authorities and national organizations encourage disclosing medical errors, but there is little information on how patients respond to disclosure. OBJECTIVE: To examine how the type of error, severity of adverse clinical outcome, and level of disclosure affect patients' responses to error and disclosure. DESIGN: Mail questionnaire survey (8 versions were developed) varying 3 factors in a completely crossed, randomized, factorial design. Each questionnaire included a vignette describing 1) a medical error (failure to check for penicillin allergy or inadequate monitoring of antiepileptic medication); 2) an associated clinical outcome (life-threatening or less serious); and 3) a physician-patient dialogue, with either full disclosure (acceptance of responsibility and an apology) or nondisclosure (expression of regret without acceptance of responsibility or an apology). SETTING: New England-based health plan. PARTICIPANTS: Random sample of 1500 adult members received the questionnaire, with a 66% response rate. MEASUREMENTS: Likelihood of changing physicians, likelihood of seeking legal advice, ratings of patient satisfaction, trust and emotional reaction in response to a vignette and dialogue, and views on medical error and disclosure. RESULTS: Full disclosure reduced the reported likelihood of changing physicians and increased patient satisfaction, trust, and positive emotional response. Full disclosure reduced the reported likelihood of seeking legal advice in only 1 error-and-outcome vignette. In the other vignettes, the percentage of patients indicating that they would seek legal advice was relatively high even with full disclosure. Almost all respondents (98.8%) wanted to be told of errors, most (83%) favored financial compensation if harm occurred, and few (12.7%) favored compensation if no harm occurred. LIMITATIONS: Since the study was done in the context of a managed care plan in one geographic area, it could not assess whether the results are generalizable to other populations. In addition, it could not determine whether responses to the simulated situations used predict responses to real situations. CONCLUSIONS: Patients will probably respond more favorably to physicians who fully disclose medical errors than to physicians who are less forthright, but the specifics of the case and the severity of the clinical outcome also affect patients' responses. In some circumstances, the desire to seek legal advice may not diminish despite full disclosure.

Adult↗
PubMedDate not supplied

Full disclosure.

The new regulations governing physician incentives in managed care organizations are out, and while they might prove to be another pit of paperwork, they might also make managed care easier to swallow for consumers.

Capitation Fee↗
PubMed1987

"Informed consent" and disclosure of risks in medical treatment: some recent developments.

This paper discusses the implications for the doctor/patient relationship of the House of Lords' decision in Sidaway v Royal Bethlem Hospital (1985). In this decision the House of Lords rejected the "informed consent" doctrine developed in the United States in relation to the doctor's duty to disclose risks involved in medical procedures, favouring an approach in which the matter of disclosure is treated as an aspect of the doctor's duty of care towards the patient. The paper seeks to criticize this approach on the basis that it does not give sufficient protection to the patient's right to decide whether to consent to medical procedures.

England↗
PubMed1997

Informed consent in orthodontics.

Informed consent is a process of communication between a health care provider and patient that educates the patient as to the patient's needs and the potential solutions for those needs, and leads to the endorsement of a health care treatment plan. A claim of lack of informed consent may be brought by a patient when there is a perceived failure in the disclosure of adequate information to make a reasoned decision whether to consent to treatment. This article provides the foundation of the informed consent doctrine, delineates the essential elements of a lack of informed consent claim, and identifies the parties and their roles in the informed consent process.

Humans↗
PubMed2005

Health effects of written emotional disclosure in adolescents with asthma: a randomized, controlled trial.

OBJECTIVE: To test the effects of written emotional disclosure on the health of adolescents with asthma and to examine how language in disclosures predicts outcomes. METHODS: We randomized 50 adolescents with asthma to write for 3 days at home about stressful events (disclosure) or control topics. At baseline and 2 months after writing, we assessed symptoms, affect, disability, internalizing behavior problems, and lung function; parents independently rated internalizing behavior and disability. RESULTS: Compared with control writing, disclosure writing led to improved positive affect and internalizing problems. Disclosure also decreased asthma symptoms and functional disability among adolescents with baseline elevations of these difficulties. Lung function was not changed. Disclosures with more negative emotion, insight, and causal words--and increased causal or insight words over days--predicted improved health. CONCLUSIONS: Written emotional disclosure improves emotional and behavioral functioning among adolescents with asthma, particularly those whose writings suggest emotional processing and cognitive restructuring.

Adolescent↗
PubMed2003

Cancer patients' awareness about their diagnosis: a population-based study.

BACKGROUND: The aim of the study was to evaluate Norwegian cancer patients' awareness of their prior cancer diagnosis in a general population-based study. METHODS: A cross-sectional population-based study of cancer patients' responses to the index question: 'Do you have or have you had cancer?' was carried out. We assessed correctness of the response in relation to cancer site, date of diagnosis, marital status, age and education. Smoking was chosen as a marker of health awareness. A total of 65,330 persons participated in the Nord-Trøndelag Health Survey (HUNT-II), performed in 1995-1997. The database of HUNT-II was merged with the Cancer Registry of Norway (CRN), thus identifying each of the 2983 (4 percent) participants with an invasive cancer diagnosis. RESULTS: Excluding basal cell epithelioma, a total of 20 percent of the patients denied their prior cancer diagnosis. This group consisted mainly of men (54 percent) and those who were diagnosed as very young or as elderly. More smokers than non-smokers were unaware of their prior malignancy (24 percent versus 20 percent). CONCLUSIONS: A 20 percent rate of patients who denied their former malignancy is surprisingly and unacceptably high. Disclosure of a cancer diagnosis should help the patient to develop increased health awareness. It should enable a person to report his or her former cancer diagnosis when necessary.

Adult↗
PubMed1998

The evolving duty to disclose the presence of genetic disease to relatives.

Under the aegis of the Human Genome Project, research laboratories are identifying the genetic bases of human diseases almost daily. This explosion in molecular biology has raised many medical-legal issues about genetic information, such as privacy, discrimination, and insurability. Less appreciated is another issue that faces physicians who deal with genetic information in their practices--their duty to disclose a genetic disease to relatives of their patients who have the disease. Few cases have addressed the issue directly, and there has been little statutory and policy development in this area. However, because a physician's diagnosis of a genetic disease could have such a profound impact on the patient's relatives, there is a developing duty to consider disclosing genetic information to relatives. The case law and policy that support such disclosure reflect the evolution of medicine and the law away from paternalism toward an expanded concept of legal and moral duty. Since genetic information is presumed to be confidential by the law, as is essentially all medical information, guidelines need be developed regarding a physician's duty to disclose a genetic disease to a patient's relatives. These guidelines should consider the patient, the genetic test, the disease, and the third-party relative. Disclosure should be considered for a disease that is serious or fatal, treatable or curable, and transmitted dominantly with high penetrance. Specifics notwithstanding, these policies should be developed by physicians who care for patients and their families, not by lawyers and ethicists with no clinical training.

Ethics, Medical↗
PubMed2006

Clinical experiences of students with dyslexia.

AIM: This paper reports a study exploring the clinical experiences of student nurses with dyslexia and its potential influence on their practice. BACKGROUND: Widened access to university education has meant an increase in the number of students with dyslexia. A limited number of studies have explored the academic experiences of dyslexic student nurses. However, nursing students in the United Kingdom spend 50% of their programme in practice settings, and there are no studies detailing their clinical experiences. METHOD: This qualitative exploratory study involved tape-recorded interviews with a convenience sample of 18 nursing students with a formal dyslexia diagnosis. Data were collected in 2003-2004 and were analysed using thematic analysis. FINDINGS: Participants described a number of personalized approaches to managing their difficulties in practice. Whilst many of these may be useful to non-dyslexic students, descriptions of, for example, avoiding answering the telephone, were inappropriate. Some participants contended with discrimination and ridicule, often choosing not to disclose their disability. Less acute clinical environments appeared to provide more satisfying working experience, and this factor may be influential in shaping future career options. Participants valued more time and an undisturbed place to complete clinical documentation. Heightened self-awareness promoted patient safety as the major concern for study participants. Positive aspects of dyslexia were never raised or acknowledged by participants. CONCLUSION: The clinical setting provides a challenging environment for nursing students with dyslexia, who find personalized ways to manage their disability. A dyslexia diagnosis continues to carry a stigma that may result in non-disclosure, with implications for the level of support available. Greater awareness of the practice-specific needs of such students is required to ensure appropriate support and public safety.

Adaptation, Psychological↗
PubMedDate not supplied

Nonepileptic seizures: reframing the diagnosis.

PROBLEM: Protocols for disclosing the diagnosis of psychological pseudoseizures have been developed. However, outcomes have not been carefully studied. METHOD: Using a retrospective design, the investigators evaluated the outcomes by interviewing patients 2 years after diagnosis who received the diagnosis using a specific protocol. FINDINGS: There was a reduction in symptoms demonstrated by reports of lessened intensity of events or actual reduction in the number of events in 86% of those interviewed. CONCLUSION: This protocol proved helpful in the acceptance of the diagnosis and improved adherence to the treatment recommendations after disclosure of the diagnosis.

Adult↗
PubMed1993

Of whistleblowers, investigators, and judges.

CONCLUSION: Deliberate misrepresentation continues. Needleman attacks the whistleblowers, the NIH, and his own University to deflect attention from the indications of misconduct in his research. Federal agencies base policies on his research and on his assertions regarding the purported effects of low-level lead exposure on children. The policies divert resources and attention from the real needs of children. Misconduct issues will ultimately be resolved by the ORI and the courts. Public policy issues may require reconsideration in light of further evidence.

Biomedical Research↗
PubMed1997

Conscience and conscientious actions in the context of MCOs.

Managed care organizations can produce conflicts of obligation and conflicts of interest that may lead to problems of conscience for health care professionals. This paper provides a basis for understanding the notions of conscience and conscientious objection and offers a framework for clinicians to stake out positions grounded in personal conscience as a way for them to respond to unacceptable pressures from managers to limit services.

Complicity↗