POSITIVELY AWARE November/December 2012
- Women of IAS
Women of IAS
history of recent abuse increases the risk of death by 40% in HIV-positive women, U.S. researchers reported at the 19th International AIDS Conference, held in Washington, D.C. in July.
Of note, men were also discussed in the session “Reducing Women’s Vulnerability and Reinforcing Empowerment Opportunities,” which examined both risks for HIV and potential strategies for reducing them. A South African study looked at sexual assault against men and a study from Pakistan looked at working with HIV-positive men to prevent transmission to their wives.
Another presentation, from the U.S., explained the concept of “critical consciousness,” a strategy for taking power in your life, and two reports discussed gender-based experiences in HIV care in Zambia and South Africa, in both men and women.
“Sex is biological,” explained co-facilitator Changu Mannathoko from UNICEF as she opened the session. “Gender is social, but it is very, very complicated.”
Abuse and mortality
Kathleen M. Weber, RN, of the Cook County [Chicago area] Health and Hospital Systems presented “The Effect of Gender-Based Violence (GBV) on Mortality: A Longitudinal Study of U.S. Women With and At Risk for HIV.” Overall, women reporting a history of recent abuse were twice as likely to die in the timeframe of the study (1994 – 2007).
The findings arose from the Chicago unit of the Women’s Interagency HIV Study (WIHS) cohort (basically, a research group of people with similar characteristics). The WIHS (pronounced “wise”) cohort, which provides clinical care along with research, includes a group of HIV-negative women at high risk of infection for comparison. As could be predicted based on other research, all of these women had a high rate of lifetime abuse and violence, especially in childhood. The rate for lifetime history of abuse in the WIHS cohort is 72%.
When WIHS providers noted, however, a high rate of recent abuse, they decided to look at this and try to determine its impact on survival.
Weber said it’s not surprising that women with a history of abuse would experience continuing or episodic abuse, pointing to well-established research findings showing just such a link, but the researchers were surprised to find that violence remained a constant in more than a full third of this group (36%). Moreover, the findings suggest that the background effect of violence on mortality may be hidden (or “masked,” in statistical jargon) by the presence of HIV.
The study looked at 2,222 women (1,642 women with HIV and 580 HIV-negative) from the Chicago, New York City (Bronx and Brooklyn), and Washington, D.C. sites of WIHS. (The other two sites are Los Angeles and San Francisco.) Of the women in this study, 78% had a history of abuse at some point in their life.
Taking into consideration other risk factors such as smoking, depression, HIV infection, and lack of HIV therapy in the positive women, a history of gender-based violence remained a statistically significant risk factor for death. The HIV-negative women also had a higher risk of death if there was GBV, four times higher (or 400%). The number of deaths in this group, however, was only seven. “Still, abuse increased mortality,” Weber said.
In her presentation, Weber noted the known connection between trauma and a host of negative health effects, such as depression, chemical addiction, and undesirable biological changes (including the production of the stress hormone cortisol and damage to the neuroendocrine and immune systems), arguing for continuing research into “possible biologic pathways underlying abuse-related sequelae [conditions resulting from previous disease].”
As background information, the WIHS study noted that, “Gender-based violence (GBV) is a human rights violation impacting the health of women globally. GBV increases risk for both HIV acquisition and transmission; HIV may increase risk for abuse. Prevalence of GBV is high (24 – 72%) among women with and at risk for HIV infection. Psychosocial consequences of GBV (unemployment, depression, and substance abuse) are associated with reduced adherence [to medication] and poor [health] outcomes.”
The more recent abuse (in the previous year) experienced by the women reporting it included forced sexual contact, physical abuse or assault, or intimate partner violence (threatening to hurt or kill them and preventing them from: leaving or entering their home, meeting friends, making phone calls, attending school or work, or getting medical care).
Weber presented several strategies for turning the tide together on this violence. First, survival may improve with identification of current abusive episodes and interventions. Second, as stated above, continued research into the relationship of gender-based violence, trauma, post-traumatic stress disorder (PTSD), and other stressful life events on the neuroendocrine and immune systems and the resulting impact on mortality. Third, health care providers can screen for violence and provide referrals “to keep women safe and alive.” Fourth, a cultural shift toward a zero tolerance approach to family and community violence. Lastly, but even more ambitious, “gender equity, reducing poverty, increasing educational opportunities, and women’s empowerment to challenge structural violence.” (“Structural violence” refers to such problems as the high prevalence of rape both here and around the world, intimate partner violence, etc.)
Although the WIHS research summary included in its conclusions screening and referrals by health care providers, the solution may not be that simple. Weber noted during her talk that the women often don’t follow up with referrals from WIHS to get help in dealing with the violence in their life.
Read an interview with Kathleen M. Weber, RN here.
See the abstract and slides on “The Effect of Gender-Based Violence (GBV) on Mortality: A Longitudinal Study of U.S. Women With and At Risk for HIV.”
See “Domestic Violence Doubles Risk of Death for HIV-Positive Women” from AIDSmeds.com here.
Doctoral psychology student Gwendolyn Kelso of Boston University presented on the concept of critical consciousness, the “capacity to critically reflect and act upon one’s sociopolitical environment.” She reported specifically on African American women in the Chicago WIHS unit.
She and her colleagues surveyed 73 HIV-positive and 25 HIV-negative women. They found that the HIV-positive women with higher levels of critical consciousness had higher CD4+ T-cell counts and lower viral loads.
According to the presentation, African American women’s vulnerability to the virus is shown in racial disparities in HIV and mortality; in structural factors creating vulnerability, namely racial and gender discrimination related to illicit drug use and depression; and in illicit drug use, depression, race, and HIV-related outcomes.
The flip side to vulnerability is empowerment, namely, critical consciousness and its capacity to empower an individual by enabling them to think critically about their place in their world and act upon the realities of their sociopolitical environment by identifying areas where change is desirable and working towards that change. Empowerment is both personal, with individual coping and resilience, and political, with an aim to social change. Empowerment has been shown to be related to higher levels of education, decreased likelihood of cigarette smoking, longevity, physical and mental well-being, and commitment to a career and a future. Social change could be as simple as registering to vote and going to the polls, but in this concept, is connected to people uniting as a group to effect positive change in their lives (for example, coming together to advocate for better working conditions or to lobby legislators).
In short, if people can understand the social forces working against them, they’re in a better position to deal with those forces effectively. This study affirmed other research showing that awareness of racism can improve a person’s health outcomes (see the link to her slides below for references).
Read an interview with Gwendolyn Kelso, MA here.
See the abstract and study slides on “Critical Consciousness, Perceived Racial Discrimination, and Perceived Gender Discrimination in Relation to Demographics and HIV status in African American Women.”
Read the full-text study, “Medically Eligible Women Who Do Not Use HAART: The Importance of Abuse, Drug Use, and Race.”
The full-text study, “Causes of Death among Women with Human Immunodeficiency Virus Infection in the Era of Combination Antiretroviral Therapy,” is available here.
See the abstract on “Perceived Racism and Self and System Blame Attribution: Consequences for Longevity.”
Men, women, and gender
Kristin Dunkle, MPH, PhD of Emory University noted that while research has found a link between sexual abuse of women and of men who have sex with men (MSM) and a higher risk of HIV infection, there is much less data on the connection for other populations of men and almost none from developing countries. She and her colleagues found increased HIV risk for both male victims and perpetrators in South Africa. See their and other abstracts for presentations in this session.
Repeating Patterns - However, 'critical consciousness' can break the cycle of abuse.
Interview with Gwendolyn Kelso, MA and doctoral student on the study, Critical Consciousness, Perceived Racial Discrimination and Perceived Gender Discrimination in Relation to Demographics and HIV Status in African American Women, at the 19th International AIDS Conference in July 2012 in Washington, D.C.
ENID VÁZQUEZ: Thank you for talking with me on such short notice. I was fascinated by the information in this session, by your work in particular, because of the concept of critical consciousness. For me it’s always about why people stay in bad situations? Why is it that a history of abuse opens you to more abuse? Could you explain that to a lay audience? Is this a concept that’s come along recently or an old one?
GWENDOLYN KELSO, BOSTON UNIVERSITY:Paulo Freire first coined the concept of critical consciousness in South America. He defined it as an awareness of social inequality that motivates people to join with others to make social change, on an individual level. That was in the early 1970s. I’m a student in clinical psychology and there was research in the ‘80s and ‘90s, part of the movement of the ‘60s and ‘70s, social consciousness-raising, understanding the impact of social inequality on individuals’ lives.
Social groups that suffer more injustice, that are more oppressed, it’s important for them to have critical consciousness.
So my interest in HIV was how to address the racial disparity, the disproportionate percentage of African American women who are impacted by HIV. My thinking was that African American women who are at risk for HIV tend to be poorer and are subject to racial and gender discrimination as well as poverty, and so having an awareness that the conditions in their lives are part of a broader social structure could be helpful to them. When you’re trying to think about explaining why it is that you’re in a position without power, why the conditions of your life are so poor, for someone with critical consciousness, what that does is it externalizes, accurately, the attributions for the conditions of their lives. One of the questions that can be asked in assessing critical consciousness, for example, is if people agree with the statement “African American men are incarcerated at a higher rate because they commit more crimes.” How that’s answered on a scale of one to five, five being “I agree with the statement,” indicates a higher endorsement of individual blame for incarceration, which is a lower critical consciousness. Another item similar to that but going the opposite way is “African American men are incarcerated at a higher frequency because there are systematic biases in the legal system.” So selecting five for that statement represents an important part of critical consciousness, identification with social groups and discontent with the power distribution in the social world. There are certain social groups like white men and wealthy people with more social power than people of color, women, and poor people. Critical consciousness is being aware of that, attributing social problems to the system, and also believing that social change can happen through joining with others.
And so for African American women and people of color, in terms of racism and sexism, the burdens of social injustice can have really negative effects on health in general and on the immune system—it’s stressful. What my work presented at IAS was that having higher critical consciousness—when the women reported recognizing higher levels of discrimination-related stress—was related to better HIV health markers, lower viral load, and higher CD4 cell count.
EV: I always remember a woman at one of our [TPAN] conferences who attended a session on sexual assault, and said she suffered sexual abuse as a child and became a drug addict as a teenager, but never put the two together until someone, somehow – a counselor, a support group – explained that connection to her. She thought she was just weak. Without awareness, people will blame themselves to a degree that’s not good for them.
GK: You bring up a really good point. My research is on a macro [large] level, where that consciousness is related to social forces. Family systems [micro, or small level], the impact of abuse in children – children have no power in their family system. As adults they blame themselves. They were children, and there’s no way it could have been their fault. Being aware that the power differential allowed the abuse to happen and one isn’t to blame for what happened is pretty powerful.
EV: Any take-away messages from the results you presented?
GK: I think it’s important for people to talk about racism, about sexism, how it affects people’s lives, and for people to talk about social injustice and to join with other people to figure out ways to address it.
Echoes of Violence - A study makes a connection between recent abuse and mortality
Interview with Kathleen M. Weber, RN on the study, The Effect of Gender Based Violence (GBV) on Mortality: A Longitudinal Study of U.S. Women with and at Risk for HIV, at the 19th International AIDS Conference, July 2012 in Washington, D.C.
ENID VÁZQUEZ: Your findings were clear and fascinating, and I wanted to talk with you about the experiences and inspirations for the study, but let me start by asking if this is the first time there was a correlation found between abuse and survival?
KATHLEEN WEBER, COOK COUNTY HEALTH AND HOSPITAL SYSTEMS: This is the first time we saw a correlation between recent abuse and mortality. Even in this analysis, when we looked at just history of abuse alone without looking at current abuse separately, there was no correlation. And part of that is that 78% of our women have a history of abuse, so a sample of those who have never been abused is quite small. But the women who had experienced current abuse in addition to having a history of abuse were the women with whom we saw that increased mortality risk. It’s been a long time and we really needed to have enough “dust,” unfortunately, to occur to be able to actually look at this and then to control for all the other things that are associated with death like smoking, substance abuse, and depression. So in this model, all of those things are actually controlled for—you need a longer period of time and a greater number of deaths to be able to do that, statistically. This is really the first time we’ve seen this in the WIHS data.
EV: In terms of the inspirations for the study, do you think they relate to critical consciousness as raised by Gwendolyn Kelso, for example, and why women stay in bad relationships after you give them referrals for help?
KM: When you look at the WIHS study and you look at the graphs, the abuse is definitely decreasing over time, which is a good thing. For women in the WIHS there was a reduction over the 17-year period in which this was looked at. It is telling us that women are accessing some services because every six months [when the women are seen], when they answer “yes” about being in an abusive relationship, they do get a referral. I think in the process of asking women regularly about abuse raises their awareness that maybe this isn’t the experience other people are having—otherwise they wouldn’t see me here [at a referral site]. It brings the discussion to the table, not just in the WIHS study but in the provider relationship.
So we’re thinking if over time you keep asking people about their experience, they start thinking about their experience, and then slowly seek access to available services or look for opportunities to get services. In a Cook County-related study in JAMA [Journal of the American Medical Association] in August, where they looked at whether referrals actually reduced violence, they didn’t find any substantive randomized, controlled clinical trials, but we know from working with women that it takes a long time. You can’t just say, “Here’s a postcard and the address of a place where you can get help.” It might take years and years of a relationship with a service provider and really concrete support to get women the help they need. You know, a postcard alone is better than nothing, but it’s probably not the most effective approach to get women out of an abusive relationship, right?
EV: Some people don’t get that. What are some other approaches?
KW: You asked about Gwen’s research. She’s looking at our Chicago WIHS in terms of racial and sexual discrimination. Sometimes, as you get a sense of what’s happening and you become more involved socio-politically, things start to change for women as they become more empowered. Part of the study is an offshoot of a bigger study Mardge Cohen [MD, CORE Center in Chicago, where WIHS is conducted] is conducting in collaboration with the Boston [University] group looking at gender roles and this concept of self-silencing, what women do in terms of a tendency to silence themselves to be in a relationship or caring for their children at the expense of taking care of themselves. If those are the expectations you feel you’re supposed to fulfill as a woman, as a mother, as a partner, you can see where that might be setting yourself up for situations where you’re more likely to be abused or in an abusive relationship and not able to get out. So that’s been some of the work that’s been happening here locally. It’s starting to look more at women, gender roles, and particular cultures, what the norms might be, or the expectations. It gets complicated when women are single and they have HIV and the stigma of HIV might also play a part in that relationship.
EV: I was thinking your group started this study because there’s a clear relationship between past abuse and addiction, HIV infection, and other concerns.
KM: Mardge had looked at the connection [of abuse, substance use, and race] to antiviral therapy in a study she did. In terms of WIHS, you ask questions and you get a sense of how much abuse has happened. In collaboration with the Boston University group, we started this study to have women do these biographical narratives. When the women started to tell their stories in an unscripted way, it was just incredible how many women had horrifying experiences as early as childhood and then beyond. We felt this was something to be aware of, and if you’re not working with women closely you don’t have an appreciation of how difficult these women’s lives really are.
For us, on some level, people laugh. It’s like, “Duh, stress is a bad thing. Abuse is a bad thing.” But nobody ever really believes you until you show it.
EV: It needs to be documented.
KM: I don’t think any one of us felt that abuse doesn’t impact people and women’s health outcomes. Of course it does. But it’s a whole different thing when you can document it. People always want to see the evidence, because if there’s no clear evidence that there’s a direct link or what the link is and through what mechanism, you don’t know how to intervene. You don’t know what’s going to be most effective.
So we really look at this as a first step in documenting that there is a clear association with something as severe as mortality. It cannot get any more severe in terms of a health outcome than that, right? So if you back up from mortality, now we’re starting to look at earlier health outcomes. Do you see this manifest with respect to cardiovascular disease in HIV-infected women? Diabetes? Is this affecting other co-morbidities much earlier? But as a first step for us, if you can see it with mortality, than you’re going to be able to find it elsewhere too. Mortality is a profound outcome. If you go for something so profound as your starting point and you find it there, then you can bet that it’s starting much earlier than that.
Something’s driving this mortality. This isn’t because women were beaten up. This is not because women were thrown down the stairs or thrown in front of trains. This isn’t homicide or suicide. Those things contribute a little bit to the findings, but they don’t explain everything that we’re finding as a relationship between current abuse and mortality. There’s some biologic change that occurs as a result of being in an abusive relationship.
EV: I worked on an issue with women from the West Side, in the Project WISH study at the University of Illinois, and it was astounding to me to hear the same story of abuse over and over again from each woman. You talked about women not being allowed to go to their medical visits by their [male] partner. Talk about some of these influences and inspirations you had for the study.
KM: In the WIHS, in the section where we ask about violence, that is one of the questions. Does your partner prevent you from using the phone? From contacting your friends? From going to your necessary medical visits? Those are questions that are asked. For me, thinking that anybody would be able to stop you from going to your medical visit in this country, in this day and age, is really baffling. You’re sitting at home and you know you need your HIV care, you need your HIV medications, and someone is actually preventing you from doing that or from seeing friends. Sure, there’s some level of lack of social support and external contact if someone is really controlling you to the point that he is preventing you from leaving your home, preventing you from doing the things you like to do. I guess in many ways you can imagine that the lack of social support and activity with people who care about you would have some impact, the direct effect of not being able to go to your research facility or care appointment. I think in Rwanda [where Dr. Cohen is working with HIV-positive women] Mardge talked about some examples of this in which the women were HIV-infected and the husbands were HIV-infected, but they didn’t want to be seen going into the HIV clinic, so they weren’t going to the clinic for their own medication and they were taking their wives’ medications. Those different levels and types of abuse really drove us to look at the data to see if we can see in the data what we see when women are in front of us actually telling their stories. You can tell how horrible this makes them feel. I think we always thought this finding would come out. It’s just that so many of the ways in which we were handling the data before [weren’t right for our study]—for example, with depression—as people have more abuse, they become more abused, and it’s a cyclical thing. So the new approach we were able to take with this collaborate from the University of North Carolina really helped us look at the data and use some models that we didn’t have available to us before.
EV: You’re talking about the marginal structural models? I didn’t discuss that aspect in my article.
KM: It is a mechanism where we can look at longitudinal data and you can make more sense out of all the contributing factors and then how those individual factors change over time. If you were just looking at it cross-sectionally, one time point, you probably wouldn’t be able to appreciate the findings as much. It wouldn’t have shown up as glaringly.
EV: What message would you like to give to women, to men, to any group?
KM: For me, I just feel that the most important message is really that abuse does have a profound effect on women. If it manifests itself in an outcome as terminal as mortality, it’s really something that deserves attention. I just really don’t feel like enough attention has been placed on the impact of violence on the health of women. I feel that you see a lot more attention now on violence against girls and women, and I think it’s really becoming a topic to think about. I think it has to take place in every venue. It has to be a community discussion. It has to be a health care provider question as they come in for care, for every type of contact. It has to become more a discussion that we have openly to increase awareness. I think there’s a lot more awareness in this country than there used to be, but we have a long way to go. And then you think about what it’s going to take to really change and reduce the amount of violence that women and children really experience. Our women in the study have a really high rate of childhood violence exposure as well, directly and indirectly. So I just think it’s good to begin to have some data to have dialogue about the effects of violence on health.
EV: Are the effects of violence the same on men?
KM: Absolutely! There is literature [research] describing the association between being abused and subsequently being more likely to abuse others. Men are most definitely not exempt from the violence epidemic. If we begin to ask, certainly we will find (and others have already reported) that abuse is as common among men as it is among women and that the impact of abuse is just as devastating.
While special attention needs to be paid to the most vulnerable groups, those least likely to protect and advocate for themselves, the message really is ...we need to collectively work toward ending violence of all kinds against all individuals by speaking out and adopting a zero tolerance approach in all settings (public and private, domestic and international, etc).