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PubMed2006

Making sense of syphilis: beliefs, behaviours and disclosure among gay men recently diagnosed with infectious syphilis and the implications for prevention.

BACKGROUND: The resurgence of syphilis in men who have sex with men (MSM) has proved remarkably resilient in the face of innovative control and prevention interventions. Understanding the determinants of the current outbreaks has been restricted by the available data. Qualitative work is needed to understand individual and community experiences of syphilis and to help guide new prevention and control efforts. METHODS: An exploratory study using semi-structured interviews with a convenience sample of MSM (n = 15), recently diagnosed with infectious syphilis, attending sexual health and HIV-outpatient services in Brighton, England. RESULTS: Analysis focussed on men's beliefs about syphilis, their experience of testing and being given a syphilis diagnosis, mediators of 'risky' sexual behaviour and disclosure to social and sexual contacts. Two beliefs--'syphilis is rare' and 'syphilis is dirty'--dominated respondents' accounts. These beliefs coloured every aspect of respondents' clinical and social experience of syphilis, and impeded disclosure and partner notification. They also contributed to misconceptions about behaviours with increased syphilis transmission risk, the mechanics of disease acquisition, health-seeking behaviours and risk-reduction strategies. CONCLUSIONS: The apparent failure of syphilis control measures so far may be due to our limited understanding of MSM's views and experience of STIs other than HIV Syphilis prevention needs to tackle MSM's widely held beliefs about sexual communication, risk behaviour and other STIs. The most useful health education interventions are likely to be those that build on MSM's significant knowledge base and address both the current syphilis crisis and wider sexual health promotion goals.

Adult↗

PubMed1975

The effects of instructions on self-disclosure.

In a study of the effects that instructions have on self-disclosure, two groups of male and female college students (N = 120) were asked to select items for discussion with a same sexed stranger under one of two sets of instructions: (a) Ss were asked to select items that they were interested in discussing or (b) Ss selected items they were willing to discuss. Results indicated that changing one word from "interested" to "willing" produced significantly higher potential disclosures in all Ss from low to high disclosers.

Female↗

PubMed1978

Effects of simulated approval-seeking and avoiding on self-disclosure, self-presentation, and interpersonal attraction.

Forty-eight undergraduate women assigned an approval-seeking or approval-avoiding role disclosed significantly more to a male listener (C) than did control Ss given no particular set, with no difference found between seeking and avoiding conditions in intimacy of disclosure. But content analyses indicated that approval-seeking Ss presented themselves significantly more positively, and approval-avoiding Ss significantly more negatively than did controls. These data supported the hypothesis that disclosure may serve as an instrumental affiliative act associated with both interpersonal approach and avoidance motives. The hypothesis that simulated attraction facilitates actual attraction was supported more clearly in analyses of Ss' liking ratings of C than in Ss' ratings of C's attractiveness or desirability as a dating partner. The latter findings are discussed in terms of intimacy implications of the attraction measures used.

Attitude↗

PubMed1995

The impact of Magic Johnson's HIV serostatus disclosure on unmarried college students' HIV knowledge, attitudes, risk perception, and sexual behavior.

Unmarried heterosexual college students' HIV knowledge, attitudes, risk perception, and sexual behavior were assessed before and after "Magic" Johnson revealed his HIV-positive serostatus. Students examined after the disclosure showed a small, though statistically significant, increase in scores on HIV knowledge. Analyses did not reveal any other differences between the pre- and postdisclosure samples. Several differences between men's and women's scores were found, however. In addition, participants in both groups demonstrated generally positive attitudes toward HIV and people with HIV disease; rated their risk of future HIV infection as none to minimal; and reported frequently engaging in vaginal, oral, and anal intercourse without the use of condoms. These results suggest that Magic's disclosure did not significantly affect these students' attitudes, risk perception, or sexual behavior and that such students continue to engage in behaviors that may put them at risk for HIV infection.

Adolescent↗

PubMed2004

Families affected by HIV: parents' and children's characteristics and disclosure to the children.

The reduced risk of mother-to-child transmission due to improved HIV treatment has resulted in an increasing number of healthy children born to mothers living with HIV. The study's objective was to identify the number of parents or caregivers in a sample of persons living with HIV in Flanders, the number of HIV-affected children as well as specific family-related characteristics. Using a structured survey quantitative data were assessed on a total of 628 patients at three Flemish Aids reference centres. Qualitative data were collected in a small sub-sample of African caregivers living in Flanders. Twenty-seven per cent of the overall sample had children younger than 18 years, totalling 165 HIV-affected families with 279 children. Parents from developing countries had significantly more children than European parents. One hundred and eighty-two (68%) of all children were HIV-negative, while the HIV status of 75 (28%) was unknown. Disclosure rate was low: 26 (10%) children were aware of the parental HIV disease. The study shows that HIV-affected families have to deal with complex psychosocial issues such as migration, family illness, family secrecy around HIV and disclosure. Service implications are discussed.

Adaptation, Psychological↗

PubMed2004

Infection control in the context of hepatitis C disclosure: implications for education of healthcare professionals.

INTRODUCTION: Previous investigation has shown that the health sector is a main source of discrimination against people with hepatitis C. This paper examines the perceptions and experiences of people with hepatitis C of their interactions with healthcare workers, particularly examining the implementation of infection control precautions. We contend that rather than applying infection control precautions universally, health care workers make judgements about individual patients and the likelihood that they are infected with hepatitis C. Thus, infection control practices can be used as a tool to discriminate against people with hepatitis C. Social identity theory is used to illustrate these insights and to propose recommendations for education of health care workers. METHOD: Semi-structured interviews with 19 people who had hepatitis C were conducted. The analysis examines issues of diagnosis, discrimination and disclosure in relation to healthcare workers' use of infection control procedures during clinical interactions. RESULTS: Participants described non-compliance with infection control guidelines by healthcare workers in a range of settings. In some instances, participants expressed disapproval of non-compliance, at other times participants felt vulnerable and discriminated against. Participants felt obliged to disclose their infections, but some decided against future disclosure because of negative reactions from healthcare workers. Infection control procedures were used as a tool to discriminate against some participants. DISCUSSION: Non-compliance with infection control guidelines persists among healthcare workers and can be identified by patients. A minority of workers use infection control as a discriminatory tool against those with hepatitis C. Further intervention is required to ensure infection control guidelines are enacted in the manner intended.

Adult↗

PubMed2000

Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties.

Predictive genetic testing presents unique issues in the legal and ethical debate concerning disclosure of information within the physician-patient relationship. A duty to disclose information to family members has been found when the disclosure is likely to result in the ability to mitigate the damaging effects of the disease. When evaluating the situation where a individual is at risk of Huntington's disease, the analysis must be different, as shown in this paper, and necessitates an ethical and legal examination of the consequences of receipt of the information on family members, those known but unknowing parties who are at risk of inheriting a genetic disease. This paper analyzes the potential legal duty of a physician to disclose or withhold genetic information from the family members of patients. Existing statutes governing genetic information do not directly address the interests of family members. Courts that have ruled on the duty to disclose medical or genetic information have analyzed these issues using traditional concepts of tort law. Yet the situation presented by Huntington's disease is unique and demands a different framework for analysis, given the late onset and lack of curative or ameliorative treatment. This paper also analyzes the ethical standards to be invoked when considering violating the privacy of a patient or a family member. The principles of autonomy and self-determination of family members are considered, versus the risk of harm and the privacy interest in not knowing potentially devastating information.

Confidentiality↗

PubMed2002

Voluntary disclosure of BRCA1 mutation test results.

This study assessed the probability that individuals tested for a BRCA1 gene mutation share their test results with family members, co-workers, and insurers. Members of a large kindred known to be at-risk for carrying a BRCA1 gene mutation were tested and they learned their results from a genetic counselor. During a follow-up interview, 4 months later, subjects were asked with whom they had shared their results. Respondents were most likely to have communicated results to family members, followed by co-workers, and insurers. Carrier status affected their willingness to disclose results to insurers. High rates of disclosure to family members should promote awareness of hereditary cancer risk. Selective disclosure to co-workers and insurers may promote information asymmetries that could affect employment and insurance markets.

Adult↗

PubMed2006

The validity and reliability of the affective competency score to evaluate death disclosure using standardized patients.

OBJECTIVE: To explore the validity and reliability of the affective competency score (ACS), compared to a global rating measure to predict overall competency to perform a death disclosure in a standardized patient exercise and to investigate useful thresholds of the ACS. METHODS: Thirty-seven fourth-year students underwent standardized patient training in death disclosure during a fourth-year emergency medicine clerkship. Students were evaluated using a checklist, an ACS, and a global rating assessment. ACS interrater reliability, interitem reliability, item-total reliability, and split-half reliability were calculated. Area under the curve (AUC) measurements were used to establish criterion validity. RESULTS: For the ACS, item-total correlations ranged from 0.76 to 0.85, 0.76 to 0.93, and 0.42 to 0.87; the split-half reliability was 0.82 (p = 0.0001), 0.86 (p = 0.0001) and 0.55 (p = 0.0007) for the standardized patient (SP), the faculty and the medical students, respectively. Interitem correlations were adequate. A moderate interrater correlation of the ACS was observed between the faculty observer and the SP (r = 0.47; p = 0.04); however, the medical students' self evaluation did not correlate significantly with either the SP (r = -0.04; p = 0.79), or the faculty observer (r = 0.00; p = 0.99). The AUC for was 0.98 (95% confidence interval [CI] 0.94 to 1.00), 0.87 (95% CI 0.73 to 0.99), and 0.74 (95% CI 0.53 to 0.95) for the faculty, SP, and medical student, respectively. CONCLUSIONS: The ACS may be a valid, reliable, and useful measure to assess communication skills by faculty or SPs in this setting. At an ACS score of 16, 19, and 21 points for faculty, SPs, and medical students, respectively, there is 100% specificity for the detection of competency assessed on a global rating. However, the ACS appears to have limited reliability and validity when used by medical students.

Adult↗

PubMed2002

Effects of guided written disclosure of stressful experiences on clinic visits and symptoms in frequent clinic attenders.

BACKGROUND: Psychosocial variables such as major stressful life events/daily stressful events have been associated with health care utilization. OBJECTIVE: Our aim was to examine the effects of a guided disclosure protocol (GDP) of past traumas on symptoms and clinic visits among frequent clinic attenders. METHODS: Forty-one frequent clinic attenders (> or =2 visits/3 months) took part. Patients were randomly assigned individually to either a casual content writing control group (n = 19) or a trauma content writing experimental GDP group (n = 22). GDP patients wrote about an upsetting event chronologically (day 1), verbally described their thoughts and feelings and described the event's impact on life (day 2), and finally wrote about their current perspective on and future coping with the event (day 3). Three months later, patients were reassessed blindly for symptoms and clinic visits, and an average of 15 months later they were assessed blindly for clinic visits again. RESULTS: Compared with controls, GDP patients reported lower symptom levels at 3 months (2.3 versus 5.2), and made fewer clinic visits during the 3 (1.3 versus 3.0) and 15 month (5.1 versus 9.7) follow-ups. The percentage of GDP patients making > or =10 visits during the 15 month follow-up was smaller (10%) than among controls (33%). CONCLUSIONS: The findings extend previous findings to frequent clinic users, using a new form of written disclosure aimed at shifting trauma from implicit to explicit memory. The GDP may be an inexpensive additional intervention in primary care for reducing symptoms and clinic visits among frequent clinic users.

Adult↗

PubMed2001

Gamete donation and anonymity: disclosure to children conceived with donor gametes should be optional.

To force potential parents to tell their child of his/her genetic origin as a requirement for admission into an infertility programme is both wrong and discriminatory. In addition, comparing the practice of using donor gametes to conceive a child with adoption is incorrect for a number of reasons. In this article we make the argument that mandatory disclosure is both inappropriate and intrusive, and the presently available data do not justify a rigid position. Furthermore, no reasonable, practical system can be envisaged to guarantee compliance with mandatory disclosure. Although it is entirely reasonable at the time of consultation to encourage couples to consider their positions and obtain a mutual agreement on their future intent prior to treatment, the final decision on this should be a matter of free choice within the context of the couple's own value system.

Disclosure↗

PubMed2004

Parents' knowledge about the donors and their attitudes toward disclosure in oocyte donation.

BACKGROUND: Oocyte donation is a popular treatment option among women with ovarian dysfunction. Little is known about the amount of information recipients have about their donors and if the amount of information the couple has relates to their plans to disclose. The purpose of this study was to assess the amount of information recipients had about their donors and their disclosure plans. METHODS: Sixty-two sets of oocyte donation parents from five programmes completed a self-report questionnaire. RESULTS: Ninety percent of both men and women knew their donor's age, ethnicity, hair colour, eye colour, height, weight, education and medical history. Significantly more women than men told others about using a donor to conceive, but two-thirds of women and men would not tell others if they had to do it over again. Fifty-nine percent of women and 52% of men planned to or had told their child; 34% of women and 41% of men do not plan to tell. The amount of information known about the donor was related to plans to tell the child for men only. CONCLUSION: Approximately half of couples plan to tell their child of their oocyte donor origin and a majority have told others but many regret having done so. Knowledge about the donor is related to disclosure for men only.

Adult↗

PubMed2004

Effects of written emotional disclosure on caregivers of children and adolescents with chronic illness.

OBJECTIVE: Tested feasibility of a written emotional disclosure intervention with caregivers of youths with chronic illness and its effects on measures of mood, physical symptoms, health-related quality of life, distress, and caregiver appraisal of stress and efficacy. METHODS: Measures were administered prior to and immediately after writing and 4 months later. Experimental group (n = 29) wrote about traumas and stressors while the control group (n = 25) wrote about summer activities for 20 minutes on three different days. RESULTS: Consistent with hypotheses, the experimental group experienced less positive affect, F(1, 54) = 4.68, p <.05, and more negative affect, F(1, 54) = 7.92, p <.01, and physical symptoms, F(1, 54) = 4.30, p <.05, immediately following writing than the control group. There were no significant Group x Time interactions on long-term mood, distress, health-related quality of life, or caregiver appraisal. Contrary to hypotheses, the control group had more vitality over time, F(1, 53) = 21.29, p <.001, than the experimental group. CONCLUSIONS: Recommendations include modifying the procedures to attain more control in applied settings and identifying specific processes that contribute to the efficacy of written emotional disclosure on well-being.

Adolescent↗

PubMed1992

Cancer diagnosis disclosure in a Spanish hospital.

At the Clinic Hospital in Barcelona, Spain, 167 cancer patients and 380 hospital health care workers were interviewed about cancer diagnosis disclosure. Only 25 patients (15%) were correctly informed of their diagnoses. Breast cancer patients were significantly more often informed than patients with other malignancies (p less than 0.05). Two hundred seventy-two of 380 hospital health workers interviewed (71%, p = 0.00) would want to know their own diagnoses should they suffer from cancer in the future, but only 19% (p = 0.00) would want such a diagnosis revealed to their similarly afflicted relatives. This information model, based on cancer taboo, is largely preferred by these healthy people and is followed by doctors, patients and family members. To inform our patients better, the mandatory uniform disclosure of the true diagnosis is not likely to be constructive at present. In our opinion a pragmatic approach is more realistic and humane. Nevertheless, we must hope that more modern cancer education will lead to the gradual elimination of this taboo in our society.

Aged↗

PubMed1997

The impact of illness disclosure and custody plans on adolescents whose parents live with AIDS.

OBJECTIVES: To describe the disclosure and custody planning of parents living with AIDS and the impact of these on their adolescents' adjustment. METHODS: An examination of the association of multiple behaviour problems in children and the illness disclosure and custody plans of their parents living with AIDS. RESULTS: Both mothers (87%) and fathers were significantly more likely to disclose their HIV serostatus to adolescents (73%), compared with younger children (23%); only 44% disclosed their illness to all their children; 11% disclosed to none. Most parents (80%) living with AIDS had discussed their custody plans. However, only 30% initiated legal plans, typically for younger children. Adolescents who were informed of their parents' serostatus engaged in more sexual risk acts, smoked more cigarettes, and reported more severe substance use and greater emotional distress than uninformed adolescents. Legal custody arrangements were not associated with adolescent adjustment at recruitment or follow-up. CONCLUSIONS: A longitudinal analysis of the impact on adolescents of the behaviours of parents living with AIDS is needed.

Acquired Immunodeficiency Syndrome↗

PubMed2002

Truth disclosure of cancer diagnoses and its influence on bereaved Japanese families.

The purpose of this study was to investigate how patients with cancer and their families are informed of the results of the patients' diagnoses. The bereaved families' assessments and satisfaction with the consequences of their decisions were examined after the patients' deaths. Data were collected from the bereaved families of 53 patients who had died of lung cancer at a Japanese university hospital between January 1994 and December 1997. Data were analyzed by employing descriptive statistics for each factor. Fifty-three bereaved families responded to the questionnaire. The true diagnosis-lung cancer-was disclosed to 15.1% of the patients, whereas 26.4% were told that they were suffering from lung tumors. Other less ominous clinical descriptions were given to 58.5% of the participants. Concerning the bereaved families' responses to the manner in which the decisions had been made on truth disclosure, the average degree of satisfaction was expressed as 3.7 cm on a 5.0-cm scale. An ambiguous expression such as "lung tumor" has been arbitrarily interpreted. However, simple truth disclosure to the patient does not necessarily satisfy a bereaved family. If family members can allay a patient's doubt about the diagnosis, the family's satisfaction may improve.

Attitude↗

PubMedDate not supplied

Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes.

BACKGROUND: Children with perinatally acquired HIV disease (PAHD) can be relatively symptom-free and live to school age and older. These children often confront their caregivers with questions about the illness and complex treatments; however, caregivers may try to avoid disclosing the diagnosis of PAHD to the child. PURPOSE: To generate a substantive theory that describes and explains how family caregivers manage diagnosis disclosure to a child who has PAHD. METHOD: Using grounded theory, a substantive theory was constructed based on the accounts of 18 ethnically diverse families. Eight families had 10 children with PAHD who had been told their diagnosis. Ten families had 10 children with PAHD who had not been told their diagnosis. RESULTS: The basic social psychological problem was identified as caregiver readiness to disclose the diagnosis. When the Time Comes was identified as the central phenomenon linked to the problem of caregiver readiness. Causal conditions, intervening conditions, and strategic responses of caregivers and children were discovered and are inextricably linked to the central phenomenon. CONCLUSIONS: The process by which family caregivers respond to diagnosis disclosure to children with PAHD is based on the perceived self-readiness of the caregiver to disclose the diagnosis and illness-related information to their child.

Adolescent↗

PubMedDate not supplied

Emotional repression, stress disclosure responses, and Epstein-Barr viral capsid antigen titers.

Based on the theory of psychosomatic inhibition, we hypothesized that subjects who abstained from disclosing emotional material on a laboratory task would have poorer control of latent Epstein-Barr virus (as evidenced by high titers for the viral capsid antigen), and similarly, those subjects with psychometrically derived repressive interpersonal styles would show the highest Epstein-Barr viral capsid antigen titers (EBV-VCA). Eighty first-year undergraduates completed a personality inventory and were asked to write an essay/letter for 30 minutes about a stressful event that had happened in their life. Blood was collected from each subject immediately after writing. Essays were scored for degree of emotional disclosure according to the ratio of emotional-to-total words used. Degree of disclosure was found to be associated with impaired control of latent EBV (high antibody titers to the EBV-VCA) controlling for medication use, recent sleep loss, physical activity, lean body mass, caloric intake, and alcohol and recreational drug use. Further, individual differences in interpersonal style (characterized by emotional suppression) related to this immunologic marker in a similar fashion, and these two factors interacted in determining EBV-VCA titers. That is, Repressors who were either high or low disclosers had high levels of antibody titer to EBV-VCA, whereas only those Sensitizers who did not disclose had high antibody titers to EBV-VCA. In addition to supporting the hypothesis that emotional repression is associated with some aspects of host-virus interaction, the present findings highlight the importance of obtaining behavioral and psychometric assessments in psychoimmunologic investigations of this abstract affective construct (i.e., repression).

Adolescent↗