Symptom Management Still a Primary Care
Part 2 of a three-part series
"The overwhelming impact on people's lives - the way the disease remains a death sentence for so many in Africa - is reminiscent of 1985 here," says Holzemer.
In his UCSF office on a bright Bay Area morning, it's hard to imagine the parallels, but just as in Africa today, the AIDS epidemic in San Francisco 20 years ago was killing people at a frightening clip. Consequently, until the recent introduction of antiretroviral treatments, the alliance between UCSF School of Nursing and the African researchers has focused almost entirely on symptom management and improving the quality of life for HIV/AIDS patients, building on what was learned in the early days of the epidemic in the United States. For the Bristol-Myers Squibb (BMS) study, researchers conducted nearly 800 interviews with PLWAs, their family caregivers and health care workers regarding effective symptom management strategies.
Perhaps one of the study's most important results was that it led to the translation and dissemination in sub-Saharan Africa of 10,000 copies of Symptom Management Strategies: A Manual for People Living with HIV/AIDS. The manual, which Holzemer calls "a living document" and which originated at the UCSF School of Nursing, benefited and grew from the African study. It is available for free in six different languages (including four African languages) at the website. The Network is now conducting a randomized, controlled trial that looks at the efficacy of the manual at sites around the world that include Botswana, Brazil, Colombia, Jordan, Kenya, Lesotho, Norway, South Africa, Swaziland, Tanzania, Thailand, Uganda, Zambia and the United States (including Puerto Rico).
"Our question is: Do the subjects find this manual useful?" says Carmen Portillo, UCSF School of Nursing professor and one of the study's principal investigators. "We will be recruiting men and women who are HIV-positive and have been experiencing at least one symptom in the past week, and who are willing to participate."
"Clients and providers tell us they love it," says Holzemer. "But we have no tested evidence of this. It's time to do that, though we're still pretty desperate for funding of this study."
The African Contributions to Symptom Management
In addition to the distribution and modification of the manual, the BMS care management study yielded numerous insights for improving care in Africa and around the world. For example, it made clear that HIV/AIDS patients in Africa report more psychological symptoms (such as stress, anxiety and depression) than physical symptoms (such as rashes and diarrhea). One article the group published in the Journal of the Association of Nurses in AIDS Care concluded that caregivers, including nurses, need to be better trained in addressing those psychological symptoms. Holzemer notes grimly, however, that this will not be easy to do, since the nurse-to- patient ratio in many of these countries exceeds 1:40. (By way of comparison, in California, nurses are fighting to have a law enforced that calls for a 1:4 nurse-to-patient ratio in some settings.) "The study was also a gentle reminder that different cultures respond differently to illness," says Holzemer. He notes, for example, that in Africa, families and communities are often involved to a much greater degree in care and care decisions than they are in this country. Another cultural difference is that despite solid trust in health care providers, many HIV/AIDS patients continue to use traditional healers. "One of the greatest surprises for me was getting to know some of the indigenous, traditional remedies that are used for symptom relief and to realize that they indeed work," says Sukati. She points, for example, to how giving someone a tea made from boiling the crushed leaves of a guava tree can help relieve diarrhea. Or how mixing the crushed leaves of an avocado tree in water and having the patient drink that can help relieve anemia. But, says Holzemer, the traditional remedies can also be prohibitively expensive. Sometimes being treated by a traditional healer can cost the equivalent of a year's salary for African patients. In addition, while the focus on symptom management will continue to be relevant, Holzemer worries that traditional healers have a tendency to tell victims that they are "cured" when their symptoms are eased. He wants to address this, so that the healers don't work against widespread distribution of antiretroviral medications (ARVs). That distribution began in earnest in January 2004, thanks to funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria and the President's Emergency Plan for AIDS Relief. Though distribution is still limited and problematic, the introduction of ARVs in Africa has moved the battle against HIV/AIDS and the research focus into an entirely new phase. Rising from the Dead: Living Well with HIV/AIDS in Africa
"One of the themes of this epidemic has been the transition from seeing it as a death sentence to understanding that, with medications, it is a manageable chronic illness," says Holzemer. "The availability of ARVs and seeing people who were almost dead recovering and returning to work have been very encouraging," says Sukati. In fact, one of the articles that the BMS group wrote for the Journal of Nursing Scholarship concluded that "as antiretroviral medications become more available in these areas, community members and care providers can help clients realize the possibility of living well with HIV/AIDS, and can work with clients to improve functional ability and control symptom intensity to make living well a reality." But that doesn't mean it will be easy. Though there has been real progress, a June 2005 report on the "3 by 5" Initiative by UNAIDS and the World Health Organization found that only about 500,000 of the 4.7 million people (age 0-49) infected in sub-Saharan Africa had received ARVs. As Sukati notes, "A lot of infrastructural constraints - not enough staff to do the necessary work or villages separated by miles and a lack of transportation - have hindered effective treatment." Perhaps most powerfully, the continued stigmatization of people with HIV/AIDS, particularly women, remains a devastating obstacle to people receiving any treatment at all. "Many health care workers in southern Africa have come to the conclusion that unless stigma is conquered, the illness will not be defeated," Holzemer and co-author Leana Uys from the University of KwaZulu-Natal School of Nursing, South Africa, wrote in the Journal of Social Aspects of HIV/AIDS. Hidden in Back Rooms
It's an understandable conclusion, given what they and their colleagues have witnessed. While doing interviews for the BMS study, Holzemer remembers coming across a patient hidden in the back room of a family's home. "She hadn't been fed for days," he says. Such situations are not uncommon; nor are stories of people being beaten, even killed, and the moral judgments attached to contracting HIV/AIDS mean people are unwilling to even admit having the disease. "A lot of people are still reluctant to have themselves tested," says Sukati. "By the time many come, it is too late. And this also perpetuates the wrong notion that the ARVs are dangerous, because people who start them very late usually die and the general perception is that those people died because of the toxic effects of the ARVs." "It (stigma) enhances denial and secrecy around this disease in my country," says Seboni. As Sukati's memory of the student nurse who died makes clear, nurses - who are dying at the same rate as others in their countries - are not immune to stigmatization. Some nurses still stigmatize patients or watch as patients are chased away from the hospital. Others are stigmatized and shunned in their communities simply for working with HIV/AIDS patients. And nurses who contract the disease certainly understand the depth of stigmatization. These observations led a group of researchers - again a partnership among UCSF School of Nursing and numerous universities throughout southern Africa - to apply for and receive funding from the National Institutes of Health's Fogarty International Center to study HIV/AIDS and stigma, with Holzemer and Uys as co-principal investigators. The project is developing culturally appropriate measures of perceived HIV/AIDS stigma, and is testing how stigma affects the quality of health care and quality of life for PLWAs, as well as the quality of work life and quality of life for nurses. Finally, it will use "community-based participatory research methods to intervene at a community level with five national nurses associations and to track the impact of the community-level events on the perceived stigma of nurse members of those associations," the study website states. After initial data gathering for the project, in March 2005, representatives from all of the sites in the stigmatization study were Scholars in Residence at the Rockefeller Foundation's Bellagio Study and Conference Center in Bellagio, Italy. There they worked long hours to find consensus on two surveys - one for PLWAs and one for nurses - that would produce valid results and lend real insight into the effect of stigma. In the ensuing months, the surveys were translated into the appropriate languages, and local people - usually PLWAs or those working with HIV patients - were trained to administer it. UCSF School of Nursing Professor Anita Stewart, who attended to contribute her expertise in creating new measurement tools, found the experience at Bellagio "humbling. The qualitative research conducted in the five countries formed the basis for the new stigma measures, and highlighted the extreme rejection and isolation faced by PLWAs at home and in their communities. Although I attended to provide expertise in creating structured interviews, the true experts were the nurses working in the various countries. They were very special women, working against all odds to change the situation." Next: Empowering Women
In addition to the distribution and modification of the manual, the BMS care management study yielded numerous insights for improving care in Africa and around the world. For example, it made clear that HIV/AIDS patients in Africa report more psychological symptoms (such as stress, anxiety and depression) than physical symptoms (such as rashes and diarrhea). One article the group published in the Journal of the Association of Nurses in AIDS Care concluded that caregivers, including nurses, need to be better trained in addressing those psychological symptoms. Holzemer notes grimly, however, that this will not be easy to do, since the nurse-to- patient ratio in many of these countries exceeds 1:40. (By way of comparison, in California, nurses are fighting to have a law enforced that calls for a 1:4 nurse-to-patient ratio in some settings.) "The study was also a gentle reminder that different cultures respond differently to illness," says Holzemer. He notes, for example, that in Africa, families and communities are often involved to a much greater degree in care and care decisions than they are in this country. Another cultural difference is that despite solid trust in health care providers, many HIV/AIDS patients continue to use traditional healers. "One of the greatest surprises for me was getting to know some of the indigenous, traditional remedies that are used for symptom relief and to realize that they indeed work," says Sukati. She points, for example, to how giving someone a tea made from boiling the crushed leaves of a guava tree can help relieve diarrhea. Or how mixing the crushed leaves of an avocado tree in water and having the patient drink that can help relieve anemia. But, says Holzemer, the traditional remedies can also be prohibitively expensive. Sometimes being treated by a traditional healer can cost the equivalent of a year's salary for African patients. In addition, while the focus on symptom management will continue to be relevant, Holzemer worries that traditional healers have a tendency to tell victims that they are "cured" when their symptoms are eased. He wants to address this, so that the healers don't work against widespread distribution of antiretroviral medications (ARVs). That distribution began in earnest in January 2004, thanks to funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria and the President's Emergency Plan for AIDS Relief. Though distribution is still limited and problematic, the introduction of ARVs in Africa has moved the battle against HIV/AIDS and the research focus into an entirely new phase. Rising from the Dead: Living Well with HIV/AIDS in Africa
"One of the themes of this epidemic has been the transition from seeing it as a death sentence to understanding that, with medications, it is a manageable chronic illness," says Holzemer. "The availability of ARVs and seeing people who were almost dead recovering and returning to work have been very encouraging," says Sukati. In fact, one of the articles that the BMS group wrote for the Journal of Nursing Scholarship concluded that "as antiretroviral medications become more available in these areas, community members and care providers can help clients realize the possibility of living well with HIV/AIDS, and can work with clients to improve functional ability and control symptom intensity to make living well a reality." But that doesn't mean it will be easy. Though there has been real progress, a June 2005 report on the "3 by 5" Initiative by UNAIDS and the World Health Organization found that only about 500,000 of the 4.7 million people (age 0-49) infected in sub-Saharan Africa had received ARVs. As Sukati notes, "A lot of infrastructural constraints - not enough staff to do the necessary work or villages separated by miles and a lack of transportation - have hindered effective treatment." Perhaps most powerfully, the continued stigmatization of people with HIV/AIDS, particularly women, remains a devastating obstacle to people receiving any treatment at all. "Many health care workers in southern Africa have come to the conclusion that unless stigma is conquered, the illness will not be defeated," Holzemer and co-author Leana Uys from the University of KwaZulu-Natal School of Nursing, South Africa, wrote in the Journal of Social Aspects of HIV/AIDS. Hidden in Back Rooms
It's an understandable conclusion, given what they and their colleagues have witnessed. While doing interviews for the BMS study, Holzemer remembers coming across a patient hidden in the back room of a family's home. "She hadn't been fed for days," he says. Such situations are not uncommon; nor are stories of people being beaten, even killed, and the moral judgments attached to contracting HIV/AIDS mean people are unwilling to even admit having the disease. "A lot of people are still reluctant to have themselves tested," says Sukati. "By the time many come, it is too late. And this also perpetuates the wrong notion that the ARVs are dangerous, because people who start them very late usually die and the general perception is that those people died because of the toxic effects of the ARVs." "It (stigma) enhances denial and secrecy around this disease in my country," says Seboni. As Sukati's memory of the student nurse who died makes clear, nurses - who are dying at the same rate as others in their countries - are not immune to stigmatization. Some nurses still stigmatize patients or watch as patients are chased away from the hospital. Others are stigmatized and shunned in their communities simply for working with HIV/AIDS patients. And nurses who contract the disease certainly understand the depth of stigmatization. These observations led a group of researchers - again a partnership among UCSF School of Nursing and numerous universities throughout southern Africa - to apply for and receive funding from the National Institutes of Health's Fogarty International Center to study HIV/AIDS and stigma, with Holzemer and Uys as co-principal investigators. The project is developing culturally appropriate measures of perceived HIV/AIDS stigma, and is testing how stigma affects the quality of health care and quality of life for PLWAs, as well as the quality of work life and quality of life for nurses. Finally, it will use "community-based participatory research methods to intervene at a community level with five national nurses associations and to track the impact of the community-level events on the perceived stigma of nurse members of those associations," the study website states. After initial data gathering for the project, in March 2005, representatives from all of the sites in the stigmatization study were Scholars in Residence at the Rockefeller Foundation's Bellagio Study and Conference Center in Bellagio, Italy. There they worked long hours to find consensus on two surveys - one for PLWAs and one for nurses - that would produce valid results and lend real insight into the effect of stigma. In the ensuing months, the surveys were translated into the appropriate languages, and local people - usually PLWAs or those working with HIV patients - were trained to administer it. UCSF School of Nursing Professor Anita Stewart, who attended to contribute her expertise in creating new measurement tools, found the experience at Bellagio "humbling. The qualitative research conducted in the five countries formed the basis for the new stigma measures, and highlighted the extreme rejection and isolation faced by PLWAs at home and in their communities. Although I attended to provide expertise in creating structured interviews, the true experts were the nurses working in the various countries. They were very special women, working against all odds to change the situation." Next: Empowering Women