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PubMed1989

Mothers' perceptions of incest: sustained disruption and turmoil.

Eleven mothers whose daughters had allegedly been sexually abused by the father or father figure were interviewed to evaluate their perceptions of the sexual abuse. Subjects were obtained from a caseload of a county Department of Family and Child Protective Services. Ages ranged from 5 to 17 years and both black and white children were represented. Content analysis was used to analyze the data and revealed that the mothers in the sample continued to experience turmoil in their lives long after disclosure of the abuse occurred. These mothers were unable to consistently protect their daughters or reconstruct their family lives after the incest was disclosed.

Adolescent↗
PubMed1987

Experimental chemotherapy in children with cancer--a parent's view.

Parental attitude and the parents' perceptions of a child's responsibilities were measured by mailing a questionnaire to 156 parents of cured children of the Pediatric Oncology Center, University of Groningen. Simplistically, the questionnaire concerned parental judgment on (1) the role of the child in decisions about experimental therapy, (2) what information should be related to the child and by whom, (3) parental attitudes toward experimental therapy, and (4) the parents' opinions about ethical aspects of proposing experimental therapy. A high response rate (87.8%) was achieved. A majority of the respondents would allow a child take responsibility in deciding about experimental therapy. In their opinion the median age (16 years) at which a child should be allowed to give consent was higher than the median age (12 years) at which a child should merely be involved in the decision. Parents were more likely to overrule the child's decision if the child decided against experimental therapy than if the child chose the therapy (p less than 0.001). Parents found it more difficult to talk about death than about experimental therapy, and parents would be more willing to involve the physician in discussing experimental therapy than in discussing imminent death with a child (p less than 0.001). Many respondents (68%) felt that the child should be given both altruistic reasons and reasons of self-interest for participating in experimental therapy. About half of all of the respondents believed that a pediatric oncologist should always advise experimental therapy for the benefit of similarly afflicted patients.

Adolescent↗
PubMed2006

The Sorry Works! Coalition: making the case for full disclosure.

BACKGROUND: The Sorry Works! Coalition, an organization of doctors, lawyers, insurers, and patient advocates, is dedicated to promoting full disclosure and apologies for medical errors as a "middle-ground solution" in the medical liability crisis. If a standard of care was not met (as shown by a root cause analysis) in a bad outcome or adverse event, the providers (and their insurer) should apologize to the patient/family, admit fault, provide an explanation of what happened and how the hospital will ensure that the error is not repeated, and offer compensation. The Sorry Works! protocol is based on the disclosure program developed at the Department of Veterans Affairs Hospital in Lexington, Kentucky. GOALS: The coalition's goals are to (1) educate all stakeholders in the medical liability debate, (2) serve as an organizing force for the full-disclosure movement, and (3) advocate for legislative incentives, including pilot programs. OVERCOMING CULTURAL AND LEGAL OBSTACLES: In large part, the coalition's educational efforts are intended to overcome cultural and legal barriers to full disclosure, which often represent emotional, knee-jerk responses within the medical, insurance, and legal communities. Perhaps the greatest hurdle of all is the culture of the medical profession; considerable changes are needed if doctors are to enjoy the benefits of Sorry Works! and other full-disclosure programs. CONCLUSION: Sorry Works! entails changing the culture of medicine, medical risk management, and the associated insurance and legal support structure.

Attitude↗
PubMed1999

Abortion as stigma: cognitive and emotional implications of concealment.

This study examined the stigma of abortion and psychological implications of concealment among 442 women followed for 2 years from the day of their abortion. As predicted, women who felt stigmatized by abortion were more likely to feel a need to keep it a secret from family and friends. Secrecy was related positively to suppressing thoughts of the abortion and negatively to disclosing abortion-related emotions to others. Greater thought suppression was associated with experiencing more intrusive thoughts of the abortion. Both suppression and intrusive thoughts, in turn, were positively related to increases in psychological distress over time. Emotional disclosure moderated the association between intrusive thoughts and distress. Disclosure was associated with decreases in distress among women experiencing intrusive thoughts of their abortion, but was unrelated to distress among women not experiencing intrusive thoughts.

Abortion, Induced↗
PubMed2005

Physician-patient relationship and disclosure behaviour in chronic hepatitis C in a group of German outpatients.

OBJECTIVES: In chronic hepatitis C infection, the doctor-patient relationship can be burdened for various reasons. Factors associated with the doctor-patient relationship and self-disclosure of hepatitis C virus (HCV) status have not so far been investigated systematically. The goal of the study was to examine self-disclosure of HCV positivity, perceived stigmatization, and potential predictor variables in a German outpatient group. METHODS: In a cross-sectional single-centre study, we included a volunteer sample of 103 HCV outpatients. Patient recruitment was between March 2003 and September 2004. Data were obtained from a fully standardized face-to-face interview [HCV disclosure behaviour (main interview variable), stigmatization, doctor-patient relationship] and psychometric self-assessment questionnaires [Hospital Anxiety and Depression Scale, German version; Symptom Checklist-90 Revised (global severity index); Inventory of Interpersonal Problems (total score)]. RESULTS: The overall general disclosure rate was 44.7% (with respect to all physicians). However, 75% stated revealing their positive serostatus in future physician appointments (P < 0.05). With respect to family/friends, disclosure rates were clearly higher (permanent partner, 99%; average, 76.7%). Patients' disclosure behaviour could not be predicted by sociodemographic variables or personality factors (binary logistic regression, P > 0.05). Similarly, the Hospital Anxiety and Depression Scale and Symptom Checklist-90 subscales were not substantially associated with HCV disclosure. Experiences of stigmatization (rate 38.8%) were more frequent in women (P = 0.014) and patients with higher depression scores (P = 0.029). CONCLUSIONS: There is a need for education in the field of chronic hepatitis C in order to improve the physician-patient relationship. HCV disclosure rates might thus be increased and the frequency of problematic contacts reduced. Importantly, the data show that physicians should explicitly ask for the patients' HCV status because unrequested disclosure cannot be taken for granted.

Adult↗
PubMed2002

When the time comes to talk about HIV: factors associated with diagnostic disclosure and emotional distress in HIV-infected children.

OBJECTIVE: To determine factors related to the timing and probability of nondisclosure of HIV status to perinatally HIV-infected children, and to explore factors associated with emotional distress in HIV-infected children. METHODS: This is a cross-sectional study of 51 HIV-infected children based on medical records, parent interviews, and child assessments. RESULTS: 1) Probability of earlier age of disclosure is associated with higher child IQ (p =.04) and more family expressiveness (p =.01); 2) controlling for child age, disclosure status at time of study is associated with major life events, but not with medical status; and 3) factors associated with increased parent-rated anxiety in HIV-infected children in univariate analyses are: HIV disclosure (p =.04), other major life events (p =.001), higher medication dose frequency ( p=.01), and child age (p =.01). Increased depression is associated only with more medication doses (p =.02). CONCLUSION: These data indicate that higher child IQ and greater family expressiveness increase the probability of earlier diagnostic disclosure to HIV-infected children. Factors associated with emotional distress highlight important areas of clinical attention. These data suggest that diagnostic disclosure may not necessarily minimize emotional distress, indicating the need for further evaluation of the appropriate timing and type of disclosure for pediatric HIV.

Adolescent↗
PubMed2002

Medical errors-what and when: what do patients want to know?

OBJECTIVES: 1) To determine how and when emergency department (ED) patients and their families wish to learn of health care errors. 2) To assess the error threshold this population believes should trigger reporting to government agencies, state medical boards, and hospital patient safety committees. 3) To evaluate the role patients and families believe medical educators should play in this process. METHODS: A 12-item survey was administered to a convenience sample of ED patients and families during evaluation in a tertiary care academic ED. Results were tabulated and data were reported as percentages. Statistical significance was analyzed using the chi-square test. RESULTS: 258 surveys were returned (80%). A majority of respondents wished to be informed immediately of any medical error (76%) and to have full disclosure of the error's extent (88%). An overwhelming majority of respondents endorse reporting of errors to government agencies (92%), state medical boards (97%), and hospital committees (99%). Most respondents believe medical educators should focus on teaching students to be honest and compassionate (38%) or on how to tell patients about mistakes (25%). The frequency of hospital admission or physician visits per year had no impact on any response pattern (ns with chi(2) test). CONCLUSIONS: Regardless of health care utilization, a majority of respondents want full disclosure of medical error and wish to be informed of error immediately upon its detection. Respondents support reporting of errors to government agencies, the state medical board, and hospital committees focused on patient safety. Teaching physicians error disclosure techniques, honesty, and compassion were endorsed as a priority for educators who teach error management.

Academic Medical Centers↗
PubMedDate not supplied

Consent to treatment: myths and realities.

In the last 10 years, court rulings have questioned the validity of current practices of obtaining consent to treatment. Consent is sought to protect health institutions and staff from litigation. This is no guarantee of protection, however, if the consent process has consisted merely of obtaining the patient's signature on a consent form without full disclosure. This article looks at the inconsistency of current consent practices and outlines ways to improve the legal standard for obtaining consent to treatment.

Canada↗
PubMed2000

Accounting and accountability: observations on the AHERF settlements.

Recent enforcement proceedings involving health care and accounting--relating primarily to the Allegheny Health, Education and Research Foundation (AHERF)--have sparked renewed interest in the activities of the U.S. Securities and Exchange Commission in the municipal securities market. Officials and accountants who are working for public-sector issuers in the healthcare industry have responsibilities under the Federal securities laws. Other issues of relevance include disclosure in the secondary market as well as upon initial issuance, and the significance of antifraud actions in other areas.

Accounting↗
PubMed1993

Rape death and resurrection: male reaction after disclosure of the secret of being a rape victim.

Males are also rape victims. The scant information we have on this phenomenon can be explained by its rarity or by the reluctance of male victims to disclose their past victimization. In this study, 23.8% of 235 prisoners that were interviewed disclosed their past sexual abuse. Eleven suffered an acute reaction (for example, attempted suicide). 77.7% of the prisoners who did not have an acute reaction after this disclosure were sex offenders. Sexual abuse has a special meaning for the male victim. Their gender identity and gender image are tarnished by the use which another male had with their body. It seems that sex offenders come to terms with this fact by acting out or by proving their sexual virility in a strange and cruel way. This article describes male prisoners' reactions after their disclosure of having been a rape victim, and suggests a tentative explanation, based on theory and therapeutic experience.

Adaptation, Psychological↗
PubMed2005

The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children.

The current study explores the impact of HIV disease on mothers as they face the task of balancing their own physical and psychological needs with the needs of their families as well as the additional burden of deciding whether to disclose their HIV status to their children. Qualitative interviews were conducted with 35 women and 19 children 10-18 years of age. Mothers were interviewed about the experience of being an HIV-positive mother and issues regarding disclosure. Children were also interviewed about the experience of having a mother who is HIV-positive and issues regarding disclosure. The decision to disclose was dependent on the child's developmental level, the degree of the mother's illness, and in some cases this decision was taken from mothers when someone else disclosed their HIV status to their children. Positive aspects of disclosure from the mother child dyads included open, honest communication, and closer relationships between mothers and their children. Common negative themes emanating from the data included fear, uncertainty, forced secrecy for fear of being ostracized based on the stigma associated with the disease, behavioral changes in the children, and shifting responsibilities between the mother and the child. Findings of the study suggest that disclosure, and all it entails, remains a vital issue for mothers who are HIV-positive. In addition, the findings reflected that children and their mothers have very different perspectives regarding the process and the effects of disclosure of the mother's HIV status. Clinical implications and recommendations for further research are discussed.

Adolescent↗
PubMed2003

'Hitting you over the head': oncologists' disclosure of prognosis to advanced cancer patients.

The disclosure of prognosis to terminally ill patients has emerged as a recent concern given greater demands for patient involvement in medical decision-making in the United States. As part of the informed consent process, American physicians are legally and ethically obligated to provide information to such patients about risks, benefits, and alternatives of all available treatment options including the use of experimental therapies. Although not legally required, the disclosure of terminal prognosis is ethically justified because it upholds the principle of self-determination and enables patients to make treatment decisions consistent with their life goals. To understand oncologists' attitudes about disclosing prognostic information to cancer patients with advanced disease, we interviewed fourteen oncologists and conducted one focus group of medical fellows. Although oncologists reported to disclose prognosis in terms of cancer not being curable, they tend to avoid using percentages to convey prognosis. Oncologists' reported reluctance to disclosing prognosis was conveyed through the use of metaphors depicting the perceived violent impact of such information on patients. Oncologists' reluctance to disclose prognosis and preserve patient hope are held in check by their need to ensure that patients have 'realistic expectations' about therapy. We discuss these data in light of the cultural, ethical, and legal dimensions of prognosis disclosure, patient hope and the doctor-patient relationship, and recommend ways to enhance the communication process.

Attitude of Health Personnel↗
PubMed1987

Assessing the credibility of young children's allegations of sexual abuse: clinical issues.

In assessing the credibility of young children's (ages 2-7) allegations of sexual abuse clinicians need to know how dynamics of sexual abuse affect disclosure, what situations are most commonly associated with fictitious allegations and how the child's developmental stage affects disclosures. Understanding these issues allows for clear decision making. A clear decision making process flows naturally from an understanding of these issues.

Child↗
PubMed2004

Ambivalence of nonoffending guardians after child sexual abuse disclosure.

A concern in the intervention with sexually abused children is the support of their nonoffending guardians after disclosure of the abuse. Approximately a third of nonoffending guardians respond with vacillation in support, and these nonoffending guardians are at greater risk for having their children removed. This article reconceptualizes vacillation in support as an ambivalent response. Drawing on the interdisciplinary literature, this article suggests that ambivalence in support reflects the confluence between the nonoffending guardian's valence toward the child and perpetrator. This article further proposes that ambivalence is normative when the costs of disclosure are high and when the nonoffending guardian is ambivalent/preoccupied in attachment. Ambivalence may also be both a precursor to and an effect of the traumatic experience of the disclosure on the nonoffending guardian. In a study of 30 nonoffending mothers whose partners sexually abused their children, these relationships were supported.

Child↗
PubMed2002

Oncologists' attitudes toward and practices in giving bad news: an exploratory study.

PURPOSE: To examine the attitudes and practices of oncologists in disclosure of unfavorable medical information to cancer patients. METHODS: A questionnaire was administered to a group of physicians who attended the 1999 Annual Meeting of the American Society of Clinical Oncology. The questionnaire assessed demographic and practice-related information and the frequency of patient encounters in which unfavorable cancer-related information was disclosed. Participants were also asked about difficulties they had when approaching stressful discussions and communication strategies used in giving unfavorable information. RESULTS: The questionnaire was completed by 167 oncologists. Sixty-four percent were medical oncologists. Thirty-eight percent practiced in North America, 26% practiced in Europe, 13% practiced in South America, and 13% practiced in Asia. Participants gave bad news to patients an average of 35 times per month. Discussing no further curative treatment and hospice was reported as most difficult. In disclosing the cancer diagnosis and prognosis, physicians from Western countries were less likely to withhold unfavorable information from the patient at the family's request, avoid the discussion entirely, use euphemisms, and give treatments known not to be effective so as not to destroy hope than physicians from other countries. There was significant variability in opinions regarding the best time to discuss resuscitation, with 18% of respondents believing that it should be done close to the end of life. CONCLUSION: There was significant variability in how physicians approach information disclosure to cancer patients. Factors such as geographical region and cultural and family variables may be important influences in this process.

Attitude↗