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PubMed2007

Preferences of cancer patients regarding the disclosure of bad news.

To understand patients' preferences regarding the disclosure of bad news is important in the clinical oncology setting. The aim of this study was to clarify descriptively the preferences of cancer patients. Five hundred and twenty-nine Japanese cancer outpatients were surveyed regarding their preferences regarding the disclosure of bad news, and several psychosocial and medical demographic variables were analyzed. In a descriptive analysis, more than 90% of the patients strongly preferred to discuss their current medical condition and treatment options with their physician and to have their physicians take the feelings of their family into consideration as well. While half of the patients preferred to receive information regarding their life expectancy, 30% preferred not to receive it. Multiple regression analyses indicated the preferences showing interindividual variations were associated with the level of education and the mental adjustment to cancer scores. A factor analysis revealed four preferences factors: method of disclosure of the bad news, provision of emotional support, provision of additional information, and setting. These four factors had good internal consistency reliability (Cronbach's alpha = 0.93-0.77). Providing emotional support, including the desire for the physician to show consideration for the patient's family, and understanding an individual's communication preferences may be useful for promoting patient-physician communication.

Adult↗

PubMedDate not supplied

Long-term breast cancer survivors: confidentiality, disclosure, effects on work and insurance.

UNLABELLED: As more women are diagnosed with breast cancer, more will survive the illness from a few years to a lifetime. This study sought to determine the experience of Canadian breast cancer survivors with respect to the impact of cancer on confidentiality, work and insurance. METHOD: Women who had survived breast cancer without recurrence for at least 2 years completed a mail survey about the effect of their illness on confidentiality, disclosure, work and insurance. RESULTS: 378 (75.6%) women breast cancer survivors responded to the survey. Their mean age was 61.0+/-10.9 years, and 67.6% had been recurrence free for more than 5 years. The majority of women rated hospital staff, family doctors, family, friends, and support groups at the highest possible level of confidentiality. Over 70% of survivors disclosed their diagnosis to friends, children, siblings, and partners, while over 50% disclosed to work colleagues and supervisors. However, over 40% felt cancer had altered their priorities or progress at work, and 5% were afraid to change jobs in case they became ill again. There was a lack of knowledge about insurance but, of the types of insurance identified, life insurance (17.9%), extended health insurance (7.7%), and private disability insurance (4.4%) were reported to have been refused or offered only with higher premiums as a result of a past diagnosis of breast cancer. DISCUSSION: A substantial minority of women perceived that cancer had substantially affected their personal and work lives. Although most felt their illness confidentiality was well protected and they disclosed freely to family, friends, and work, over 40% of women survivors reported that cancer had affected their work in various ways, and nearly 20% identified insurance problems. It appears that disclosure sometimes results in negative work and insurance experiences. CONCLUSIONS: Health professionals and cancer survivors should engage in education about the potential positive and negative effects of disclosure, and advocacy against cancer-based work and insurance discrimination.

Adaptation, Psychological↗

PubMed1997

Adolescents' perceptions of their parents' disclosure to them.

This study examines 144 older adolescents' perceptions of their parents' disclosure of their own lives to them. Information was obtained about the disclosure of 209 parents of college-aged children. The adolescents indicated whether and to what depth their parents had discussed 30 topics with them, and also indicated why they believed their parents had made these disclosures. The data indicate that college-age adolescents believe that their mothers disclose more to them than their fathers, especially about their problems. Mothers were also perceived to disclose for different, more emotional reasons than fathers, and they were perceived to seek advice more often.

Adolescent↗

PubMed1995

Aversive exchanges with peers and adjustment during early adolescence: is disclosure helpful?

We examined the relationship between the frequency of four types of aversive exchanges with peers (teased, threatened, hit, excluded), disclosure, and psychological distress in a sample of 130 early adolescents (65 boys, 65 girls). Most (73%) reported at least one aversive exchange with a peer during the 3-month target period. Many reported that they did not talk to anyone about these exchanges. When disclosure occurred, other adolescents were more likely than adults to be chosen as confidants. More frequent aversive exchanges and non-disclosure of these events were related to higher self-reported loneliness for boys and girls. A similar pattern was found for girls only using mothers' ratings of the adolescents' internalizing and externalizing symptoms.

Adolescent↗

PubMed2004

"Do not tell": what factors affect relatives' attitudes to honest disclosure of diagnosis to cancer patients?

Disclosure of the diagnosis of cancer to patients is a difficult task for physicians in developing countries. Family members often oppose truth telling. The aim of this study was to evaluate the incidence of the "do not tell" attitude in a general population of cancer patients and to explore the factors affecting the attitude of cancer patients' relatives about honest disclosure. Using a questionnaire, relatives of 150 patients with recently diagnosed cancer were interviewed. Of the relatives, 66% did not want the diagnosis to be disclosed. Male gender of the patient, a diagnosis of a non-breast cancer malignancy, the presence of stage IV disease, no previous request for disclosure by the patient, insufficient knowledge of the relative about cancer in general, and stronger religious belief of the relative were associated with greater likelihood of the relative having a "do not tell" attitude in univariate analyses ( P=0.032, P=0.000, P=0.051, P=0.021, P=0.128, and P=0.058, respectively). In a multivariate analysis, the diagnosis of a non-breast cancer malignancy, and insufficient knowledge of the relative about cancer in general retained their significance (exp(B)=14.77, P=0.000; exp(B)=3.04, P=0.01, respectively). Differences among different countries and cultures are discussed.

Adult↗

PubMed2006

Sexual negotiation, HIV-status disclosure, and sexual risk behavior among Latino men who use the internet to seek sex with other men.

As part of a wider study of Internet-using Latino men who have sex with men (MSM), we studied the likelihood that HIV-negative (n=200) and HIV-positive (n=50) Latino MSM would engage in sexual negotiations and disclosure of their HIV status prior to their first sexual encounters with men met over the Internet. We also analyzed the sexual behaviors that followed online encounters. Our results showed that both HIV-negative and positive men were significantly more likely to engage in sexual negotiation and serostatus disclosure on the Internet than in person. Those who engaged in sexual negotiations were also more likely to use condoms for anal intercourse. Compared to HIV-negative MSM, HIV-positive MSM were significantly less likely to disclose their serostatus, and 41% of them acknowledged having misrepresented their serostatus to a prospective sexual partner met over the Internet. Although similar proportions of HIV-positive and negative men had condomless anal intercourse, HIV-positive MSM were more likely to report lack of intention to use condoms. Pleasure was the reason most frequently cited for lack of condom use. Cybersex was reported by only one-fifth of the sample. We conclude that the Internet, an understudied milieu of sexual networking, may present new possibilities for the implementation of risk reduction strategies, such as the promotion of sexual negotiation prior to first in-person encounter and serostatus disclosure.

Adult↗

PubMed2006

Perceptions towards condom use, sexual activity, and HIV disclosure among HIV-positive African American men who have sex with men: implications for heterosexual transmission.

Disproportionately high HIV/AIDS rates and frequent non-gay identification (NGI) among African American men who have sex with men or with both men and women (MSM/W) highlight the importance of understanding how HIV-positive African American MSM/W perceive safer sex, experience living with HIV, and decide to disclose their HIV status. Thirty predominately seropositive and non-gay identifying African American MSM/W in Los Angeles participated in three semi-structured focus group interviews, and a constant comparison method was used to analyze responses regarding condom use, sexual activity after an HIV diagnosis, and HIV serostatus disclosure. Condom use themes included its protective role against disease and pregnancy, acceptability concerns pertaining to aesthetic factors and effectiveness, and situational influences such as exchange sex, substance use, and suspicions from female partners. Themes regarding the impact of HIV on sexual activity included rejection, decreased partner seeking, and isolation. Serostatus disclosure themes included disclosure to selective partners and personal responsibility. Comprehensive HIV risk-reduction strategies that build social support networks, condom self-efficacy, communication skills, and a sense of collective responsibility among NGI African American MSM/W while addressing HIV stigma in the African American community as a whole are suggested.

Adult↗

PubMed1995

Disclosure of sexual abuse and psychological adjustment in female undergraduates.

The relationship between reported unwanted sexual experiences (USE) and psychological disturbance is now widely recognized. However, the factors that mediate between USE and psychopathology are not adequately understood. One factor that has been suggested to be important is the way in which any attempt at disclosure is received. This study investigates how different perceived responses to attempted disclosure of abuse are related to psychological function in a nonclinical sample. A perceived adverse response to disclosure was associated with greater levels of psychopathology, particularly oral control, dissociation, and self-denigration. Suggestions are made for further research, and the clinical implications of the findings are discussed.

Adaptation, Psychological↗

PubMed1994

Children's disclosure of sexual abuse during formal investigation.

This study set out to provide information on children's disclosures of sexual abuse during formal child sexual abuse investigation. The study was carried out in a Child Sexual Abuse Assessment Unit based in a Children's Hospital, staffed by a multidisciplinary team and receiving referrals from community child protection agencies, pediatricians, general practitioners, and the police. Two hundred and fifty one children who had full assessments over a 12-month period formed the study group. They were divided at time of referral into two groups: (a) those who had previously told someone about abusive experiences prior to investigations; and (b) those who had not. There was a strongly positive correlation between having previously told someone about sexual abuse and disclosure of such abuse during formal investigation. There was also a strongly positive correlation between not having previously told someone and not disclosing during formal investigation. Age was an important variable, with children under 5 being least likely to disclose abuse during formal investigation, irrespective of whether they had previously told someone about abuse. Disclosure of sexual abuse during investigation was strongly positively correlated with abuse being regarded as confirmed. These results call into question the value of formal sexual abuse investigation in children who have not previously told someone about abuse. The value of a "nonleading" interview style with young children is also called into question, given that many young children who had previously disclosed abuse, did not repeat this information during formal investigation in which "nonleading" interviews were used.

Adolescent↗

PubMed1996

Outcome-based practice: disclosure rates of child sexual abuse comparing allegation blind and allegation informed structured interviews.

The way in which children are interviewed can make the difference between prosecution, or continued abuse. There is a clear need for the development of an interview style that is acceptable in the legal system without compromising disclosure rate. This study was conducted to compare the disclosure rate of alleged child sexual abuse victims interviewed in a formal forensic setting with a structured "allegation informed" technique versus a structured "allegation blind" technique. The only difference between techniques was that the interviewer did not know the allegation for condition "allegation blind." Of the 1,535 interviews, 1,330 or 86.64% were conducted "allegation blind," 196 or 12.76% were conducted "allegation informed" and for 9 or .6% the interview type was unknown. The "allegation blind" interview technique yielded a statistically higher disclosure rate (chi 2 p = 0.378). Further research is warranted.

Adolescent↗

PubMed2005

Iatrogenic events resulting in intensive care admission: frequency, cause, and disclosure to patients and institutions.

PURPOSE: To identify the frequency and type of iatrogenic medical events requiring admission to an intensive care unit. To assess the consequences of iatrogenic medical events for patients and institutions. To assess the prevalence of disclosure of iatrogenic medical events to patients, surrogates, and institutions. METHODS: The project on Care Improvement for the Critically Ill enrolled 5727 patients to 8 intensive care units at 4 Boston teaching hospitals. To determine the nature, consequences, and disclosure of iatrogenic medical events, we did a retrospective chart review on all patients whose admission to an intensive care unit was precipitated by an iatrogenic event. RESULTS: Sixty-six patients (1.2 %) were identified by an intensive care unit's clinical team as having an iatrogenic medical event as the primary reason for admission to the unit. The majority (29, or 45%) of iatrogenic medical events were secondary to technical error, but a high percentage (21, or 33%) was due to iatrogenic drug events. Twenty-two (34%) cases were assessed by the investigators to have been preventable. In 60 (94%) cases there was no documentation in the patient's chart of communication to the patient regarding the reason for admission to the intensive care unit. In 11 (17%) cases there was documentation of a discussion with the surrogate about the reason for admission to the unit. In only 3 (5%) cases was there documentation that the patient or surrogate was informed that an iatrogenic medical event was the reason for admission to the intensive care unit. Incident reports or malpractice claims were filed in only 4 (6 %) cases. CONCLUSION: The frequency of iatrogenic medical events resulting in admission to intensive care units is lower than previous studies have reported. Iatrogenic drug events continue to be an important source of error. A considerable percentage of iatrogenic events may be preventable. Health care professionals rarely document disclosure of iatrogenic events to patients and surrogates.

Drug-Related Side Effects and Adverse Reactions↗

PubMed2005

Trends in children's disclosure of abuse in Israel: a national study.

OBJECTIVE: To identify characteristics of suspected child abuse victims that are associated with disclosure and nondisclosure during formal investigations. METHODOLOGY: The database included all suspected cases of physical and sexual abuse investigated in the state of Israel between 1998 and 2002. All investigative interviews were conducted using a single standardized protocol, the National Institute of Child Health and Human Development (NICHD) Investigative Interview Protocol. FINDINGS: Overall, 65% of the 26,446 children made allegations when interviewed, but rates of disclosure were greater in the case of sexual (71%) than physical (61%) abuse. Children of all ages were less likely to disclose/allege abuse when a parent was the suspected perpetrator. Rates of disclosure/allegation increased as children grew older, with 50% of the 3- to 6-year-olds, 67% of the 7- to 10-year-olds, and 74% of the 11- to 14-year-olds disclosing abuse when questioned. CONCLUSIONS: Although most interviews of suspected victims yielded allegations, such rates of disclosure varied systematically depending on the nature of the alleged offences, the relationship between alleged victims and suspected perpetrators, and the age of the suspected victims. The findings obtained in this large and unselected data set confirm patterns previously reported in smaller and quite selective samples, most of them obtained in the United States.

Adolescent↗

PubMed2005

Grief work, disclosure and counseling: do they help the bereaved?

Bereavement is associated with increased risk of morbidity and mortality. How to protect the bereaved against extreme suffering and lasting health impairment remains a central research issue. It has been widely accepted that to adjust, the bereaved have to confront and express intense emotions accompanying their loss. It has further been assumed that others assist in this process, and that intervention programs are effective. To assess validity of these assumptions, this article reviews research on the impact of expressing and sharing emotions across four research domains (social support; emotional disclosure; experimentally induced emotional disclosure; and grief intervention). In none of these areas is there evidence that emotional disclosure facilitates adjustment to loss in normal bereavement. Implications of these findings are discussed.

Adaptation, Psychological↗

PubMed2005

Parental attitudes toward disclosure of the mode of conception to their child conceived by in vitro fertilization.

OBJECTIVE: To survey the level of disclosure of conception method within families of children conceived by conventional in vitro fertilization (IVF) or intracytoplasmic sperm injection (ICSI) and to examine the factors that might influence parental attitudes and plans for disclosure. DESIGN: In-depth questionnaire. SETTING: Participants recruited through fertility clinics in the United Kingdom. PATIENT(S): Parents of children aged 5 to 6 years conceived by IVF/ICSI (n = 181; 51% survey response rate). INTERVENTION(S): Mothers and fathers of IVF/ICSI-conceived children were sent questionnaires to complete and return in a postage-paid envelope. MAIN OUTCOME MEASURE(S): Responses to the questionnaire. RESULT(S): Most parents had told somebody about their child's method of conception, mostly close friends and family. Fewer (26% of mothers, 17% of fathers) had already discussed the child's mode of conception with their child. Fifty-eight percent of mothers and 57% of fathers intended to tell their child at some point. Sixteen percent of mothers and 21% of fathers were undecided. Four percent of fathers never wanted to discuss the subject with their child. Children were more likely to be told if conception was ICSI, rather than conventional IVF, and if an only child. Twenty-nine percent of undecided fathers and 36% of undecided mothers stated that they would tell their child if appropriate, child-friendly explanatory literature were available. CONCLUSION(S): The majority of parents wish to tell their child about their conception by IVF/ICSI at some point but are unsure as to the most appropriate timing and method of disclosure. Fertility clinics might have a role to play in providing the necessary support. Child-friendly literature might be helpful.

Adult↗

PubMed2006

Untangling the web: a close look at diagnosis disclosure among HIV-infected adolescents.

As children living with human immunodeficiency virus (HIV) survive into adolescence and young adulthood, attention to the relationship of diagnosis disclosure to psychological functioning, interpersonal relationships, and HIV prevention is needed. This exploratory study describes the level of adolescents' diagnosis disclosure to family, friends, and potential sexual partners, and the relationship between disclosure and psychosocial variables.

Adolescent↗

PubMed2004

Environmental performance rating and disclosure: China's Green Watch program.

In this paper we describe a new incentive-based pollution control program in China, in which the environmental performance of firms is rated from best to worst using five colors--green, blue, yellow, red and black--and the ratings are disseminated to the public through the media. We focus on the first two municipal disclosure programs, which have been implemented at very different levels of economic and institutional development. In both cases, the increases in compliance with pollution regulations have been similar to increases produced by public disclosure programs in Indonesia, the Philippines, and Vietnam. The results suggest that incentives created by public disclosure may significantly reduce pollution in China, even though environmental NGO's play little role and there is no formal channel for public participation in environmental regulation.

China↗

PubMed2004

Preferences for disclosure: the case of bedside rationing.

While rationing is present in many health care systems, little empirical research has been undertaken to investigate the public's preferences and information needs towards the rationing of their care. This paper reports the results of an interactive survey administered via an internet survey panel to investigate preferences for the provision of information about explicit rationing decisions. We presented a series of vignettes to respondents, describing hypothetical patients and explicit rationing decisions. In two different survey versions, patients were either characterized as matching or mismatching respondents' age and gender. We observed strong preferences for the disclosure of rationing information to patients. Seventy one percent of responders expressed a general attitude in favor of explicitly informing patients about the rationing of their care. In the presented scenarios, the fraction supporting disclosure to patients ranged from 63% to 89%. The clinical situation described in the vignettes, a positive, general attitude towards the disclosure of rationing decisions, age, and gender of respondents were main predictors for participants' votes. Preferences were relatively unaffected and insensitive to the matching of hypothetical patients and respondents' characteristics. This study suggests that if doctors are to play an active role in health care rationing, patients expect them to honestly discuss the decisions made, the economics behind these and finally, to deal with those patients that do not accept the final decision.

Adolescent↗

PubMed2006

Error or "act of God"? A study of patients' and operating room team members' perceptions of error definition, reporting, and disclosure.

BACKGROUND: Calls abound for a culture change in health care to improve patient safety. However, effective change cannot proceed without a clear understanding of perceptions and beliefs about error. In this study, we describe and compare operative team members' and patients' perceptions of error, reporting of error, and disclosure of error. METHODS: Thirty-nine interviews of team members (9 surgeons, 9 nurses, 10 anesthesiologists) and patients (11) were conducted at 2 teaching hospitals using 4 scenarios as prompts. Transcribed responses to open questions were analyzed by 2 researchers for recurrent themes using the grounded-theory method. Yes/no answers were compared across groups using chi-square analyses. RESULTS: Team members and patients agreed on what constitutes an error. Deviation from standards and negative outcome were emphasized as definitive features. Patients and nurse professionals differed significantly in their perception of whether errors should be reported. Nurses were willing to report only events within their disciplinary scope of practice. Although most patients strongly advocated full disclosure of errors (what happened and how), team members preferred to disclose only what happened. When patients did support partial disclosure, their rationales varied from that of team members. CONCLUSIONS: Both operative teams and patients define error in terms of breaking the rules and the concept of "no harm no foul." These concepts pose challenges for treating errors as system failures. A strong culture of individualism pervades nurses' perception of error reporting, suggesting that interventions are needed to foster collective responsibility and a constructive approach to error identification.

Adult↗