HIV-Related Shame, Stigma and the Mental Health Functioning of Adolescents Living with HIV: Findings from a Pilot Study in Uganda.
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SUBMITTER: Nabunya P
PROVIDER: S-EPMC9170548 | biostudies-literature | 2023 Dec
REPOSITORIES: biostudies-literature
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HIV-Related Shame, Stigma and the Mental Health Functioning of Adolescents Living with HIV: Findings from a Pilot Study in Uganda.
Nabunya Proscovia P Namuwonge Flavia F
Child psychiatry and human development 20220607 6
This study examined the relationship between HIV-related shame, stigma and the mental health of adolescents (10-14 years) living with HIV in Uganda. Cross sectional data from a 2-year pilot study for adolescents living with HIV (N = 89) were analyzed. Multiple linear regression analyses were conducted to determine the relation between HIV-related shame, as measured by the Shame Questionnaire, stigma, and adolescents' mental health functioning, including depressive symptoms, hopelessness, PTSD sy ...[more]
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Project description:PurposeThis study examined the relationship between stigma by association-defined as prejudice and discrimination against individuals who are associated with stigmatized individuals, parenting stress, and the mental health of caregivers of adolescents living with HIV.MethodsMultivariate regression analyses were conducted using baseline data from the Suubi4Stigma study (2020-2022), a pilot study addressing HIV-related stigma among adolescents and their caregivers in southern Uganda.ResultsThe average age was 47 years, 77.5% were female, and 49% identified as the child's biological parent. Stigma by association was associated with poor caregiver mental health (b = 1.346, 95% confidence interval = 0.49, 2.21) and parenting stress (b = 1.431, 95% confidence interval = 0.79, 2.08). Caregiver's gender, biological relatedness, household composition, and family cohesion were uniquely associated with caregiver mental health and parenting stress.DiscussionFindings point to the need to incorporate stigma reduction components, not only for adolescents living with HIV, but also their caregivers, to counteract the effects of stigma on their mental health.
| S-EPMC10151126 | biostudies-literature
Project description:BackgroundSub-Saharan Africa (SSA) is heavily burdened by HIV, with 85% of the global new infections among adolescents happening in the region. With advances in medication and national policies promoting antiretroviral therapy (ART), children < 15 years living with HIV (CLWH) continue to grow with a chronic, highly stigmatized disease. Unfortunately, the stigma they experience results in much lower quality of life, including poor mental health and treatment outcomes. Family members also experience stigma and shame by virtue of their association with an HIV-infected family member. Yet, stigma-reduction interventions targeting CLWH and their families are very limited. The goal of this study is to address HIV-associated stigma among CLWH and their caregivers in Uganda.MethodsThis three-arm cluster randomized control trial, known as Suubi4Stigma, will evaluate the feasibility, acceptability, and preliminary impact of two evidence-based interventions: (1) group cognitive behavioral therapy (G-CBT) focused on cognitive restructuring and strengthening coping skills at the individual level and (2) a multiple family group (MFG) intervention that strengthens family relationships to address stigma among CLWH (N = 90, 10-14 years) and their families (dyads) in Uganda. Nine clinics will be randomized to one of three study arms (n = 3 clinics, 30 child-caregiver dyads each): (1) usual care; (2) G-CBT + usual care; and (3) MFG + usual care. Both treatment and control conditions will be delivered over a 3-month period. Data will be collected at baseline (pre-intervention) and at 3 months and 6 months post-intervention initiation.ConclusionThe primary aim of the proposed project is to address the urgent need for theoretically and empirically informed interventions that seek to reduce HIV-associated stigma and its negative impact on adolescent health and psychosocial well-being. As several countries in SSA grapple with care and support for CLWH, this study will lay the foundation for a larger intervention study investigating how HIV-associated stigma can be reduced to foster healthy child development-especially for CLWH as they transition through adolescence.Trial registrationClinicalTrials.gov: NCT04528732 ; Registered August 27, 2020.
| S-EPMC9052650 | biostudies-literature
Project description:HIV-related stigma has been documented as one of the greatest obstacles to reducing HIV spread, engagement in HIV treatment, and poor mental health functioning among people living with HIV (PLWH). Although disclosure is important for people to receive social support, the fear of stigma and discrimination prevents PLWH from disclosing their status. For children and adolescents growing up with HIV -with no opportunity for normal transition through adolescence due to stigma, it is important to identify additional family and community support systems, to improve their acceptance and health outcomes, including mental health functioning. This study examined family communication and social support factors associated with HIV disclosure and HIV-related stigma among children and adolescents living with HIV in Uganda. Baseline data from an NICHD-funded Suubi+Adherence study (N=702) were analyzed. Adolescents (10-16 years) were eligible to participate if they were: 1) HIV positive and knew their HIV status, 2) prescribed antiretroviral therapy, 3) lived within a family, not an institution, and 4) enrolled in one of the 39 health centers in the study area. Multiple regression analyses were conducted to determine family communication (frequency and level of comfort communicating with caregiver), social support (perceived child-caregiver support and social support from classmates, close friends, teachers, and caregivers), associated with HIV disclosure, disclosure comfort, and HIV internalized and anticipated stigma. Results show that level of comfort communicating with a caregiver was significantly associated with how often children discussed their HIV status with other people (B = 0.02, 95% CI = 0.00, 0.03, p = 0.04), and level of HIV disclosure comfort (B = 0.08, 95% CI = 0.04, 0.13, p < 0.01). In addition, support from within the school environment, i.e., from teachers and classmates, was uniquely associated with both HIV disclosure and HIV-related stigma. Findings point to schools as potential for implementing HIV stigma-reduction programs. In addition, programming aimed at improving HIV care and treatment outcomes for adolescents living with HIV should consider incorporating both family communication strengthening and HIV-stigma reduction strategies in their efforts, in order to improve HIV health-related outcomes, including overall mental health functioning of HIV positive adolescents.
| S-EPMC7411995 | biostudies-literature
Project description:ObjectiveWe examine the preliminary impact of group-cognitive behavioral therapy (G-CBT) versus a family-strengthening intervention delivered via multiple family group (MFG) in improving ART adherence among adolescents living with HIV (ALHIV) in Uganda.MethodsWe analyzed data from a pilot cluster-randomized trial (2020-2022) conducted in 9 clinics in Uganda among 89 participants, who were eligible out of the 147 ALHIV screened. Participants were eligible if they were aged 10-14 years, HIV positive, taking ART, and living with a family. Adolescents were randomized, at the clinic level, to receive the usual care (n = 29), MFG (n = 34), or G-CBT (n = 26). The interventions were delivered over 3 months. Overall, the mean percentage attendance for the 10 G-CBT and MFG sessions was 87.7% and 90.2%, respectively. Three ALHIV were lost to follow-up, while 1 child died. Adherence was assessed using pharmacy records collected at baseline and 4 additional pharmacy visits. We used mixed-effects logistic regression analysis to examine the effect of the interventions on ART adherence.ResultsWe found statistically significant main effects for the intervention, χ2(2) = 7.76, p = .021, time, χ2(2) = 39.67, p < .001, and intervention-time interaction effect χ2(6)= 27.65, p < .001. Pairwise comparisons showed increasing adherence in the MFG group compared to usual care at visit 3 (odds ratio [OR] = 4.52 [1.01-20.11], p = .047) and visit 5 (OR = 3.56 [1.42-8.91], p = .007). Also, compared to usual care, participants who received G-CBT showed higher adherence at visit 4 (OR = 2.69 [1.32-5.50], p = .007).ConclusionsOur study showed preliminary evidence that G-CBT and MFG might have contributed to improved ART adherence among ALHIV. Moreover, G-CBT is a low-cost alternative to expensive individual therapy, especially in low-resource settings. The results warrant the need for more extensive studies to better understand the role of these interventions in the routine care of ALHIV. The trial is registered at ClinicalTrials.Gov (#NCT04528732).
| S-EPMC10653347 | biostudies-literature
Project description:Objective. Interventions that effectively address HIV-related stigma are urgently needed to improve outcomes for adolescents living with HIV (ALHIV). We piloted a series of 4 short narrative films depicting Kenyan ALHIV's lived experiences of stigma and discrimination with 57 ALHIV and 50 adult caregivers of ALHIV in western Kenya. Methods. Participants completed either pre- and post-viewing questionnaires, including an HIV/AIDS-related stigma and discrimination scale, or participated in post-viewing focus group discussions. Three-month follow-up visits were conducted. Results. Caregivers endorsed significantly greater disagreement with stigmatizing statements on the scale at 3-month follow-up, whereas adolescents had no significant differences in scores. Participants reported they believed the films would have a positive impact on their communities and had led to changes in their own attitudes, beliefs and/or behavior. Conclusion. The HIV Stigma Films may show promise as an intervention to reduce stigmatizing attitudes and beliefs about HIV-infection, especially among caregivers of ALHIV.
| S-EPMC10898294 | biostudies-literature
Project description:BackgroundHIV stigma remains a formidable barrier to HIV treatment adherence among school-attending adolescents living with HIV, owing to high levels of HIV stigma within schools, rigid school structures and routines, lack of adherence support, and food insecurity. Thus, this protocol paper presents an evidence-informed multilevel intervention that will simultaneously address family- and school-related barriers to HIV treatment adherence and care engagement among adolescents living with HIV attending boarding schools in Uganda.ObjectiveThe proposed intervention-Multilevel Suubi (MSuubi)-has the following objectives: examine the impact of M-Suubi on HIV viral suppression (primary outcome) and adherence to HIV treatment, including keeping appointments, pharmacy refills, pill counts, and retention in care; examine the effect of M-Suubi on HIV stigma (internalized, anticipated, and enacted), with secondary analyses to explore hypothesized mechanisms of change (eg, depression) and intervention mediation; assess the cost and cost-effectiveness of each intervention condition; and qualitatively examine participants' experiences with HIV stigma, HIV treatment adherence, and intervention and educators' attitudes toward adolescents living with HIV and experiences with group-based HIV stigma reduction for educators, and program or policy implementation after training.MethodsMSuubi is a 5-year multilevel mixed methods randomized controlled trial targeting adolescents living with HIV aged 10 to 17 years enrolled in a primary or secondary school with a boarding section. This longitudinal study will use a 3-arm cluster randomized design across 42 HIV clinics in southwestern Uganda. Participants will be randomized at the clinic level to 1 of the 3 study conditions (n=14 schools; n=280 students per study arm). These include the bolstered usual care (consisting of the literature on antiretroviral therapy adherence promotion and stigma reduction), multiple family groups for HIV stigma reduction plus family economic empowerment (MFG-HIVSR plus FEE), and Group-based HIV stigma reduction for educators (GED-HIVSR). Adolescents randomized to the GED-HIVSR treatment arm will also receive the MFG-HIVSR plus FEE treatment. MSuubi will be provided for 20 months, with assessments at baseline and 12, 24, and 36 months.ResultsThis study was funded in September 2021. Participant screening and recruitment began in April 2022, with 158 dyads enrolled as of May 2022. Dissemination of the main study findings is anticipated in 2025.ConclusionsMSuubi will assess the effects of a combined intervention (family-based economic empowerment, financial literacy education, and school-based HIV stigma) on HIV stigma among adolescents living with HIV in Uganda. The results will expand our understanding of effective intervention strategies for reducing stigma among HIV-infected and noninfected populations in Uganda and improving HIV treatment outcomes among adolescents living with HIV in sub-Saharan Africa.Trial registrationClinicalTrials.gov NCT05307250; https://clinicaltrials.gov/ct2/show/NCT05307250.International registered report identifier (irrid)PRR1-10.2196/40101.
| S-EPMC9582915 | biostudies-literature
Project description:BackgroundIn Malawi, approximately 25% of adolescents living with HIV (ALWH) also suffer from depression. Not only is HIV stigma a major contributor to depression but it also adversely impacts HIV care engagement. ALWH can experience HIV stigma as stereotyping, social exclusion, low social support, and abuse, and these experiences are associated with poor mental health. Despite recognition of the deleterious effects of HIV stigma, we have limited knowledge of how stigma is experienced by ALWH with comorbid depression. Guided by the Health Stigma and Discrimination Framework, we describe stigma faced by ALWH and comorbid depression in Malawi and its implications for future interventions.MethodsAs part of a larger formative study to adapt a mental health counseling intervention, we conducted in-depth interviews, social support mapping sessions, and focus-group discussions with 25 ALWH, 4 caregivers of ALWH, 3 HIV providers, and 5 participants and 5 staff of a prior mental health counseling intervention. After analyzing the stigma codes, we used the Health Stigma and Discrimination Framework to organize the data into four key domains: drivers, manifestations, outcomes, and health and social impacts.ResultsMajor drivers of HIV stigma included fear of HIV transmission, negative effects of antiretroviral therapy (ART), association with death, inaccurate knowledge, and negative attitudes towards ALWH. The most common manifestations of HIV stigma were gossip, insults and mocking, and physical and social distancing. Decreased ART adherence and missed HIV appointments were commonly cited outcomes of HIV stigma. Broader health impacts of HIV stigma were notable for mental health comorbidities including depression, anxiety, substance use, and suicidality. Identified resilience strategies included support for HIV care engagement and psychosocial support from family and friends.ConclusionsThis study systematically describes the stigmatization process faced by ALWH and experiencing depressive symptoms in Malawi. Notably, HIV stigma continues to disrupt HIV care and detrimentally impacts mental health during adolescent development. Further studies focused specifically on stigma are needed to better characterize this process and identify additional resilience factors. Investment in stigma-reduction interventions for ALWH is needed to avert poor mental health and HIV outcomes.
| S-EPMC11622908 | biostudies-literature
Project description:Youth living with HIV (YLWH) face psychosocial challenges and HIV-related stigma, which impact adherence to antiretroviral therapy (ART). This study was designed to understand better the change in mental health symptoms and experiences with stigma among YLWH in Tanzania who completed the original pilot Sauti ya Vijana (SYV), a mental health and life skills group intervention. YLWH who completed SYV and demonstrated a change of ≥2 points in either direction on their Patient Health Questionnaire PHQ-9 (depression screener) from baseline to 18 months were purposively sampled. HIV Stigma was measured using 10-questions from the Berger HIV Stigma Scale, and findings ranged from 4-16 for internal stigma and 6-24 for external stigma. In-depth interviews (IDI) were conducted in Kiswahili and included topics such as history of mental health challenges, perceptions of stigma, and experiences with the SYV intervention. Interviews were transcribed, translated to English, and analyzed for emergent themes. Ten youth, 18-25 years of age, were interviewed; 70% were male. Mean (SD) PHQ-9 scores were 7.3 (SD = 3.5) at baseline and 5.6 (SD = 5.0) at 18 months. All participants reported experiencing intermittent episodes of mental health challenges due to difficult interpersonal relationships and fear of stigma. Youth relied on peer support and skills from the SYV intervention to cope with mental health challenges and stigma. Participants reported fear of being stigmatized by others, which led to behaviors such as skipping medication or avoiding situations for worry about unintentional disclosure. All participants endorsed experiencing external stigma on the HIV stigma scale; however, only 3 of 10 participants reported experiencing enacted stigma when directly asked to describe an experience during in-depth interviews. Participants described how SYV helped them have "more confidence", accept themselves, and incorporate positive coping skills such as relaxation (deep breathing) when they felt stressed. The findings suggest SYV helped YLWH accept themselves, develop positive coping methods, and identify and form peer social support; but stigma remains common. Descriptions of stigma were not recognized as such; experiences of enacted stigma were acknowledged by some participants. More research is needed to understand and measure mental distress and wellness as well as stigma in this population so that interventions may more accurately detect change in key outcomes.
| S-EPMC11774362 | biostudies-literature
Project description:AIDS-related stigma and mental disorders are the most common conditions in people living with HIV (PLHIV). We therefore conducted this study to examine the association of AIDS-related stigma and discrimination with mental disorders among PLHIV in Cambodia.A two-stage cluster sampling method was used to select 1,003 adult PLHIV from six provinces. The People Living with HIV Stigma Index was used to measure stigma and discrimination, and a short version of general health questionnaire (GHQ-12) was used to measure mental disorders. Multivariate logistic regression analysis was conducted.The reported experiences of discrimination in communities in the past 12 months ranged from 0.8% for reports of being denied health services to 42.3% for being aware of being gossiped about. Internal stigma was also common ranging from 2.8% for avoiding going to a local clinic and/or hospital to 59.6% for deciding not to have (more) children. The proportions of PLHIV who reported fear of stigma and discrimination ranged from 13.9% for fear of being physically assaulted to 34.5% for fear of being gossiped about. The mean score of GHQ-12 was 3.2 (SD = 2.4). After controlling for several potential confounders, higher levels of mental disorders (GHQ-12≥ 4) remained significantly associated with higher levels of experiences of stigma and discrimination in family and communities (AOR = 1.9, 95% CI = 1.4-2.6), higher levels of internal stigma (AOR = 1.7, 95% CI = 1.2-2.3), and higher levels of fear of stigma and discrimination in family and communities (AOR = 1.5, 95% CI = 1.1-2.2).AIDS-related stigma and discrimination among PLHIV in Cambodia are common and may have potential impacts on their mental health conditions. These findings indicate a need for community-based interventions to reduce stigma and discrimination in the general public and to help PLHIV to cope with this situation.
| S-EPMC4373790 | biostudies-other
Project description:Disclosing HIV status to children before adolescence is a major challenge facing families and healthcare providers. This study used a mixed methods approach to explore the youth perspective of how youth living with HIV (YLHIV) found out their status and to quantify the association of disclosure modality with mental health, stigma, adherence, and HIV outcomes in adolescence. Youth 11-24 years of age attending adolescent HIV clinic in Moshi, Tanzania were included. Adolescents answered questions, including when and how they found out they had HIV, mental health surveys (nine-item Patient Health Questionnaire, Strengths and Difficulties Questionnaire, and modified University of California Los Angeles trauma screen), modified Berger's stigma scale, and self-reported adherence. HIV-1 RNA and latest CD4 were obtained. In-depth interviews were conducted using a convenience sample. The majority of youth reported that they found out their HIV status on their own (80%). Youth attending the government site were less likely to be purposefully told their HIV status compared with those attending the referral site (p?<?0.01). Depressive and emotional/behavioral symptoms, internal stigma, and incomplete adherence were significantly more likely among those who figured out their HIV status on their own as compared with those who were purposefully told. Youth discussed how they figured out their HIV status on their own during in-depth interviews. These findings demonstrated that youth who figured out their HIV status on their own had increased mental health symptoms and worse adherence to antiretroviral therapy (ART). It is imperative to implement disclosure protocols in early childhood to reduce mental health difficulties, internal stigma, and promote ART adherence in YLHIV.
| S-EPMC5756938 | biostudies-other