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PubMed2006

Effect of antiretroviral treatment and counselling on disclosure of HIV-serostatus in Johannesburg, South Africa.

This prospective non-randomized study of clinic attendees, compares self-reported HIV disclosure patterns in relation to access to antiretroviral access and counselling. It was carried out in public sector hospital HIV clinics in Johannesburg, South Africa, and 144 HIV-positive men and women attending the HIV clinics participated in the study.The results showed that there was no correlation between being on antiretroviral therapy and disclosure of HIV status. There was also no correlation between disclosure of HIV status and with different levels of counselling and access to support groups. Disclosure levels were high (92% told at least one person), however, there was a high level of delayed (15% greater than a year) or non-disclosure (21%) to partners. Family members and partners provided most moral support after disclosure. Having access to antiretroviral therapy and support groups and available counselling did not seem to affect disclosure patterns. It is possible that a patients beliefs about their treatment plays a more important role for disclosure than the actual treatment itself. Other factors are also likely important for disclosure, such as the patient's social network especially with their families, and knowledge of the disease.

Adult↗

PubMed1999

The parent disclosure interview.

As the number of HIV-infected women and children in the USA has increased, clinicians and researchers have debated the benefits and risks of disclosure of parental HIV status to children. Disclosure is usually ascertained through interviews of unknown reliability. Given the need to advance knowledge regarding the benefits and risks of disclosure of parental HIV status to children, a reliable and comprehensive disclosure interview is needed. The Parent Disclosure Interview (PDI) was developed for this purpose. In order to study its reliability, 29 HIV-infected mothers were administered the PDI twice, on average one week apart, by two different female interviewers. Kappa statistics indicate that the PDI is highly reliable in most content areas. Researchers may use the interview for comparing the prevalence of disclosure among different groups of HIV-infected parents. Practitioners who assist parents in making decisions about disclosure of HIV status to children may use the interview to obtain a baseline assessment of the clients' disclosure history and attitudes towards disclosure.

Adult↗

PubMed2003

Disclosure of HIV infection: how do women decide to tell?

This descriptive study explores the phenomenon of disclosure of HIV infection by women. Specifically, we examined women's level of disclosure to various groups and how these disclosure decisions are made. The sample consisted of 322 HIV-infected women residing in the southern US. Participants were predominantly African-American, single women of reproductive age with yearly incomes less than $10,000. Data were collected at the first interview of a longitudinal study of reproductive decision making. Findings showed that the majority of the women had disclosed to some sex partners, close family and friends, and health care professionals. However, for a group of women, disclosure of HIV infection is a difficult issue supporting the need for health education and counseling. Qualitative data were analyzed using content analysis and revealed three major categories describing how women make disclosure decisions: full disclosure, criteria for disclosure and emotional disclosure. Quantitative analysis revealed few demographic differences among women in the three disclosure categories. These findings provide insight that can assist those working with HIV-infected women in helping them decide not only to whom they disclose, but how best to disclose.

Adolescent↗

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↗

PubMed2004

What do physicians tell patients about themselves? A qualitative analysis of physician self-disclosure.

OBJECTIVE: Physician self-disclosure (PSD) has been alternatively described as a boundary violation or a means to foster trust and rapport with patients. We analyzed a series of physician self-disclosure statements to inform the current controversy. DESIGN: Qualitative analysis of all PSD statements identified using the Roter Interaction Analysis System (RIAS) during 1,265 audiotaped office visits. SETTING AND PARTICIPANTS: One hundred twenty-four physicians and 1,265 of their patients. MAIN RESULTS: Some form of PSD occurred in 195/1,265 (15.4%) of routine office visits. In some visits, disclosure occurred more than once; thus, there were 242 PSD statements available for analysis. PSD statements fell into the following categories: reassurance (n = 71), counseling (n = 60), rapport building (n = 55), casual (n = 31), intimate (n = 14), and extended narratives (n = 11). Reassurance disclosures indicated the physician had the same experience as the patient ("I've used quite a bit of that medicine myself"). Counseling disclosures seemed intended to guide action ("I just got my flu shot"). Rapport-building disclosures were either humorous anecdotes or statements of empathy ("I know I'd be nervous, too"). Casual disclosures were short statements that had little obvious connection to the patient's condition ("I wish I could sleep sitting up"). Intimate disclosures refer to private revelations ("I cried a lot with my divorce, too") and extended narratives were extremely long and had no relation to the patient's condition. CONCLUSIONS: Physician self-disclosure encompasses complex and varied communication behaviors. Self-disclosing statements that are self-preoccupied or intimate are rare. When debating whether physicians ought to reveal their personal experiences to patients, it is important for researchers to be more specific about the types of statements physicians should or should not make.

Counseling↗

PubMed2004

Is physician self-disclosure related to patient evaluation of office visits?

CONTEXT: Physician self-disclosure has been viewed either positively or negatively, but little is known about how patients respond to physician self-disclosure. OBJECTIVE: To explore the possible relationship of physician self-disclosure to patient satisfaction. DESIGN: Routine office visits were audiotaped and coded for physician self-disclosure using the Roter Interaction Analysis System (RIAS). Physician self-disclosure was defined as a statement describing the physician's personal experience that has medical and/or emotional relevance for the patient. We stratified our analysis by physician specialty and compared patient satisfaction following visits in which physician self-disclosure did or did not occur. PARTICIPANTS: Patients (N= 1,265) who visited 59 primary care physicians and 65 surgeons. MAIN OUTCOME MEASURE: Patient satisfaction following the visit. RESULTS: Physician self-disclosure occurred in 17% (102/589) of primary care visits and 14% (93/676) of surgical visits. Following visits in which a primary care physician self-disclosed, fewer patients reported feelings of warmth/friendliness (37% vs 52%; P =.008) and reassurance/comfort (42% vs 55%; P =.027), and fewer reported being very satisfied with the visit (74% vs 83%; P =.031). Following visits in which a surgeon self-disclosed, more patients reported feelings of warmth/friendliness (60% vs 45%; P =.009) and reassurance/comfort (59% vs 47%; P=.044), and more reported being very satisfied with the visit (88% vs 75%; P =.007). After adjustment for patient characteristics, length of the visit, and other physician communication behaviors, primary care patients remained less satisfied (adjusted odds ratio [AOR], 0.45; 95% confidence interval [CI], 0.24 to 0.81) and surgical patients more satisfied (AOR, 2.22; 95% CI, 1.12 to 4.50) after visits in which the physician self-disclosed. CONCLUSIONS: Physician self-disclosure is significantly associated with higher patient satisfaction ratings for surgical visits and lower patient satisfaction ratings for primary care visits. Further study is needed to explore these intriguing findings and to define the circumstances under which physician self-disclosure is either well or poorly received.

Female↗

PubMed2006

Disclosure patterns within social networks of gay men and lesbians.

Gay men and lesbians must make decisions about disclosure of their sexual orientation. Past research has focused on an individual's overall level of disclosure or on disclosure to a specific subset of individuals. This study used a new measure, the Disclosure Grid, to assess the disclosure patterns of 89 gay men and 55 lesbians across their entire social network. In addition to assessing disclosure to each network member, the Grid also assessed perceived relationship quality prior to disclosure and currently. Finally, the Grid assessed perceptions of each network member's initial and current acceptance of the gay or lesbian person's sexual orientation. Data provide a rich portrait of disclosure patterns among a heterogeneous, urban sample of lesbians and gay men. Analyses also found support for three hypotheses about disclosure, relationship quality, and acceptance. For example, it was found that participants have better relationships with individuals they have directly told about their sexual orientation than with people who found out in an indirect manner.

Adolescent↗

PubMed2003

Verbal and non-verbal disclosure of recalled negative experiences: relation to well-being.

This study investigated the relationship between methods of disclosure of recalled negative experience and well-being. Six first-year undergraduate class groups (N = 100) at an Australian university completed pre- and post-intervention measures of psychological and psychophysical well-being. For the disclosure intervention, three groups wrote, drew, or drew-and-wrote about a recalled negative experience (RNE groups); the three non-disclosure groups wrote, drew, or drew-and-wrote on neutral topics (NT groups). The expectation that disclosure of negative experiences would enhance well-being was partly supported, with writing and drawing-and-writing disclosure groups reporting increased psychological, but not psychophysical, well-being. As predicted, verbal disclosure methods were more effective than non-verbal methods, with the draw-and-write group showing the greatest improvement. Unexpectedly, disclosure via drawing alone was associated with decreased psychological well-being. Against predictions, changes were found in two NT groups: The draw-and-write group reported improved psychological, and the draw group improved psychophysical well-being. It was concluded that verbal disclosure, especially when combined with the non-verbal method of drawing, may enhance psychological well-being, but that drawing, without accompanying verbalization, may decrease psychological well-being. It is suggested that future studies address variables such as level of disclosure, content and time of the negative experience, with time taken to manifest changes in well-being, using both subjective and objective indicators.

Adolescent↗

PubMed2004

Health plan members' views about disclosure of medical errors.

BACKGROUND: Various authorities and national organizations encourage disclosing medical errors, but there is little information on how patients respond to disclosure. OBJECTIVE: To examine how the type of error, severity of adverse clinical outcome, and level of disclosure affect patients' responses to error and disclosure. DESIGN: Mail questionnaire survey (8 versions were developed) varying 3 factors in a completely crossed, randomized, factorial design. Each questionnaire included a vignette describing 1) a medical error (failure to check for penicillin allergy or inadequate monitoring of antiepileptic medication); 2) an associated clinical outcome (life-threatening or less serious); and 3) a physician-patient dialogue, with either full disclosure (acceptance of responsibility and an apology) or nondisclosure (expression of regret without acceptance of responsibility or an apology). SETTING: New England-based health plan. PARTICIPANTS: Random sample of 1500 adult members received the questionnaire, with a 66% response rate. MEASUREMENTS: Likelihood of changing physicians, likelihood of seeking legal advice, ratings of patient satisfaction, trust and emotional reaction in response to a vignette and dialogue, and views on medical error and disclosure. RESULTS: Full disclosure reduced the reported likelihood of changing physicians and increased patient satisfaction, trust, and positive emotional response. Full disclosure reduced the reported likelihood of seeking legal advice in only 1 error-and-outcome vignette. In the other vignettes, the percentage of patients indicating that they would seek legal advice was relatively high even with full disclosure. Almost all respondents (98.8%) wanted to be told of errors, most (83%) favored financial compensation if harm occurred, and few (12.7%) favored compensation if no harm occurred. LIMITATIONS: Since the study was done in the context of a managed care plan in one geographic area, it could not assess whether the results are generalizable to other populations. In addition, it could not determine whether responses to the simulated situations used predict responses to real situations. CONCLUSIONS: Patients will probably respond more favorably to physicians who fully disclose medical errors than to physicians who are less forthright, but the specifics of the case and the severity of the clinical outcome also affect patients' responses. In some circumstances, the desire to seek legal advice may not diminish despite full disclosure.

Adult↗

PubMed1999

FASB Statement No. 132 simplifies benefits disclosures.

In February 1998, the FASB issued Statement of Financial Accounting Standards No. 132, Employers' Disclosures about Pensions and Other Postretirement Benefits. The new standard is designed to streamline pension and other postretirement benefits disclosures in public and nonpublic entities' financial statements. For nonpublic entities, the statement eliminates separate disclosures of the components of net periodic benefit cost, eliminates the disclosure of the components of benefit obligations and of alternative obligation measures, eliminates the disclosure of plan provisions, adds the disclosure of comprehensive income, eliminates the disclosure of sensitivity to changes in healthcare trend rates, and standardizes the disclosures for pension and other postretirement benefits. Financial managers and their organizations' actuaries and auditors should work together to determine which disclosures their organizations should make to be in compliance with FASB Statement No. 132.

Accounting↗

PubMed1998

[Current trends and problems in disclosure to lung cancer patients].

To assess current trends in the disclosure of cancer, we studied patients with primary lung cancer. Ninety-nine of 101 surgical patients (98.0%) and 96 of 128 non-surgical patients (75.0%) had been informed of their illness. Family members of 2 surgical patients refused to allow disclosure due to concerns about mental intolerance. Reasons for non-disclosure to non-surgical patients ranged from rejection by family members (29 patients) to a lack of ability to understand (3 patients). No mental problems were observed after disclosure. All but 11 patients were informed of their cancers by their physicians. Decisions regarding disclosure were not related to the pathological type or clinical stage of the cancer. For example, small cell carcinoma did not influence methods of or decisions concerning disclosure. Among non-surgical patients, the frequency of disclosure decreased with aging. However, no clear-cut factor appeared to influence the disclosure of metastatic sites. Views about informed consent are still at a transitional stage in Japan. The doctrine that patients have the right to be informed of their cancers and to choose their treatment has not always been the best policy in practice. Nevertheless, it seems desirable that approaches to disclosure adequately reflect the special needs of each patient and provide as much information as possible to allow each patient to make an accurately informed decision about treatment options. Such approaches would foster better relationships between physicians and their patients and relieve physicians from pressure to tell a medical lie.

Adult↗

PubMed2026

Pathways of onward HIV disclosure in relationships among young people living with vertically acquired HIV receiving antiretroviral therapy: A qualitative analysis from the BREATHER Plus trial, South Africa.

For young people living with HIV (YPLHIV) navigating their status since birth, managing onward disclosure of a potentially stigmatising condition in relationships is challenging, and may or may not lead to social support, with implications for wellbeing. In a clinical trial setting in KwaZulu-Natal, South Africa, we investigate how young people living with vertically acquired HIV navigate onward disclosure. Data were from the qualitative component of the BREATHER Plus randomised controlled trial evaluating the efficacy, safety and acceptability of short-cycle dolutegravir/tenofovir-based triple antiretroviral therapy (ART) in young people aged 12-19 years. We analyse data on 35 participants receiving ART engaged in clinical trials at the research site: 29 in longitudinal in-depth interviews (IDIs) and 12 across three focus group discussions (FGDs), including 6 in IDIs and FGDs. The Disclosure Processes Model was applied in the thematic analysis. Pre-disclosure was characterised by social assessments of potential confidants. During disclosure, reciprocal vulnerability and partial information-sharing were employed. Post-disclosure processes entailed linear and non-linear feedback trajectories, impacting future disclosures. The findings show that the study cohort of young people receiving ART navigated many bidirectional disclosure pathways to maintain social connections in relationships, and counselling guidelines need to be responsive to this.

Humans↗

PubMed2006

Correlates of sex without serostatus disclosure among a national probability sample of HIV patients.

We examined potential correlates of sex without HIV disclosure within a sample of 875 participants from the HIV Cost and Services Utilization Study. Interviews with each participant assessed sexual activities with up to six recent partners, and this study included both respondent and partnership characteristics. Compared with marriage and/or primary same-sex relationships, occasional partnerships and one-time encounters were associated with sex with disclosure, and shorter relationships were more likely to involve sex without disclosure. Knowledge of partner serostatus was also associated with sex without disclosure. Women were less likely to have sex without disclosure than men having sex with men. We found an association between the perceived duty to disclosure to all partners and sex without disclosure, while we found no association in multivariate analyses between outcome expectancies and sex without disclosure.

Adult↗

PubMed2004

An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers.

Disclosure of the results of a positive genetic mutation to offspring can be challenging. The purpose of this study was to investigate the content and process of disclosure from BRCA1/2 carriers to their offspring. A semi-structured questionnaire focused on the disclosure processes between parent and offspring. Thirty-one/40 mothers with BRCA1/2 mutations completed the cross-sectional survey. Sixteen carriers (51.6%) chose to disclose their results to all of their children, thirteen carriers (41.9%) chose not to disclose their results, and two carriers (6.5%) chose to disclose to some of their children. The age of a child appeared to be the most significant contributing factor in the decision to disclose. The mean age of the offspring who learned of the positive test result was 24.3 years with most carriers advocating the ideal age range for disclosure from 19 to 25 years. There was a discrepancy between actual and potential disclosure topics between those who had disclosed and those who had not disclosed at the time of the survey. Women who disclosed their result tended to do so alone, within a week of learning their own results, equally to male and female offspring and expressed that the relationships between themselves and their children had strengthened since revealing the presence of a genetic mutation in the family. Women who had not disclosed the results of their genetic test to offspring were significantly more interested in receiving additional individual counseling, educational videos, and email newsletters that focus on disclosure of this complex and life altering information compared to those who had already disclosed. Disclosure of BRCA1/2 results is determined primarily by age of offspring, is usually done by women alone, relatively soon after receiving results and appears to enhance the relationships between mothers and offspring. Both disclosed and non-disclosed carriers demonstrated significant interest in a variety of interventions to support the disclosure process.

Adolescent↗

PubMed2006

The role of HIV serostatus disclosure in antiretroviral medication adherence.

This study examined the relationship between HIV serostatus disclosure and adherence to antiretroviral therapy (ART). The study was conducted with 215 HIV-seropositive patients who demonstrated poor adherence (<80%) and who were in serodiscordant relationships. Participants completed self-report measures regarding HIV serostatus disclosure and reasons for missing ART doses, as well as electronic monitoring of ART adherence (MEMS caps). Overall, 19% of the sample reported missing medication doses in the last two months due to concerns regarding serostatus disclosure. Participants who reported greater serostatus disclosure to others demonstrated higher rates of adherence, and this relationship remained after controlling for other explanatory variables. The relationship between disclosure and adherence was not mediated by practical support for adherence from others. Interventions to improve ART adherence should address the role of serostatus disclosure by providing patients with skills to maintain adherence in contexts of non-disclosure and to make informed choices regarding selective disclosure.

Adult↗

PubMed2005

"A burden in your heart": lessons of disclosure from female preadolescent and adolescent survivors of sexual abuse.

OBJECTIVES: To enhance understanding of the sexual abuse disclosure process from the perspective of preteen and teenage survivors. To reconsider prominent models of the disclosure process in light of our findings. METHODS: We conducted a secondary analysis of data from four focus groups in which 34 preadolescent and adolescent female survivors of sexual abuse had been asked about their treatment experiences. Girls often recounted disclosing their victimization to others. Using the disclosure segment as our unit of analysis, we isolated 106 for study. During analysis, we wrote narrative summaries of each segment's significance, grouped these conceptually, and examined their interconnectedness. When synthesized, individual experiences of disclosing contributed to understanding the overall disclosure process. RESULTS: Three phases were identified: Self, where children come to understand victimization internally; Confidant Selection-Reaction, where they select a time, place, and person to tell and then weather that person's reaction (supportive or hostile); and Consequences (good and bad) that continued to inform their on-going strategies of telling. The actions and reactions of adults were significant and informed the girls' decisions. CONCLUSIONS: We advocate integrating existing theories and research into a model which views the disclosure process from the child's perspective and includes pre-disclosure and a post-initial public disclosure stages. The model conceptualizes disclosure as an iterative process in which children interact with adults and incorporate responses into their on-going decisions about telling (recant, deny, affirm, etc.). The combined model should recognize the concerns and position of adults as well as the perspective and logic of youth.

Adolescent↗

PubMed2003

Why children tell: a model of children's disclosure of sexual abuse.

OBJECTIVE: The present study investigated variables associated with delay of disclosure of child sexual abuse and tested a model of time to disclosure. METHOD: Data were obtained for 218 alleged child sexual abuse victims whose cases had been referred to District Attorneys' Offices. Five variables were posited to influence the delay between an abusive event and children's disclosure of that event to a reporting adult: child's age, gender, type of abuse experienced (intrafamilial or extrafamilial), perceived responsibility for the abuse, and fear of negative consequences of disclosure. These variables were used to create a model of factors influencing children's disclosure of sexual abuse. RESULTS: Results indicated that age, type of abuse, fear of negative consequences, and perceived responsibility all contributed to predicting time to disclosure. There was significant support for the model, suggesting that children who were older, came from incestuous families, felt greater responsibility for the abuse, and feared negative consequences of disclosure took longer to disclose. CONCLUSIONS: Children's cognitive appraisal of others' tolerance of disclosure of child sexual abuse, and their own perceptions of responsibility for the abuse, are crucial to the decision to disclose. When evaluating children for possible sexual abuse, developmental, cognitive, and socio-emotional factors need to be taken into consideration.

Adolescent↗

PubMed2000

Delay in disclosure of childhood rape: results from a national survey.

OBJECTIVE: This study sought to gather representative data regarding the length of time women who were raped before age 18 delayed prior to disclosing such rapes, whom they disclosed to, and variables that predicted disclosure within 1 month. METHOD: Data were gathered from 3,220 Wave II respondents from the National Women's Study (Resnick, Kilpatrick, Dansky, Saunders, & Best, 1993), a nationally representative telephone survey of women's experiences with trauma and mental health. Of these, 288 retrospectively reported at least one rape prior to their 18th birthday. Details of rape experiences were analyzed to identify predictors of disclosure within 1 month. RESULTS: Fully 28% of child rape victims reported that they had never told anyone about their child rape prior to the research interview; 47% did not disclose for over 5 years post-rape. Close friends were the most common confidants. Younger age at the time of rape, family relationship with the perpetrator, and experiencing a series of rapes were associated with disclosure latencies longer than 1 month; shorter delays were associated with stranger rapes. Logistic regression revealed that age at rape and knowing the perpetrator were independently predictive of delayed disclosure. CONCLUSIONS: Delayed disclosure of childhood rape was very common, and long delays were typical. Few variables were identified that successfully predicted disclosure behavior, but older age and rape by a stranger were associated with more rapid disclosure. This suggests that the likelihood of disclosure in a given case is difficult to estimate, and predictions based on single variables are unwarranted.

Child↗