Browsing by Subject "disclosure"

Now showing 1 - 6 of 6
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    Characteristics of HIV-infected adolescents enrolled in a disclosure intervention trial in western Kenya
    (Taylor & Francis, 2015) Vreeman, Rachel C.; Scanlon, Michael L.; Marete, Irene; Mwangi, Ann; Inui, Thomas S.; McAteer, Carole I.; Nyandiko, Winstone M.; Department of Pediatrics, IU School of Medicine
    Knowledge of one's own HIV status is essential for long-term disease management, but there are few data on how disclosure of HIV status to infected children and adolescents in sub-Saharan Africa is associated with clinical and psychosocial health outcomes. We conducted a detailed baseline assessment of the disclosure status, medication adherence, HIV stigma, depression, emotional and behavioral difficulties, and quality of life among a cohort of Kenyan children enrolled in an intervention study to promote disclosure of HIV status. Among 285 caregiver-child dyads enrolled in the study, children's mean age was 12.3 years. Caregivers were more likely to report that the child knew his/her diagnosis (41%) compared to self-reported disclosure by children (31%). Caregivers of disclosed children reported significantly more positive views about disclosure compared to caregivers of non-disclosed children, who expressed fears of disclosure related to the child being too young to understand (75%), potential psychological trauma for the child (64%), and stigma and discrimination if the child told others (56%). Overall, the vast majority of children scored within normal ranges on screenings for behavioral and emotional difficulties, depression, and quality of life, and did not differ by whether or not the child knew his/her HIV status. A number of factors were associated with a child's knowledge of his/her HIV diagnosis in multivariate regression, including older age (OR 1.8, 95% CI 1.5-2.1), better WHO disease stage (OR 2.5, 95% CI 1.4-4.4), and fewer reported caregiver-level adherence barriers (OR 1.9, 95% CI 1.1-3.4). While a minority of children in this cohort knew their HIV status and caregivers reported significant barriers to disclosure including fears about negative emotional impacts, we found that disclosure was not associated with worse psychosocial outcomes.
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    Disclosure of HIV status to children in resource-limited settings: a systematic review
    (2013-05) Vreeman, Rachel C; Gramelspacher, Anna Maria; Gisore, Peter O; Scanlon, Michael L; Nyandiko, Winstone M
    Introduction Informing children of their own HIV status is an important aspect of long-term disease management, yet there is little evidence of how and when this type of disclosure takes place in resource-limited settings and its impact. Methods MEDLINE, EMBASE and Cochrane Databases were searched for the terms hiv AND disclos* AND (child* OR adolesc*). We reviewed 934 article citations and the references of relevant articles to find articles describing disclosure to children and adolescents in resource-limited settings. Data were extracted regarding prevalence of disclosure, factors influencing disclosure, process of disclosure and impact of disclosure on children and caregivers. Results Thirty-two articles met the inclusion criteria, with 16 reporting prevalence of disclosure. Of these 16 studies, proportions of disclosed children ranged from 0 to 69.2%. Important factors influencing disclosure included the child's age and perceived ability to understand the meaning of HIV infection and factors related to caregivers, such as education level, openness about their own HIV status and beliefs about children's capacities. Common barriers to disclosure were fear that the child would disclose HIV status to others, fear of stigma and concerns for children's emotional or physical health. Disclosure was mostly led by caregivers and conceptualized as a one-time event, while others described it as a gradual process. Few studies measured the impact of disclosure on children. Findings suggested adherence to antiretroviral therapy (ART) improved post-disclosure but the emotional and psychological effects of disclosure were variable. Conclusions Most studies show that a minority of HIV-infected children in resource-limited settings know his/her HIV status. While caregivers identify many factors that influence disclosure, studies suggest both positive and negative effects for children. More research is needed to implement age- and culture-appropriate disclosure in resource-limited settings.
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    Exploring societal-level privacy rules for talking about miscarriage
    (Sage, 2019) Bute, Jennifer J.; Brann, Maria; Hernandez, Rachael; Communication Studies, School of Liberal Arts
    Communication privacy management (CPM) theory posits that culturally specific understandings of privacy guide how people manage private information in everyday conversations. We use the context of miscarriage to demonstrate how societal-level expectations about (in)appropriate topics of talk converge with micro-level decisions about privacy rules and privacy boundary management. More specifically, we explore how people’s perceptions of broad social rules about the topic of miscarriage influence their disclosure decisions. Based on interviews with 20 couples who have experienced pregnancy loss, we examined how couples described miscarriage as a topic that is bound by societal-level expectations about whether and how this subject should be discussed in interpersonal conversations. Participants reflected on their perceptions of societal-level privacy rules for protecting information about their miscarriage experiences and described how these rules affected their own privacy management decisions. We discuss these findings in terms of CPM’s theoretical tools for linking macro-level discourses to everyday talk.
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    "I'm Spoon-feeding him my Trauma": An Analysis of Sexual Assault Survivors' Privacy Management in Romantic Relationships
    (2023-05) Unruh, Margret; Bute, Jennifer J.; Brann, Maria; Longtin, Krista
    Survivors of sexual assault make difficult privacy management decisions regarding their experiences, particularly in romantic relationships where physical intimacy makes these sensitive disclosures even more complex. As fever is an indicator of illness and a part of healing from the illness, disclosure can be an indicator of underlying disturbance and a part of the restorative process. Additionally, communication privacy management (CPM) theory considers ownership, control, and turbulence to illustrate how private information is regulated. Through qualitative, semi-structured interviews (n=19) and a phronetic iterative approach to data analysis, I examined the ways survivors of sexual assault managed their private information regarding their experiences in a romantic relationship and if disclosure relieved any psychological distress of the survivor. Results of this study offer insight into the ways participants controlled their personal information through the privacy management process; the establishment of boundaries surrounding ongoing disclosures; and the emotional effect of various privacy management strategies on participants, their partners, and the relationship. Reaching across theoretical concepts, this research offers a comprehensive understanding of the factors salient when managing private information regarding sexual assault. This research also provides practical applications for considering the influence of various privacy management approaches and their influence on the physical and psychological health of the survivor and the health of the relationship.
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    Privacy Management as Unfinished Business: Shifting Boundaries in the Context of Infertility
    (2010-01) Bute, Jennifer J.; Vik, Tennley A.
    Privacy dilemmas are prevalent for women who experience a fertility problem. In this study, we use communication privacy management (CPM) theory to explore how privacy boundaries shift over time as women cope with infertility. Based on interviews with 23 women, we found that women described distinctive patterns of shifting privacy boundaries, including situations in which the experience of infertility served as a change agent, patterns in which women became more or less open over time, and patterns that indicated a continuous oscillation of boundaries. These ever-changing patterns of talk indicate that managing private information about infertility is unfinished business.
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    Questioning the Quantitative Imperative: Decision Aids, Prevention, and the Ethics of Disclosure
    (2011-03) Schwartz, Peter H.
    Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it.