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PubMedDate not supplied

Experiences of disclosure in women infected with HIV.

In this qualitative focus group study, we explored issues of disclosure for women infected with HIV. The sample included 19 women who participated in one of four focus group sessions. Participants talked about and described their experiences sharing information about their HIV infection with others. Content analysis was used to code the data and identify major issues. Participants uniformly expressed concern about disclosing their HIV status because they expected and feared negative responses from others. Descriptions of disclosure revealed an evaluative process involving an analysis of potential risks and benefits. Three themes that represent concerns about disclosure were identified: discrimination, confidentiality, and the context of disclosure. Based on the findings, we concluded that these concerns are important factors influencing disclosure decisions and the use of supportive services and resources. The findings have implications for designing interventions to assist women in coping with the diagnosis of HIV and to promote their quality of life.

Adaptation, Psychological↗
PubMedDate not supplied

Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes.

BACKGROUND: Children with perinatally acquired HIV disease (PAHD) can be relatively symptom-free and live to school age and older. These children often confront their caregivers with questions about the illness and complex treatments; however, caregivers may try to avoid disclosing the diagnosis of PAHD to the child. PURPOSE: To generate a substantive theory that describes and explains how family caregivers manage diagnosis disclosure to a child who has PAHD. METHOD: Using grounded theory, a substantive theory was constructed based on the accounts of 18 ethnically diverse families. Eight families had 10 children with PAHD who had been told their diagnosis. Ten families had 10 children with PAHD who had not been told their diagnosis. RESULTS: The basic social psychological problem was identified as caregiver readiness to disclose the diagnosis. When the Time Comes was identified as the central phenomenon linked to the problem of caregiver readiness. Causal conditions, intervening conditions, and strategic responses of caregivers and children were discovered and are inextricably linked to the central phenomenon. CONCLUSIONS: The process by which family caregivers respond to diagnosis disclosure to children with PAHD is based on the perceived self-readiness of the caregiver to disclose the diagnosis and illness-related information to their child.

Adolescent↗
PubMed1999

Disclosing complementary and alternative medicine use in the medical encounter: a qualitative study in women with breast cancer.

BACKGROUND: Despite recent findings that patients who use complementary and alternative medicine (CAM) typically choose not to mention this to their physicians, little is known about the reasons for this lack of communication. Understanding the reasons for nondisclosure of CAM use is critical to improving physician-patient communication and patient care. METHODS: We are conducting a 5-year prospective cohort study consisting of 4 interview cycles. The multiethnic, population-based sample consists of 86 San Francisco residents with recently diagnosed breast cancer (response rate = 87%). Findings are determined using qualitative analysis of transcribed interviews. RESULTS: At initial contact, 72% of the participants were using at least 1 CAM therapy for breast cancer. Six months later, 65% of participants were using CAM. Of the women being treated by an alternative practitioner, 54% disclosed their CAM use to their physicians. Conversely, 94% discussed details of their biomedical treatments with their alternative practitioner. Reasons for not disclosing CAM use included anticipating the physician's disinterest, negative response, or unwillingness or inability to contribute useful information; the perception that the CAM therapies used were irrelevant to the biomedical treatment course; and the patients' views regarding the appropriate coordination of disparate healing strategies. CONCLUSIONS: Discussions of patients' CAM use are more poorly integrated into the medical encounter than discussions of biomedical treatment are with alternative practitioners. Patients' disclosure is often cautiously modulated, even by those who would welcome an open discussion with their physicians. Specific suggestions for discussing CAM use with patients are presented.

Adult↗
PubMed2004

Psychiatric morbidity among cancer patients and awareness of illness.

A significant proportion of cancer patients experience psychiatric morbidity. Potential predictors of psychiatric morbidity include patient disease-related factors and factors relating to the patient's environment. The aim of this study was to investigate the prevalence of psychiatric morbidity and the relationship between the clinical or personal factors, especially psychiatric morbidity, and awareness of cancer diagnosis among a group of Turkish cancer patients. A total of 117 cancer patients were assessed using the Structured Clinical Interview for DSM-IV (SCID), the Hospital and Anxiety Depression Scale (HADS) and the General Health Questionnaire (GHQ). Of these patients, 30% had a psychiatric diagnosis. Adjustment disorders comprised most of the psychiatric diagnoses. Awareness of the diagnosis of cancer, history of previous psychiatric disorders, pain and stress factors were correlated with psychiatric morbidity. Of the 117 patients, 64 (54.7%) were unaware of the diagnosis of cancer. Most of the patients (67.9%) who were considered to be aware of the cancer diagnosis stated that they had guessed their illness from the treatment process or drug adverse effects. Psychiatric morbidity was significantly higher in the patients who knew that they had a cancer diagnosis (P=0.03). These findings suggest that the awareness of cancer diagnosis is related to the presence of psychiatric morbidity. In particular, the understanding of the diagnosis indirectly may be stressful to the patient because it arouses suspicion about the cancer and treatment, and consequently can lead to psychiatric disturbance. In Turkey honest disclosure of the true diagnosis is still not common for cancer patients and it seems to be essential to improve this situation.

Academic Medical Centers↗
PubMed1994

Adult disclosure of sexual abuse: a primary cause of psychological distress?

There is evidence for a high incidence of childhood sexual abuse among adult psychiatric populations and some practitioners have noted a worsening of psychiatric symptomatology around the time of disclosure. Disclosure of abuse can result in hostile and rejecting responses from significant others in the victim's social support network. This paper surveys research evidence relating to the disclosure of abuse, and it is argued that for some adults, the disclosure of sexual abuse may be a primary cause of psychological distress, resulting in the dissolution of social support systems and increasing the individual's vulnerability to psychiatric disorder. The implications of the model for therapeutic practice are discussed.

Adult↗
PubMed2006

Differences between men who report frequent, occasional or no unprotected anal intercourse with casual partners among a cohort of HIV-seronegative gay men in Sydney, Australia.

Past research on unprotected anal intercourse with casual partners (UAIC) contrasts those who report no UAIC with any UAIC. This paper examines differences among three groups of men who had any UAIC on the basis of the number of UAIC acts reported in a six-month period, namely no UAIC (n = 507), occasional UAIC (1-5 acts, n = 251) and frequent UAIC (more than 5 acts, n = 148). The occasional UAIC group had values lying between those of the no- and the frequent-UAIC group. As compared with the frequent-UAIC group, men in the occasional-UAIC group were less likely to have a steady partner, held less favorable attitudes toward condoms and higher levels of HIV treatments optimism and were more likely to report some disclosure of serostatus to or by casual partners and a range of esoteric sexual practice. On the other hand, men in the no-UAIC group had lower levels of 'feeling bad' (distress) and were less likely to use drugs to enhance sexual pleasure in casual encounters. Disclosure of serostatus had a strong association with frequent UAIC and this finding calls for both more research and more community exploration of issues surrounding sexual decision-making.

Adolescent↗
PubMedDate not supplied

Disclosing individual genetic results to research participants.

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts.

Beneficence↗
PubMed2005

Disclosure of diagnostic errors: the death knell of retrospective pathology reviews?

Full disclosure of medical errors to patients is now widely seen as an essential component of error management, although its update into daily clinical practice is variable. Laboratory diagnostic errors are discovered in retrospective reviews of previous surgical and cytopathology cases. This quality assurance practice is a valuable tool of practice audit and change for both cytotechnologists and pathologists. Presently, these diagnostic errors are only reported to the clinician and patient if the new finding affects current patient management. Mandatory full disclosure of all diagnostic errors discovered in the retrospective review process would have a significant adverse impact on cytotechnologists, pathologists, the laboratory, the clinic, the institution, and insurers. Retrospective pathology review would become so burdensome that its survival would be in jeopardy-unless measures are undertaken to ameliorate the anticipated adverse consequences.

Diagnostic Errors↗
PubMed2004

Disclosure, reactions, and social support: findings from a sample of adult victims of child sexual abuse.

Information about abuse characteristics, disclosure, and current social support was collected through semistructured interviews and questionnaires from 122 adult women reporting exposure to child sexual abuse by someone close. Women who used an active disclosure strategy in childhood reported more physical and violent abuse. Moreover, women who reported more severe abuse had more often received negative reactions from the social network. Furthermore, a relation was found between current social support and positive-but not negative-reactions.

Adult↗
PubMed1992

Informed consent: is it a myth?

The issue of informed consent at it relates to neurosurgical professional malpractice liability and litigation has been of concern for 20 years or more. The problem persists, and the subject has been addressed by providing patient education with full disclosure regarding neurosurgical procedures. In the process of imparting informed consent, the authors studied the effectiveness of specific neurosurgical health care teaching. One hundred six persons undergoing anterior cervical fusion or lumbar laminectomy were instructed by a neurosurgeon and clinical nurse specialist with a master's degree in neurosurgery. Written testing was performed in each case immediately after a formal teaching session before surgery. Questions were simple and covered only four general topics: 1) diagnosis and surgical techniques; 2) operative risks; 3) postoperative care; and 4) goals and benefits relating to surgery. The mean score on testing immediate retention of information revealed a 43.5% overall performance rate. When patients were tested approximately 6 weeks later, the score dropped to 38.4%. This was statistically significant (chi 2, P less than 0.05). The authors encourage the concept of patient education. The data in the current study, however, suggest that the reasonable and prudent neurosurgeon making a concerted effort at patient education, with the assistance of a professional educator, cannot necessarily expect accurate patient or family recall or comprehension. Fulfillment of the doctrine of informed consent by neurosurgeons may very well be mythical.

Adult↗
PubMed1984

[Prognosis disclosure to the dying patient].

Different, partly contrary opinions exist as to the difficult and important problem, how far the physician may or must go in informing the patient and his nearest relatives about an infaust prognosis. The author makes his own position which was under consideration in the working team "Ethical Problems" of the GDR Society of Internal Medicine subject of a discussion.

Attitude to Death↗
PubMedDate not supplied

Disclosure of misattributed paternity: issues involved in the discovery of unsought information.

Kidney transplantation from living donors is generally a safe, effective form of renal replacement therapy. When evaluating potential living donors and their intended recipients, a careful assessment process is followed in order to ensure that ethical standards are upheld. During this assessment, important medical information with serious consequences, which was not being sought as part of the donor/recipient evaluation, may be discovered. The information may or may not be relevant to the decision to donate. However, such a discovery raises the difficult questions of whether or not there is an obligation to disclose the information, to whom does the information belong, and what process should be used to resolve the issue? We present a case that forced us to confront these questions and raised issues of truth telling, autonomy, paternalism, confidentiality, and the nature of the relationship between patients and health care professionals.

Ethics, Medical↗
PubMed2005

"A burden in your heart": lessons of disclosure from female preadolescent and adolescent survivors of sexual abuse.

OBJECTIVES: To enhance understanding of the sexual abuse disclosure process from the perspective of preteen and teenage survivors. To reconsider prominent models of the disclosure process in light of our findings. METHODS: We conducted a secondary analysis of data from four focus groups in which 34 preadolescent and adolescent female survivors of sexual abuse had been asked about their treatment experiences. Girls often recounted disclosing their victimization to others. Using the disclosure segment as our unit of analysis, we isolated 106 for study. During analysis, we wrote narrative summaries of each segment's significance, grouped these conceptually, and examined their interconnectedness. When synthesized, individual experiences of disclosing contributed to understanding the overall disclosure process. RESULTS: Three phases were identified: Self, where children come to understand victimization internally; Confidant Selection-Reaction, where they select a time, place, and person to tell and then weather that person's reaction (supportive or hostile); and Consequences (good and bad) that continued to inform their on-going strategies of telling. The actions and reactions of adults were significant and informed the girls' decisions. CONCLUSIONS: We advocate integrating existing theories and research into a model which views the disclosure process from the child's perspective and includes pre-disclosure and a post-initial public disclosure stages. The model conceptualizes disclosure as an iterative process in which children interact with adults and incorporate responses into their on-going decisions about telling (recant, deny, affirm, etc.). The combined model should recognize the concerns and position of adults as well as the perspective and logic of youth.

Adolescent↗
PubMed2000

Task and socioemotional behaviors of physicians: a test of reciprocity and social interaction theories in analogue physician-patient encounters.

The purpose of the present study is to assess social interaction and reciprocity theories as explanations for patient responses to a physician in a medical consultation. Social interaction theory predicts that patients mostly recognize and react to socioemotional behavior of their physicians due to a lack of understanding of physician task behaviors or a preoccupation with anxiety. Reciprocity theory predicts that patients recognize socioemotional and task behaviors of their physicians, and they respond to these behaviors in thematically similar ways. We examined these hypotheses by having subjects view one of four videotapes which varied in physician task behavior (thorough or minimum levels of explanation of etiology, symptoms, and treatment) and physician socioemotional behavior (high or low levels of concern and affection displayed verbally and non-verbally). Results supported the general proposition of social interaction theory in that high levels of socioemotional behavior of the physician increased measures of patient self-disclosure, trust, satisfaction, and likelihood of recommending the physician. Physician task behavior had no effect on patient response to the physician, a finding inconsistent with reciprocity theory.

Adult↗
PubMed2000

Women, violence, and HIV: a critical evaluation with implications for HIV services.

OBJECTIVE: Violence is highly prevalent among women with HIV. Determining whether HIV is causally related to violence, and whether risk for violence is increased by certain HIV prevention practices, has been difficult. METHODS: We review recent literature concerning (1) violence and HIV serostatus, including the risk for violence associated with disclosure of a positive serostatus, and (2) violence associated with requests that male sex partners use condoms. RESULTS: Studies suggest that women with or at risk for HIV come from populations that are also at risk for violence. Violence is not statistically increased among HIV-infected women compared to demographically and behaviorally similar uninfected women. However, for a small proportion of women, violence may occur around disclosure or in response to condom negotiation. CONCLUSIONS: Integrating violence screening and referral into HIV services could help many women obtain the assistance they need while minimizing the risk for violence that may be associated with partner notification or condom requests.

Adolescent↗