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PubMed1997

Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children.

OBJECTIVE: To investigate the patterns of disclosure and perceptions of human immunodeficiency virus (HIV) status in a group of HIV-infected elementary school-age children. DESIGN: A survey. SETTING: A referred care university hospital center. PATIENTS: All HIV-infected children born before August 31, 1985, and scheduled for ambulatory follow-up between 1984 and 1993 were eligible for the study. A total of 35 HIV-infected (21 asymptomatic and 14 symptomatic) elementary school-age children (aged 5-10 years) were examined between 1990 and 1993. MAIN OUTCOME MEASURES: Semistructured qualitative interviews were used, 1 with the children and 1 with their parents or caregivers. In addition, 3 drawings per child were also analyzed. RESULTS: Partial disclosure was observed in 14 (40%) of the children, and full disclosure of the diagnosis of acquired immunodeficiency syndrome was given to 6 (17%) of the children. Secrecy regarding serostatus was the strategy used by 15 (43%) of the parents or caregivers involving either complete nondisclosure (n = 8) or deception by means of attributing the symptoms to another condition, medical or other (n = 7). Perceived health status and clinical status differed for 11 (31%) of the children. Eight children did not identify any illness causality, and most of the others gave prelogical or concrete-logical explanations. Few children were aware of their parent's infection or disease. CONCLUSION: Human immunodeficiency virus-infected elementary school-age children were exposed to various disclosure patterns regarding their HIV infection or disease, and most children (26/35 [74%]) reported stressful experiences due to HIV regardless of the disclosure patterns.

Art↗
PubMed1988

Ethics and medical genetics in the United States: a national survey.

The approaches of 295 medical geneticists in the United States to 14 clinical problems and 3 screening situations that required a moral choice are summarized. These data are part of a survey of 682 geneticists in 19 nations. Of 490 U.S. geneticists asked to participate, 295 (60%) returned anonymous detailed questionnaires. There was strong (greater than 75%) consensus that preserving the mother's confidentiality overrides disclosure of true paternity; that conflicting test results, new/controversial interpretations of results, and ambiguous/artifactual results should be disclosed; that artificial insemination by donor, adoption, taking chances, contraception, sterilization, and in-vitro fertilization with a donor egg should be presented as reproductive options to carriers of disorders not diagnosable prenatally; that prenatal diagnosis should be performed for patients who refuse abortion and for maternal anxiety in the absence of medical indications; that screening in the workplace should be voluntary. There was no consensus about disclosure of a diagnosis of Huntington disease or hemophilia A to relatives at risk, against the patient's wishes, or about disclosure of parental translocations. Geneticists in the U.S. differed from 18 other nations in presenting surrogate motherhood as an option (67%); willingness to perform prenatal diagnosis for sex selection or refer (62%); and disclosure of XY genotype in a female (62%). Men were more likely than women to say that they would give directive counseling. Women were more likely than men to say that they would perform prenatal diagnosis for maternal anxiety or for sex selection.

Confidentiality↗
PubMedDate not supplied

Abuse disclosure in privately and medicaid-funded pregnant women.

Disclosure of abuse by pregnant women can vary depending on whether the woman is assessed directly by a trained interviewer versus written questionnaires, and if she is asked repeatedly during the course of pregnancy. One thousand pregnant women were enrolled in a randomized clinical trial designed to assess the effects of a nursing case management intervention on the mental and physical well-being of pregnant women experiencing or at risk for abuse. Thirteen percent of the total study participants reported current abuse and/or abuse within the past year, with only 2% of those reporting that the abuse occurred during pregnancy. The incidence of reported abuse was much higher among Medicaid-funded women (28.9%) than privately insured women (8.7%). Regardless of source of payment, women reporting abuse were significantly younger, less educated, nonwhite with lower income, and had significantly higher stress and lower self-esteem than women not reporting abuse. A high incidence of women reporting intimate partner violence described being choked on the Danger Assessment Screen (34%). We strongly urge that choking be added to routine screening questions used during pregnancy and that the Danger Assessment tool is used for further evaluation of women who screen positive. In addition, we believe another barrier to reporting abuse was fear of being reported to child protective services, contributing to the overall low rate of abuse disclosure.

Age Factors↗
PubMed2004

A closer examination of the structured written disclosure procedure.

The current study examined psychological and physical health outcomes of the written disclosure paradigm and the hypothesis that the principles of therapeutic exposure account for the beneficial effects of the paradigm. Participants were randomly assigned to either a written disclosure condition or a control condition. Reactivity to the writing sessions was examined using both subjective and physiological measures. Measures of psychological and physical health were completed before and 1 month after the sessions. Participants assigned to the disclosure condition reported fewer psychological and physical symptoms at follow-up compared with control participants, though reductions were clinically significant for only 1 outcome measure. Physiological activation to the 1st disclosure session was associated with reduced psychological symptoms at follow-up for disclosure participants. Subjective reports of emotional responding corresponded with physiological reactivity. Implications of these findings are discussed.

Adolescent↗
PubMed1993

Disclosure of terminal prognoses in a general hospital: the nurse's view.

Some of the issues which nurses confront when they deal with the disclosure of terminal diagnoses and prognoses to patients are explored. In such circumstances, the nurse must respond to the competing demands of patients, relatives and medical staff. The paper examines the way in which a group of experienced staff nurses in a general hospital accounted for their activities during and after the disclosure of a lethal diagnosis. In particular, it explores the ways in which nurses are included or excluded from decision making about disclosure by medical staff.

Attitude of Health Personnel↗
PubMed1996

Conflicts between physicians and patients in non-elective cesarean delivery: incidence and the adequacy of informed consent.

A study was undertaken in 372 consecutive patients undergoing non-elective cesarean delivery to explore the incidence and nature of conflicts between physician and patient surrounding the decision to undergo non-elective cesarean delivery; to examine the adequacy of informed consent at the time of non-elective cesarean delivery; and to describe the importance of a preventive ethics approach to non-elective cesarean delivery. During a 6-month interval, all patients who underwent non-elective cesarean delivery and their physicians were asked to take part in a survey in the early postpartum period concerning their response to recommendations for cesarean delivery. The survey included demographics as well as questions pertaining to informed consent and the presence and nature of patient-physician conflict. Of the 326 patients who were interviewed, 319 (98%) agreed to the recommendation for non-elective cesarean delivery and 7 patients (2%) initially disagreed. Reasons for disagreeing included: feared surgery (4 of 7), needed husband's approval (1 of 7), and questioned the medical necessity of surgery (2 of 7). In all 7 cases of initial disagreement, cesarean delivery was eventually performed with the patient's consent. The mean age of patients who initially disagreed was younger (24.7 +/- 6) than that of those who agreed (31.0 +/- 4 [p < 0.05]). Conflicts were present in 7 of 113 clinic patients and 0 of 213 private patients (p < 0.05). Of those surveyed, 26 (8.7%) indicated that they did not have adequate input in the decision for non-elective cesarean delivery. Patients with inadequate input expressed significantly more concerns with regard to the effect of surgery on their own health (p < 0.05) as well as its effect on the baby (p < 0.05). Our findings suggest that even though the incidence of physician-patient conflict about non-elective cesarean delivery was quite low, a significant number of patients (1 in 12) may have reservations concerning the informed consent process at the time of non-elective cesarean delivery. Patients with reservations are more likely to have greater concerns with regard to maternal and fetal risks, suggesting that a more detailed risk disclosure prior to the procedure is warranted for all pregnant patients. Perhaps by incorporating the preventive strategies discussed, the adequacy of informed consent and therefore the patient's autonomy could be enhanced, thus diminishing patient reservations and preventing physician-patient conflict in the intrapartum period.

Adult↗
PubMed2004

Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians.

PURPOSE: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. DESIGN AND METHODS: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three sites), and 39 physicians participated in eight interviews (three each at two sites; two at one site). Structured interview protocols were used to assess diagnostic disclosure, first reactions, and suggestions for improving the diagnostic process. RESULTS: Caregivers recounted a highly negative emotional response to the disclosure, whereas many physicians reported that families handled the information well. Caregivers expressed a range of preferences for how the diagnosis should have been disclosed, from a direct approach to having the physician ease them into the results. IMPLICATIONS: Whenever possible, physicians should consult with the patient and family at the outset of the diagnostic process to better understand their preferences for diagnostic disclosure. Addressing diagnostic disclosure as part of physician education programs on dementia is recommended.

Attitude of Health Personnel↗
PubMedDate not supplied

Employment self-disclosure of postsecondary graduates with learning disabilities: rates and rationales.

One hundred thirty-two graduates with learning disabilities (LD) of a large, public, competitive postsecondary institution were surveyed to determine if they had self-disclosed their LD to their current employer and to provide the reasons for choosing to self-disclose or not to self-disclose. Based on a response rate of 67.4% (n = 89), the results indicated that 86.5% of the respondents were employed full time. Although nearly 90% of the respondents stated that their LD affected their work in some way, only 30.3% self-disclosed to their employer. Of those who had not self-disclosed, the majority reported that there was no reason or need to self-disclose. However, 46.1% reported not self-disclosing due to fear of a potentially negative impact in the workplace or due to a concern for job security. Specific rationales for disclosure and information related to the use of self-reported accommodations and strategies are presented.

Adult↗
PubMed1995

Patterns of self-disclosure across social support networks: elderly, middle-aged, and young adults.

Self-disclosure has generally been examined as a unidimensional construct which relates to intimacy in developing relationships. Self-disclosure also serves many functions in established relationships, such as with close friends and family. Moreover, the functions served by self-disclosure may vary depending upon the adults' gender and stage in the life-span. In this study, such issues are examined with regard to elderly, middle-aged, and young adults' use of four functions of self-disclosure: self-expression, self-clarification, social control, and social validation. Findings support the claim that greater intergenerational distance is related to less self-disclosure among members of a social network. Further, elderly adults self-disclose more often to family than to friends, while young adults self-disclose to friends more often than to family. Implications for self-disclosure within the areas of gender, social support, and social comparison are discussed, and the appropriateness of adults' disclosure patterns within a framework of life stages is considered.

Adult↗