The first thing he said was, "You have it." That was it - I just started crying and I couldn't stop.
By 1992, AIDS had been a household word for nearly a decade, and several new drugs had reached the market and were improving lives for many people living with HIV. But there was still widespread ignorance about the disease, as Clara's recent recollection about her HIV diagnosis shows. (Names in this article have been changed to protect confidentiality.)
I didn't know anything about this disease. I said, "Can I hug my kids? Can we still eat in the same room?" Unfortunately, my doctor didn't know anything about this disease either. It was 1992. He told me, "Well, as far as I know, you probably may live for about two years." Talk about scaring the s- out of somebody. "Two years?" I was freaking. "Two years? Are you sure?" He said, "Well, that's the information I have." I was the second HIV test he ever done, he told me. So, I guess he didn't really know how to handle it.
Clara's life story was one of 55 collected between 2000 and 2003 as part of an innovative UWM study of low-income Wisconsin women living with HIV/AIDS. The study followed the women- 73 percent lived in urban areas, 27 percent in rural areas-over a two-year period through multiple in-depth interviews.
"We were wanting to look very broadly at what women's experiences were: The impact of the diagnosis on themselves, their families, their communities; the kinds of symptoms they had to deal with, their health concerns; what struggles they might be having with HIV treatment; and what it was like to access the health care and social services they needed," explains professor of nursing Patricia Stevens, principal investigator of the study.
The narrative approach to collecting information, which included open-ended questions to encourage the women to share their experiences living with HIV, worked well, especially for women with limited literacy. "Telling stories taps into people's everyday ways of expressing themselves and talking about their lives," Stevens says.
"We were worried about being able to keep women in the study over the entire two years, and occasionally over some distance- we traveled to them, wherever they lived in the state, and talked with them in their homes. But each of the women really connected with her interviewer and got engaged in the whole process of the study."
The qualitative approach also created data management and analysis challenges: the 475 total interviews, each lasting about two hours, yielded 12,000 single-spaced pages of transcript.
I ended up in drug treatment, and they knew I shot drugs. That was when AIDS was just coming out. They asked me if I wanted to be tested for it. I said, "No. Why should I be tested for a gay, white man disease?" But, they talked me into it . . . .
The phone rang, and the doctor said, "Can you come in?" And I said, "No, I can't come in. There's all these kids, and nobody here but me." He told me the HIV test was positive. I am like, "What the hell that mean?" Then he said, kind of joking, "I wouldn't share a Coke with anybody."
So, I immediately got all the kids dressed. First we stopped at the candy store. Then, we marched to the liquor store. On the way back, I went in the dope house.
Roberta was among the twenty percent of the study participants who were told their diagnoses over the phone, and one of the many who had a history of drug abuse within the impoverished group Stevens studied.
Thirty-three percent of the women actively used crack cocaine during the study period, and an additional 36 percent had a history of crack or injection drug use- and 24 percent, including Roberta, said their drug and alcohol use increased after diagnosis.
For the next five years I did a lot of dope and a lot of alcohol. Every day I was getting up, first thing on the agenda was open the refrigerator and drink a beer, take a hit. That went on for five years because I was scared. Every day I woke up and I thought I was going to die. So the drugs and alcohol was a way to stop me from thinking that.
The women's immediate emotional reactions to their HIV diagnoses included varying combinations of devastation, shock, indignation, and hysteria. The most common enduring consequence was depression, as Jenny's story shows.
I've always had my faith. But, when I found out I had HIV, I just felt like giving up. At that point, life was just over for me. I would go to sleep and figure that I'm not gonna wake up for my kids the next day. And I would keep it dark in my house. And I would just stay in the bed. I figured if I got out the bed I'm just gonna die. . . .
I went through that impossible, horrible period of depression for a long stretch of time. After six years I finally came to grips with it in my heart, that God is not going to remove me from my kids right now.
Other common long-term effects of HIV diagnosis were suppression of the diagnosis, shame, and thoughts of suicide. Less than one third of the women had revealed their HIV status to employers, friends, or family.
Stevens' research-initially funded in 2000 by the National Institute of Nursing Research and National Institute of Drug Abuse-finds providers frequently unaware of what she calls women's unique "culture and biography."
"For instance, in circumstances fraught with underemployment, child care needs, and residence in dangerous neighborhoods, taking HIV medication may not be highly prioritized in a woman's day," Stevens wrote in a funding application for follow-up study.
In an interview, Stevens says she hopes her work helps health care providers improve interactions with their HIV-infected female patients, "and to think more holistically about the woman's whole life-the whole context within which she needs to deal with this illness."
"It seemed to us that, too often, providers were lacking a full understanding of that context and having a lot of frustration trying to deliver care."
Women's fear and lack of knowledge of the disease are common reasons for non-adherence to treatment regimens, Stevens finds. "Avoidance of health care, non-cooperation with providers, and intermittent medication adherence are some of the only opportunities these women perceive they have to reduce their fear and existential pain," she wrote. "Some shun contact with health care systems and professional symptom management strategies because for them it forestalls contact with AIDS."
Immediate intervention is key
When I got the positive results at the neighborhood AIDS clinic, they were just wonderful. The first idea that they gave me about AIDS was this doesn't have to kill you. Which was very unlike a lot of other doctors who weren't a part of the whole HIV movement, who just didn't know how to deal with people and they were basically giving them death sentences.
The way I was introduced to it all was with enough positive people, people who knew what was going on. So, it was just easier to develop a healthier attitude about the whole thing and learn how to take care of myself.
Stevens would like to make experiences like Madeline's the norm for all newly diagnosed women.
"Intervention at this moment in time has life-long consequences for the burden of disease on the infected individuals, their families and support systems, and on society," she and her co-investigators write in a manuscript submitted for publication. "It is critical to minimize the gap and create seamless support between HIV diagnosis and the time supports and services are established to avert negative outcomes."
"If health care providers use this crucial moment to reach out and connect with newly diagnosed persons who feel suddenly vulnerable and faced with their own mortality," Stevens continues, "a relationship can be forged that can assist individuals through the difficult journey ahead in coming to terms with having HIV and getting the treatment they need."
But for many women, Stevens has found, acceptance of their disease and its accompanying responsibilities are not always enough to bring peace.
"Sixteen percent of the participants were continually confronted by long-term primary male partners (HIV-negative or presumed HIV-negative) who refused to practice safe sex," she writes in another manuscript submitted for publication. "Women in this situation are confused by the intersection of love, guilt, potential loss, fear, and desire to please the most important persons in their lives; and are not well assisted by health care providers who simply condemn all actions that pose risk of infection."
Stevens and her colleagues urge establishment of crisis-intervention principles, and a philosophy of "wrap-around"-borrowing a common social services term- support to see women through the immediate trauma of being diagnosed until longer-term social support and primary care can be activated.
As Stevens envisions it, nurses would be at the heart of such a crisis-response team. "Nurses in community-based settings and public health agencies already provide direct care and case management that connects clients with additional medical and social service resources. They also direct ancillary personnel who provide in-home and on-site care and attention to individuals and families. In addition to their psychosocial approach to human caring, nurses in advanced practice have the legal authority to assess, initiate and manage care, and prescribe medications."
Stevens hopes to continue to follow the women in this study, and to extend the research to include non-English speakers.
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