The correlation of two self-disclosure inventories with actual self-disclosure: a validity study.
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Communication↗
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Searching for a balance in medical data disclosure: report of a study. Committee on PSRO Disclosure Policy.
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Civil Rights↗
Disclosure or non-disclosure: that is the question.
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Allied Health Personnel↗
Disclosure of HIV infection in south India: patterns, reasons and reactions.
The aim of this study was to examine aspects related to self-disclosure of their seropositive status among 68 persons (35 men and 33 women) infected with HIV. Data was collected through in-depth interviews to assess ways in which HIV-related disclosure took place and factors that influenced disclosure. The data was subjected to both qualitative and quantitative analysis. Voluntary disclosure was noted in 44 subjects (65%), while in other 24 (35%) subjects disclosure occurred without consent. Of those who disclosed, 78% of the subjects reported self-disclosure to family members, 7% to friends and 15% exclusively to health professionals. Expectations of emotional and material support from the family members were one of the commonly cited reasons for voluntary disclosure. Only half of the subjects disclosed complete and truthful information while in the rest, disclosure was partial or disguised as a less stigmatizing illness. Stigma, fear of discrimination, disgrace to family and self and futility were reported as the main reasons for non-disclosure. The majority of the subjects (73%) reported anticipation of negative societal reaction as the main concern following disclosure. In India, where HIV-related counselling services are still not freely available, there continue to be non-uniform practices related to confidentiality and disclosure. The findings of this study are important in identifying cultural factors related to disclosure in HIV infection and highlight the need to examine the varying patterns and concerns related to disclosure among HIV-infected individuals.
Adolescent↗
Parents' disclosure of HIV to their children.
OBJECTIVE: Parents' disclosure of their HIV serostatus to all of their children is described over time and the impact of disclosure is examined for their adolescent children. DESIGN A representative cohort of parents living with HIV (n = 301) and their adolescent children (n = 395) was recruited and assessed repeatedly over 5 years. METHODS: Disclosures by parents living with HIV of their HIV status to their children were examined in three ways: (i) trends in disclosure over 5 years to all children; (ii) factors associated with parental disclosure; and (iii) the impact of disclosure on adolescent children (not younger children). RESULTS: Parents were more likely to disclose to older (75%) than to younger children (40%). Mothers were more likely to disclose earlier than fathers and they disclosed more often to their daughters than to their sons. Parents were more likely to disclose over time to children of all ages; disclosure did not vary according to parents' ethnicity, socio-economic status, self-esteem, or mental health symptoms. Disclosure was significantly more common among parents with poor health, more stressful life events, larger social networks, and those who perceived their children experiencing more HIV-related stigma. Over time, poor health status and a self-destructive coping style were associated with higher rates of disclosure. Parental disclosure was significantly associated with more problem behaviors and negative family life events among their adolescent children. CONCLUSION: Parental disclosure of HIV status is similar to disclosures by parents with other illnesses. Clinicians must assist patients to make individual decisions regarding disclosure.
Adaptation, Psychological↗
Disclosure of HIV serostatus to sex partners: a new approach to measurement.
OBJECTIVE: The objective of this study was to assess measurement of full HIV serostatus disclosure (before sex), delayed disclosure (after sex), and no disclosure to both current and recent past (in the last year) sex partners. GOAL: The goal of this study was to propose a refined measure of HIV disclosure. STUDY DESIGN: This study consisted of a cross-sectional study using audio computer-assisted survey interviews with 63 persons with HIV/AIDS who reported on 145 sex partnerships. RESULTS: Considering all sex partners in the past year, full disclosure occurred in 54%, delayed disclosure in 22%, and no disclosure occurred in 24%. Delayed/no disclosure among all partners in the past year was substantially higher than standard measures of no disclosure among current partners only, 46% (95% confidence interval [CI], 38-54%) versus 12% (95% CI, 5-19%). No disclosure was more common in past partnerships than current partnerships (40% vs. 12%, P < 0.01). Predictors of disclosure included partnership characteristics of having an HIV-positive partner and being in a primary, heterosexual relationship. CONCLUSIONS: Standard measures may underestimate nondisclosure. Counseling and interventions that promote disclosure should include strategies for disclosure in ongoing relationships, assistance in notifying past partners, and a focus on partnership characteristics and dynamics.
Computer-Aided Design↗
HIV-disclosure in the context of vertical transmission: HIV-positive mothers in Johannesburg, South Africa.
HIV-disclosure among childbearing women remains poorly understood, particularly in sub-Saharan Africa. This paper chronicles disclosure experiences of 31 women attending prevention of mother-to-child HIV transmission services in Johannesburg. Data collection entailed repeat in-depth interviews over a nine-month period. Virtually all women (93.5%) had told at least one person (usually a partner), most voluntarily and within a week of the test result. Secondary disclosure was most likely with female family members, through indirect means and involuntary. Confidentiality breach by primary targets likely contributed to the observed high rates of involuntary secondary disclosure and negative secondary disclosure experiences. For most mothers, voluntary disclosure was driven by the desire to ensure adequate infant care and avoid vertical HIV transmission. The impact of disclosure was not always clear-cut. While most primary disclosure experiences were ultimately constructive, secondary disclosure more likely led to rejection, stigmatization and the withholding of financial support. Our data illustrate the influence of social contextual factors on disclosure patterns and impact. For these mothers, socio-cultural norms, the current media and political environment surrounding HIV/AIDS, household composition and social networks and childbearing status shaped disclosure experiences; sometimes constraining disclosure circumstances and sometimes creating a safe space to disclose. Programmatic implications are also discussed.
Adaptation, Psychological↗
Psychological impacts of APOE genotype disclosure among Latinos in New York City: a randomized controlled trial.
INTRODUCTION: Latinos face increased Alzheimer's disease (AD) risk but are underrepresented in studies of APOE genotype disclosure. We evaluated the psychological impacts of APOE disclosure in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) study, a randomized controlled trial among Latinos in New York City. METHODS: Latino northern Manhattan residents without self-reported AD (mean age 52, 69% women, 49% college graduates) were randomized in the period August 2021 to July 2024 to receive AD risk estimates to age 85 incorporating APOE genotype, family history, and ethnicity (disclosure) or the same factors excluding APOE (non-disclosure). Bilingual genetic counselors delivered risk estimates to both groups, unmasked to randomization. Follow-up surveys were completed 6 weeks, 9 months, and 15 months after risk delivery. Primary outcomes were impact of genetic testing in AD (IGT-AD) and Impact of Event Scale-Revised (IES-R). Secondary outcomes were changes from baseline in depression, anxiety, and perceived AD threat. Analyses used intention-to-treat with multiple imputation. RESULTS: Disclosure (N = 194) and non-disclosure (N = 180) groups did not differ on IGT-AD (mean disclosure-non-disclosure difference [MD] at 6 weeks: -1.5, p = 0.14; 9 months: -1.2, p = 0.35; 15 months: -2.0, p = 0.07), IES-R (MD at 6 weeks: 0.00, p = 0.98; 9 months: 0.01, p = 0.84; 15 months: 0.03, p = 0.64), or change in secondary outcomes. Occurrence of disclosure-related adverse events was similar in the disclosure (N = 2) and non-disclosure (N = 3) groups. DISCUSSION: In this Latino cohort, APOE disclosure did not have clinically significant adverse psychological effects, addressing an important evidence gap. TRIAL REGISTRATION: ClinicalTrials.gov NCT04471779.
Aged↗
Many ways of telling: expanding conceptualizations of child sexual abuse disclosure.
OBJECTIVE: The aim of this study was to explore influences that inhibit or promote child sexual abuse (CSA) disclosure. METHOD: Face-to-face in-depth interviews of 24 female and male survivors of CSA were conducted, using the Long-Interview method to trace disclosure processes. Verbatim transcriptions of the interviews were analyzed by hand and by using a computerized data analysis system (N*Vivo). The results of this investigation identified several patterns of disclosure. Prolonged engagement, persistent observation, negative case analysis, and peer debriefing were among the techniques used to ensure the trustworthiness of data. RESULTS: Through analysis of the interview data, previously undefined dimensions of disclosure emerged. First, three frequently used categories of 'accidental, purposeful, and prompted/elicited' disclosure types accounted for 42% of disclosure patterns in the study sample. However, over half the disclosure patterns described by research participants did not fit these previously established definitions. Results of the study facilitated expanding conceptualization of additional disclosure patterns to include behavioral and indirect verbal attempts, disclosures intentionally withheld, and disclosures triggered by recovered memories. CONCLUSIONS: The author concludes that these supplementary definitions integrate complex facets of disclosure derived within the context of human development, memory and environmental influences. This expanded conceptualization provides professionals with a broader framework to understand and respond to child victims and adult survivor's disclosures more effectively.
Adolescent↗
Disclosure of serostatus by HIV infected youth: the experience of the REACH study. Reaching for Excellence in Adolescent Care and Health.
PURPOSE: To describe disclosure of HIV serostatus by infected youth to parents and sexual partners and to examine the association of disclosure with subject characteristics. METHODS: Baseline data on 317 HIV infected adolescents in national 15 site study were examined. Data sources included direct and computer-assisted interview, laboratory studies, and chart reviews. Examination of parental disclosure was restricted to subjects without parental permission requirements. Concordance in parental disclosure/support used McNemar's test. Associations between disclosure to parent(s) and subject characteristics were examined using logistic regression analysis. Repeated measure analysis was used for sexual partner disclosure. RESULTS: Subjects of both genders more often disclosed their HIV infection status to mothers than to their fathers (77% vs. 47%, p < .001). With disclosure, perceived support from either parent was high. In multivariate analyses, factors associated with maternal disclosure were length of time since diagnosis (OR = 1.43; 95% CI: 1.06-1.92), and Hispanic ethnicity (OR = .37; 95% CI: .15-.95). No factors were significantly associated with paternal disclosure in multivariate analysis, although length of time since diagnosis showed a trend (OR = 1.31; 95% CI: 1.00-1.74). Factors associated with disclosure to sexual partners were partner's HIV+ status (OR = 2.09; 95% CI: 1.11-3.93) and "main partner" status (OR = 3.17; 95% CI: 1.84-5.46). CONCLUSIONS: Although subjects were more likely to reveal their status to their mothers, parental support was perceived as high after disclosure to either parent. Since "time since diagnosis" was associated with parental disclosure, support systems are necessary for youth until such a disclosure can occur.
Adolescent↗
Factors associated with self-disclosure of HIV serostatus to significant others.
OBJECTIVES: To examine rates and patterns of self-disclosure of HIV serostatus amongst individuals attending an out-patient HIV clinic in East London. DESIGN: A cross-sectional survey design was used. METHODS: A volunteer sample of 95 out-patient HIV clinic attendees completed a self-report questionnaire examining patterns of disclosure to self-identified significant others, reasons for disclosure and non-disclosure, satisfaction with social support (SSQ6), quality of life (MOS-30) and anxiety and depression (HADS). Self-disclosure was examined in relation to cultural background, gender, satisfaction with social support, and medical and psychological variables. RESULTS: Seventy-nine men and 16 women reported a mean disclosure rate of 68% to self-identified significant others. Five individuals had not disclosed their HIV status to anyone; 91% of individuals had informed their partner. Friends were more frequently informed (79%) than family (53%). Ethnicity (p <.001) and length of time since testing HIV seropositive (p <.05) emerged as significant predictors of disclosure. Global satisfaction with social support was negatively correlated with depression but was not associated with the total rate of HIV disclosure. Frequently reported reasons for non-disclosure included wanting to protect others from distress and fear of discrimination. CONCLUSIONS: Self-disclosure of HIV serostatus rates was highest for partners, followed by friends, and lowest for family members. Patterns of disclosure of HIV serostatus varied in relation to ethnicity. Fifteen years into the HIV epidemic, social stigma continues to contribute towards non-disclosure of diagnosis.
Journal Article↗
Disclosure between patients with gastrointestinal cancer and their spouses.
This study examined patterns of disclosure about cancer-related concerns between patients with GI cancer and their spouses, and associations between patient and spouse disclosure and patient adjustment, spouse adjustment, and aspects of relationship functioning. A sample of 47 patients and 45 of their spouses completed a measure of disclosure which included ratings of their level of disclosure and level of holding back from disclosure of cancer-related concerns. Patients completed a measure of quality of life, spouses completed a measure of caregiver strain, and all participants completed measures of psychological distress and relationship functioning (intimacy, empathy, and partner avoidance and criticism). Data analyses revealed that patients and spouses reported moderately high levels of disclosure and low levels of holding back, with patients reporting higher levels of disclosure than spouses. Among patients and spouses, low levels of disclosure and high levels of holding back were associated with poorer relationship functioning. There were also some indications that high levels of holding back, and to a lesser extent low levels of disclosure, were associated with increased psychological distress for both patients and spouses. However, there were no indications that patient or spouse disclosure was harmful for the other person. Considered overall, the results of this study suggest that levels of disclosure between cancer patients and their spouses may be important in understanding how they adjust as a couple to the demands of the patient's illness.
Adaptation, Psychological↗
Parental disclosure from the perspective of late adolescents.
Although parental relations are considered influential in adolescents' transition to adulthood, we know little about lessons that parents provide through self-disclosure. This study explored the content and extent of parents' disclosure, from the perspective of their children in late adolescence. College students were asked to indicate how much each parent had shared about various matters in their lives, to characterize the quality of each parent's disclosure to them and their disclosure to each parent, and to recall each parent's most meaningful, awkward and first disclosures. Based on previous research regarding adolescents' disclosure to parents, gender differences in disclosure, and reciprocity of disclosure, it was predicted that greater disclosure would be exchanged with mothers than with fathers. Results confirmed initial predictions, indicated some of the functions that parental disclosure may serve, and suggested a model by which intra-family disclosure might evolve.
Adolescent↗
Male self-disclosure of HIV-positive serostatus to sex partners: a review of the literature.
HIV-positive men face multiple challenges when deciding whether to disclose their serostatus to sex partners. The purpose of this literature review (1996-2004) is to identify valid and reliable research results that identify factors influencing serostatus disclosure to sex partners by men who are HIV-positive. Articles included in the review were identified through an electronic search using pertinent terms related to disclosure to sex partners, followed by a search of references for additional articles. A compilation of research results for 17 articles is presented under the headings of background, contextual, and psychosocial factors influencing disclosure. An analysis of the data suggests that differences in disclosure rates vary based on sex partner factors including serostatus, relationship status, and number of sex partners. Rates of disclosure to primary sex partners ranged from 67% to 88%, suggesting that nearly one third of main sex partners were not disclosed to and were at risk of contracting HIV, whereas a pattern of lower disclosure among casual partners was evident. As the number of sex partners increased, the likelihood of disclosure to all sex partners decreased, ranging from one quarter (25%) to slightly over half (58%). In addition, perceived efficaciousness and positive outcome expectations were the most frequent theoretical constructs embedded in the research associated with disclosure, suggesting that these factors play an important role in the process of disclosure to sex partners. Interpersonal factors that positively influenced self-disclosure included spousal support, emotional investment, and communication about safe sex, including asking about a partner's serostatus. Self-disclosure was not consistently associated with safer sex. Recommendations for future research are presented, based on the results included in this review.
Age Factors↗
Disclosure of date/acquaintance rape: who reports and when.
OBJECTIVE: To estimates rates and correlates of disclosure of date/acquaintance rape or attempted rape and verbally coercive sex among a diverse sample of adolescent and young adult females. DESIGN: Secondary data analysis of cross sectional data. SETTING: Urban adolescent healthcare facility. PARTICIPANTS: Adolescents who were identified as having experienced rape/attempted rape (n = 86) or verbally coerced sex (n = 68) in the last 12 months from study examining sexual violence. MAIN OUTCOME MEASURES: Disclosure of forced sex (logistic regression) and the timing of disclosure (survival analysis). INTERVENTIONS: None. RESULTS: Almost 60% of victims who experienced rape/attempted rape disclosed this information to one or more individuals, whereas only 47% of those who experienced verbally coerced sex told another person. Multivariate analyses found that drinking by the partner (AOR = 4.6) and shorter dating history (AOR = 6.3) were associated with disclosure of rape/attempted rape; timing of this disclosure was facilitated by Caucasian ethnicity (RR = 3.5), having a dating partner who drank > or = 1 drinks (RR = 2.5), and the perpetrator being someone other than the victim's boyfriend or partner (RR = 2.5). With regards to verbally coerced sex, reporting no pressure to use alcohol (AOR = 10.7) was the only factor associated with disclosure. No significant predictors of timing to disclosure were detected for this type of victimization. CONCLUSIONS: Perpetrator's alcohol use and a shorter dating history are important variables associated with disclosure of rape/attempted rape as well as timing to disclosure. Factors affecting the disclosure of verbally coerced sex and the latency associated with disclosure are less well defined.
Adolescent↗
Dealing with self-management of chronic illness at work: predictors for self-disclosure.
This paper explores the role of self-management of chronic illness at work, as a predictor for self-disclosure. The study reports findings from a survey sent to all staff at a UK university, of which 610 employees reported managing a chronic illness: arthritis, musculoskeletal pain, diabetes, asthma, migraine, heart disease, irritable bowel syndrome and depression. The study found that discrete self-management factors predicted different levels of disclosure: partial self-disclosure (employees informing line managers about the presence of a chronic illness) and full self-disclosure (employees informing line managers how that chronic illness affected them at work). For partial disclosure, a greater reported experience of chronic illness by employees was positively associated with self-disclosure. For full-disclosure, employees were more likely to report disclosure to line managers if they had already disclosed to colleagues, and if they perceived receiving support from their line managers in relation to their chronic illness as important. Except for academics who were least likely to disclose, occupational groups did not emerge as significant predictors for either partial or full disclosure. Except for diabetes, chronic illness itself was not a significant predictor or barrier to self-disclosure. Our findings suggest that chronically ill employees adopt a disclosure strategy specifically related to different self-management needs of chronic illness at work.
Administrative Personnel↗
The health effects of at-home written emotional disclosure in fibromyalgia: a randomized trial.
BACKGROUND: The presence and severity of the chronic pain syndrome fibromyalgia (FM) is associated with unresolved stress and emotional regulation difficulties. Written emotional disclosure is intended to reduce stress and may improve health of people with FM. PURPOSE: This study tests the effects of at-home, written emotional disclosure about stressful experiences on the health of people with FM and uses multiple follow-ups to track the time course of effects of disclosure. METHODS: Adults with FM (intention-to-treat, n=83; completers, n=72) were randomized to write for 4 days at home about either stressful experiences (disclosure group) or neutral time management (control group). Group differences in immediate mood effects and changes in health from baseline to 1-month and 3-month follow-ups were examined. RESULTS: Written disclosure led to an immediate increase in negative mood, which did not attenuate across the 4 writing days. Repeated-measures analyses from baseline to each follow-up point were conducted on both intention-to-treat and completer samples, which showed similar outcomes. At 1 month, disclosure led to few health benefits, but control writing led to less negative affect and more perceived support than did disclosure. At 3-month follow-up, these negative affect and social support effects disappeared, and written disclosure led to a greater reduction in global impact, poor sleep, health care utilization, and (marginally) physical disability than did control writing. Interpretation of these apparent benefits needs to be made cautiously, however, because the disclosure group had somewhat poorer health than controls at baseline and the control group showed some minor worsening over time. CONCLUSIONS: Written emotional disclosure can be conducted at home, and there is tentative evidence that disclosure benefits the health of people with FM. The benefits, however, may be delayed for several months after writing and may be of limited clinical significance.
Adult↗
Formation of and adherence to a self-disclosure norm in an online chat.
To understand how a norm of self-disclosure forms and is adhered to in a synchronous computer-mediated discussion, participants discussed the stigma of mental illness. The transcripts of the discussion were coded for the number of self-disclosures, the number of statements supportive of self-disclosure, and the number of statements supportive of non-self-disclosure. The results showed that the number of self-disclosing statements increased over time, although not in a linear fashion, as did the number of statements supportive of self-disclosure. However, the number of statements supportive of non-self-disclosures decreased over time. These results suggest that once a norm of self-disclosure forms, it is reinforced by statements supportive of self-disclosures but not of non-self-disclosures. The results are discussed in the context of self-disclosure reciprocity and the social identity model of deindividuation effects (SIDE).
Adaptation, Psychological↗