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PubMed2006

Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families.

Limited attention has been given to the impact of BRCA mutation disclosure on participants' psychological reaction and cancer control compliance. We asked women (290 mutation-positive, 370 mutation-negative) from 84 hereditary breast-ovarian cancer (HBOC) families with known deleterious BRCA mutations to participate in an evaluation regarding cancer prevention recommendations before and after BRCA mutation disclosure. Both men and women (n = 780) were invited to complete a questionnaire to evaluate their psychological response to BRCA mutation disclosure. Before BRCA testing, 23.0% (152 of 660) of these women underwent prophylactic bilateral mastectomy, oophorectomy, or both; of these, 53% (80 of 152) were subsequently found to be mutation negative. After mutation disclosure, 52.9% (110 of 208) of mutation carriers and 0% (0 of 203) of noncarriers underwent prophylactic surgeries. These changes were statistically significant compared with before disclosure (P < 0.0001). The rate of transvaginal ovarian ultrasound screening was significantly increased in mutation carriers (P < 0.015) and marginally decreased in noncarriers (P = 0.063) post disclosure. Psychologically, compared with noncarriers without cancer, a significantly higher percentage of carriers, regardless of their cancer status, felt guilt about passing a mutation to their children, worried about developing additional cancer or their children developing cancer, and were concerned about health insurance discrimination. Despite these psychological consequences, carriers and noncarriers reported a positive attitude toward genetic testing.

Breast Neoplasms↗

PubMed2005

Who benefits from disclosure? Exploration of attachment style differences in the effects of expressing emotions.

Pennebaker's disclosure paradigm is a powerful manipulation: writing or talking about emotional experiences has positive effects on health. Nevertheless, the effect does not work for all people and some studies, including those of the highly emotional event of bereavement, have failed to demonstrate any effect at all. This paper reviews empirical evidence and proposes an integrative model to help explain discrepant findings and assess individual differences in the manipulation's effectiveness. Taking bereavement as exemplary of an attachment-related loss experience, it examines the relationship between styles of attachment, internal representations of the self and other, and patterns of disclosure in the coping process. Research has shown disturbances in disclosure among insecurely attached persons. We argue that secure persons are less likely to benefit from the disclosure paradigm, since they are better able to disclose in ways that further the adjustment process in their everyday lives. Targeting persons with insecure attachment styles and providing attachment-style-specific disclosure instructions are likely to increase the power of the manipulation. Our examination of these individual difference patterns is compatible with recent cognitive and linguistic analyses underlying the disclosure paradigm's impact on health.

Adaptation, Psychological↗

PubMed1999

Helping children to the other side of silence: a study of the impact of the stay safe programme on Irish children's disclosures of sexual victimization.

OBJECTIVE: This study aimed to evaluate the effectiveness of a school based safety skills program--The Stay Safe Programme--in facilitating the disclosure of sexual abuse among sexually victimized children and adolescents in Dublin. METHOD: A Cohort of 145 children who had participated in the Stay Safe Programme prior to their referral to a sexual abuse assessment unit were compared with a cohort of 443 children who had not participated in the prevention program on a range of disclosure related variables abstracted from case notes. RESULTS: More Stay Safe participants, particularly female adolescents, made disclosures of suspected sexual abuse than non-participants. A higher rate of initial disclosure to teachers was made by Stay Safe participants and more teachers in schools participating in the Stay Safe Programme initiated referrals for evaluation of suspected child sexual abuse. Following assessment a higher rate of confirmed abuse occurred among Stay Safe participants and for these confirmed cases more Stay Safe participants made purposeful disclosures and in significantly more cases referral was due to the child telling someone about the abuse. These differences in disclosure between program participants and non-participants were unrelated to demographic factors or characteristics of the abuse. CONCLUSIONS: The Stay Safe Programme was an effective secondary prevention intervention deserving widespread implementation.

Adolescent↗

PubMed1997

Disclosure practices and cultural narratives: understanding concealment and silence around cancer in Tuscany, Italy.

Disclosure practices are embedded in and enact personal, professional, and societal narratives. These narratives are not given but contested and evolving. The medical arena constitutes an important social space in which this contestation, reproduction and change take place. More specifically, based on ethnographic and cultural survey data, we describe and interpret the cultural sense of "not telling" about cancer within the local world of Tuscany, Italy. We locate the traditional practice of non-disclosure of cancer diagnoses within a larger cultural narrative we call "social-embeddeness", a narrative of social unity and hierarchy, of protection from or adaptation to the inevitable necessities of life, in part by using narrative itself to construct a sense of group protection. This narrative is being challenged, as it confronts other medical and societal narratives, such as one originating from the United States and embedded in health care practices like open disclosure, informed consent, Advanced Directives, and the Patient Self-Determination Act, what we call the "autonomy-control narrative". Explicit disclosure to a patient about his or her illness and the future plays an important role in actualizing this narrative, in helping in the quest to control one's destiny, eliminate uncertainty and necessity, and foster a person's identity as singular and sovereign over him/herself. The concept "narrative" highlights the ideology and intent of people's practices, not just "outcome", and helps us understand contradictions in various disclosure contexts as partly due to multiple cultural narratives in play. Considering some of the practices and understandings embedded within and reproduced by the larger cultural narratives also allows us to track the dynamics of history and individual biography, to locate and compare approaches to disclosure across time and space, and to avoid the pitfalls of cultural determinism and cultural stereotypes.

Bioethics↗

PubMed2003

Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis.

OBJECTIVE: To determine the attitudes of patients with mild dementia and their carers towards the disclosure of diagnoses of cancer and dementia and whether there are differences between these groups. To determine whether any major adverse events occurred following disclosure of diagnosis of dementia. DESIGN: A prospective study followed by a retrospective case-note study after 1 year. PARTICIPANTS AND SETTING: Fifty patients with mild dementia and their carers were recruited from a memory clinic in Nottingham, UK, and an old-age psychiatrist, using a semistructured questionnaire, separately interviewed them. MEASURES: Questions related to whether patients and their carers wished to be told diagnoses of cancer and dementia; the reasons for this; whether they would want treatment and make use of predictive testing if available were included. At 1-year follow-up whether antidepressants had been prescribed and whether any catastrophic reaction had occurred following disclosure of diagnosis. RESULTS: An overwhelming majority of patients with mild dementia wished to be informed of their diagnosis (92%); even more (98%) of the same patient sample reported wanting disclosure of a hypothetical diagnosis of cancer. A higher proportion (98%) of carers would wish to be told if they were to develop either dementia or cancer. All patients and carers would like access to treatment for dementia. A total of 88% of patients and 86% of carers would make use of a predictive test of Alzheimer's disease. Before receiving a diagnosis of mild dementia, only 28% of patients had insight that they may have dementia. Only a quarter (26%) of carers did not want the doctor to disclose the diagnosis of dementia to the patient. After 1 year, 6% of the original sample had developed a depressive illness requiring antidepressant treatment and no major incidents had occurred following disclosure of diagnosis. CONCLUSIONS: There has been a growing debate on whether patients with dementia should be informed of their diagnosis. Until recently, little was known about the views of patients themselves. This study shows that the vast majority of patients with mild dementia wish to be fully informed. Despite increasing awareness, a quarter of carers still do not wish their relative to be informed, though wish to be informed if they themselves were to develop the illness. This is significantly lower, however, than previously reported, suggesting a shift in attitudes. This study adds support to the weight of evidence that disclosure of a diagnosis of dementia does not cause depression or any irreversible harm to the patient.

Adaptation, Psychological↗

PubMed2000

Women's lives after an HIV-positive diagnosis: disclosure and violence.

OBJECTIVES: This research addresses four questions: (1) What role do health care providers play in women's disclosure to others of their HIV-positive status? (2) What are women's concerns and experiences with disclosure? (3) What violence do women living with HIV experience? (4) How is the violence related to their diagnosis and disclosures? METHODS: Participants were 310 HIV-positive women enrolled in an HIV primary care clinic in an urban teaching hospital. Women were interviewed once using both quantitative and qualitative methods. RESULTS: Women had known they were HIV-positive for an average of 5.8 years; 22% had an HIV-positive partner; 58% had disclosed their status to more than 10 people; and 68% had experienced physical abuse and 32% sexual abuse as an adult. Fifty-seven percent of the sample reported that a health care provider had told them to disclose to their sex partners. Women who were afraid of disclosure-related violence (29%) were significantly more likely than those who were not to report that a health care provider helped them with disclosure (21% vs. 10%). Although 4% reported physical abuse following a disclosure event, 45% reported experiencing emotional, physical, or sexual abuse at some time after their diagnosis. Risk factors for experiencing abuse after diagnosis were a prior history of abuse, drug use, less income, younger age, length of time since diagnosis, and having a partner whose HIV status was negative or unknown. CONCLUSIONS: Identifying women at risk for abuse after an HIV-positive diagnosis is important for those who provide HIV testing and care. Routine screening for interpersonal violence should be incorporated into HIV posttest counseling and continuing primary care services.

Adolescent↗

PubMed2002

The out-group must not be so bad after all: the effects of disclosure, typicality, and salience on intergroup bias.

Two contact studies integrated the personalization (M. B. Brewer & N. Miller, 1984) and category-based models (M. Hewstone & R. J. Brown. 1986), proposing that greater reduction of intergroup bias can be achieved by the interactive effects of disclosure and typicality (Study 1) or disclosure and salience (Study 2). In Study 1 the impact of self-disclosure and typicality combined interactively to augment intergroup acceptance. Study 2 extended these findings by examining the combined effects of disclosure and category salience. It also explored the mediational roles of group-relevant and person-relevant information on the effects of typicality and disclosure, respectively. Results showed that during cooperative dyadic out-group contact, self-disclosure, typicality, and salience were key factors for reducing bias toward new members of that out-group category.

Analysis of Variance↗

PubMed1992

Self-disclosure of HIV infection: preliminary results from a sample of Hispanic men.

We examined self-disclosure of HIV infection among 101 seropositive Hispanic men residing in Los Angeles. Results indicated that disclosure was highly selective and presumably influenced by the social, psychological, and material consequences of informing others about one's medical condition. Subjects tended to inform significant others such as parents, friends, and lovers than less significant others such as employers, landlords, and religious leaders. There was a relatively high rate of disclosure (75%) to doctors/dentists who were not treating subjects for HIV infection. Gay and bisexual subjects (89% of the sample) were more inclined to disclose their HIV serostatus to homosexual or bisexual others than to heterosexuals and to inform those who were aware of their sexual orientation. Disclosure increased with severity of disease independently of length of time since testing seropositive. Self-rated negative changes in appearance correlated with disclosure to less significant others. The role of cultural attitudes and values in self-disclosure of HIV infection is discussed.

Adolescent↗

PubMed2004

A family of trust: African American parents' stories of adoption disclosure.

Dramatic increases in same-race adoptions of African American children have stimulated interest in the experiences of these families, including those related to disclosure. Data from interviews with 27 African American adoptive parents (7 mothers and fathers interviewed conjointly, 13 mothers interviewed alone) from 20 different families revealed the following themes: (a) efforts to prevent trauma to the child; (b) respect for the child's differentness and birth history; (c) developmental decisions in disclosure; (d) children's questions as motivations for disclosure; and (e) parents' feelings about disclosure. Findings confirm the importance of psychoeducation regarding methods and timing of disclosure and provide support for comparative research on contemporary disclosure, including racial differences in process and content.

Adolescent↗

PubMed2006

Parenting and adolescent problem behavior: an integrated model with adolescent self-disclosure and perceived parental knowledge as intervening variables.

Parental monitoring, assessed as (perceived) parental knowledge of the child's behavior, has been established as a consistent predictor of problem behavior. However, recent research indicates that parental knowledge has more to do with adolescents' self-disclosure than with parents' active monitoring. Although these findings may suggest that parents exert little influence on adolescents' problem behavior, the authors argue that this conclusion is premature, because self-disclosure may in itself be influenced by parents' rearing style. This study (a) examined relations between parenting dimensions and self-disclosure and (b) compared 3 models describing the relations among parenting, self-disclosure, perceived parental knowledge, and problem behavior. Results in a sample of 10th- to 12th-grade students, their parents, and their peers demonstrated that high responsiveness, high behavioral control, and low psychological control are independent predictors of self-disclosure. In addition, structural equation modeling analyses demonstrated that parenting is both indirectly (through self-disclosure) and directly associated with perceived parental knowledge but is not directly related to problem behavior or affiliation with peers engaging in problem behavior.

Adolescent↗

PubMed1992

Sex differences in self-disclosure: a meta-analysis.

A meta-analysis of 205 studies involving 23,702 Ss was conducted to determine whether there are sex differences in self-disclosure. Across these studies, women disclosed slightly more than men (d = .18). This effect size was not homogeneous across studies. Several moderator variables were found. Sex of target and the interaction effect of relationship to target and measure of self-disclosure moderated the effect of sex on self-disclosure. Sex differences in self-disclosure were significantly greater to female and same-sex partners than to opposite-sex or male partners. When the target had a relationship with the discloser (i.e., friend, parent, or spouse), women disclosed more than men regardless of whether self-disclosure was measured by self-report or observation. When the target was a stranger, men reported that they disclosed similarly to women; however, studies using observational measures of self-disclosure found that women disclosed more than men.

Female↗

PubMed2000

Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction.

OBJECTIVE: To investigate the level of parent satisfaction with the first communication of a diagnosis of developmental disability in their child ('disclosure') and the determinants of this satisfaction. METHODOLOGY: Interviews with parents of children with developmental disabilities regarding their experiences at the time of disclosure and their level of satisfaction with the process were carried out. RESULTS: Parent satisfaction with disclosure overall was found to be high (82.6%). Parents were more likely to be satisfied if they received a large amount of information. Parent satisfaction was found to be higher when the disclosing professional communicates well with the parents, has an understanding of parental concerns, and is direct in manner. Having both parents, the child or support people present were not found to have any significant relationship to parent satisfaction. CONCLUSIONS: The high level of satisfaction with disclosure in this study supports the claim made by earlier researchers that parental dissatisfaction with the disclosure process is not inevitable. The major determinants of parental satisfaction with disclosure are directness, understanding of parental concerns and good communication on the part of the disclosing professional, and receiving a large amount of information.

Adult↗

PubMed2001

Congruence of counselor self-disclosure and perceived effectiveness.

Sixty-seven college students rated a counselor on expertness, trustworthiness, and attractiveness based on reading 1 of 2 randomly assigned session transcripts. The desire to choose the depicted counselor was also measured. In both transcripts, the counselor self-disclosed his or her use of prayer. A single-client statement varied across the 2 transcripts such that one contained a congruent counselor self-disclosure (counselor disclosure after client disclosure) and the other included an incongruent self-disclosure (counselor disclosure without client disclosure). A potential covariate, religiosity, was examined but did not draw significant variance. Participants in the congruent group reported a more favorable total perception, a higher attractiveness perception, and a greater desire to choose the counselor than did participants in the incongruent group. Limitations and implications for future research are discussed.

Adolescent↗

PubMed1994

The influence of therapeutic self-disclosure on perceived marital intimacy.

This study examines the effect of therapeutic changes in a couple's self-disclosure behavior and its impact on their perception of their marital intimacy. Twenty couples participated in 10 weekly sessions of structured self-disclosure. The Self-Disclosure Coding System was used to rate audiotapes of the second and ninth sessions. Two rates, blind to treatment condition, demonstrated high interrater reliability on measures of changes in: 1) amount of self-disclosure; 2) whether self-references were positive, negative, or neutral; 3) depth of disclosures; and 4) rate of self-reference. Spouses, who were rated as disclosing in greater depth and referring to themselves in a more positive manner, perceived increased intimacy in their marriages as a consequence of therapy. The role of self-disclosure between spouses as a specific technique in marital therapy merits further study.

Female↗

PubMed2006

Sexual self-disclosure in Cyberspace among Taiwanese adolescents: gender differences and the interplay of Cyberspace and real life.

This study explored adolescents' sexual self-disclosure in real life and cyberspace, as well as gender differences of sexual self-disclosure in cyberspace. There were 115 male and 92 female adolescents who participated in this pretest and posttest survey. In general, the depth of sexual self-disclosure in real life was greater than in cyberspace, but the breadth of sexual selfdisclosure in both real life and cyberspace was equivalent. The cross-lagged panel analysis indicated that adolescents who were willing to self-disclose sexual topics in real life also selfdisclosed them more in cyberspace, and vice versa. Furthermore, sexual self-disclosure in both disclosing environments was mutually predicted by each other. The findings also indicated that cyberspace might not be a substitute channel of compensatory gratification for sexual self-disclosure in real life. As for gender differences, the breadth and depth of sexual self-disclosure in male adolescents were greater than in female adolescents, in both real life and cyberspace. Male adolescents tend to be more active in Internet sexuality than females. However, female adolescents' sexual emancipation in cyberspace is not evident in Taiwan. Possible reasons, implications, and limitations of the findings are discussed.

Adolescent↗

PubMed2005

Disclosure of prognosis to terminally ill patients: attitudes and practices among French physicians.

BACKGROUND: Disclosure of the prognosis to terminally ill patients is a strong prerequisite for integrating the physical, psychological, spiritual, and social aspects of end-of-life care. OBJECTIVE: This study aimed to assess French physicians' general attitudes and effective practices (with patients followed up to death recently) toward such disclosure. DESIGN/SUBJECTS: We used data from a cross-sectional survey conducted among a national sample of 917 French general practitioners, oncologists, and neurologists. RESULTS: A majority of respondents opted for prognosis disclosure only at patients' request, very few opted for systematic disclosure without patient's request, and a significant minority opted for systematic concealment. Concerning deceased patients described by respondents, 44.5% of competent patients were informed of prognosis by their physician, 27.3% were informed by someone else, 9.0% refused to be informed, and 19.2% were simply not informed. Concealment was more frequent for older patients, and physicians involved in a nongovernmental organization (NGO) for patients' support were more likely to disclose the prognosis, even without patient's request. CONCLUSIONS: Disclosure of the prognosis to terminally ill patients is still far from systematic in France. Further research is needed to better understand the motivations of French physicians' disclosure practices, which are probably culturally shaped.

Adult↗

PubMed1995

Self-disclosure of HIV infection among men who vary in time since seropositive diagnosis and symptomatic status.

OBJECTIVE: To assess self-disclosure of HIV-positive serostatus to family, friends, and intimate lovers among asymptomatic and symptomatic men who varied in length of time since HIV-seropositive diagnosis. Additionally, the study assessed the anticipated and actual interpersonal consequences of disclosure. METHODS: A multiethnic sample of 684 men with HIV/AIDS completed self-administered questionnaires at two HIV-outpatient clinics in Los Angeles. The cross-sectional analysis stratified the men by time since testing HIV-seropositive and symptomatic status. Disclosure to six significant others (intimate lover, close friend, mother, father, sister, brother) was examined in univariate and multivariate analyses. RESULTS: Men recently diagnosed HIV-seropositive (within 2-4 months) were more likely to have informed intimate lovers and friends than family members; disclosure to father was extremely low. Disclosure was generally lower among asymptomatic than symptomatic men; 21% of asymptomatic men who had tested HIV-seropositive in the previous year had not informed any of the six significant others considered in the study. Disclosure rates were higher among men diagnosed less recently. The interpersonal reactions of those informed were more favorable than the reactions non-disclosers anticipated; however, both actual and anticipated reactions were generally supportive. CONCLUSION: Many asymptomatic men inform few or no significant others of their HIV infection in the first few months after HIV diagnosis. Given the generally supportive reactions reported, HIV-seropositive men should be encouraged, when appropriate, to inform family, friends, and intimate lovers of their serostatus.

Acquired Immunodeficiency Syndrome↗

PubMed1993

Developmental differences in detection and disclosure of sexual abuse.

OBJECTIVE: This study examined the role of developmental differences in the detection and disclosure of child sexual abuse. METHOD: A random medical record review was conducted of 72 children and adolescents seen over a consecutive 3-year period for suspected sexual abuse in the emergency room of a pediatric hospital. The following data were gathered: (1) demographic information, (2) presenting symptomatology that initiated caregiver decision to seek evaluation, (3) type of disclosure (purposeful or accidental), and (4) precipitants to disclosure. RESULTS: Preschool age children were significantly more likely than school age children and adolescents to exhibit behavioral or physical symptoms that prompted caregivers' suspicion of sexual abuse. Preschool age children made disclosures accidentally and typically with an immediate precipitating event unrelated to the abuse itself. In contrast, sexual abuse disclosures from school age children were purposeful and not associated with a precipitating event. CONCLUSIONS: Practitioners need to be aware of the developmental differences in the detection of sexual abuse, including the forces that inhibit disclosure in older children.

Adolescent↗