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PubMed2004

Dementia diagnosis and disclosure: a dilemma in practice.

BACKGROUND: Providing the individual with the correct information about their diagnosis can help maximize the patient's autonomy, however empirical evidence identifies inconsistencies in the practice of diagnosis disclosure in dementia. Within health care, ethical problems arise frequently and these present a challenge for health care professionals. This challenge can also give rise to conflict when professionals are torn between respecting autonomy, doing good and avoiding paternalism. AIM: The aim of this paper is to highlight the need for interprofessional collaboration when faced with ethical dilemmas such as diagnosis disclosure in the care of adults with dementia. The use of a dialogue and supplementary notes are used to explore crucial ethical points raised by health care professionals. RELEVANCE TO CLINICAL PRACTICE: The increasing rate of dementia and the need for patients to have access to timely and appropriate information about their diagnosis has prompted much debate about disclosing the diagnosis with the individual who has dementia. This paper may also be useful for educational purposes when used as a framework for discussion/debate in student nurse education. CONCLUSION: Ethical theories are of benefit in assisting the members of the multidisciplinary team to reach a morally defensible decision. Making ethical decisions in practice can cause the nurse concern. While there is no complete set of 'rules' that can provide an answer to each ethical dilemma, it is of immense value to nurses working within the multidisciplinary team to possess a sound knowledge of ethical positions in order to analyse the many complex situations that nurses encounter. The pivotal role of the health care professional is to work in collaboration and engage in sharing the diagnosis with the patient. It is hoped that this paper will stimulate and encourage further debate and study regarding the individual with dementia and diagnosis disclosure. Recommendations for practice, education, policy and research will also be highlighted.

Aged↗

PubMed2006

Perceptual error and the culture of open disclosure in Australian radiology.

The work of diagnostic radiology consists of the complete detection of all abnormalities in an imaging examination and their accurate diagnosis. Errors in diagnostic radiology comprise perceptual errors, which are a failure of detection, and interpretation errors, which are errors of diagnosis. Perceptual errors are subject to rules of human perception and can be expected in a proportion of observations by any human observer including a trained professional under ideal conditions. Current legal standards of medical negligence make no allowance for perceptual errors, comparing human performance to an ideal standard. Diagnostic radiology in Australia has a culture of open disclosure, where full unbiased evidence from an examination is provided to the patient together with the report. This practice benefits the public by allowing genuine differences of opinion and also by allowing a second chance of correct diagnosis in cases of perceptual error. The culture of open disclosure, which is unique to diagnostic radiology, places radiologists at distinct medicolegal disadvantage compared with other specialties. (i) Perceptual error should be acknowledged as an integral inevitable part of diagnostic radiology; (ii) culture of open disclosure should be encouraged by the profession; and (iii) a pragmatic definition of medical negligence should reflect the imperfect performance of human observers.

Australia↗

PubMed1975

The need for approval and the private versus public disclosure of self.

The relationship between need for approval and public and private self-disclosure was evaluated. Sixty female college students discussed their preferences for a steady date with a confederate in confidence or after having given permission for their comments to be cited in lectures or a book. The results showed that high-need-for-approval subjects revealed themselves more intimately in public than in private conditions wheras low- and moderate-need subjects disclosed more intimately in private than in public. The results not only demonstrated the strength of the effect of social evaluation on the behavior of high-need subjects, but also suggested that personality must be accounted for in self-disclosure research before factors influencing self-disclosure may be understood completely.

Adolescent↗

PubMedDate not supplied

Disclosure and secrecy in adolescent-parent relationships.

Beliefs about parents' legitimate authority and adolescents' obligations to disclose to parents and actual disclosure and secrecy in different domains were examined in 276 ethnically diverse, lower middle-class 9th and 12th graders (Ms=14.62 and 17.40 years) and their parents (n=249). Adolescents were seen as more obligated to disclose prudential issues and less obligated to disclose personal than moral, conventional, and multifaceted issues; parents viewed adolescents as more obligated to disclose to parents than adolescents perceived themselves to be. Adolescents disclosed more to mothers than to fathers, particularly regarding personal issues, but mothers overestimated girls' disclosure. Greater trust, perceived obligations to disclose, and, for personal issues, more parental acceptance and psychological control predicted more disclosure and less secrecy.

Adult↗

PubMed2001

Physician incentives and disclosure of payment methods to patients.

OBJECTIVE: There is increasing public discussion of the value of disclosing how physicians are paid. However, little is known about patients' awareness of and interest in physician payment information or its potential impact on patients' evaluation of their care. DESIGN: Cross-sectional survey SETTING: Managed care and indemnity plans of a large, national health insurer. PARTICIPANTS: Telephone interviews were conducted with 2,086 adult patients in Atlanta, Ga; Baltimore, Md/Washington DC; and Orlando, Fla (response rate, 54%). MEASUREMENTS AND MAIN RESULTS: Patients were interviewed to assess perceptions of their physicians' payment method, preference for disclosure, and perceived effect of different financial incentives on quality of care. Non-managed fee-for-service patients (44%) were more likely to correctly identify how their physicians were paid than those with salaried (32%) or capitated (16%) physicians. Just over half (54%) wanted to be informed about their physicians' payment METHOD: Patients of capitated and salaried physicians were as likely to want disclosure as patients of fee-for-service physicians. College graduates were more likely to prefer disclosure than other patients. Many patients (76%) thought a bonus paid for ordering fewer than the average number of tests would adversely affect the quality of their care. About half of the patients (53%) thought a particular type of withhold would adversely affect the quality of their care. White patients, college graduates, and those who had higher incomes were more likely to think that these types of bonuses and withholds would have a negative impact on their care. Among patients who believed that these types of bonuses adversely affected care, those with non-managed fee-for-service insurance and college graduates were more willing to pay a higher deductible or co-payment in order to get tests that they thought were necessary. CONCLUSIONS: Most patients were unaware of how their physicians are paid, and only about half wanted to know. Most believed that bonuses or withholds designed to reduce the use of services would adversely affect the quality of their care. Lack of knowledge combined with strong attitudes about various financial incentives suggest that improved patient education could clarify patient understanding of the nature and rationale for different types of incentives. More public discussion of this important topic is warranted.

Adult↗

PubMed1990

Self-disclosure of personal constructs.

Sidney Jourard's (19) description of the role of self-disclosure in marriage is reviewed. George Kelly's (20) theory of personal constructs is described in an effort to explain the complexity of successful marriages and strong families. A kind of marital therapy based on the technique of self-disclosure and the rationale that couple pathology results from erroneous personal constructs is described. The idea that these faulty schemas largely derive from the observation of and experience with one's parents' marriage is discussed. The self-disclosure of personal constructs may provide a distinctive approach to family therapy.

Ego↗

PubMed2000

An historical analysis of disclosure of terminal status.

PURPOSE: To examine the concept of disclosure of terminal status and trace its development and implementation over time. An individual's ability to make appropriate end-of-life decisions, exert some control over the place and manner of death, and prepare self and significant others for this loss depends on knowing that life is drawing to a close. ORGANIZING FRAMEWORK: An analysis of disclosure of terminal status was performed within the context of American social, political, and cultural history from 1930 to 1990. METHODS: A combination of manual and computerized search mechanisms was performed utilizing popular, nursing, medical, sociological, psychological, and thanatological literature from 1930 to 1990. The articles and books obtained through these searches were scanned and those articles and books that dealt with health care disclosure issues were selected. Works included in the review were 149 articles and 22 books. FINDINGS: A long-standing tradition of nondisclosure exists in the medical profession. Societal events in the 1950s and 1960s influenced individuals' perceptions of death, individual rights, and physician responsibility, and culminated in some change in this tradition in the 1970s. The magnitude of this change is unknown. Current practice has not been investigated. This topic is rarely addressed in nursing literature even though nursing care is influenced by physicians' practice. CONCLUSIONS: A tradition of nondisclosure prohibits patients from managing the end of their lives and making choices about their manner of death. Nursing care of terminally ill patients is compromised when patients are uninformed.

Attitude to Death↗

PubMed2002

The use of standardized patients within a procedural competency model to teach death disclosure.

OBJECTIVE: To design, implement, and evaluate a multi-dimensional, interdisciplinary, educational training module that enables residents to deliver an effective and empathic death disclosure in the emergency setting. The Accreditation Council for Graduate Medical Education (ACGME) "Toolbox of Assessment Methods" to assess competency was adopted as the foundation of this project. METHODS: Sixteen emergency medicine residents, eight postgraduate year 1 (PGY-1) and eight PGY-2, underwent a one-day training and evaluation exercise. The exercise consisted of: 1) a large-group didactic session, 2) a small-group didactic session, and 3) two standardized patient (SP) examinations. Changes in comfort levels, training helpfulness, and competency were measured. Inter-rater agreement between evaluators was examined. RESULTS: Trainees reported improvement in comfort levels and high levels of satisfaction regarding the helpfulness of the training. Good interrater agreement was obtained regarding resident competency to perform a death disclosure between the faculty and SP evaluators [kappa 0.61; 95% confidence interval (95% CI) = 0.33 to 0.88]. However, overall agreement among raters was poor (kappa 0.16; standard error = 0.26). This poor agreement reflected a lack of agreement between resident and SP evaluators (kappa 0.08; 95% CI = 0.16 to 0.33) and resident and faculty evaluators (kappa -0.02; 95% CI = 0.30 to 0.26). CONCLUSIONS: This project used the ACGME "Toolbox of Assessment Methods" to evaluate the competency of emergency medicine trainees to perform an effective and empathic death disclosure. The finding of inconsistent competency assessments by resident self-evaluators compared with those assessments made by faculty and standardized patients have important implications in future curricular design.

Death↗

PubMed2002

Delayed disclosure and disrupted communication during forensic investigation of child sexual abuse: a study of 47 corroborated cases.

AIM: To study factors of relevance for the understanding of disclosure of child sexual abuse. METHODS: Cases from a Swedish district court involving 47 children in which allegations of child sexual abuse had been corroborated by a confession from the defendant were studied. RESULTS: Delayed disclosure was related to a close relationship with the perpetrator and young age at the first experience of abuse. Disrupted communication during the police interview was related to less violent abuse. CONCLUSION: The findings highlight the importance of social factors in children's disclosure of sexual abuse.

Adolescent↗

PubMed2003

Adolescent homosexuality and concerns regarding disclosure.

Development of sexual identity in middle childhood and early adolescence is a natural process. However, it is more stressful for homosexual adolescents. Society continues to stigmatize and marginalize homosexuality. To avoid rejection and hostility, homosexual adolescents are pressured to hide their sexual identities. This fact compounds the anticipated normal developmental concerns of adolescence, and can create unique problems for the homosexual adolescents. Homosexuality can place them at risk for social stigmatization, isolation, depression, suicide, abuse, and rejection by their families and friends. During this exceptionally stressful time, both adolescent students and their families need anticipatory guidance and support. In providing anticipatory guidance, this article discusses critical roles played by professionals who work with adolescents in community or school settings. Included are insights into development of this normal variant of sexual attraction and orientation, risks that homosexual adolescent students may face as well as their disclosure concerns, and possible reactions families may have following disclosure. Supporting homosexual adolescents and their families is emphasized with regard to sensitively providing information, disclosure decisions, coping with stigmatization, and resiliency factors.

Adaptation, Psychological↗

PubMed1999

Family adjustment following disclosure of homosexuality by a member: themes discerned in narrative accounts.

Disclosure of homosexuality by a family member frequently creates a crisis within the family. Previous research has focused primarily on families' response to this initial crisis and how they cope with and transform initial negative reactions. Little attention has been given to how families respond to disclosure over time and to how families integrate a gay or lesbian family member--and his or her relationships--once they have come to accept his or her homosexuality. Using a narrative approach and interviewing whole families, this project explores these questions. We present 12 themes we found consistently recurring in family members' narratives. We discuss the relationship between these themes and current models in the literature within the context of heterosexism and suggest that this approach may represent a first step in developing a model of successful adaptation subsequent to disclosure.

Adult↗

PubMed2000

Helping HIV-positive persons to negotiate the disclosure process to partners, family members, and friends.

For people who have been diagnosed with a chronic illness, one inevitable issue to be addressed is whether and how to share this information with others. For persons who are HIV positive, disclosure presents an especially arduous task. The purpose of this article is to offer a strategy to assist marriage and family therapists in facilitating client disclosure of an HIV-positive status to partners, family members, and friends. In addition, suggestions for setting the stage for disclosure to occur and recommendations for client follow-up are proposed.

Adaptation, Psychological↗

PubMed1996

Self-disclosure experience of people with HIV infection in dedicated and mainstreamed dental facilities.

OBJECTIVES: People infected with HIV choose dental care in dedicated or mainstreamed facilities. In this study, people with HIV were asked whether they sought care in dedicated or mainstreamed dental facilities, their reasons for choosing this source of care, their HIV disclosure experiences, and what, if any, consequences the disclosure had on access to dental care. METHODS: Patients in a dedicated AIDS medical clinic (n = 84) responded to questions in a telephone survey. The sample was predominantly gay, white males with symptomatic HIV infection, from randomly chosen clinic appointments. RESULTS: The study found that 67.6 percent of respondents who had seen a dentist since their HIV diagnosis chose mainstreamed dental facilities. The majority of study participants (70%) disclosed their HIV status. Of those subjects who chose disclosure, discrimination was minimal (2.7%). CONCLUSIONS: Results suggest support for public policy encouraging people with HIV to go to any dentist with whom they feel most comfortable and with whom they will receive the best possible care, regardless of whether the dentist practices in a dedicated or mainstreamed facility.

Adult↗

PubMed1984

Client disclosure and psychotherapy session evaluations.

Clients' percentage of disclosure (first person, subjective utterances) was compared with evaluative session ratings by clients, therapists, and an external rater across 43 psychotherapy sessions. In contrast to observers' perceptions, participants' perceptions of session depth and value were not correlated with client disclosure. Sessions high in disclosure (relative to the client's usual level) were rated from all three perspectives as relatively rough, unpleasant, difficult, and dangerous.

Adult↗

PubMed2001

Randomised controlled trial of disclosure of emotionally important events in somatisation in primary care.

OBJECTIVE: To test whether a disclosure intervention improves subjective health and reduces medical consumption and sick leave in somatising patients in general practice. DESIGN: Non-blind randomised controlled trial. SETTING: 10 general practices in the Netherlands. PARTICIPANTS: 161 patients who frequently attended general practice with somatising symptoms. INTERVENTION: Patients in the intervention group were visited two to three times and invited to disclose emotionally important events in their life. Control patients received normal care from their general practitioners. MAIN OUTCOME MEASURES: Use of medical services (drugs and healthcare visits), subjective health, and sick leave assessed by self completion questionnaires after 6, 12, and 24 months. RESULTS: Of the 161 patients, 137 completed the trial (85%). Both groups were comparable at baseline. The intervention had no effect on the main outcome measures at any point. Intervention patients made one more visit to health care (95% confidence interval -4 to 6); the use of medicines did not change in both groups (-1 to 1); subjective health improved 3.6 points more in the control group (-11.2 to 4.3); and disclosure patients were on sick leave one more week (-1 to 3). Patients often had a depression or anxiety disorder for which they were not receiving adequate care. CONCLUSION: Although the intervention was well received by patients and doctors, disclosure had no effect on the health of somatising patients in general practice.

Adult↗

PubMed2006

Financial disclosures of scientific papers presented at the 2003 RSNA Annual Meeting: association with reporting of non-Food and Drug Administration-approved uses of industry products.

PURPOSE: To retrospectively characterize the extent and nature of financial relationships with industry that are disclosed in the abstracts of scientific papers presented at the 2003 Radiological Society of North America (RSNA) Annual Meeting and to retrospectively assess whether the presence of relationships between researchers and industry was associated with a discussion on the use of products or devices that are not yet approved by the U.S. Food and Drug Administration (FDA). MATERIALS AND METHODS: Printed abstracts of scientific papers published in the 2003 Radiological Society of North America Scientific Assembly and Annual Meeting Program were classified according to the number and type of financial relationships disclosed. Also recorded was whether the abstracts discussed non-FDA-approved use of a product. Abstracts with and those without disclosures were then compared by using the Fisher exact test with respect to the percentage of abstracts that reported non-FDA-approved use. RESULTS: Of the 1549 published abstracts, 271 (17%) disclosed at least one author with financial ties to a company whose products or services were reported. The most common disclosures were for authors who were employees (39%), corporate grant recipients (34%), corporate consultants (23%), or shareholders (18%) of the corporation whose product was studied. A total of 87 (32%) of 271 abstracts with disclosed corporate relationships discussed non-FDA-approved use of a commercial product compared with 197 (15%) of 1278 abstracts with no disclosed tie to industry (P<.001). CONCLUSION: RSNA abstracts in which authors disclosed corporate financial relationships were twice as likely as those without such disclosures to discuss non-FDA-approved use of a commercial product. This raises the possibility that corporate relationships may influence radiology research.

Conflict of Interest↗

PubMed1988

Toronto Alexithymia Scale: relationships with measures of patient self-disclosure and private self-consciousness.

The construct validity of the Toronto Alexithymia Scale (TAS) was tested by correlations with the Patient Self-Disclosure instrument and the Private Self-Consciousness scale in a study of 333 students at a large midwestern university. The TAS was found to be internally consistent and to yield a replicable factor structure. Scores on the TAS correlated negatively with both overall ratings of the importance of such disclosure and scores on the PSC, and positively with perceived difficulty of patient self-disclosure. Results support construct validity of the TAS and suggest a more generally restrictive communicative style among alexithymic individuals than previously thought.

Adolescent↗

PubMed1988

The role of therapist self-disclosure in psychotherapy: a survey of therapists.

The use of self by the therapist, generally referred to as therapist self-disclosure, and its potential impact on the therapeutic process, continues to be an important and contentious area of interest and inquiry. In contrast to most research in our field, which concentrates on the patient, in this investigation it was the therapist, and her/his beliefs, attitudes, and reported behaviors that served as the primary focus. The literature shows quite a few studies regarding the theoretical aspects of therapist self-disclosure but studies concerning actual psychotherapy are rare. The intent of this article is to focus on the practice of psychotherapy in an attempt to comprehend more fully one aspect of it: therapist self-disclosure.

Adult↗