Stigma Associated with Classical Congenital Adrenal Hyperplasia in Women's Sexual Lives.

The risk of intersex-related stigma often serves as social indication for "corrective" genital surgery, but has not been comprehensively documented. In preparation for the development of an intersex-specific stigma assessment tool, this qualitative project aimed to explore stigma in girls and women with classical congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency. As part of a comprehensive follow-up project, 62 adult women with classical CAH (age range 18-51 years) took part in an open-ended retrospective interview focusing on the impact of CAH and its treatment on various aspects of girls' and women's lives. Deductive qualitative content analysis (Patton, 2014) of de-identified transcripts involved categorization of three types of stigma: experienced, anticipated, and internalized. Two-fifths of the participants reported CAH-related stigma in romantic/sexual situations. Stigma enactment by romantic partners occurred in reaction to both genital and non-genital sex-atypical features of CAH and sometimes included explicit questioning of the women's true gender. Stigma anticipation by the women and their related avoidance of nudity, genital exposure, and romantic involvement altogether were frequent. Internalization of stigma occurred as well. In conclusion, the data suggest that many women with CAH experience, anticipate, and/or internalize intersex-related stigma in the context of their romantic/sexual lives.

Syndrome-Related Stigma in the General Social Environment as Reported by Women with Classical Congenital Adrenal Hyperplasia.

Stigma defined as "undesired differentness" (Goffman, 1963) and subtyped as "experienced" or "enacted," "anticipated," and "internalized" has been documented for patients with diverse chronic diseases. However, no systematic data exist on the association of stigma with somatic intersexuality. The current report concerns women with classical congenital adrenal hyperplasia (CAH), the most prevalent intersex syndrome, and provides descriptive data on CAH-related stigma as experienced in the general social environment (excluding medical settings and romantic/sexual partners) during childhood, adolescence, and adulthood. A total of 62 adult women with classical CAH [41 with the salt-wasting (SW) variant and 21 with the simple-virilizing (SV) variant] underwent a qualitative retrospective interview, which focused on the impact of CAH and its medical treatment on many aspects of women's lives. Deductive content analysis was performed on the transcribed texts. The women's accounts of CAH-related stigma were identified and excerpted as vignettes, and the vignettes categorized according to social context, stigma type, and the associated features of the CAH condition. Nearly two-thirds of women with either variant of CAH provided stigma vignettes. The vignettes included all three stigma types, and most involved some somatic or behavioral feature related to sex or gender. Stigma situations were reported for all ages and all social contexts of everyday life: family, peers, colleagues at work, strangers, and the media. We conclude that there is a need for systematic documentation of stigma in intersexuality as a basis for the development of improved approaches to prevention and intervention.

Behavioral and neurobiological effects of GnRH agonist treatment in mice-potential implications for puberty suppression in transgender individuals.

In the United States, ~1.4 million individuals identify as transgender. Many transgender adolescents experience gender dysphoria related to incongruence between their gender identity and sex assigned at birth. This dysphoria may worsen as puberty progresses. Puberty suppression by gonadotropin-releasing hormone agonists (GnRHa), such as leuprolide, can help alleviate gender dysphoria and provide additional time before irreversible changes in secondary sex characteristics may be initiated through feminizing or masculinizing hormone therapy congruent with the adolescent's gender experience. However, the effects of GnRH agonists on brain function and mental health are not well understood. Here, we investigated the effects of leuprolide on reproductive function, social and affective behavior, cognition, and brain activity in a rodent model. Six-week-old male and female C57BL/6J mice were injected daily with saline or leuprolide (20 µg) for 6 weeks and tested in several behavioral assays. We found that leuprolide increases hyperlocomotion, changes social preference, and increases neuroendocrine stress responses in male mice, while the same treatment increases hyponeophagia and despair-like behavior in females. Neuronal hyperactivity was found in the dentate gyrus (DG) of leuprolide-treated females, but not males, consistent with the elevation in hyponeophagia and despair-like behavior in females. These data show for the first time that GnRH agonist treatment after puberty onset exerts sex-specific effects on social- and affective behavior, stress regulation, and neural activity. Investigating the behavioral and neurobiological effects of GnRH agonists in mice will be important to better guide the investigation of potential consequences of this treatment for youth experiencing gender dysphoria.

A review of HIV/AIDS system-level interventions.

The escalating HIV/AIDS epidemic worldwide demands that on-going prevention efforts be strengthened, disseminated, and scaled-up. System-level interventions refer to programs aiming to improve the functioning of an agency as well as the delivery of its services to the community. System-level interventions are a promising approach to HIV/AIDS prevention because they focus on (a) improving the agency's ability to adopt evidence-based HIV prevention and care programs; (b) develop and establish policies and procedures that maximize the sustainability of on-going prevention and care efforts; and (c) improve decision-making processes such as incorporating the needs of communities into their tailored services. We reviewed studies focusing on system-level interventions by searching multiple electronic abstracting indices, including PsycInfo, PubMed, and ProQuest. Twenty-three studies out of 624 peer-reviewed studies (published from January 1985 to February 2007) met study criteria. Most of the studies focused on strengthening agency infrastructure, while other studies included collaborative partnerships and technical assistance programs. Our findings suggest that system-level interventions are promising in strengthening HIV/AIDS prevention and treatment efforts. Based on our findings, we propose recommendations for future work in developing and evaluating system-level interventions.

Lack of understanding of acute HIV infection among newly-infected persons-implications for prevention and public health: The NIMH Multisite Acute HIV Infection Study: II.

Acute/early HIV infection is a period of high HIV transmission. Consequently, early detection of HIV infection and targeted HIV prevention could prevent a significant proportion of new transmissions. As part of an NIMH-funded multisite study, we used in-depth interviews to explore understandings of acute HIV infection (AHI) among 34 individuals diagnosed with acute/early HIV infection in six US cities. We found a marked lack of awareness of AHI-related acute retroviral symptoms and a lack of clarity about AHI testing methods. Most participants knew little about the meaning and/or consequences of AHI, particularly that it is a period of elevated infectiousness. Over time and after the acute stage of infection, many participants acquired understanding of AHI from varied sources, including the Internet, HIV-infected friends, and health clinic employees. There is a need to promote targeted education about AHI to reduce the rapid spread of HIV associated with acute/early infection within communities at risk for HIV.

Perceptions of adolescents' sexual behavior among mothers living with and without HIV: does dyadic sex communication matter?

Previous studies suggest that mothers can help adolescents make responsible sexual decisions by talking with them about sexual health. Yet, it is not clear how and when mothers make decisions about talking with their adolescents about sex. We sought to determine: (1) the accuracy of mothers' and adolescents' predictions of adolescents' age of sexual debut; and (2) if mothers' beliefs about their adolescents' sexual behavior affected the frequency of mother-adolescent communication about sexual topics and, in turn, if mother-adolescent communication about sexual topics affected mothers' accuracy in predicting adolescents' current and future sexual behavior. Participants were 129 urban, ethnic minority HIV-negative youth (52% male and 48% female; ages 10-14 years at baseline; ages 13-19 years at follow-up) and their mothers; 47% of mothers were HIV-positive. Most mothers and adolescents predicted poorly when adolescents would sexually debut. At baseline, mothers' communication with their early adolescents about sexual topics was not significantly associated with mothers' assessments of their early adolescents' future sexual behavior. At follow-up, mothers were more likely to talk with their adolescents about HIV prevention and birth control if they believed that their adolescents had sexually debuted, though these effects were attenuated by baseline levels of communication. Only one effect was found for adolescents' gender: mothers reported greater communication about sex with daughters. Studies are needed to determine how mothers make decisions about talking with their adolescents about sex, as well as to examine to what extent and in what instances mothers can reduce their adolescents' sexual risk behavior by providing comprehensive, developmentally appropriate sex education well before adolescents are likely to debut.

Influence of coping, social support, and depression on subjective health status among HIV-positive adults with different sexual identities.

The authors examined associations between psychosocial variables (coping self-efficacy, social support, and cognitive depression) and subjective health status among a large national sample (N = 3,670) of human immunodeficiency virus (HIV)-positive persons with different sexual identities. After controlling for ethnicity, heterosexual men reported fewer symptoms than did either bisexual or gay men and heterosexual women reported fewer symptoms than did bisexual women. Heterosexual and bisexual women reported greater symptom intrusiveness than did heterosexual or gay men. Coping self-efficacy and cognitive depression independently explained symptom reports and symptom intrusiveness for heterosexual, gay, and bisexual men. Coping self-efficacy and cognitive depression explained symptom intrusiveness among heterosexual women. Cognitive depression significantly contributed to the number of symptom reports for heterosexual and bisexual women and to symptom intrusiveness for lesbian and bisexual women. Individuals likely experience HIV differently on the basis of sociocultural realities associated with sexual identity. Further, symptom intrusiveness may be a more sensitive measure of subjective health status for these groups.

Predictors of attrition among high risk HIV-infected participants enrolled in a multi-site prevention trial.

Retaining high-risk individuals is critical for HIV prevention trials. The current analyses examined predictors of trial dropout among HIV-infected men and women in a multi-site HIV prevention trial. Results indicated that dropouts (n = 74) were more likely to be younger, depressed, and not taking antiretroviral therapy (ART) than those who continued (n = 815). No other background, substance use, or transmission risk differences were found, suggesting no direct evidence of dropout bias on key outcomes. Efforts may be warranted for early detection and treatment of depression and for improving retention of younger participants and those not on ART.

Going beyond "ABC" to include "GEM": critical reflections on progress in the HIV/AIDS epidemic.

A considerable number of studies have sought to identify what factors accounted for substantial reductions in HIV seroprevalence after several countries deployed "ABC" (abstinence, be faithful, condom use) strategies. After much public discourse and research on ABC success stories, the Joint United Nations Programme on HIV/AIDS 2004 epidemic report indicated that nearly 50% of infected people worldwide were women, up from 35% in 1985. In light of the feminization of HIV/AIDS, we critically assess the limitations of ABC strategies. We provide 3 additional prevention strategies that focus on gender relations, economics, and migration (GEM) and can speak to the new face of the epidemic. Pressing beyond ABC, GEM strategies provide the basis for a stronger central platform from which national efforts against HIV/AIDS can proceed to reduce transmission risks.

Gay father surrogacy families: relationships with surrogates and egg donors and parental disclosure of children's origins.

OBJECTIVE: To study the nature and quality of relationships between gay father families and their surrogates and egg donors and parental disclosure of children's origins. DESIGN: Cross-sectional study. SETTING: Family homes. PATIENT(S): Parents in 40 gay father families with 3-9-year-old children born through surrogacy. INTERVENTION(S): Administration of a semistructured interview. MAIN OUTCOME MEASURE(S): Relationships between parents, children, surrogates, and egg donors and parental disclosure of children's origins were examined using a semistructured interview. RESULT(S): The majority of fathers were content with the level of contact they had with the surrogate, with those who were discontent wanting more contact. Fathers were more likely to maintain relationships with surrogates than egg donors, and almost all families had started the process of talking to their children about their origins, with the level of detail and children's understanding increasing with the age of the child. CONCLUSION(S): In gay father surrogacy families with young children, relationships between parents, children, surrogates, and egg donors are generally positive.

The Healthy Living Project: an individually tailored, multidimensional intervention for HIV-infected persons.

The NIMH Healthy Living Project (HLP), a randomized behavioral intervention trial for people living with HIV, enrolled 943 individuals, including women, heterosexual men, injection drug users, and men who have sex with men from Los Angeles, Milwaukee, New York, and San Francisco. The intervention, which is based on qualitative formative research and Ewart's Social Action Theory, addresses three interrelated aspects of living with HIV: stress and coping, transmission risk behavior, and medication adherence. Fifteen 90-minute structured sessions, divided into 3 modules of five sessions each, are delivered to individuals. Sessions are tailored to individuals within a structure that uses role-plays, problem solving, and goal setting techniques. A 'Life Project'--or overarching goal related to personal striving-provides continuity throughout sessions. Because this is an ongoing project with efficacy yet to be established, we do not report intervention outcomes. However, the intervention was designed to be useful for prevention case management, settings where repeated one-on-one contact is possible, and where a structured but highly individualized intervention approach is desired.

"Throwing the dice": pregnancy decision-making among HIV-positive women in four U.S. cities.

CONTEXT: Although AIDS-related deaths among U.S. women have decreased, the number of HIV-positive women, especially of reproductive age, has increased. A better understanding of the interaction between HIV and family planning is needed, especially as antiretroviral medications allow HIV-positive women to live longer, healthier lives. METHODS: Qualitative methods were used to examine pregnancy decision-making among 56 HIV-positive women in four U.S. cities. Biomedical, individual and sociocultural themes were analyzed in groups of women, categorized by their pregnancy experiences and intentions. RESULTS: Regardless of women's pregnancy experiences or intentions, reproductive decision-making themes included the perceived risk of vertical transmission, which was often overestimated; beliefs about vertical transmission risk reduction strategies; desire for motherhood; stigma; religious values; attitudes of partners and health care providers; and the impact of the mother's health and longevity on the child. Most women who did not want children after their diagnosis cited vertical transmission risk as the reason, and most of these women already had children. Those who became pregnant or desired children after their diagnosis seemed more confident in the efficacy of risk reduction strategies and often did not already have children. CONCLUSIONS: Future studies may help clarify the relationship between factors that influence pregnancy decision-making among HIV-positive women. HIV-positive and at-risk women of childbearing age may benefit from counseling interventions sensitive to factors that influence infected women's pregnancy decisions.

Beyond the male condom: the evolution of gender-specific HIV interventions for women.

As the number of HIV infections in women has increased, there has been a concomitant recognition that prevention efforts to reduce sexual transmission must address the gendered context in which risk behavior occurs. This paper provides a longitudinal perspective on the emergence of the HIV epidemic in U.S. women and the parallel development of interventions to reduce risk. In the first portion of this paper, we briefly discuss the growth of the epidemic among women and how public health responses reflected the early discourse about infected women. We also address methods of protection available to women, and the emerging recognition of the importance of gender relations. In the second half of this paper, we show how gender-specificity in prevention efforts has evolved, using a framework developed by Geeta Gupta (2001) and relying on published reviews of the intervention literature in the past 10 years. Finally, we discuss in detail several recent examples. We conclude with a discussion of future directions.

Gender, empowerment, and health: what is it? How does it work?

As the HIV/AIDS epidemic has progressed, the role of gender inequality in its transmission has become increasingly apparent. Nearly half of those living with the virus worldwide are women, and women's subordination to men increases their risk of infection and makes it harder for them to access treatment once infected. Men, too, suffer from harmful gender norms-the expectation that they will behave in ways that heighten their risk of HIV infection and that they will be cavalier about seeking health care increases their vulnerability to the disease. In the Middle East and North Africa, HIV infection rates are low, but changing gender norms have the potential to accelerate the spread of the disease if gender inequality is not addressed. Improving women's education, workforce participation, and social and political opportunities is crucial to strengthening health in the region. Work with men to shift gender imbalances is a further important task for the region's policy-makers and civil society groups.

Leadership development and HIV/AIDS.

Leadership development among all sectors addressing HIV/AIDS has come to be recognized as a critically important endeavor as the HIV pandemic moves into its fourth decade. Globally, there is a tremendous need for well-trained leaders in healthcare, research, policy, programme management, activism and advocacy, especially in countries and settings with high HIV prevalence and limited human resource capacity. This article examines the growing need for HIV/AIDS leadership development, and describes and assesses a number of current initiatives that focus on leadership development in a variety of populations and settings. A series of recommendations are provided to expand the scope and impact of leadership development activities; recommendations are primarily targeted towards foundations and other funders and leadership development programme managers.

Sexual scripts of women: a longitudinal analysis of participants in a gender-specific HIV/STD prevention intervention.

Project FIO (The Future Is Ours) was a three arm randomized controlled HIV prevention intervention trial carried out with heterosexually-active women in a high seroprevalence area of New York City. The trial was effective and women in the eight-session intervention arm were significantly more likely to report decreased unsafe sex or no unsafe sex compared to controls at one month and one year post-intervention. The current investigation was a qualitative analysis of women's sexual scripts at baseline and one year follow-up for a randomly selected subsample of participants in Project FIO. We examined the domains of sexual initiation, pace setting, sexual decision-making, communication about sexual needs, and the timing of condom introductions in the experimental and control arms at baseline and one year follow-up. At one year follow-up, among both the experimental and control arms, results showed changes away from male-dominated and toward female-dominated sexual initiation and sexual decision-making. Among both the experimental and control arms, results also showed that trial participants shifted from a late condom introduction (right before intercourse) toward much earlier mention of condoms (e.g. during a date). The fact that shifts in sexual scripts at one year follow-up occurred in both groups is likely reflective of the degree to which a lengthy assessment interview facilitated comfort with discussing and imagining new sexual behaviors, even for control group participants who did not receive the intervention. The value of empirically assessing sexual scripts in HIV/AIDS prevention and doing so longitudinally is assessed in light of the goals of HIV prevention interventions.

Medication adherence and sexual risk behavior among HIV-infected adults: implications for transmission of resistant virus.

As more people are living long-term with HIV there are growing concerns about specific behaviors that can affect both personal and the public health. This study examined the relationship between antiretroviral therapy (ART) adherence and sexual risk behavior and their association with psychosocial and health factors among a diverse sample of 2,849 HIV-infected adults. Only 8.5% of the sample reported both non-adherence and sexual risk. Individuals were 46% more likely to report one of these risk outcomes when the other one was present and the presence of both outcomes was associated with an increased likelihood of having a detectable viral load. A simultaneous polytomous regression analysis revealed complex relationships among a range of psychosocial variables and the two primary behavioral risk outcomes. There is a need for targeted interventions and integration of mental health and substance use services into primary HIV care settings.

Gender development in women with congenital adrenal hyperplasia as a function of disorder severity.

Prenatal-onset classical congenital adrenal hyperplasia (CAH) in 46,XX individuals is associated with variable masculinization/defeminization of the genitalia and of behavior, presumably both due to excess prenatal androgen production. The purpose of the current study was threefold: (1) to extend the gender-behavioral investigation to the mildest subtype of 46,XX CAH, the non-classical (NC) variant, (2) to replicate previous findings on moderate and severe variants of 46,XX CAH using a battery of diversely constructed assessment instruments, and (3) to evaluate the utility of the chosen assessment instruments for this area of work. We studied 63 women with classical CAH (42 with the salt wasting [SW] and 21 with the simple virilizing [SV] variant), 82 women with the NC variant, and 24 related non-CAH sisters and female cousins as controls (COS). NC women showed a few signs of gender shifts in the expected direction, SV women were intermediate, and SW women most severely affected. In terms of gender identity, two SW women were gender-dysphoric, and a third had changed to male in adulthood. All others identified as women. We conclude that behavioral masculinization/defeminization is pronounced in SW-CAH women, slight but still clearly demonstrable in SV women, and probable, but still in need of replication in NC women. There continues a need for improved instruments for gender assessment.