Women and HIV: A Discourse of Necessary Interventions
by Melissa Fulgieri
Millions of dollars each year are spent developing resources for gay men living with HIV/AIDS in urban areas, especially New York City. One such resource is The Center for Health, Identity, Behavior, and Prevention Studies at New York University, where Dr. Perry Halkitis is conducting a three-year longitudinal study called Project 18. I work as a research assistant on Project 18, assessing how sexual behavior and drug use affect HIV transmission for a group of young gay men as they transition into adulthood. Given that my work on Dr. Halkitis’ research project focuses exclusively on gay men, I have grown increasingly aware that the resources accessible at Project 18 are not as readily available to women in urban areas who are also engaging in the high-risk behavior that could lead to the contraction of the virus. Those resources that are available for this demographic seem to be divided between either prevention or intervention based efforts. Prevention efforts are geared towards women who are engaging in high-risk behavior leading to HIV contraction, while intervention based efforts are focused on tackling the daily and ongoing issues that plague HIV positive women. After considerable research, it has come to my attention that while these two different efforts overlap in some cases, there are still major discrepancies between the two programs that fail to decrease the rate at which women are testing positive. In constructing this literature review, I hope to examine the resources available to women both suffering from and at risk of contracting HIV/AIDS.
Although once considered exclusively a “gay man’s disease,” HIV/AIDS is an epidemic no longer affecting only homosexual men and it would be a disservice to overlook the virus’ affect on other populations, especially women. Although early research focuses solely on HIV contraction for gay men and intravenous drug users, studies are now examining HIV transmission among heterosexual individuals due to the increase in rates of HIV infection for this population (e.g., Carey et al., 2000; Crepaz et al., 2009; Hobofoll, Jackson, Lavin, Britton, & Shepherd, 1994). In fact, AIDS is now the leading cause of death among women between the ages of 15 and 44 worldwide. Today in the United States, approximately 51,953 women are living with HIV/AIDS and women account for more than one in four new HIV/AIDS diagnoses and deaths caused by AIDS (WHO, UNAIDS, & UNICEF, 2009). Statistics from the last 10 years have confirmed that New York City continually reports the highest numbers of females suffering from AIDS by city and state (Carey, 1997; WHO, UNAIDS, & UNICEF, 2009). In order to assess the country’s response to this prevalence of transmission, it is imperative to explore the services that are available for high-risk women in urban areas. Furthermore, past research illustrates that there is a clear divide between preventative interventions available for women in urban areas engaging in HIV-associated high-risk behaviors and interventions for HIV positive women from urban areas already living with HIV in urban areas. In this literature review, I will explore the differences among interventions offered to HIV positive women and prevention measures for women at high risk for HIV. I will consider what still needs to be done to merge these discrepant efforts in order to not only reduce the rate of transmission for women in urban areas but continue to promote the well-being of those women already living with the virus.
Interventions for Women Living with HIV/AIDS
Although there continue to be efforts put forth towards preventing the risk of HIV transmission of women in urban areas, there are also interventions geared towards helping women who have already been infected with the virus and are battling with the various issues that coincide with HIV/AIDS contraction. Most major interventions focus on socioeconomic and psychological factors such as past or current history of trauma and drug abuse which relate to a woman’s contraction of the HIV/AIDS virus, as well as how such variables affect their quality of life (Gielen et al., 2000; Gielen, McDonnell, Wu, O’Campo, & Faden, 2001; Simoni, Frick, & Huang, 2006, Simoni & Ng, 2000).
Quality of life may be defined as encompassing “multiple aspects of life satisfaction such as: role functioning, self-esteem, spiritual fulfillment, a sense of control over one’s environment” (Gielen et al., 2001, p. 315). This theoretical framework succinctly summarizes the interpersonal, psychological factors that affect one’s sense of well-being. Despite the progressively higher rates of transmission in women, few published studies address their quality of life after contraction of the virus. However, it is extremely important to assess the quality of life of women after becoming HIV positive, as women generally report more psychological distress than men after contraction (Kennedy et al., 1995). Such distress can have negative consequences including decrease in self- esteem, onset of suicidal ideation, and lack of motivation in daily life and activities.
Most often interventions implemented in New York City assess the quality of life of women with HIV/AIDS through focus groups that help women cultivate skills to create and maintain social support networks (Gielen et al., 2001). Such interventions have demonstrated that HIV positive women report more positive quality of life and mental health when they have larger support networks. Furthermore, women who practice more self-care behaviors such as healthy dieting, adequate sleep and stress management report better physical and mental health and overall quality of life (Gielen et al., 2001). Such interventions have implications for the idea that maintaining both a psychologically and physically healthy lifestyle can have positive effects for HIV positive women.
Limitations persist in spite of interventions’ various enriching effects on the quality of life of HIV positive women living in urban areas. Despite the fact that the number and severity of HIV- related symptoms and HIV/AIDS status are strong predictors of a person’s perceived quality of life, recent interventions should assess other components of life that could affect a woman’s experience living with HIV/AIDS. For example, interventions that focus on the quality of life of women living with HIV/AIDS should also examine past or current trauma including physical and sexual abuse in childhood or adulthood (Gielen et al., 2000; Gielen et al., 2001; Simoni & Cooperman, 2000; Simoni & Ng, 2000). In Simoni’s and Cooperman’s (2000) study of trauma and HIV in New York City women, results revealed a high prevalence of abuse in childhood (50%) and adulthood (68%); 7% had been raped or physically assaulted in the last 90 days. This study was replicated by Simoni (2006), who found that 5% of women with HIV in New York City were sexually abused and 69% were physically abused at some point in their lives. In these studies, trauma is associated with lower self-esteem and increased rates of anxiety, depression, suicide, sexual difficulties and interpersonal problems. In fact, physical and sexual abuse within childhood lowers the likelihood that women are able to adopt adaptive and avoidant coping strategies in their current situations, resulting in symptoms of depression (Simoni & Cooperman, 2000). Past abuse therefore plays an important role in the global well-being of women living with HIV and should be considered an important piece to address in intervention efforts.
Women should be provided with the opportunity to be holistically treated, addressing any past trauma, which may augment their feelings of depression and anxiety associated with contracting HIV (Simoni & Cooperman, 2000). Research has shown that assessing past and/or current trauma is significantly associated with improving the psychological functioning of women living with HIV/AIDS in urban areas. Furthermore, it has been found that revealing past traumatic experiences has proven to be therapeutic for those participating in interventions, as speaking out about difficult life experiences gives women more control over their current situation (Simoni & Cooperman, 2000; Simoni et al., 2006). The implementation of a component to address trauma in interventions may serve to improve the well-being of HIV positive women. Additionally, based on social support research, providing women with opportunities to create lasting relationships and meaningful connections with others may be a specifically viable resource in treating women living with HIV as a result of abuse.
Prevention Measures for Women Engaging in High Risk Behavior
HIV-preventative services provided in urban areas focus mainly on cultivating behavioral risk reduction skills (Carey et al., 1997; Crepaz et al., 2009) and are geared towards reducing the rate of HIV transmission among women. Such prevention measures are necessary because it is not beneficial solely to educate women on the ways of contracting the virus, but also to provide them with supplementary training in developing behavioral skills and tactics (Carey et al., 1997). Behavioral risk reduction measures are implemented in order to decrease high-risk behaviors - such as engaging in sex without a condom or with an intravenous drug user, engaging in intravenous drug use, and having sex with multiple partners - that are found to reduce the rate of transmission among women in urban settings. Specific behavioral skills developed during these prevention sessions help to decrease the prevalence of high risk behavior as women learn practice how to use male condoms correctly and role-play negotiating safer sex practices with a partner (Crepaz et al., 2009). Other behavioral sessions examine risk reduction problem solving, assertiveness in sexual situations, self- management, and peer support (Holtgrave & Kelly, 1996). Behavioral training designed and implemented exclusively for women is necessary because women have been found to generally lack control over condom use, either because they have less power in relationships or because their impoverished status can increase the risk of financial and emotional dependency on men (Wingood & DiClemente, 2000).
Analysis of these preventative measures found that by decreasing high-risk behavior, safer sex practices like condom usage and negotiation with partners regarding safer sex practices, reduction of STI rates, significantly increased (Crepaz et al., 2009; Hobfoll et al., 1994; Holtgrave et al., 1996; Kelly et al., 1994). Yet, results from these studies cannot always generalize to other populations, such as low income women who reside in rural areas or women from other socioeconomic statuses who engage in high risk behavior (Crepaz et al., 2009). Furthermore, there may be external factors contributing to behavior change that are independent of these prevention measures. For example, social disadvantage and competing life stressors due to unemployment and relationships with high-risk men are external factors that are also associated with a woman’s tendency to engage in high-risk behaviors, and may have had an effect on the efficiency of the prevention program (Kelly et al., 1994). Prevention efforts should work within such contextual limitations in order to better gear programs for those who need them most.
In addition to developing behavior risk reduction skills, past literature demonstrates the promise in adding a motivational component to prevention measures to greatly reduce the prevalence of high-risk behaviors of inner city women (Carey et al., 2000; Carey et al., 1997). A motivational component such as assessing one’s risk perceptions of HIV transmission, for example, calls women to reflect on the impact of their past decisions and preferences in order to think more critically about their current decisions and preferences. Motivational constructs are vital for changing behavior because when only behavioral training is implemented, women develop the skills to change behavior but may continue to lack the motivation to do so (Carey et al., 2000). Perceptual motivation training is especially necessary because those that engage in high-risk behaviors are found to underestimate their own vulnerability towards contraction of the virus. Many women do not believe that they will contract HIV nor do they think that engaging in risk reduction behaviors is socially normal or acceptable (Carey et al., 2000). Furthermore, evidence shows that many of these women do not regard the threat of HIV transmission as a daily problem (Carey et al., 1997). Adding a motivational component to behavioral risk reduction interventions therefore serves to enhance knowledge of transmission, lead to greater refusal of unprotected sex, increases communication between sexual partners, and provides daily reinforcement for traditional behavioral prevention tactics (Carey et al., 2000). Such enhancements imply the necessity for a motivational component in prevention efforts, especially because adding the motivational piece allows individuals with low interest in changing their behavior skills to understand the relevance of risk reduction to their life goals (Carey et al., 2000). Moreover, clients are more committed to a behavior change that they feel is their own decision, which suggests that resistance to changes in behavior would decrease with a motivational component which allows clients a say in their own goals.
Comparing the Tactics of Intervention and Prevention Programs
After examining both the prevention efforts for women who engage in high-risk behaviors that lead to HIV/AIDS in urban areas and the interventions for women already living with HIV/AIDS in urban areas, it is apparent that the topics covered in each type of program differ widely. HIV prevention measures seem to focus solely on educating those at risk about the virus itself and cultivating skills and tactics towards resisting contraction (Carey et al., 1997; Carey et al., 2000; Crepaz et al., 2009; Hobofall et al., 1994). On the other hand, HIV interventions for HIV positive women focus on assessing the well- being, quality of life, and past significant experiences, such as abuse and trauma, that potentially contributed to a woman’s contraction of HIV. There is little focus on traumatic or abusive experiences in prevention efforts for those at risk of contracting HIV, despite the fact that Wyatt et al. (2002) assert that “women who report early and chronic sexual abuse have a 7-fold increase in HIV-related risk behaviors” (p. 4) and that such childhood sexual abuse and HIV-related risks in adulthood have been well documented. Furthermore, very few high-risk prevention studies emphasize other factors that affect HIV risk, like socio-ecological, cultural, and mental health components, even though these components are so prevalent in the interventions for HIV positive women (Crepaz et al., 2009). Additionally, including a discussion of participants’ sexual history in an intervention has been found to help reduce HIV contraction (Wyatt et al., 2002). Although behavioral and motivational prevention regiments have proven to greatly decrease high- risk behaviors, they are still unable to significantly enhance risk perceptions, reduce women’s number of sexual partners, assess quality of life or get to the underlying causes of what possesses women to engage in high-risk behaviors (Carey et al., 2000). Clearly, past and current assessments of psychological well-being, sexual abuse and trauma, and sexual history that are used in interventions for HIV positive women would be useful in prevention measures for women who engage in high-risk behavior.
Considering Drug Use in Intervention and Prevention Efforts
In the United States, a large amount of women acquire HIV through the high-risk behavior of intravenous drug use. This type of behavior is much more prevalent in women than in men when contracting HIV (Wingood & DiClemente, 2000). Other drugs, including crack cocaine and alcohol, have also been found to increase a women’s vulnerability to HIV/AIDS. However, none of the prevention or intervention measures described in the literature include assessments of a woman’s history of drug and/or alcohol abuse. The aforementioned interventions for women who engage in high-risk behavior provide training for skills to decrease these behaviors, yet the history or the dependency to this specific high-risk behavior has never been assessed. The use of alcohol and drugs are believed to be sexual disinhibitors that may place a woman at risk for HIV through unsafe sex. In fact, women who engage in drug and alcohol use may be more likely to engage in other high risk sexual behaviors (Wingood & DiClemente, 2000). Due to this connection, it may be useful to include a drug and alcohol usage and/or dependency assessment in both intervention and prevention efforts in order to determine the presence of these high-risk behaviors what can be done to decrease them. By assessing past and current drug and alcohol usage in women who are already HIV positive, we can examine these women’s history of drug or alcohol dependency and determine if that truly relates to their contraction of the virus.
Merging Preventative and Interventional Tactics to Reduce Transmission
Prevention efforts for women who engage in high-risk behaviors that lead to HIV/AIDS are missing significant components that are needed to effectively reduce risk behaviors of all kinds and shed light on the causes of high-risk behavior. Only one study of HIV prevention measures seems to address these causes by incorporating women’s accounts of childhood sexual abuse into their prevention program (Crepaz et al., 2009), whereas the overwhelming majority of studies that examined interventions for HIV positive women in urban areas focused mainly on past and current sexual abuse and/or trauma (Gielen et al., 2001; Gielen et al., 2006; Simoni & Cooperman, 2000a; Simoni & Ng, 2000b). The question remains: why are the prevention and intervention efforts so different? If urban interventions are putting an emphasis on certain factors only after these women contract HIV/AIDS, then there should be the same emphasis placed on prevention programs for women who engage in the risky behavior that leads up to transmission of HIV/AIDS.
Even after merging both prevention and intervention into one cohesive therapeutic package, limitations and ethical considerations need to be addressed. For instance, previous interventions and preventions implemented examined a sample of women who had the means to attend their workshops. In reality, there may be an entire body of women who would benefit from these types of programs, whether they are HIV positive and require intervention or at risk for contracting HIV and require prevention efforts, but did not and will not have the means to attend past or future interventions. Even if the programs are free of charge to attend, it is assumed that the women have the money for transportation and availability to attend. However, many women living in urban areas (especially those who have children) may not have the time or resources to attend an HIV/AIDS workshop. An ethical priority for the overall implementation of a program, especially with regard to the inclusion of a trauma assessment, is that the intervention be more beneficial than harmful for the women. Assuming that the benefits outweigh the risks may be misguided, especially because an intervention that asks a woman to divulge her potential extremely painful past may end up being more harmful than helpful, regardless of what the research contends.
Women are contracting HIV/AIDS in America at a higher rate than ever before, especially in urban areas (Carey et al., 1997). Due to this recent increase of contraction, programs need not only focus on lessening the chances that high-risk behaviors will occur, but also on getting to the underlying reasons of why such high-risk behaviors are occurring in the first place. In order to do this, interventions for women living with HIV/AIDS must be examined for their applicability to women at high risk for the virus and vice versa. Discovering the factors that caused an HIV diagnosis for HIV positive women and assessing these factors for women at risk of HIV as part of risk reduction interventions are likely to help decrease the spread of HIV/AIDS for urban women. Future research should examine not only the current intervention and prevention mechanisms for HIV transmission, but also assess what components are included in the efforts put forth for drug and alcohol abuse, psychological concerns, and behavioral issues to determine what components HIV/AIDS intervention and prevention programs are still missing.
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