SEARCH · Search PubMed
Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.
Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.
To gain some insight as to how people feel about the disclosure of a hidden physical disability to a potential employer, 821 students were queried. The results suggest that about 15 percent would disclose the disability initially, 30 percent would divulge the information only when they felt secure on the job, while 30 percent would not disclose the disability at all.
Gay and bisexual men were asked if they had disclosed their sexuality to family members, heterosexual friends, gay friends, coworkers, health care workers, and members of their church; if they had been associated with groups made up of gays, bisexuals, and lesbians; and if they had gay/bisexual friends. White men were much more likely to disclose their sexuality, to have associated with groups and to have gay/bisexual friends. As education increased, white men were more likely, and African American men less likely, to disclose sexuality and associate with groups. Having gay/bisexual friends increased with education with both groups. The difference in disclosure can be traced to the higher social stigma apparently attached to being gay in the African American community, which may be exacerbated for more educated men. As a result, African American gay men may be less likely to participate in the fight against HIV/AIDS.
A type of hereditary colorectal cancer (CRC) known as hereditary nonpolyposis colorectal cancer (HNPCC) is associated with MLHI and MSH2 gene mutations. This study consists of a pilot, cross-sectional study of 50 individuals who were engaged in the genetic testing process for HNPCC. The study investigated the motivations and attitudes around genetic testing and current psychosocial functioning through the use of standardized measures, as well as obtained information on disclosure patterns associated with test results. The mean age of the sample was 44.3 years. (SD = 15.0). Twenty-three individuals were identified as "carriers" (13 had a previous history of CRC), seven were "non-carriers" and 20 individuals were still awaiting test results. The primary motivations for participating in genetic testing were similar to previous reports and included: wanting to know if more screening tests were needed, obtaining information about the risk for offspring and increasing certainty around their own risk. The psychosocial scores demonstrated that a subgroup of individuals exhibited distress, with greater distress for those individuals awaiting results or testing positive. There was a high level of satisfaction associated with the experience of testing. Individuals in this study tended to disclose their test results to a variety of family and non-family members. Disclosure was primarily associated with positive experiences however, some individuals reported regret around disclosure of their results. These preliminary findings should be further explored in a larger prospective study design over multiple time points.
A clinical scenario is described where an anaesthetist is concerned about the seemingly high risk/benefit ratio relating to laparoscopic versus standard inguinal hernia operations. Some options for further action by the anaesthetist are introduced. The remainder of the paper explores the question of who can legitimately assess the acceptability of risk/benefit ratios, and defends the use of practice guidelines at the expense of so called clinical freedom. It is argued that respect for persons is not breached by limiting the treatment options offered to patients to those therapies which have a 'reasonable' risk/benefit ratio. This 'reasonableness' is context dependent, and should be properly decided by those with expertise in the field.
Explore the source record for details and available documents.
Explore the source record for details and available documents.
Quality of life (QOL) of 179 patients with hematological malignancies, hospitalized for induction chemotherapy, allogeneic or autologous bone marrow transplantation (BMT), was analyzed on three time points at 10 days interval after completion of the cytotoxic treatment. The instruments used were the EORTC questionnaire--with modifications of the physical and social functioning subscales, in order to adapt to the prolonged stay in the hospital--, the Hospital Anxiety and Depression Scale, and a specifically designed leukemia/BMT module. The psychometric properties of the scales were confirmed, except for the physical functioning and social subscales, for which further methodological studies are warranted. A relatively high frequency of somatic symptoms, fatigue, anxiety and depression was observed, with a trend to improvement at the end of hospitalization. The overall self-assessed QOL correlated mainly with fatigue and emotional disorders but not with the somatic symptoms. Randomized disclosure of the collected information to the staff allowed them to better identify patients who needed a psychotherapeutic intervention, but did not influence the psychological and QOL outcomes.
This study examines how family support affects people living with HIV/AIDS (PLHA) in China. In-depth, semi-structured interviews (n=30) were conducted with people living with HIV/AIDS who were infected through different routes (e.g., intravenous drug use, sex) and of different age groups. Findings showed that all of the participants were in great need of help and the primary source of support came from their families. Family support included financial assistance, support in the disclosure process, daily routine activities, medical assistance, or psychological support. This study illustrates that the support provided by family makes multiple levels of positive impact on people living with HIV/AIDS, suggesting the importance of including families in HIV/AIDS interventions.
To examine Norwegian physicians' attitudes to informing patients of a diagnosis of cancer, a random sample of 1467 were surveyed. The respondents rated their level of agreement to 14 statements, and the responses were analysed by chi-squared statistics. 990 physicians responded (67%). Only 30.5% of the responding physicians had treated more than 10 cancer patients the previous year, which included 7.8% who had treated more than 50. 40.4% had treated none. The great majority (81%) preferred full information of the diagnosis. Physicians with increasing age preferred relatives not being present and gave priority to factual information and informing patients with the same diagnosis identically. Hospital physicians (39.5%) more often preferred other health professionals being present than physicians in private practice (18%) (P < 0.001). Number of cancer patients treated was not associated with attitudes toward the disclosure of information. Norwegian physicians prefer revealing the cancer diagnosis to patients, but have divergent opinions about how to do so. Some of these indicate suboptimal information-giving.
BACKGROUND: Quality of life (QOL) is an important component of evaluation in oncology. Usually, QOL is used in phase III studies to compare two treatments. The aim of this trial was to evaluate the impact of the disclosure of the diagnosis of cancer on QOL by using the European Organisation for Research and Treatment of Cancer core Quality of Life Questionnaire (EORTC QLQ)-C30 questionnaire and the supplemental lung cancer-specific module QLQ-LC13. PATIENTS AND METHODS: Patients hospitalised for exploration of an abnormal chest X-ray, with no previous history of cancer, a performance status < or =2, and able to fulfil the questionnaire were eligible. The patients answered the questionnaire two times: before (Q1) and after (Q2) the disclosure of the diagnosis. RESULTS: Seventy patients answered at Q1 and Q2. After the disclosure, some scores deteriorated: arm pain (P=0.009), physical functioning (P=0.01), role functioning (P=0.008), emotional functioning (P=0.0001) and social functioning (P=0.012), whereas the patients' own assessment of global QOL (item global QOL in functioning scales) did not show the same evolution. CONCLUSION: Disclosure of the diagnosis had an impact on social and emotional QOL. Patients with lung cancer need psychological support at the beginning of their disease.
Nurses' experiences of being present with a patient receiving a diagnosis of cancer This paper reports the findings of a study which describes the experiences of nurses who were present with a patient when they received a diagnosis of cancer, cancer recurrence or prognosis of terminal cancer. Semi-structured interviews were conducted with six nurses who had experience of caring for patients with cancer in an acute surgical setting. Data were analysed using a phenomenological descriptive approach. Participants' descriptions revealed the following seven core themes: 'What if it was me?'; divergent feelings; being there; becoming closer; method of disclosure; time as an influence and learning by reflection. Possible implications for nursing practice and education are discussed and recommendations are made for future research.
OBJECTIVE: To investigate whether notifying injecting drug users (IDU) of their positive HIV serostatus contributes to suicide and overdose mortality risk. DESIGN: Members of a cohort of IDU, recruited since December 1985, who first learned their HIV serostatus after study entry but before December 1992, were studied for incidence of deaths due to suicide and overdose. METHODS: Incidence of mortality due to suicide/overdose was calculated from date of first HIV test result disclosure until the end of follow-up or diagnosis of AIDS. RESULTS: Eighty-six HIV-positive and 252 HIV-negative IDU were included with median follow-up times of 4.3 and 4.0 years, respectively. Seven suicides and 10 deaths from overdose were recorded. High suicide/overdose risk shortly after test result notification was not found among HIV-positive IDU. Only one out of eight HIV-positive IDU who died of suicide/overdose died within 6 months of first disclosure. The overall suicide/overdose mortality rate was higher for HIV-positive than HIV-negative IDU; the rate ratio being 2.46 [95% confidence interval (CI), 0.95-6.39] or 2.04 (95% CI, 0.77-5.39) after control for confounders. CONCLUSIONS: Notifying IDU of their positive HIV serostatus does not appear to lead to a sudden and substantial rise in suicide/overdose deaths. Although death from suicide/overdose is more common among HIV-positive than HIV-negative IDU, this difference is likely to result from factors other than test result disclosure. Therefore, provided that appropriate counselling is offered, we see no reason to discourage voluntary HIV test result notification for fear of inducing suicide in HIV-infected IDU.
INTRODUCTION: Traditionally, doctors in Nepal do not discuss a diagnosis of malignancy with their patient. Instead, discussion is more likely to take place with family members, who then filter the information that the patient receives. This study aims to quantify the amount of actual disclosure of a cancer diagnosis that takes place, through a survey of patients admitted for hospice care, and to compare this with preferences regarding cancer disclosure from a survey of the general population. OBJECTIVES: (a) To determine what proportion of patients, referred for hospice care with advanced cancer, who were aware of their disease and prognosis. (b) To determine the attitude among the public toward disclosure of information of a diagnosis of malignancy, if they or a close relative were to develop the disease. (c) To observe if educational attainment impacts on issues related to disclosure of a cancer diagnosis. METHOD: (a) Prospective survey of patients with cancer admitted to 'Hospice Nepal' over a one-year period, recording details of how much patients knew of their diagnosis. (b) Survey of the general population in and around the Kathmandu valley, with a questionnaire asking the following two questions: If you were diagnosed with cancer would you like to be informed of your cancer? If a close relative was diagnosed with cancer would you like them to be informed of their cancer? RESULTS: A survey of the 96 patients admitted to 'Hospice Nepal' over the one-year study period showed that 19 (20%) of the patients had knowledge of both their disease and the stage of the disease; 16 (17%) knew that they had cancer but did not know about their disease progression or prognosis; 61 (63%) were unaware of the nature, seriousness or prognosis of their disease. A survey of the general population in Kathmandu showed 204 (80%) of the 256 respondents wanted to be informed if they were diagnosed with cancer, even if it was incurable; 44 (17%) wanted to be informed of such a diagnosis only if it was curable; and 8 (3%) did not want to be informed of such a diagnosis at all. CONCLUSION: In Nepal, there is a clear disparity between what patients would like to be told should they develop cancer, and what patients with cancer know about their disease. In the Asian context, it is not unusual to be advised that western practices of disclosure are inappropriate, yet this study, conducted in a very non-western culture, shows that the patient's wish to know about their illness is a desire which can transcend cultural and ethnic differences.
This article explores the issue of reciprocal disclosure of expert evidence in Canada and the attendant responsibility of the expert witness to remain true to his or her own science. Two recent recommendations made to the government of Ontario in this regard are closely scrutinized. The author is critical of those who advocate the concealment of the existence of an expert witness until the last possible moment at trial and of those experts who are content to lie in wait. Additionally, the role of the expert witness in a criminal prosecution is examined to see if standard retainer agreements tend to stifle the quest for the truth.
AIM: To determine students opinions about diagnosis disclosure to the patient and other interested parties. METHODS: During 2000/2001 academic year, an anonymous survey was conducted among the first-year (200 questionnaires) and sixth-year medical students (200 questionnaires) at the Zagreb University School of Medicine. Students were asked what they would say about the diagnosis to the patient, patients family, friend, employer, colleague from work, health insurance agent, another physician, or medical student, if the diagnosis was inoperable lung carcinoma in a 20- and 66-year-old patient vs bacterial pneumonia in patients of the same age. The possibilities were to tell the truth, lie, or refuse to disclose the diagnosis. RESULTS: The response rate was 55%. Students would disclose the true diagnosis to the patient, patients family, friend, and employer in case of benign disease more often than in case of malignant disease (p<0.001). Patient's age did not affect students' opinions. Most students would rather refuse to say anything than lie if they would not want to say the truth. Students would more often tell the truth to the patient and patient's family then to a health insurance agent, another physician, or medical student, less often to patient's friend and employer, and rarely to the patient's colleague from work. First-year students would generally tell the truth more often than sixth-year students (p<0.001). There were almost no differences in the opinions between male and female students. CONCLUSION: The strongest influence on students choice on whether or not to disclose the diagnosis had the severity of disease, person they would disclose the information to, and the academic year they attended, implicating that such important ethical issues should be discussed during the studies.
AIM: The aim of the study was to describe the process of disclosing HIV/AIDS problem in the family to children and to explore its possible determinants. MATERIAL AND METHODS: The investigations were carried in 37 children, aged 4-16 years, living in families with HIV/AIDS problem (25 children were HIV+ and 12 HIV-) and in their parents/ caregivers. Empirical material consisted of protocols of clinical interviews with parents and children, observation of child's behaviour in different contexts and results of selected projective tests. RESULTS: Only six children (3 were HIV+ and 3 HIV-) had been informed about the problem of HIV/AIDS by the parents and could freely talk with them on that subject. The most important reasons impeding the process of disclosure according to the parents were: risk of depriving the child of a happy childhood and fear that the child may not be able to keep the family secret. As a result of cluster analysis four distinct subgroups of the children under study were discerned. The largest number of emotional and behavioural problems was noted in the case of older, infected children, who were quite aware of their serious medical condition and whose parents were in the phase of secrecy or exploration in the process of disclosure. CONCLUSIONS: The process of disclosing HIV/AIDS problem in the family by parents to children requires taking into account many different factors. Providing professional psychological services may be of great importance in many instances.
Cancer diagnosis presents a disclosure dilemma for physicians, holding in tension the physician's obligation to provide diagnosis and its impact on the patient. To address this dilemma the traditional approach of physicians, typified as the psychological-empirical approach to hope, needs to be complemented by a patient-oriented approach, described as the phenomenological hermeneutics of hope.
As part of a larger study aimed at enhancing the development of young children with Down syndrome, information was collected regarding the time at and circumstances in which 32 couples were told of their child's handicap. In addition, the level of their present acceptance or rejection of their child in the family was assessed. The findings indicated that early disclosure of the handicap was one of the most important factors associated with parental acceptance and nurture of a mentally handicapped child. Other factors of importance were the nature of the information given by the informant and the position in the family of the handicapped child.