Disclosure Experiences Research Articles

“How can I tell?” Consequences of HIV status disclosure among couples in eastern African communities in the context of an ongoing HIV “test-and-treat” trial

ABSTRACTPeople living with HIV/AIDS anticipate HIV-related stigma and fear disclosure to intimate partners. Yet, disclosure is critical to reducing HIV transmission and improving care engagement. This qualitative study characterized HIV disclosure experiences and normative beliefs among couples in communities participating in an HIV test-and-treat trial in Kenya and Uganda (Sustainable East Africa Research in Community Health, NCT#01864603). In-depth interviews were conducted with care providers (n = 50), leaders (n = 32) and members (n = 112) of eight communities. Data were analyzed using grounded theoretical approaches and Atlas.ti software. Findings confirmed gender differences in barriers to disclosure: while both men and women feared blame and accusation, women also feared violence and abandonment (“I did not tell my husband because [what if] I tell him and he abandons me at the last moment when I am in labor?”). Positive consequences included partner support for increased care-seeking and adherence (“My husband keeps on reminding me ‘have you taken those drugs?’”) Yet negative consequences included partnership dissolution, blame, and reports of violence (“some men beat their wives just because of that [bringing HIV medications home]”). Among HIV-infected individuals in discordant relationships, men more often reported supportive spouses (“we normally share [HIV-risk-reduction strategies] since I have been infected and she is HIV negative”), than did women (“my husband refused to use condoms and even threatened to marry another wife”). Care providers lent support for HIV-positive women who wanted to engage partners in testing but feared negative consequences: “They engaged the two of us in a session and asked him if we could all test.” Findings demonstrate differing experiences and support needs of women and men living with HIV in eastern Africa, with HIV-positive women in discordant couples particularly vulnerable to negative consequences of disclosure. Efforts to strengthen capacity in health systems for gender-sensitive clinician- or counselor-assisted disclosure should be accelerated within test-and-treat efforts.

A Thematic Analysis of Stigma and Disclosure for Perinatal Depression on an Online Forum.

BackgroundPerinatal mental illness is a global health concern; however, many women do not get the treatment they need to recover. Some women choose not to seek professional help and get no treatment because they feel stigmatized. Online forums for various health conditions, including perinatal mental health, can be beneficial for members. Little is known about the role that online forums for perinatal mental illness play in reducing stigma and subsequent disclosure of symptoms to health care providers and treatment uptake.ObjectiveThis study aimed to examine stigma and disclosure in forums and describe any potential disadvantages of forum use.MethodsAn online forum for mothers was examined and 1546 messages extracted from 102 threads from the antenatal and postnatal depression section. These messages were subjected to deductive systematic thematic analysis to identify common themes regarding stigma and disclosure of symptoms and potential disadvantages of forum use.ResultsTwo major themes were identified: stigma and negative experiences of disclosure. Stigma had 3 subthemes: internal stigma, external stigma, and treatment stigma. Many women were concerned about feeling like a “bad” or “failed” mother and worried that if they disclosed their symptoms to a health care provider they would be stigmatized. Posts in response to this frequently encouraged women to disclose their symptoms to health care providers and accept professional treatment. Forum discourse reconstructed the ideology of motherhood as compatible with perinatal mental illness, especially if the woman sought help and adhered to treatment. Many women overcame stigma and replied that they had taken advice and disclosed to a health care provider and/or taken treatment.ConclusionsForum use may increase women's disclosure to health care providers by challenging their internal and external stigma and this may strengthen professional treatment uptake and adherence. However, a few posts described negative experiences when disclosing to health care providers.

Disclosure of sexual assault experiences among undergraduate women at historically black colleges and universities (HBCUs)

ABSTRACTObjective: To document the sexual assault disclosure experiences of historically black college or university (HBCU) students. Participants: A total of 3,951 female, undergraduate students at 4 HBCUs. Methods: All women at the participating schools were recruited in November 2008 to participate in a Web-based survey including both closed- and open-ended questions. Survey data were weighted for nonresponse bias. Results: The majority of sexual assault survivors disclosed their experience to someone close to them, but disclosure to formal supports, particularly law enforcement agencies, was extremely rare. Nonreporters had concerns about the seriousness of the incident and their privacy. On the basis of qualitative data, strategies identified by students to increase reporting included more education and awareness about sexual assault, more survivor services and alternative mechanisms for reporting, and better strategies for protecting the confidentiality of survivors. Conclusions: Official sexual assault victimization data are of limited utility in conveying the extent of sexual assault among HBCU students, and efforts to increase reporting, such as peer education and enhanced confidentiality procedures, are needed.

Mormon Mixed-Orientation Marriages: Variations in Attitudes and Experiences by Sexual Orientation and Current Relationship Status

ABSTRACTInterest in mixed-orientation marriages has been growing among both scholars and the general public. Members of conservative religions such as Mormonism may be particularly willing to enter a mixed-orientation marriage given the faith's emphasis on heteronormativity. Analyzing survey data from a sample of sexual minorities (n = 160) and heterosexuals (n = 80) who are or have been Mormon and in a mixed-orientation marriage, we explore variations in reasons for marriage, the disclosure experience, and levels of attraction and attitudes toward sex by current relationship status. Previously married sexual-minority individuals report more external pressure and belief their same-sex attraction might change as reasons to marry, as well as less desire for their spouses following disclosure. Currently married sexual-minority partners are less likely to report being counseled to marry, and report feeling more relief, approval, and desire in their relationship following disclosure. Currently married heterosexual spouses are more likely to report spiritual confirmation as a reason to marry, as well as more affection for and greater attraction to spouses, but also report feeling less secure about their attractiveness following disclosure. Previously married heterosexual individuals report the most negative feelings following disclosure, and stronger attitudes about the importance of sharing similar sexual interests, desire, and levels of attraction.

Providing and Receiving Sexual Assault Disclosures: Findings From a Sexually Diverse Sample of Young Adults.

This study utilized a sample of primarily lesbian, gay, bisexual, and queer (LGBQ)-identified young adults from across the United States to pilot test a new instrument, the Reactions Provided to Disclosures Questionnaire (RPDQ), and assess the disclosure experience for both those who provide and those who receive disclosures of sexual assault. Results indicate that the experience of sexual assault disclosure in the LGBQ community is similar to the heterosexual community in that most victims disclose their assaults, most often to a friend, and were most likely to receive the reaction Emotional Support. Victims were also likely to receive the reaction Victim Blaming, especially if they disclosed to formal sources, such as law enforcement, medical, or religious personnel. This study also examined the relationship between the types of assault experienced and disclosure reactions received. Experiencing an anal assault was significantly associated with Victim Blaming reactions. A central aim of this study was to examine how respondents who received (rather than provided) a disclosure reacted, a question not been adequately addressed in prior literature. The RPDQ (a modification of Ullman's Social Reactions Questionnaire), which was piloted here, factored in to five types of reactions: Emotional Support, Affectionate Support, Empathetic Support, Tangible Aid and Information Support, and Egocentric Reactions. Sexual assault survivors were more likely to report that they provided Emotional Support and Affectionate Support after receiving a disclosure than were nonsurvivors.

“I Was Like Damaged, Used Goods”: Thematic Analysis of Disclosures of Childhood Sexual Abuse to Romantic Partners

ABSTRACTA thematic analysis of the reported experiences of childhood sexual abuse (CSA) survivors in disclosing their CSA history to romantic partners was completed with the goal of learning about the experience of their disclosure and to consider role partners may play in the disclosure experiences of CSA survivors. Transcripts of 19 survivors were analyzed using a standard thematic analysis methodology. Two global themes emerged, reasons for disclosing and impact of response, and these were highly interrelated by shame. A preliminary theory of disclosing to romantic partners was posited.

"Come on Baby. You Know I Love You": African American Women's Experiences of Communication with Male Partners and Disclosure in the Context of Unwanted Sex.

We examined African American women's experiences of communication with their male intimate partners a couple of hours before and after an incident of unwanted sex. We also examined women's experiences of disclosure following an incident of unwanted sex. Semi-structured qualitative interviews were conducted with a community-based sample of sexually active African American women (n=19) reporting at least one incident of sexual coercion (i.e., being pressured into unwanted sex without consent) by an intimate male partner since the age of 18. Our analysis was guided by "the sexual division of power" from Connell's (1987) theory of gender and power. Data were analyzed inductively by examining the interviews for common themes in the following domains: communication before the unwanted sex, communication after the unwanted sex, and disclosure to others. Men pressured partners for unwanted sex through verbal and non-verbal tactics, ranging from pestering and blunt requests for sex to verbal bullying and violence. Many women responded by clearly saying no. However, many women also described eventually ceasing to resist their partners and engaging in unwanted sex. After the unwanted sex, men actively and passively avoided discussing the incident. Although many women discussed the unwanted sex with family and friends, less women disclosed to trained professionals. In some cases, women did not discuss the incident with anyone at all. These findings indicate that, when addressing sexual violence against women, there is a need to target men as well as the norms of masculinity that underpin physical and sexual violence against women.

The Disclosure Experiences of Male Child Sexual Abuse Survivors

ABSTRACTThis article explores the diversity in the disclosure process of male survivors of child sexual abuse. Disclosure is a complex process for victims of both genders, however masculine norms and stereotypes have contributed to an environment that often negates the experiences of men. The disclosure process of 17 adult male survivors of child sexual abuse was explored using transcripts of telephone interviews. A combination of two qualitative methodologies, the phenomenological method and interpretive description approach, was used to analyze this secondary data. The results indicated that the majority of the men in the study waited until adulthood to disclose their abuse, with negative stereotypes contributing to their delayed disclosures. In terms of specific experiences with disclosure, the participants found they received both positive and negative responses. These results were consistent with the literature.

Caregivers' Attitudes towards HIV Testing and Disclosure of HIV Status to At-Risk Children in Rural Uganda.

Caregivers of HIV-positive children were interviewed in the Mbarara and Isingiro districts of Uganda to identify current trends in practices related to HIV testing and the disclosure of HIV status to the child. A total of 28 caregivers of at least one HIV-positive child participated in semi-structured interviews exploring when and why they tested the child for HIV, when the child was informed of their positive status, and what the caregiver did to prepare themselves and the child for status disclosure. For a majority (96%) of respondents, the decision to test the child for HIV was due to existing illness in either the child or a relative. Other common themes identified included the existence of stigma in the caregivers’ communities and doubt that the children truly understood what was being explained to them when their status was disclosed. Most (65%) children were informed of their HIV status between the ages of 5 and 9, with the mean age of disclosure occurring at the age of 7. General provision of HIV information typically began at the same age as disclosure, and as many as two thirds (64%) of the caregivers sought advice from an HIV counsellor prior to disclosure. How a caregiver chose to prepare themselves and the child did not affect the caregiver’s perception of whether the disclosure experience was beneficial or not. These findings suggest that the HIV disclosure experience in Mbarara and Isingiro districts differs from current guidelines, especially with respect to age of disclosure, how caregivers prepare themselves and the child, and approaching disclosure as an ongoing process. The doubts expressed by caregivers regarding the child’s level of HIV understanding following the disclosure experience suggest the children may be insufficiently prepared at the time of the initial disclosure event. The findings also suggest that examining the content of pre-disclosure counselling and HIV education, and how health care professionals are trained to facilitate the disclosure process as important avenues for further research.

Outness, Stigma, and Primary Health Care Utilization among Rural LGBT Populations.

BackgroundPrior studies have noted significant health disadvantages experienced by LGBT (lesbian, gay, bisexual, and transgender) populations in the US. While several studies have identified that fears or experiences of stigma and disclosure of sexual orientation and/or gender identity to health care providers are significant barriers to health care utilization for LGBT people, these studies have concentrated almost exclusively on urban samples. Little is known about the impact of stigma specifically for rural LGBT populations, who may have less access to quality, LGBT-sensitive care than LGBT people in urban centers.MethodologyLBGT individuals residing in rural areas of the United States were recruited online to participate in a survey examining the relationship between stigma, disclosure and “outness,” and utilization of primary care services. Data were collected and analyzed regarding LGBT individuals’ demographics, health care access, health risk factors, health status, outness to social contacts and primary care provider, and anticipated, internalized, and enacted stigmas.ResultsHigher scores on stigma scales were associated with lower utilization of health services for the transgender & non-binary group, while higher levels of disclosure of sexual orientation were associated with greater utilization of health services for cisgender men.ConclusionsThe results demonstrate the role of stigma in shaping access to primary health care among rural LGBT people and point to the need for interventions focused towards decreasing stigma in health care settings or increasing patients’ disclosure of orientation or gender identity to providers. Such interventions have the potential to increase utilization of primary and preventive health care services by LGBT people in rural areas.

Sexual Assault Disclosure Recipients' Experiences: Emotional Distress and Changes in the Relationship With the Victim.

Sexual assault victims are more likely to disclose their experience to friends and family than formal support sources (e.g., police, counselors). As such, disclosure receipt is a relatively common occurrence, but little is known about the recipients' disclosure experience. This study examined predictors of recipient emotional distress and positive and negative changes in the victim-recipient relationship postdisclosure among 69 female undergraduates at 3 universities. Predictors of distress included greater self-rated closeness to the victim and greater confusion about how to help. Positive changes were predicted by greater closeness and less responsibility attributed to the victim, and negative changes were predicted by less closeness, greater assigned responsibility, and greater perceived ineffectiveness of one's help. Implications for improving the disclosure experience via psychoeducational interventions are presented.

Gender Differences in Workplace Disclosure and Supports for Domestic Violence: Results of a Pan-Canadian Survey

Although domestic violence is increasingly identified as a workplace issue, little is known about workplace supports and the role of gender in workplace disclosure experiences. Using a subset of 2,831 people who experienced domestic violence, we examined (a) who discloses at work and to whom, and reasons for not disclosing; (b) helpfulness of disclosure recipients, including types of supports received; and (c) overall outcomes of disclosing, including negative consequences. Data were analyzed using descriptive statistics and content analysis. More than 40% of participants disclosed domestic violence at work, usually to coworkers or supervisors. They received various supports which were generally seen as helpful. Although not common, negative consequences of disclosure were reported. Men were less likely to disclose, but few other gender differences emerged. Implications for improving workplace supports are discussed.

Perceptions and Experiences about Self-Disclosure of HIV Status among Adolescents with Perinatal Acquired HIV in Poor-Resourced Communities in South Africa.

Background. There is limited research on the disclosure experiences of adolescents with perinatal acquired HIV (PAH). The study explores how adolescents with PAH experience living with HIV and examined their perceptions and experiences regarding disclosure and onward self-disclosure to friends and sexual partners. Methods. Thematic analysis was used to analyze in-depth interviews conducted with 37 adolescents. Findings. Adolescents received disclosure about their status at mean age of 12 years. They perceived disclosure as necessary and appreciated the truthful communication they received. Adolescents have learned to accept and live with HIV, and they desired to be healthy and normal like other people. After receiving disclosure, they found their treatment meaningful, and they adhered to medication. However, they also expressed a strong message that their HIV status was truly their secret and that self-disclosure to others will take the feeling of being normal away from them because they will be treated differently. Conclusion. Adolescents maintained secrecy in order to be accepted by their peers but also to protect themselves from stigma and isolation. Given that adolescents want to be informed of their HIV status but desire controlling self-disclosure of their HIV status, these should form the basis for development of disclosure interventions.

Emotional and Disclosure Experiences of South African HivPositive Women using Prevention of Mother-To-Child Transmission of Hiv Services

Emotional and Disclosure Experiences of South African HivPositive Women using Prevention of Mother-To-Child Transmission of Hiv Services

"I don't want them to look at me and think of my illness, I just want them to look at me and see me": Child perspectives on the challenges associated with disclosing an epilepsy diagnosis to others.

Disclosure of a concealable stigmatized identity, such as epilepsy, to those external to the nuclear family can be complex. Among children living with epilepsy (CWE), diagnosis disclosure has been identified as a quality-of-life issue and a source of psychosocial distress. Despite this, limited empirical evidence exists regarding the disclosure experiences of CWE. This study aimed to identify the contextual factors that act as challenges for CWE when disclosing their epilepsy diagnosis to others external to the nuclear family. This qualitative exploratory study consisted of individual interviews with 29 CWE (aged 6-16 years; mean age=11.17 years; S.D.=2.85). Participants were recruited from a tertiary referral unit in the neurology department of a pediatric hospital and through a national epilepsy association. Interviews were audiotaped and transcribed verbatim. Data were thematically analyzed. The five main challenges to epilepsy diagnosis disclosure for children were: 1) CWE's desire for normalcy, 2) out of sight but in the mind, 3) contending with negative responses to disclosure, 4) the complexity of epilepsy, and 5) self and others' perceptions of epilepsy. These findings provide valuable insight into the factors that present difficulties and impede epilepsy diagnosis disclosure among CWE. Such knowledge is important in informing engagements between health-care professionals (HCPs) and CWE. In particular, HCPs should remain cognisant of the challenges CWE face as they: (i) strive for normalcy and (ii) grapple with comprehending their complex neurological condition. Tackling such disclosure challenges could serve to enhance life quality, improve CWE's openness with others about epilepsy, and consequently work toward reducing epilepsy-related misconceptions and stigma.

Disclosure and Psychological Well-Being of Sexually Abused Adolescents in Hong Kong

The role of disclosure on psychological well-being of adolescents with child sexual abuse experience was investigated in a subsample of 74 disclosers among 800 adolescents recruited in the community in Hong Kong. The results supported that CSA experiences have differential impact on adolescents’ psychological well-being. Family characteristics of the disclosers accounted for only a small amount of the variance in an array of psychological well-being measures. CSA characteristics were robust predictors of disclosers’ sexual eroticism and externalizing behavioral symptoms. Disclosers’ cognitive appraisal of CSA experience and quality of parental attachment were strong predictors of their self-esteem and internalizing behavioral problems. After controlling for the aforementioned factors, negative disclosure experience still significantly predicted lower self-esteem, higher sexual anxiety, more internalizing behavior, and more severe post-traumatic stress disorder responses. Research to understand the factors that generate negative disclosure experiences is needed for developing effective intervention strategies to mitigate the negative consequences of disclosure.

Self-management for people with poorly controlled epilepsy: Participants' views of the UK Self-Management in epILEpsy (SMILE) program.

Epilepsy is a long-term condition that requires self-management, but currently, there is no well-evaluated epilepsy self-education or self-management intervention in the United Kingdom (UK). The aim of this study was to examine the views and experiences of the first participants of the Self-Management in epILEpsy UK (SMILE UK) program to assist the development of a full trial. In-depth semistructured interviews and group discussions were conducted with 10 people with poorly controlled epilepsy to explore their views and experiences of the self-management program. Interviews were audio-recorded, transcribed, and analyzed thematically. All participants viewed the program positively. Three themes emerged: i) peer support was experienced through knowledge sharing, disclosure of experiences, and exchange of contact details; ii) participants felt better equipped to enter discussions with doctors and other health-care professionals about their condition; and iii) participants reported an improvement in their personal life through increased confidence to live with epilepsy and acceptance of their diagnosis. A brief group self-management intervention increased knowledge and confidence in managing epilepsy.

“Now What?” to “So What!”: Journey with Perinatally HIV Infected Adolescents Transitioning to Adulthood

Adolescents living with HIV (ALHIV) struggle with questions pertaining to their future; contemplating “Now what?” The authors, a nongovernmental organization from India, designed residential workshops for ALHIV to provide them the space to share concerns and draw support from peers. This increased their self-belief and agency, induced voluntarism, and resulted in formation of a support group, “So What!” The members volunteered in planning a similar workshop for their peers and also shared their experiences of disclosure in the form of a booklet. Active involvement of ALHIV could be a key strategy to address the needs of ALHIV.

When "In Your Face" Is Not Out of Place: The Effect of Timing of Disclosure of a Same-Sex Dating Partner under Conditions of Contact

In a series of experiments we examined heterosexuals’ reactions to the timing of disclosure of a gender-matched confederate’s same-sex dating partner. Disclosure occurred in a naturalistic context–that is, it occurred when meeting, or expecting to soon meet, a same-sex attracted individual, who voluntarily shared this information with the participant as a natural part of a broader topic of discussion. The confederate, when disclosing early rather than later, was approached more closely (Prestudy) and liked more (Studies 1–2). Those experiencing early disclosure, compared with later, were less drawn to topics of lower intimacy (Study 1), were happier and more excited about meeting the confederate, and more likely to choose to be alone with the confederate for a one-on-one discussion (Study 2). Further, women experiencing early disclosure were more willing to introduce the same-gender confederate to their friends (Study 2). The benefits of knowing sooner, rather than later, continued to apply even when participants were given further time to process the disclosure. To explore the underlying reasons for the more favorable experiences of upfront disclosure, we examined participants’ memory of the information shared by the confederate (Study 3). Results revealed that those who experienced delayed disclosure were more likely to incorrectly recall and negatively embellish information related to the confederate’s sexual orientation, suggesting that early disclosure resulted in a reduced tendency to focus on the confederate’s sexuality as a defining feature. These positive findings for early timing are discussed in light of previous studies that have found benefits for delayed disclosure and those that have failed to investigate the effects of timing of ‘coming out’ under conditions of contact.

On the Employment of Persons With Mental Health Issues.

More andmore, I am hearing that people with mental health issues aspire to work in the professional sector, possibly as a manager, an executive, or a technician. Many are not interested in more mundane work, such as data entry. Yet, for various reasons, finding work as a professional is difficult for people with mental health problems, especially if they have recently been discharged from a psychiatric hospitalization.