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A model for HIV disclosure of a parent's and/or a child's illness.

ABSTRACT: HIV prevalence in Kenya remains steady at 5.6% for adults 15 years and older, and 0.9% among children aged below 14 years. Parents and children are known to practice unprotected sex, which has implications for continued HIV spread within the country. Additionally, due to increased accessibility of antiretroviral therapy, more HIV-positive persons are living longer. Therefore, the need for HIV disclosure of a parent's and/or a child's HIV status within the country will continue for years to come. We conducted a qualitative phenomenological study to understand the entire process of disclosure from the time of initial HIV diagnosis of an index person within an HIV-affected family, to the time of full disclosure of a parent's and/or a child's HIV status to one or more HIV-positive, negative, or untested children within these households. Participants were purposively selected and included 16 HIV-positive parents, seven HIV-positive children, six healthcare professionals (physician, clinical officer, psychologist, registered nurse, social worker, and a peer educator), and five HIV-negative children. All participants underwent an in-depth individualized semistructured interview that was digitally recorded. Interviews were transcribed and analyzed in NVivo 8 using the modified Van Kaam method. Six themes emerged from the data indicating that factors such as HIV testing, living with HIV, evolution of disclosure, questions, emotions, benefits, and consequences of disclosure interact with each other and either impede or facilitate the HIV disclosure process. Kenya currently does not have guidelines for HIV disclosure of a parent's and/or a child's HIV status. HIV disclosure is a process that may result in poor outcomes in both parents and children. Therefore, understanding how these factors affect the disclosure process is key to achieving optimal disclosure outcomes in both parents and children. To this end, we propose an HIV disclosure model incorporating these six themes that is geared at helping healthcare professionals provide routine, clinic-based, targeted, disclosure-related counseling/advice and services to HIV-positive parents and their HIV-positive, HIV-negative, and untested children during the HIV disclosure process. The model should help improve HIV disclosure levels within HIV-affected households. Future researchers should test the utility and viability of our HIV disclosure model in different settings and cultures.

SUBMITTER: Gachanja G

PROVIDER: S-EPMC4748695 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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A model for HIV disclosure of a parent's and/or a child's illness.

Gachanja Grace G Burkholder Gary J GJ

PeerJ 20160204

HIV prevalence in Kenya remains steady at 5.6% for adults 15 years and older, and 0.9% among children aged below 14 years. Parents and children are known to practice unprotected sex, which has implications for continued HIV spread within the country. Additionally, due to increased accessibility of antiretroviral therapy, more HIV-positive persons are living longer. Therefore, the need for HIV disclosure of a parent's and/or a child's HIV status within the country will continue for years to come. ...[more]

PMID: 26870614

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Project description:The majority of HIV-infected children in sub-Saharan Africa have not been informed of their HIV status. Caregivers are reluctant to disclose HIV status to their children because of concern about the child's ability to understand, parental sense of guilt, and fear of social rejection and isolation. We hypothesized that the low prevalence of pediatric HIV disclosure in Ghana is due to lack of accurate HIV information and high HIV stigma among caregivers. This is a preliminary analysis of baseline data of an HIV pediatric disclosure intervention study in Ghana ("Sankofa"). "Sankofa" - is a two-arm randomized controlled clinical trial comparing disclosure intervention plus usual care (intervention arm) vs usual care (control arm) at Korle-Bu Teaching Hospital (KBTH; control arm) and Komfo-Anokye Teaching Hospital (KATH; intervention arm). We enrolled HIV-infected children, ages 7-18 years who do not know their HIV status, and their caregivers. Baseline data of caregivers included demographic characteristics; Brief HIV Knowledge Questionnaire (HIV-KQ-18); Brief Illness Perception Questionnaire; and HIV Stigma Scale. Simple and multivariable linear regression analyses were used to assess the relationship between caregiver characteristics and HIV knowledge, stigma, and illness perception. Two hundred and ninety-eight caregivers were enrolled between January 2013 and July 2014 at the two study sites; KBTH (n = 167) and KATH (n = 131). The median age of caregivers was 41 years; 80.5% of them were female and about 60% of caregivers were HIV-positive. Seventy-eight percent of caregivers were self-employed with low household income. In both unadjusted and adjusted analyses, HIV negative status and lower level of education were associated with poor scores on HIV-KQ. HIV positive status remained significant for higher level of stigma in the adjusted analyses. None of the caregiver's characteristics predicted caregiver's illness perception. Intensification of HIV education in schools and targeted community campaigns are needed.

Project description:BackgroundPerinatal mental illness is a global health concern; however, many women with the illness do not get the treatment they need to recover. Interventions that reduce the stigma around perinatal mental illness have the potential to enable women to disclose their symptoms to health care providers and consequently access treatment. There are many online forums for perinatal mental illness and thousands of women use them. Preliminary research suggests that online forums may promote help-seeking behavior, potentially because they have a role in challenging stigma. This study draws from these findings and theoretical concepts to present a model of forum use, stigma, and disclosure.ObjectiveThis study tested a model that measured the mediating role of stigma between online forum use and disclosure of affective symptoms to health care providers.MethodsA Web-based survey of 200 women who were pregnant or had a child younger than 5 years and considered themselves to be experiencing psychological distress was conducted. Women were recruited through social media and questions measured forum usage, perinatal mental illness stigma, disclosure to health care providers, depression and anxiety symptoms, barriers to disclosure, and demographic information.ResultsThere was a significant positive indirect effect of length of forum use on disclosure of symptoms through internal stigma, b=0.40, bias-corrected and accelerated (BCa) 95% CI 0.13-0.85. Long-term forum users reported higher levels of internal stigma, and higher internal stigma was associated with disclosure of symptoms to health care providers when controlling for symptoms of depression and anxiety.ConclusionsInternal stigma mediates the relationship between length of forum use and disclosure to health care providers. Findings suggest that forums have the potential to enable women to recognize and reveal their internal stigma, which may in turn lead to greater disclosure of symptoms to health care providers. Clinicians could refer clients to trustworthy and moderated online forums that facilitate expression of perinatal mental illness stigma and promote disclosure to health care providers.

Project description:IntroductionDisclosure of HIV status to sexual partners can help HIV prevention efforts and enable HIV positive people to receive social support, as well as increasing access and adherence to treatment. This study was conducted to determine the rate, processes, outcomes, and correlates of HIV status disclosure to sexual partners among HIV positive individuals.MethodA cross-sectional study was conducted between September and November 2015 at two HIV outpatient clinics in Addis Ababa, Ethiopia. Data were collected using an interviewer- administered semi-structured questionnaire. Logistic analysis was used to determine the independent correlates of serostatus disclosure.ResultsOf 742 participants, (371 men and 371 women), 727 (98%) were on antiretroviral therapy and 676 (91.1%) had at least one sexual partner since their HIV diagnosis, of whom 558 (82.5%) had disclosed their HIV status to their most recent sexual partner. Of those who reported having disclosed their status to their most recent sexual partner, 82 (14.7%) had at least one unprotected sexual encounter with the partner, after HIV diagnosis but prior to disclosure. The most commonly reported initial outcome of disclosure was gaining emotional and/or financial support. Some (11.3%) also reported that their disclosure immediately initiated their partner for HIV testing. Negative outcomes to disclosure, such as stigma and discrimination, were more common among females (26.2%) compared to males (12.7%). In the multiple regression analysis, disclosure was associated with greater condom use, greater social support, knowing the partner's HIV status, having a good relationship with the partner, and cohabiting with the partner.ConclusionHIV disclosure was common amongst participants, although sometimes delayed, with possible consequences for onward transmission. Fear of negative outcomes, such as verbal abuse and physical violence, were major barriers to disclosure. Efforts to support disclosure have the potential to contribute to HIV control and prevention by encouraging safer sexual practice, initiating partners for HIV testing, and enhancing support for people living with HIV.

Project description:BackgroundPediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge.MethodsSecondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1-17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models.ResultsThere was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction.ConclusionsIndividualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU.Trial registrationClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Project description:Background: Medical students are reluctant to access mental health services, despite having high rates of anxiety and depression. This reluctance persists through residency and into practice. Physicians and trainees who are unwell deliver lower quality patient care, behave less professionally, communicate less effectively and are at an increased risk for burnout and suicide. Little is known about whether students would disclose a mental health diagnosis on a state board medical license application.Objectives: The objectives of this study were to determine whether University of New Mexico School of Medicine (UNM SOM) students would be willing to disclose a mental health diagnosis on a medical licensing application if prompted to do so, and, if not, to identify the reasons for their unwillingness to do so.Design: We electronically invited all UNM SOM students enrolled in the Classes of 2019, 2020, 2021, and 2022 to participate in a confidential RedCap survey about mental health diagnoses and treatment. Four e-mail invitations and reminders were sent to students over a one-month period.Results: Response rate was 50.1%. Thirty-six percent of all respondents considered themselves to have had a mental health condition prior to medical school, and 47% of all respondents perceived a decline in mental health during medical school. The majority of respondents who perceived they had a mental health diagnosis (51%) stated they would not disclose this information on a New Mexico Medical Board (NMMB) license application. Fear of stigmatization, fear of repercussions, and a belief that such disclosure was irrelevant were the top reasons for non-disclosure.Conclusion: Students who perceive themselves to have mental health diagnoses are unlikely to disclose their mental health status on state medical board licensing applications when asked to do so. Addressing barriers to disclosure of mental health diagnoses is necessary for building a healthier physician workforce.

Dataset Information

A model for HIV disclosure of a parent's and/or a child's illness.

Publications

A model for HIV disclosure of a parent's and/or a child's illness.

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