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
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.
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. (Am J Public Health. Published online ahead of print June 10, 2021: e1–e9. https://doi.org/10.2105/AJPH.2021.306274 )
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.
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.
Gastrointestinal distress is a prevalent issue in the autism spectrum disorder community, with implications for the person living with autism spectrum disorder and their families. However, the experiences of families caring for a child with co-occurring autism spectrum disorder and gastrointestinal symptoms have not been explored to date. We conducted one-on-one semi-structured interviews with 12 parents of children with co-occurring autism spectrum disorder and gastrointestinal symptoms. Using an inductive analysis approach, drawing on phenomenology, we identified four major themes across interviews. First, parents reported that their child had difficulty verbally communicating the presence of gastrointestinal symptoms, leading parents to rely on bodily signs and non-verbal behaviors to recognize when their child was experiencing gastrointestinal distress (Theme 1). Next, gastrointestinal issues impacted the child’s well-being and the ability to participate in and fully engage in activities (Theme 2), and the family’s well-being (Theme 3). Finally, parents often experienced challenges with seeking accessible and quality healthcare for their child’s gastrointestinal problems (Theme 4). These findings elucidate the incredible toll that gastrointestinal symptoms have on the overall wellness of children with autism spectrum disorder and their families. 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.
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