Browsing by Subject "Disclosure"

Now showing 1 - 6 of 6
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    At a Loss for Words: Using Performance to Explain How Friends Communicate About Infertility
    (2023-06) Binion, Kelsey Elizabeth; Brann, Maria; Beckman, Emily; Bute, Jennifer J.; Longtin, Krista J.
    In the United States, approximately one in five women are unable to get pregnant after one year of trying. Due to the pervasiveness of pronatalism in Western society, having a child is widely assumed to be a natural and expected part of womanhood. Society’s master narratives reinforce these ideals and stigmatize the experiences of women who have infertility. This multi-phase research study examined how women discuss their infertility journey with their friends. The study’s aims were to understand friendships within the context of infertility, how the relationship affects a woman’s identity, and the communicative behaviors used in conversations. Fifteen interviews were conducted with women who experienced or are experiencing infertility and had discussed their past or current challenges with a friend. Results of a phronetic iterative analysis suggested that women who have personal experience with infertility (a) disclose to close/best friends, (b) communicate their identity as “broken,” (c) desire emotional support, and (d) strategically navigate conversations as they encounter positive and negative messages. These results were transformed into a performance, which included six monologues and a talkback. The purpose of the arts-based methodology was to disseminate results and assess the performance’s impact. Seventy-three individuals attended one of the two performances in April 2023, and 50 attendees completed the post-performance evaluation. The quantitative results suggest that attendees felt informed about the complexities of infertility, gained a new perspective, received advice about how to have future conversations, and did not feel offended by the content. Through a thematic analysis, four themes emerged from the two talkback sessions and evaluation comments: being informed about infertility as a health condition, appreciating the theatrical format to learn, connecting to the performance to understand the illness experience, and feeling comfortable navigating conversations about infertility. Despite the variance in infertility experiences, friends are essential social support figures as women navigate infertility, and there are best practices when having a conversation, as demonstrated in the performance. This study’s implications include providing communication strategies to support women with infertility and recognizing that an arts-based methodology can highlight counterstories, inform about a stigmatized health issue, and engage the community.
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    Examining the Legal Consciousness of Residence Life Staff
    (Association of College and University Housing Officers - International, 2018) Nguyễn, David Hòa Khoa; Collier, Joan; Watts, Angela; Cartwright, Camille; King-Kostelac, Amelia; School of Education
    Understanding the law has become an integral part of the work of higher education professionals, especially residence life staff. For decades, courts have contributed an increasingly important role in shaping the litigious nature of society at large and within higher education (Greenleaf, 1982). Barr and Associates (1988) noted the increasingly major influence of the law on campus life. Even in the mid-1990s, Gehring and Penney (1995) highlighted the critical need to understand legal issues for those professionals entering the field of higher education and student affairs. Since Olivas (2013) found that higher education law is a rapidly changing area in the field, knowledge of the law is critical to anyone in a professional position in higher education. [Discussion questions developed by Amelia King-Kostelac.]
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    "I have never talked to anyone to free my mind" - challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya
    (BMC, 2022-06-04) Toromo, Judith J.; Apondi, Edith; Nyandiko, Winstone M.; Omollo, Mark; Bakari, Salim; Aluoch, Josephine; Kantor, Rami; Fortenberry, J. Dennis; Wools‑Kaloustian, Kara; Elul, Batya; Vreeman, Rachel C.; Enane, Leslie A.; Pediatrics, School of Medicine
    Introduction: Adolescents living with HIV (ALHIV, ages 10-19) experience complex barriers to care engagement. Challenges surrounding HIV status disclosure or non-disclosure to adolescents may contribute to adolescent disengagement from HIV care or non-adherence to ART. We performed a qualitative study to investigate the contribution of disclosure challenges to adolescent disengagement from HIV care. Methods: This was a qualitative study performed with disengaged ALHIV and their caregivers, and with healthcare workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Inclusion criteria for ALHIV were ≥1 visit within the 18 months prior to data collection at one of two clinical sites and nonattendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Analysis was conducted by multiple independent coders, and narratives of disclosure and care disengagement were closely interrogated. Overarching themes were elucidated and summarized. Results: Interviews were conducted with 42 disengaged ALHIV, 32 caregivers, and 28 HCW. ALHIV were average age 17.0 (range 12.9-20.9), and 95% indicated awareness of their HIV diagnosis. Issues surrounding disclosure to ALHIV presented important barriers to HIV care engagement. Themes centered on delays in HIV status disclosure; hesitancy and reluctance among caregivers to disclose; struggles for adolescents to cope with feelings of having been deceived prior to full disclosure; pervasive HIV stigma internalized in school and community settings prior to disclosure; and inadequate and unstructured support after disclosure, including for adolescent mental health burdens and for adolescent-caregiver relationships and communication. Both HCW and caregivers described feeling inadequately prepared to optimally handle disclosure and to manage challenges that may arise after disclosure. Conclusions: Complex challenges surrounding HIV status disclosure to adolescents contribute to care disengagement. There is need to enhance training and resources for HCW, and to empower caregivers to support children and adolescents before, during, and after HIV status disclosure. This should include counseling caregivers on how to provide children with developmentally-appropriate and accurate information about their health from an early age, and to support adolescent-caregiver communication and relationships. Optimally integrating peer support can further promote ALHIV wellbeing and retention in care.
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    The Management of Privacy Boundaries for People with Visible Disabilities
    (2014) McAloon, Erin P.; Bute, Jennifer; Parrish-Sprowl, John; Goering, Elizabeth M.
    People who have disabilities that are visible often manage the boundaries around private information regarding their disability (Braithwaite, 1991) because the choice becomes how much should be revealed. The purpose of this study is to use Communication Privacy Management (CPM) theory to explore the way people who have a visible disability manage privacy boundaries in communicative interactions and also the way the boundaries around private information are managed over time. The study was conducted through in-depth interviews with seven individuals who have a visible disability about their experiences in managing private information. The individuals described experiences both among other people with a visible disability and with people do not have a disability. Results from a thematic analysis revealed the presence of five main themes and several sub-themes.
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    The Prevalence of Disclosure of HIV Status to HIV-Infected Children in Western Kenya
    (Oxford University Press, 2013) Turissini, Matthew L.; Nyandiko, Winstone M.; Ayaya, Samuel O.; Marete, Irene; Mwangi, Ann; Chemboi, Victor; Warui, Lucy; Vreeman, Rachel C.; Pediatrics, School of Medicine
    Background: As antiretroviral therapy (ART) allows the world's 2.3 million human immunodeficiency virus (HIV)-infected children to grow and thrive, these children need to be informed of their HIV status. Neither the prevalence of disclosure to children nor its impact has been evaluated in most resource-limited settings. Methods: We conducted a prospective assessment of a random sample of HIV-infected children ages 6-14 years enrolled in HIV care at a large referral clinic in Eldoret, Kenya. Clinicians administered questionnaires to children and caregivers independently at routine clinic visits to assess disclosure status, ART adherence, stigma, and depression. Children's demographic and clinical characteristics were extracted from chart review. We calculated descriptive statistics and performed logistic regression to assess the association between disclosure and other characteristics. Results: Two hundred seventy children-caregiver dyads completed questionnaires. The mean child age was 9.3 years (standard deviation 2.6); 49% were male, and 42% were orphans. 11.1% of children had been informed of their HIV status (N = 30). Of those under 10 years, 3.3% knew their status, whereas 9.2% of 10- to 12-year-olds and 39.5% of 13- to 14-year-olds knew they had HIV. Only age was significantly associated with disclosure status in both bivariate analyses (P < .0001) and multiple logistic regression (odds ratio 1.67, 95% confidence interval 1.36-2.05) when considering social demographics, disease stage variables, adherence, stigma measures, and depression. Conclusions: Rates of informing children in western Kenya of their HIV status are low, even among older children. Guiding families through developmentally appropriate disclosure processes should be a key facet of long-term pediatric HIV management.
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    Willingness to disclose STI status to sex partners among college-age men in the United States
    (Wolters Kluwer, 2016-03) Pfeiffer, Elizabeth J.; McGregor, Kyle A.; Van Der Pol, Barbara; Hansen, Cathlene Hardy; Ott, Mary A.; Department of Pediatrics, IU School of Medicine
    Disclosure of sexually transmitted infections (STIs) to sexual partners is critical to the prevention, treatment and control of STIs. We examine intra- and inter-personal influences on willingness to disclose STI status among college-age males. Participants (n = 1064) were aged 17-24 years and recruited from a variety of university and community venues. Using independent samples t-test, Pearson chi-squares test, and binary logistic regression, we examined the relationship between willingness to disclose a STI and intra- and inter-personal factors, including age, masculinity values, interpersonal violence, partner cell phone monitoring, alcohol and/or drug use, condom use, number and characteristics of sex partners, and previous STI. Results reveal that among college-age males, type of sex partner and masculinity values are significant variables in predicting whether or not an individual is willing to disclose. These data can inform STI control programs to more effectively address the complex issues associated with STI disclosure to sex partners.