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BACKGROUND: Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates how cultural notions of "respected personhood" (or "what matters most") influence manifestations of HIV-related stigma and cancer stigma in Hanoi, Vietnam. METHODS: Thirty in-depth interviews were conducted with people living with HIV in Hanoi, Vietnam. Transcripts were thematically coded via a directed content analysis using the What Matters Most conceptual framework. Coding was done individually and discussed in pairs, and any discrepancies were reconciled in full-team meetings. RESULTS: Analyses elucidated that having chu tín-a value reflecting social involvement, conscientiousness, and trustworthiness-and being successful (eg, in career, academics, or one's personal life) are characteristics of respected people in this local cultural context. Living with HIV and having cancer were seen as stigmatized and interfering with these values and capabilities. Intersectional stigma toward having both conditions was seen to interplay with these values in some ways that had distinctions compared with stigma toward either condition alone. Participants also articulated how cultural values like chu tín are broadly protective against stigmatization and how getting treatment and maintaining employment can help individuals resist stigmatization's most acute impacts. CONCLUSIONS: HIV-related and cancer stigma each interfere with important cultural values and capabilities in Vietnam. Understanding these cultural manifestations of these stigmas separately and intersectionally can allow for greater ability to measure and respond to these stigmas through culturally tailored intervention.
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Infecções por HIV , Neoplasias , Estigma Social , Humanos , Vietnã/epidemiologia , Infecções por HIV/psicologia , Infecções por HIV/epidemiologia , Masculino , Feminino , Neoplasias/psicologia , Neoplasias/terapia , Adulto , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
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.
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Infecções por HIV , Saúde Mental , Resiliência Psicológica , Humanos , Infecções por HIV/psicologia , Infecções por HIV/epidemiologia , Adolescente , Adulto Jovem , Feminino , Masculino , Fatores de Risco , Apoio Social , Necessidades e Demandas de Serviços de Saúde , AdultoRESUMO
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.
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Pessoas Transgênero , Transexualidade , Humanos , Feminino , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Los Angeles , Violência , Comportamento SexualRESUMO
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.
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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.
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Conselheiros , Infecções por HIV , Transtornos Mentais , Humanos , Adolescente , Infecções por HIV/psicologia , Aconselhamento , Resolução de ProblemasRESUMO
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.
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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.
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Infecções por HIV , Estereotipagem , Humanos , Infecções por HIV/psicologia , Botsuana , Estigma Social , HospitaisRESUMO
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.
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Infecções por HIV , Humanos , Adolescente , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Saúde Mental , Estudos Transversais , África Subsaariana/epidemiologia , Continuidade da Assistência ao PacienteRESUMO
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.
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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.
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Infecções por HIV , Botsuana/epidemiologia , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/terapia , Humanos , Projetos Piloto , Gravidez , Estigma SocialRESUMO
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.
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Síndrome da Imunodeficiência Adquirida , Emigrantes e Imigrantes , Infecções por HIV , China , Emigração e Imigração , Humanos , Estigma SocialRESUMO
Objectives. To explore whether beneficial health care policies, when implemented in the context of gender inequality, yield unintended structural consequences that stigmatize and ostracize women with HIV from "what matters most" in local culture. Methods. We conducted 46 in-depth interviews and 5 focus groups (38 individuals) with men and women living with and without HIV in Gaborone, Botswana, in 2017. Results. Cultural imperatives to bear children bring pregnant women into contact with free antenatal services including routine HIV testing, where their HIV status is discovered before their male partners'. National HIV policies have therefore unintentionally reinforced disadvantage among women with HIV, whereby men delay or avoid testing by using their partner's status as a proxy for their own, thus facilitating blame toward women diagnosed with HIV. Gossip then defines these women as "promiscuous" and as violating the essence of womanhood. We identified cultural and structural ways to resist stigma for these women. Conclusions. Necessary HIV testing during antenatal care has inadvertently perpetuated a structural vulnerability that propagates stigma toward women. Individual- and structural-level interventions can address stigma unintentionally reinforced by health care policies.
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Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Complicações Infecciosas na Gravidez/epidemiologia , Complicações Infecciosas na Gravidez/psicologia , Estigma Social , Adulto , Botsuana , Feminino , Infecções por HIV/diagnóstico , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Gravidez , Complicações Infecciosas na Gravidez/diagnóstico , Cuidado Pré-Natal/organização & administração , Pesquisa Qualitativa , Fatores SocioeconômicosRESUMO
Despite a comprehensive national program of free HIV services, men living with HIV in Botswana participate at lower rates and have worse outcomes than women. Directed content analysis of five focus groups (n = 38) and 50 in-depth interviews with men and women with known and unknown HIV status in Gaborone, Botswana in 2017 used the "what matters most" (WMM) and "structural vulnerability" frameworks to examine how the most valued cultural aspects of manhood interact with HIV-related stigma. WMM for manhood in Botswana included fulfilling male responsibilities by being a capable provider and maintaining social status. Being identified with HIV threatened WMM, which fear of employment discrimination could further exacerbate. Our findings indicate how cultural and structural forces interact to worsen or mitigate HIV-related stigma for urban men in Botswana. These threats to manhood deter HIV testing and treatment, but interventions could capitalize on cultural capabilities for manhood to promote stigma resistance.
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Infecções por HIV , Botsuana , Feminino , Grupos Focais , Infecções por HIV/epidemiologia , Humanos , Masculino , Estigma SocialRESUMO
Perceived stigma deters engagement in HIV care and is powerfully shaped by culture. Yet few stigma measures consider how cultural capabilities that signify "full personhood" could be engaged to resist stigma. By applying a theory conceptualizing how culturally-salient mechanisms can worsen or mitigate HIV stigma in relation to "what matters most" (WMM), we developed the WMM Cultural Stigma Scale for Women Living with HIV in Botswana (WMM-WLHIV-BW) and psychometrically evaluated it among 201 respondents with known and unknown HIV status. The two subscales, Cultural Factors Shape Stigma (CFSS) and Cultural Capabilities Protect against Stigma (CCPS) were reliable (both [Formula: see text]). Among WLHIV, the CFSS Subscale showed initial construct validity with depressive symptoms (r = .39, p = .005), similar to an established HIV stigma scale, whereas the CCPS Subscale showed initial construct validity with self-esteem (r = .32, p = .026) and social support number (r = .29, p = .047), suggesting that achieving local cultural capabilities mitigates stigma and is linked with positive psychosocial outcomes. This culturally-derived scale could help WLHIV in Botswana experience improved stigma-related outcomes.
RESUMEN: El estigma percibido detetiza la participación en la atención de VIH y está fuertemente moldeado por la cultura. Sin embargo, pocas medidas de estigma consideran cómo las capacidades culturales que significan "personalidad plena" podrían ser utilizadas para resistir el estigma. Mediante la aplicación de una teoría que conceptualiza cómo los mecanismos culturalmente destacados pueden empeorar o mitigar el estigma del VIH en relación con "lo que más importa" (WMM), desarrollamos la Escala de Estigma Cultural WMM para mujeres que viven con VIH en Botswana (WMM-WLHIV-BW) y lo evaluamos psicométricamente entre 201 encuestados con estatus de VIH conocido y desconocido. Las dos subescalas, Factores Culturales dan Forma al Estigma (CFSS) y la protección de las Capacidades Culturales contra el Estigma (CCPS) eran fiables (ambos α = 0.90). Entre WLHIV, la subescala CFSS mostró la validez inicial de la construcción con síntomas depresivos (r = .39, p =.005), similar a una escala establecida de estigma del VIH, mientras que la subescala CCPS mostró la validez de la construcción inicial con autoestima (r = .32, p = .026) y el numero de apoyo social (r = .29, p = .047), lo que sugiere que lograr capacidades culturales locales mitiga el estigma y esta asociado con resultados psicosociales positivos. Esta escala culturalmente derivada podría ayudar a WLHIV en Bostwana a mejorar los resultados relacionados con el estigma.
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Infecções por HIV , Psicometria , Estigma Social , Botsuana/epidemiologia , Feminino , Humanos , Reprodutibilidade dos Testes , Apoio Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: With high rates of HIV and multiple vulnerable subgroups across diverse settings, there is a need for culturally based, HIV stigma reduction interventions. Pregnant women who are living with HIV are especially in need of services to protect not only their own but also their children's lives. Uptake of HIV services worldwide is hindered by stigma towards persons living with HIV/AIDS. While cultural context plays a key role in shaping HIV stigma, these insights have not yet been fully integrated into stigma reduction strategies. By utilizing the "What Matters Most" stigma framework, we propose that an intervention to counter culturally salient aspects of HIV stigma will improve treatment adherence and other relevant outcomes. A pragmatic clinical trial in Botswana will evaluate the "Mothers Moving towards Empowerment" (MME) intervention, which seeks to address HIV stigma in Botswana and to specifically engage pregnant mothers so as to promote antiretroviral therapy (ART) adherence in the postpartum period. METHODS: This study will test MME against treatment as usual (TAU) among pregnant mothers diagnosed with HIV and their infants. Outcomes will be assessed during pregnancy and 16 weeks postpartum. Women who meet eligibility criteria are assigned to MME or TAU. Women assigned to MME are grouped with others with similar estimated delivery dates, completing up to eight intervention group sessions scheduled before week 36 of their pregnancies. Primary outcomes among mothers include (i) reducing self-stigma, which is hypothesized to mediate improvements in (ii) psychological outcomes (quality of life, depression and social functioning), and (iii) adherence to antenatal care and ART. We will also examine a set of follow-up infant birth outcomes (APGAR score, preterm delivery, mortality (at < 16 weeks), birth weight, vaccination record, and HIV status). DISCUSSION: Our trial will evaluate MME, a culturally based HIV stigma reduction intervention using the "What Matters Most" framework, to reduce stigma and improve treatment adherence among pregnant women and their infants. This study will help inform further refinement of MME and preparation for a future large-scale, multisite, randomized controlled trial (RCT) in Botswana. TRIAL REGISTRATION: ClinicalTrials.gov NCT03698981 . Registered on October 8, 2018.
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Fármacos Anti-HIV , Infecções por HIV , Fármacos Anti-HIV/uso terapêutico , Botsuana , Criança , Feminino , Infecções por HIV/diagnóstico , Infecções por HIV/tratamento farmacológico , Humanos , Lactente , Recém-Nascido , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Mães , Gravidez , Gestantes , Ensaios Clínicos Controlados Aleatórios como Assunto , Cooperação e Adesão ao TratamentoRESUMO
Mental illness is a common comorbidity of HIV and complicates treatment. In Botswana, stigma impedes treatment of mental illness. We examined explanatory beliefs about mental illness, stigma, and interactions between HIV and mental illness among 42 adults, from HIV clinic and community settings, via thematic analysis of interviews. Respondents endorse witchcraft as a predominant causal belief, in addition to drug abuse and effects of HIV. Respondents describe mental illness as occurring "when the trees blossom," underscoring a conceptualization of it as seasonal, chronic, and often incurable and as worse than HIV. Consequently, people experiencing mental illness (PEMI) are stereotyped as dangerous, untrustworthy, and cognitively impaired and discriminated against in the workplace, relationships, and sexually, increasing vulnerability to HIV. Clinical services that address local beliefs and unique vulnerabilities of PEMI to HIV, integration with peer support and traditional healers, and rehabilitation may best address the syndemic by facilitating culturally consistent recovery-oriented care.