Browsing by Subject "Disclosure"
Now showing 1 - 9 of 9
Results Per Page
Sort Options
Item 1288. US Healthcare Provider Perspectives on the initiation of cabotegravir and rilpivirine long-acting (CAB+RPV LA) in an observational real-world study (BEYOND)(Oxford University Press, 2022) Hsu, Ricky K.; Phoenix, John; Sinclair, Gary I.; Gupta, Samir K.; Puga, Ana; Nguyen, Kaitlin; Schubert, Catherine K.; Merrill, Deanna; Richardson, David; Nelson, Kate; Reynolds, Maria; Zografos, Laurie; Jean-Louis, Ashley; Garris, Cindy; Medicine, School of MedicineBackground: CAB+RPV LA is a complete regimen for treatment of virologically suppressed people with HIV (PWH). As an injectable therapeutic administered by a healthcare provider (HCP), CAB+RPV LA may alleviate challenges with adherence to daily oral therapy and reduce fear of HIV status disclosure with oral treatment. Real world perspectives from HCPs and PWH are needed to enable successful delivery of this treatment in US healthcare settings. Methods: BEYOND is a 2 year prospective, observational, real-world study of utilization, outcomes, and experience of PWH initiating CAB+RPV LA across 30 US sites. HCPs at participating sites (treaters, injectors, drug acquisition/reimbursement staff) completed surveys at site activation (Sep 2021-Feb 2022; with follow-up surveys planned at 6, 12, 24 months) evaluating experiences to date with implementation of CAB+RPV LA at their sites. Results: HCPs from 24 sites responded to the initial survey (Table 1). 75% of HCPs estimated that ≥25% of their PWH are eligible for CAB+RPV LA, and 71% of sites are proactively discussing the regimen with ≥25% of PWH. The majority (79%) of treaters reported they were extremely/very positive about administering CAB+RPV LA. Over 90% of injectors reported a positive overall opinion about administering CAB+RPV LA, and 86% reported the injections were easy to administer. Most (87%) HCPs reported injection visits taking ≤45 minutes, including waiting time. Over 95% of sites have patient reminder systems; 86% will manually identify missed injections and all reported manual follow up by site staff. All sites utilizing the injection education video on the external HCP website (n=15/15) found it helpful and 94% (n=16/17) utilizing reimbursement specialists found them to be helpful. In their experience to date, most clinics reported only needing to increase coordination with the pharmacy team and add injection training to implement CAB+RPV LA. The most frequently reported benefits of implementing CAB+RPV LA by HCPs included assurance of patient adherence and patient engagement in their HIV treatment (Table 2). Conclusion: Early real-world data from US HCPs in this study indicates interest in and anticipated uptake of CAB+RPV LA at their sites, positive overall opinion, and multiple benefits of administering the CAB+RPV LA regimen to PWH.Item A Case of Error Disclosure: A Communication Privacy Management Analysis(Sage, 2013-12-01) Petronio, Sandra; Helft, Paul R.; Child, Jeffrey T.; Communication Studies, School of Liberal ArtsTo better understand the process of disclosing medical errors to patients, this research offers a case analysis using Petronios's theoretical frame of Communication Privacy Management (CPM). Given the resistance clinicians often feel about error disclosure, insights into the way choices are made by the clinicians in telling patients about the mistake has the potential to address reasons for resistance. Applying the evidenced-based CPM theory, developed over the last 35 years and dedicated to studying disclosure phenomenon, to disclosing medical mistakes potentially has the ability to reshape thinking about the error disclosure process. Using a composite case representing a surgical mistake, analysis based on CPM theory is offered to gain insights into conversational routines and disclosure management choices of revealing a medical error. The results of this analysis show that an underlying assumption of health information ownership by the patient and family can be at odds with the way the clinician tends to control disclosure about the error. In addition, the case analysis illustrates that there are embedded patterns of disclosure that emerge out of conversations the clinician has with the patient and the patient's family members. These patterns unfold privacy management decisions on the part of the clinician that impact how the patient is told about the error and the way that patients interpret the meaning of the disclosure. These findings suggest the need for a better understanding of how patients manage their private health information in relationship to their expectations for the way they see the clinician caring for or controlling their health information about errors. Significance for public health: Much of the mission central to public health sits squarely on the ability to communicate effectively. This case analysis offers an in-depth assessment of how error disclosure is complicated by misunderstandings, assuming ownership and control over information, unwittingly following conversational scripts that convey misleading messages, and the difficulty in regulating privacy boundaries in the stressful circumstances that occur with error disclosures. As a consequence, the potential contribution to public health is the ability to more clearly see the significance of the disclosure process that has implications for many public health issues.Item 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.Item 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 EducationUnderstanding 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.]Item "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 MedicineIntroduction: 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.Item 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.Item Optimizing Disclosure of HIV Status to a Diverse Population of HIV-Positive Youth at an Urban Pediatric HIV Clinic(Elsevier, 2021) Dantuluri, Keerti L.; Carlucci, James G.; Howard, Leigh M.; Johnson, David P.; Spencer, Hillary; Desai, Neerav A.; Garguilo, Kathryn A.; Wilson, Gregory J.; Pediatrics, School of MedicinePurpose: The purpose of the study was to increase the proportion of youth living with HIV (YLWH) aged ≥11 years who undergo developmentally appropriate disclosure about their HIV status. Methods: A quality improvement project was initiated at an urban pediatric HIV clinic between July 2018 and March 2020. The primary outcome measure was the proportion of YLWH aged ≥11 years who were disclosed to about their HIV status. The proportion of undisclosed YLWH who had documented nondisclosure status was also assessed as a process measure. Plan-Do-Study-Act (PDSA) cycles for change included monthly clinic staff check-ins to discuss new disclosures, quarterly team meetings to discuss strategies to improve disclosure, and modifying a clinic note template to prompt providers to document disclosure status. Annotated run charts were used to analyze the data. Results: Before the first PDSA cycle, 26/46 (57%) of the target population of YLWH aged ≥11 years had their HIV status disclosed to them, and none of the undisclosed youth had disclosure status documented in their medical record. After 20 months and six PDSA cycles, the proportion of YLWH aged ≥11 years disclosed to about their HIV status increased to 80% and the proportion of undisclosed YLWH with documentation of their disclosure status increased to 100%. Conclusions: Several interventions integrated throughout the pediatric HIV care process were associated with an increase in the proportion of YLWH with developmentally appropriate HIV disclosure and documentation of disclosure status, an important psychosocial aspect of care in these individuals.Item 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 MedicineBackground: 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.Item 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 MedicineDisclosure 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.