Aidsimpact 2023: "We did more than survive": lessons learned from studies of risk and resilience of young people growing up with HIV and mental health needs.

Despite advances in HIV-treatment, adolescents and young adults (AYA) with HIV (AYAHIV) face myriad challenges. They are less likely than children and older adults to be virally suppressed and are at higher risk for mental health conditions compared to their peers who do not have HIV. AYA are also developing in the context of numerous biomedical, neurocognitive, and psychosocial developmental changes. Normative challenges during this time can be exacerbated by HIV and can result in significant physical and mental health problems. Yet, many AYAHIV have shown resilience with positive assets and resources and few health or mental health problems. Historically research has had a risk-focused approach to understanding AYAHIV needs. This paper discusses the rationale for a shift from a risk-focused only approach to one that examines AYAHIV needs from both a risk and resilience perspective. This paper presents: (1) epidemiological data on AYAHIV; (2) conceptual models for understanding both risk (e.g., poverty, stress, trauma, limited resources) and resilience/protective factors (e.g., family and peer support, future orientation, problem-solving skills); (3) global data examining risk and protective factors for physical and mental health challenges; and (4) promising interventions that incorporate elements of resilience to improve overall outcomes among AYAHIV.

Assessing the Validity of the Social Impact Scale Among a Longitudinal Cohort of Adolescents and Young Adults Living With Perinatally Acquired HIV.

BACKGROUND: With few psychometrically evaluated HIV-related stigma measures for adolescents and young adults living with HIV, we examined the developmental applicability (ie, validity) of 2 subscales of the commonly used stigma measure, the Social Impact Scale, among a cohort of adolescents and young adults with perinatally acquired HIV. SETTING: Data were obtained from a New York City longitudinal study (N = 340). This study primarily comprised Black and Latinx adolescents and young adults with either perinatally acquired HIV or those with perinatal exposure but who are uninfected. Data for this analysis were obtained from the population with perinatally acquired HIV and spanned approximately a 15-year survey period (2003-2018). METHODS: A confirmatory factor analysis was used at 7 time points to assess whether the Social Rejection and Internalized Shame subscales were consistent in this cohort over time. Overall and individual Cronbach alphas were reported to show the strength of the internal consistency. RESULTS: The mean age from baseline to follow-up 6 ranged from 12 to 23 years over the study period. The Social Rejection subscale was acceptably valid across follow-up periods with strong factor loadings and Cronbach alphas higher than 0.70. However, the Internalized Shame subscale was less valid among younger adolescents. Starting at follow-up 2, we observed better validity with the Internalized Shame subscale performance. CONCLUSION: Future research must consider mechanisms for developing and adapting measures from a developmental perspective to best measure the experiences of HIV-related stigma among younger populations.

Prevalence and Correlates of Intimate Partner Violence Victimization Among Urban Adolescents and Young Adults Living With Perinatally-Acquired HIV Infection or Perinatal HIV Exposure.

INTRODUCTION: Because of privacy and ethical concerns, the data cannot be made available because of the sensitivity of the HIV data and the relatively small sample and ease of identifying people if a few demographics are known.Few studies have examined intimate partner violence (IPV) victimization among adolescents and young adults (AYAs) with perinatally acquired HIV-infection (PHIV) or perinatal HIV exposure without infection (PHEU) in the United States. The purpose of this study was to (1) estimate lifetime and past-year prevalence of IPV victimization and (2) examine correlates of IPV victimization by subtype (physical, psychological, and sexual) and severity (low, moderate, and severe). METHODS: Data came from the sixth interview of an ongoing New York City-based longitudinal study of primarily Black and Latinx AYAPHIV and AYAPHEU. We examined 232 participants (142 PHIV; 90 PHEU) who had reported having been in at least 1 romantic relationship. We used logistic regression models to explore the association between IPV victimization outcomes and select sociodemographic, psychiatric, and environmental factors. Models were adjusted for age, gender, race, ethnicity, and HIV status. RESULTS: IPV victimization prevalence was 84% for lifetime and 65% for the past year. There were no differences in IPV victimization prevalence by PHIV status. Having a recent substance use disorder, reporting higher levels of neighborhood stress, and being male were all positively associated with at least 1 IPV outcome; stronger familial relationships exhibited a protective effect. CONCLUSIONS: The present study suggests that the prevalence of IPV victimization among AYAPHIV and AYAPHEU is exceedingly high that warrants targeted IPV screening and programming for this population.

Multilevel experiences of carceral violence in Los Angeles, California: first-hand accounts from a racially diverse sample of transgender women.

Transgender women face a disproportionate burden of carceral violence, or violence related to policing and the criminal legal system, with transgender women of colour experiencing even greater disparities. Several frameworks conceptualise the mechanisms through which violence impacts transgender women. However, none of them directly explore the role of carceral violence, particularly as it is experienced by transgender women themselves. Sixteen in-depth interviews were conducted with a racially/ethnically diverse sample of transgender women in Los Angeles between May and July 2020. Participants were between 23 - 67 years old. Participants identified as Black (n = 4), Latina (n = 4), white (n = 2), Asian (n = 2), and Native American (n = 2). Interviews assessed experiences of multilevel violence, including from police and law enforcement. Deductive and inductive coding methods were used to identify and explore common themes concerning carceral violence. Experiences of law enforcement-perpetrated interpersonal violence were common and included physical, sexual and verbal abuse. Participants also highlighted structural violence, including misgendering, the non-acceptance of transgender identities, and police intentionally failing to uphold laws that could protect transgender women. These results demonstrate the pervasive, multilevel nature of carceral violence perpetrated against transgender women and suggest avenues for future framework development, trans-specific expansions of carceral theory, and system-wide institutional change.

Identifying the Mental Health Effects of Cumulative Traumatic Exposure in HIV-Affected Youth: A Longitudinal Assessment.

INTRODUCTION: Traumatic events (TEs) in early life can precede adult psychopathology. Limited research exists on this relationship in young adults with perinatally acquired HIV-infection (PHIV) or perinatal HIV-exposure without infection (PHEU), who often experience social and health disparities. This study examined TEs experienced in childhood/adolescence and their association with psychiatric and substance use disorders in young adults with PHIV and PHEU. METHODS: Participants in a New York City-based longitudinal cohort study were assessed for TE exposure at enrollment (mean age = 12 years) and the first 2 follow-up interviews. Past-year psychiatric and substance use disorders were evaluated via psychiatric interview (DISC-IV) at the fifth follow-up interview (mean age = 22 years). Unadjusted and adjusted logistic regression models assessed associations between cumulative childhood/adolescence TEs and young adult psychiatric and substance use outcomes. Group differences were tested for PHIV and PHEU subgroups. RESULTS: Among 236 participants (60% Black, 51% Latinx), mean cumulative traumatic event count was 3.09 (SD = 1.77); 26% had a past-year psychiatric diagnosis, and 28% had a past-year substance use diagnosis. Increased TEs were associated with past-year psychiatric diagnoses in young adulthood [average marginal effects (AME) 4.21, 95% confidence interval (CI): 0.83 to 7.58]; for PHEU participants, increased TEs were associated with a past-year substance use disorder (AME 15.67, 95% CI: 8.08 to 23.25). CONCLUSIONS: High levels of TEs in childhood/adolescence may contribute to psychiatric and substance use disorders in young adults with PHIV or PHEU. Research exploring relationships between TE exposure and later psychiatric problems is needed to inform interventions for HIV-affected youth.

Virtual Implementation of a Photovoice Project With Youth in Baltimore During the COVID-19 Pandemic.

This article describes the virtual implementation of Photovoice activities conducted as part of a project that sought to gather youths' perspectives on neighborhood and housing conditions, community redevelopment, and health and well-being in Baltimore. We discuss the original in-person design and how activities were implemented virtually, in light of coronavirus disease 2019 (COVID-19) physical distancing guidelines. Challenges to virtual implementation included establishing rapport with youth and families during recruitment and data collection, encouraging active participation during discussion sessions, and varying technological skills among youth. Facilitators of virtual implementation included partnering with a community organization, piloting virtual sessions to assess participant's technology skills, and providing various ways for youth to participate during discussion sessions, engage in group activities, and receive hands-on instruction. This article showcases the ways in which virtual implementation of Photovoice activities can be successfully implemented with youth and provides recommendations for future Photovoice projects that include virtual activities.

Youth perspectives of working with near peer youth lay counsellors: The Safe Haven Pilot.

Youth living with HIV (YLWH) have higher rates of common mental disorders (CMDs) when compared with HIV-negative youth. We adapted the Friendship Bench to create a problem solving-based counselling intervention in Botswana delivered by near peer youth lay counsellors for YLWH called Safe Haven. In August 2020, and from June to August 2021, we conducted 22 semistructured interviews with youth aged 13-25 years with mild-to-moderate symptoms of CMDs. Two independent coders carried out an inductive thematic analysis of the transcribed interviews with discrepancies discussed to consensus. Safe Haven was seen as largely acceptable among the youth. Youth felt Safe Haven was a place where they had freedom of expression and could receive practical advice from well-trained and approachable counsellors. Trained youth lay peer counsellors show promise to meet the mental health needs of mild and moderately symptomatic youth, where mental health professionals are in short supply.

The need for epidemiological research on eating disorders in Africa and the Caribbean.

The eating disorders field acknowledges the need to include diverse populations in research. Although global diversity has increased in epidemiologic research, there is still a significant lack of research in Africa and the Caribbean. The objectives of this article are to highlight knowledge gaps in these regions and make recommendations to improve future research. We searched the literature about the epidemiology of eating disorders in Africa and the Caribbean and provided a brief summary of research findings and measures used to identify cases. There is a large knowledge gap about the epidemiology of eating disorders across African and Caribbean nations. Knowledge about the cultural appropriateness of measurement instruments and screening tools is also lacking. Inadequate information about the epidemiology of eating disorders in Africa and the Caribbean inhibits the eating disorders research field from identifying who is affected. Further, measures and screening instruments with uncertain cultural validity inhibit the ability to understand case presentations and treatment targets. We recommend that the field advocate for the inclusion of eating disorders in larger population health research and that future research should evaluate the appropriateness of measurement instruments to capture eating disorder cases in African and Caribbean countries. PUBLIC SIGNIFICANCE: There is a lack of eating disorder research in African and Caribbean countries. The limited studies that do exist show evidence of eating disorders in African and Caribbean countries. Research is needed to develop culturally relevant measures for screening and case identification, and to calculate incidence and prevalence.

Associations between social network characteristics and sexual minority disclosure concern among Black men who have sex with men living with and without HIV.

In addition to the pervasive anti-Black racism faced by Black people in the United States, Black men who have sex with men (BMSM) face sexual minority stigma and, among BMSM living with HIV, HIV-related stigma. These multilevel social forces shape social networks, which are important sources of resources, support, and behavior regulation. This study quantitatively examined the relationship between social network characteristics and sexual minority stigma (e.g., homophobia, biphobia), assessed by reported concerns around disclosing one's sexual minority status, among BMSM in Baltimore, Maryland in 2014 (N = 336). A majority of participants (63.7%) reported experiencing medium or high levels of sexual minority disclosure concern. In a multiple linear regression model, participants with higher sexual minority disclosure concern reported lower network density and having fewer good friends who are gay or bisexual men. Stratifying the same multiple linear regression model by HIV status supports the importance of an intersectional understanding of sexual minority and HIV-related stigma. These findings can help health-related programs address the complex relationships between sexual minority stigma, social networks, and HIV status within this multiply-marginalized and high-priority population.

"It's Better If I Die Because Even in the Hospital, There is a Stigma, People Still Gossip": Gossip as a Culturally Shaped Labeling Process and Its Implications for HIV-Related Stigma in Botswana.

This study qualitatively explores HIV-related gossip as both a manifestation and driver of HIV-related stigma, which is a known barrier to HIV testing and treatment in Botswana. Data were elicited from 5 focus group discussions and 46 semi-structured in-depth interviews with individuals living with HIV and community members with undisclosed serostatus in Gaborone, Botswana in 2017 (n = 84). Directed content analysis using the 'What Matters Most' theoretical framework identified culturally salient manifestations of HIV-related stigma; simultaneous use of Modified Labeling Theory allowed interpretation and stepwise organization of how the social phenomenon of gossip leads to adverse HIV outcomes. Results indicated that HIV-related gossip can diminish community standing through culturally influenced mechanisms, in turn precipitating poor psychosocial well-being and worsened HIV-related outcomes. These harms may be offset by protective factors, such as appearing healthy, accepting one's HIV status, and community education about the harms of gossip.

Mental Health Problems Across the HIV Care Continuum for Adolescents Living with HIV in Sub-Saharan Africa: A Scoping Review.

Mental health problems (e.g., anxiety, depression) are frequently experienced by adolescents living with HIV (ALWH) and can worsen HIV-related outcomes. This scoping review synthesizes the existing research on ALWHs' mental health problems at multiple steps along the HIV care continuum in sub-Saharan Africa. Searching PubMed, CINAHL, EMBASE, and PsycINFO identified 34 peer-reviewed studies that met inclusion criteria. Most studies assessed ALWHs' mental health problems at the "Engaged or Retained in Care" continuum step, are cross-sectional, focus on depression and anxiety, and used measures developed in high-income countries. Studies identify mental health problems among ALWH as prevalent and barriers to care. Significant gaps remain in understanding how mental health problems and their relationships with HIV-related health outcomes shift across the continuum. Additional attention is needed, especially at the HIV testing and viral suppression steps, to generate a more comprehensive understanding of mental health needs and priority timepoints for intervention for ALWH.

Integrating Adolescent Mental Health into HIV Prevention and Treatment Programs: Can Implementation Science Pave the Path Forward?

Adolescent mental health (AMH) is a critical driver of HIV outcomes, but is often overlooked in HIV research and programming. The implementation science Exploration, Preparation, Implementation, Sustainment (EPIS) framework informed development of a questionnaire that was sent to a global alliance of adolescent HIV researchers, providers, and implementors working in sub-Saharan Africa with the aim to (1) describe current AMH outcomes incorporated into HIV research within the alliance; (2) identify determinants (barriers/gaps) of integrating AMH into HIV research and care; and (3) describe current AMH screening and referral systems in adolescent HIV programs in sub-Saharan Africa. Respondents reported on fourteen named studies that included AMH outcomes in HIV research. Barriers to AMH integration in HIV research and care programs were explored with suggested implementation science strategies to achieve the goal of integrated and sustained mental health services within adolescent HIV programs.

Theory-Driven, Multi-Stage Process to Develop a Culturally-Informed Anti-Stigma Intervention for Pregnant Women Living with HIV in Botswana.

Background and Objectives: Despite a well-established universal HIV diagnosis and treatment program, Botswana continues to face a high HIV prevalence, in large part due to persistent stigma, which particularly affects pregnant women and interferes with healthcare engagement. Tackling stigma as a fundamental cause of HIV disparities is an important but understudied aspect of current HIV interventions. Our multinational and multicultural team used a theory-driven, multi-stage iterative process to develop measures and interventions to first identify and then target the most culturally-salient aspects of stigma for mothers living with HIV in Botswana. This methodology report examines the stage-by-stage application of the "What Matters Most" (WMM) theory and lessons learned, sharing a replicable template for developing culturally-shaped anti-stigma interventions. Methods: First, we conducted initial qualitative work based on the WMM theory to identify key structural and cultural factors shaping stigma for women living with HIV in Botswana. Second, we developed a psychometrically validated scale measuring how "what matters most" contributes to and protects against stigma for this population. Third, we designed an anti-stigma intervention, "Mothers Moving towards Empowerment" (MME), centered on the local values identified using WMM theory that underly empowerment and motherhood by adapting a cognitive behavioral therapy (CBT)-informed, group-based, and peer-co-led anti-stigma intervention specifically for pregnant women living with HIV. Fourth, we conducted a pilot study of MME in which participants were allocated to two trial arms: intervention or treatment-as-usual control. Results: Our qualitative research identified that bearing and caring for children are capabilities essential to the concept of respected womanhood, which can be threatened by a real or perceived HIV diagnosis. These values informed the development and validation of a scale to measure these culturally-salient aspects of stigma for women living with HIV in Botswana. These findings further informed our intervention adaptation and pilot evaluation, in which the intervention group showed significant decreases in HIV stigma and depressive symptoms compared to the control group. Participants reported overcoming reluctance to disclose their HIV status to family, leading to improved social support. Conclusion and Global Health Implications: Previous studies have not utilized culturally-based approaches to assess, resist, and intervene with HIV-related stigma. By applying WMM in each stage, we identified cultural and gendered differences that enabled participants to resist HIV stigma. Focusing on these capabilities that enable full personhood, we developed an effective culturally-tailored anti-stigma intervention for pregnant women living with HIV in Botswana. This theory-driven, multi-stage approach can be replicated to achieve stigma reduction for other outcomes, populations, and contexts.

A pilot pragmatic trial of a "what matters most"-based intervention targeting intersectional stigma related to being pregnant and living with HIV in Botswana.

We conducted a pilot trial of an intervention targeting intersectional stigma related to being pregnant and living with HIV while promoting capabilities for achieving 'respected motherhood' ('what matters most') in Botswana. A pragmatic design allocated participants to the intervention (N = 44) group and the treatment-as-usual (N = 15) group. An intent-to-treat, difference-in-difference analysis found the intervention group had significant decreases in HIV stigma (d = - 1.20; 95% CI - 1.99, - 0.39) and depressive symptoms (d = - 1.96; 95% CI - 2.89, - 1.02) from baseline to 4-months postpartum. Some, albeit less pronounced, changes in intersectional stigma were observed, suggesting the importance of structural-level intervention components to reduce intersectional stigma.

Gastrointestinal concerns in children with autism spectrum disorder: A qualitative study of family experiences.

LAY ABSTRACT: Gastrointestinal problems are common in the autism spectrum disorder community and may affect both the person with autism spectrum disorder and their families. However, little research is available on the experiences of families who have a child with both autism spectrum disorder and gastrointestinal symptoms. We held one-on-one interviews with 12 parents of children who had both autism spectrum disorder and gastrointestinal symptoms. We analyzed the raw text responses from these interviews and identified four main themes. First, parents shared that their children had trouble verbally communicating when they were experiencing gastrointestinal symptoms (Theme 1). This led parents to use bodily signs, such as changes in the stool, and non-verbal behaviors, such as irritability, to recognize when their child was having gastrointestinal symptoms. Next, gastrointestinal issues affected both the child's well-being and their ability to attend class and extracurricular or social activities (Theme 2). The gastrointestinal issues also affected the family's routines, overall well-being, and their ability to go out and do activities together as a family (Theme 3). Finally, parents often had challenges receiving accessible and quality healthcare for their child's gastrointestinal problems (Theme 4). Together, these findings highlight the enormous burden that gastrointestinal symptoms have on the wellness of children with autism spectrum disorder and their families.

The impact of China-to-US immigration on structural and cultural determinants of HIV-related stigma: implications for HIV care of Chinese immigrants.

Objectives: Asian Americans have poor HIV-related outcomes, yet culturally salient barriers to care remain unclear, limiting development of targeted interventions for this group. We applied the 'what matters most' theory of stigma to identify structural and cultural factors that shape the nature of stigma before and after immigration from China to the US.Design: Semi-structured interviews were conducted with 16 immigrants to New York from China, recruited from an HIV clinic and community centers. Deductive followed by focal inductive qualitative analyses examined how Chinese cultural values (lian, guanxi, renqing) and structural factors influenced stigma before and after immigration.Results: In China, HIV stigma was felt through the loss of lian (moral status) and limited guanxi (social network) opportunities. A social structure characterized by limited HIV knowledge, discriminatory treatment from healthcare systems, and human rights violations impinged on the ability of people living with HIV to fulfill culturally valued goals. Upon moving to the US, positions of structural vulnerability shifted to enable maintenance of lian and formation of new guanxi, thus ameliorating aspects of stigma.Conclusions: HIV prevention and stigma reduction interventions among Chinese immigrants may be most effective by both addressing structural constraints and facilitating achievement of cultural values through clinical, peer, and group interventions.

Disclosure of same-sex practices and experiences of healthcare stigma among cisgender men who have sex with men in five sub-Saharan African countries.

BACKGROUND: For men who have sex with men (MSM) across sub-Saharan Africa (SSA), disclosure of same-sex practices to family and healthcare workers (HCWs) can facilitate access to HIV prevention services and support, but can also lead to experiences of stigma. METHODS: We performed mixed-effects regressions on pooled data from MSM in Cameroon, Senegal, Côte d'Ivoire, Lesotho, and eSwatini to assess associations between disclosure and sexual behavior stigma in healthcare contexts; we used logistic regressions to analyze country-specific data. RESULTS: Compared to participants who had not disclosed to either family or HCWs, those who had disclosed only to family were more likely to have been gossiped about by HCWs (aOR = 1.70, CI = 1.18, 2.45); the association between having disclosed to family and having felt mistreated in a health center approached, but did not achieve, statistical significance (aOR = 1.56, CI = 0.94, 2.59). Those who had disclosed only to HCWs were more likely to have feared to seek health services (aOR = 1.60, CI = 1.14, 2.25), avoided health services (aOR = 1.74, CI = 1.22, 2.50), and felt mistreated in a health center (aOR = 2.62, CI = 1.43, 4.81). Those who had disclosed to both were more likely to have feared to seek health services (aOR = 1.71, CI = 1.16, 2.52), avoided health services (aOR = 1.59, CI = 1.04, 2.42), been gossiped about by HCWs (aOR = 3.78, CI = 2.38, 5.99), and felt mistreated in a health center (aOR = 3.39, CI = 1.86, 6.20). Country-specific analyses suggested that data from Cameroon drove several of these associations. CONCLUSIONS: Research to determine the factors driving disclosure's differential effect on healthcare stigma across contexts is needed. Ultimately, supportive environments enabling safe disclosure is critical to understanding HIV-acquisition risks and informing differentiated HIV-prevention, treatment, and testing services for MSM across SSA.

Measuring sexual violence stigma in humanitarian contexts: assessment of scale psychometric properties and validity with female sexual violence survivors from Somalia and Syria.

BACKGROUND: Valid measures of sexual violence stigma that can be readily incorporated into program monitoring and evaluation systems are needed to strengthen gender-based violence (GBV) services in humanitarian emergencies. This study sought to assess the psychometric properties, construct validity, and measurement invariance of sexual violence stigma scales among female Somali GBV survivors in Kenya and Syrian GBV survivors in Jordan to identify an abbreviated scale that could be used across humanitarian contexts. METHODS: We administered measures of sexual violence stigma to 209 female survivors of sexual violence aged 15 and older in Kenya and Jordan. Exploratory factor analysis was used to assess the underlying latent structure, and Item Response Theory was used to estimate item difficulty and discrimination parameters to guide efforts to shorten the scales. Differential item functioning (DIF) by site was assessed using Multiple Indicators, Multiple Causes models. Construct validity of the sexual violence stigma scales was assessed by estimating correlations with functional impairment, depression, and disability. RESULTS: The sexual violence stigma measure exhibited distinct factor structures among Somali and Syrian GBV survivors. Among Somali survivors, a two-factor model with separate felt (10 items) and enacted (4 items) stigma constructs was identified, with scales for both domains exhibiting good internal consistency (Cronbach's alpha = 0.93 and 0.88, respectively). In Jordan, a single factor solution was uncovered for a 15-item stigma scale with good internal consistency (alpha = 0.86). The shortened core sexual stigma scale consisting of the 4 items that did not exhibit DIF had a Cronbach's alpha of 0.82 in Kenya and 0.81 in Jordan. The felt stigma scale in Kenya, the full stigma scale in Jordan, and abbreviated core stigma scales in both countries were meaningfully correlated with depression, while correlations with functional impairment were weaker and inconsistent across scales. CONCLUSIONS: An abbreviated core set of invariant perceived and internalized sexual violence stigma items demonstrated evidence of construct validity in two diverse settings. The ability of this measure to be efficiently administered as a part of routine program monitoring and evaluation activities, with the potential addition of items from a measurement bank to improve contextual relevance, can facilitate improvements in the delivery and quality of gender-based violence programs in humanitarian emergencies.