Empowering Women in a Land Run by Men
Part 3 of a three-part series
Maureen Chirwa was one of the women at Bellagio and is one of the team leaders of the stigma study being done in partnership with UCSF. A senior researcher at the Kamuzu College of Nursing at the University of Malawi, Chirwa - like so many others involved in this fight - knows this epidemic at a deeply personal level, having adopted an orphaned child when one of Chirwa's relatives died from HIV/AIDS.
Along with many of her colleagues, Chirwa has come to believe that women are bearing the brunt of stigma, as well as carrying the largest burden for the disease. Because women in Malawi (and in many other African countries) are subservient to their men, they cannot refuse sex with their husbands. Nor can they demand that their husbands use a condom, despite the fact that the men in Malawi often feel free to have multiple sex partners outside their marriage, say Chirwa and others.
Husbands also control whether and where these women might go for testing and treatment. And stigma dictates that they not be tested at all, since "merely testing identifies you as positive. It's viewed as a moral disease, a curse, your own fault," explains Chirwa.
Without testing, of course, it only becomes clear that a woman has the disease when symptoms become visible. But she may be too intimidated to seek treatment, or her husband may forbid it for fear of embarrassment. "If she is infected, he might even chase her away and remarry," says Chirwa. "This affects whole families, affects bonding in the family; children start blaming."
And much like the virus itself, the effects of stigma begin to spread. Perhaps these women give birth to infected children, who also are a source of embarrassment to the family - a particularly crippling blow to young people who've acquired the disease through no fault of their own. Perhaps the infected men go on to infect and discard other women. And, believes Chirwa, when people are already stigmatized and believe they will die anyway, they may be less inclined to take care about infecting others.
Chirwa and Seboni are among those who believe, therefore, that empowering women - through reaching them when they are young and teaching them life and communication skills - is central to reducing stigma and reducing the spread of the disease. This process has already begun. Chirwa, for example, has successfully recruited and trained PLWAs to interview others about stigma. "Simply doing the focus groups has been very therapeutic already," says Holzemer.
"When this started, people were scared to talk to anyone," says Chirwa. "But as a country, we are responding very well. Our cultural beliefs are being reviewed and cultural leaders are aware." But it's clear that she believes gender issues remain a significant challenge.
As does Seboni in Botswana. "The young people of Botswana have taken the lead to go to war with HIV/AIDS," says Seboni. "Some have openly declared their status and embark on several activities to educate other youth and to fight the stigma. Indeed, they are the windows of hope. I commend the women of southern Africa for carrying the burden of care for both the young and the aged. As to the men of this region, I strongly believe they exacerbate this problem. They need to reflect and come up with modalities for stopping the spread of HIV/AIDS and engage in physical care of the sick."
The Role of Religious Groups
UCSF School of Nursing Professor and Department Chair Sally Rankin voices a similar point of view. Rankin first became involved in Africa five years ago through an organization called Global AIDS Interfaith Alliance (GAIA), a faith-based organization that her husband founded. She is a member of its International Advisory Board. GAIA's mission is to partner "with religious organizations in resource-poor countries for community-based HIV prevention and care." As Rankin began interviewing people in the villages in which GAIA was working, she found her research focus, heart disease, undergoing a shift. "The people doing HIV/AIDS work in Africa are so committed, it's inspirational, it's a whole different level of meaning than my work on heart disease. People with HIV/AIDS in Africa don't live long enough to get heart disease," she says. On her own (though she has applied for two National Institutes of Health [NIH] grants), Rankin is engaging in what is known as "participatory action research, a term meaning that the viewpoint of the research participants is key to understanding their problems and serves as the basis for developing programs that meet their needs." She has begun an ongoing relationship with the University of Malawi, from which research efforts could take place, and recently helped secure a position at a hospital there for Joanne Jorissen, a graduate of the UCSF School of Nursing's nurse midwifery program. One paper that Rankin has published in Health Care for Women International examines women's roles in Malawi society and finds that, at present -- just as Chirwa has found - women often have no ability to advocate for themselves. She describes a companion pattern to the one Chirwa describes, wherein a husband becomes infected and dies. The woman, desperate to support her children and stigmatized as being the cause of her husband's death, starts engaging in risky sexual behaviors as a means of generating income. Rankin's work in this area has led her to believe that part of women's lack of power may stem from religious or cultural beliefs. In some of the male focus groups, men told Rankin: "If a woman runs around, the pastor says 'divorce her.' But if a man runs around, the pastor says 'forgive him.'" Nevertheless, says Rankin, echoing Chirwa, "Throughout society, the extent of the problem is being realized and religious leaders are beginning to speak out." Her first NIH research grant application seeks support for exploring the role of religious groups in HIV prevention and care in Malawi. And Rankin sees hope in the changes that have already begun. She points to one GAIA-sponsored project in 37 villages across Malawi, where women are hired to support children orphaned by HIV/AIDS. (Rankin's second NIH research grant application seeks support for a look at the psychosocial needs of children in countries with orphans and vulnerable children.) These women are trained as "caregivers" for people who are sick or orphaned, and as teachers of villagers about HIV/AIDS. They earn about $10 per week, under the supervision of trained coordinators. In some of the villages, the caregivers have recognized that there are income-generating activities they can pursue without selling their bodies, and have begun to build a piggery and raise cattle to earn income for themselves and for the orphans. Building Nursing Capacity
While the efforts continue to improve care and reduce stigma, there is a parallel effort to build the numbers and the power of southern Africa's nursing workforce. "To improve the lives of people living with HIV, we have to build nursing capacity," says Holzemer. The reasons are clear. Nurses in Africa are often the ones delivering primary care against the disease, but they struggle with the overwhelming patient loads. They also struggle because the majority of nurses are women working in a patriarchal society, and so they often have little power to make changes. With that in mind, Carmen Portillo is co-leading a nursing initiative sponsored by the Health Resources and Services Administration, a collaborative project between UCSF and the University of Washington. The Nursing Initiative within the International Training and Education Center on HIV (I-TECH) recognizes and tries to address the fact that increasing nurses' competency in their roles as educators, advocates and caretakers is essential to HIV/AIDS care, prevention and treatment efforts in resource-poor countries. The three-year effort (2005-2008) expects to train nursing teachers as HIV nurse educators, expand the HIV/AIDS curriculum and develop teaching materials. It will also enhance the mentoring processes in these countries in managing patients, families and communities affected by the epidemic. Finally, a working group of southern African nursing leaders and US partners will produce a report on workforce issues to be presented to the ministries of health in these countries and the Centers for Disease Control (CDC) in the United States. The groups will also produce joint plans to address urgent issues. Those urgent issues, says Portillo, include "lack of HIV preparation of the nurses; the stigma related to this disease; the lack or absence of nursing leadership for the country's health care agenda; and the paternalistic health care culture in the African countries. This is not true for every country - Botswana is an outlier - but I would say it is so for the majority of countries. The nurses that we met are intelligent individuals who have been providing nursing care for 20 to 30 years and have been the backbone of the country's health care system. But they are never in a position to develop policy or engage in dialogue." Holzemer believes that one way to address this is for trained nurses with PhD degrees to publish research results in English-language journals, which have a certain prestige, qualifying them for leadership positions in academia and government. "In particular, I want to enhance the capacity of nursing faculty to be successful in their universities and to get nurses to the decision-making tables in their country," says Holzemer. He and others have, therefore, been particularly conscious of properly recognizing the African nurse leaders' contributions to the research when they do publish. "It isn't like we're the experts," he says of the UCSF faculty members who have engaged in projects in Africa. "This has been truly collaborative." All of these efforts and the sheer willpower of the African nursing leaders have already begun to bear fruit. In Botswana, the new minister of health is a nurse. Seboni and Uys have been among those who have brought together nurses in southern Africa to form the African Honor Society for Nursing (chartered in 2000 by the International Honor Society for Nursing, Sigma Theta Tau). In Malawi, Chirwa chairs the Steering Committee for the Ministry of Statutory Corporations, a position from which she can advocate for HIV/AIDS policy guidelines to be implemented in various businesses and organizations and for nurses to be trained to test people with HIV/AIDS. Portillo points to the Ethiopian Ministry of Health's attending the annual conference of the Ethiopian Nurses Association (ENA) as genuine progress. "It was very powerful," she says. "Not only are nurses asserting their strength and visibility, but they now have certain individuals looking to them for leadership in the epidemic. And just recently, CDC and the Ministry of Health invited the ENA for the first time ever to discuss national nurse practice policies." Thin Resources and Bad Roads
Nevertheless, many obstacles remain to consistently conduct effective, joint research in Africa - and so achieve a higher level of status for nurses. Botswana's Seboni cites "poor communication due to ineffective email services; most of the time, the computer systems are down. [In addition,] the Government Research Ethics Committee does not meet regularly, and it has to sanction all the international and regional studies." In Swaziland, Sukati says, "Even though my university understands that research is important for career development, there is not any time given to do research because a lot of time focuses on teaching. Also, funding for research is very thin." And in Malawi, Rankin says, "The roads are in terrible shape, the electricity is out all the time and communication is near impossible." Moreover, there is skepticism in some quarters about the value of research, in part because in the past, some researchers from the developed world have come in and exploited people for their own ends. Consequently, like Holzemer, Rankin is acutely conscious of recognizing the contributions of her African colleagues. "I'm constantly aware of the discrepancy in resources - they're often just struggling to keep their university open - and I feel bound to publish pieces through the local press and disseminate findings in Malawi." "My Heart Has Been Touched"
Despite the obstacles, the partnerships are already yielding benefits, both personal and societal. "My time at UCSF and the partnership forged with Bill (Holzemer) have helped me appreciate the value of research," says Sukati. "Academically, I have been enriched and my skills in working collaboratively with people from different parts of the world have been sharpened." Similarly, the UCSF researchers are grateful for the insights, opportunities and inspiration that Africa has presented them. In Rankin's case, it has even altered the shape of her life's work. "My heart has been touched by the plight of Africans," she says simply. "There is no way, once you observe firsthand or hear the voices of the nurses providing HIV care in their country, that it cannot impact the way you think of HIV nursing care," says Portillo. "The resilience of these communities in the midst of this disease is extraordinary," says Holzemer. He believes that resilience - combined with the type of international efforts it has begun to inspire - has the potential to heal in ways that move far beyond this devastating pandemic. "The work here makes me believe that global health can be one of the pillars of economic growth and global security in the years ahead."
UCSF School of Nursing Professor and Department Chair Sally Rankin voices a similar point of view. Rankin first became involved in Africa five years ago through an organization called Global AIDS Interfaith Alliance (GAIA), a faith-based organization that her husband founded. She is a member of its International Advisory Board. GAIA's mission is to partner "with religious organizations in resource-poor countries for community-based HIV prevention and care." As Rankin began interviewing people in the villages in which GAIA was working, she found her research focus, heart disease, undergoing a shift. "The people doing HIV/AIDS work in Africa are so committed, it's inspirational, it's a whole different level of meaning than my work on heart disease. People with HIV/AIDS in Africa don't live long enough to get heart disease," she says. On her own (though she has applied for two National Institutes of Health [NIH] grants), Rankin is engaging in what is known as "participatory action research, a term meaning that the viewpoint of the research participants is key to understanding their problems and serves as the basis for developing programs that meet their needs." She has begun an ongoing relationship with the University of Malawi, from which research efforts could take place, and recently helped secure a position at a hospital there for Joanne Jorissen, a graduate of the UCSF School of Nursing's nurse midwifery program. One paper that Rankin has published in Health Care for Women International examines women's roles in Malawi society and finds that, at present -- just as Chirwa has found - women often have no ability to advocate for themselves. She describes a companion pattern to the one Chirwa describes, wherein a husband becomes infected and dies. The woman, desperate to support her children and stigmatized as being the cause of her husband's death, starts engaging in risky sexual behaviors as a means of generating income. Rankin's work in this area has led her to believe that part of women's lack of power may stem from religious or cultural beliefs. In some of the male focus groups, men told Rankin: "If a woman runs around, the pastor says 'divorce her.' But if a man runs around, the pastor says 'forgive him.'" Nevertheless, says Rankin, echoing Chirwa, "Throughout society, the extent of the problem is being realized and religious leaders are beginning to speak out." Her first NIH research grant application seeks support for exploring the role of religious groups in HIV prevention and care in Malawi. And Rankin sees hope in the changes that have already begun. She points to one GAIA-sponsored project in 37 villages across Malawi, where women are hired to support children orphaned by HIV/AIDS. (Rankin's second NIH research grant application seeks support for a look at the psychosocial needs of children in countries with orphans and vulnerable children.) These women are trained as "caregivers" for people who are sick or orphaned, and as teachers of villagers about HIV/AIDS. They earn about $10 per week, under the supervision of trained coordinators. In some of the villages, the caregivers have recognized that there are income-generating activities they can pursue without selling their bodies, and have begun to build a piggery and raise cattle to earn income for themselves and for the orphans. Building Nursing Capacity
While the efforts continue to improve care and reduce stigma, there is a parallel effort to build the numbers and the power of southern Africa's nursing workforce. "To improve the lives of people living with HIV, we have to build nursing capacity," says Holzemer. The reasons are clear. Nurses in Africa are often the ones delivering primary care against the disease, but they struggle with the overwhelming patient loads. They also struggle because the majority of nurses are women working in a patriarchal society, and so they often have little power to make changes. With that in mind, Carmen Portillo is co-leading a nursing initiative sponsored by the Health Resources and Services Administration, a collaborative project between UCSF and the University of Washington. The Nursing Initiative within the International Training and Education Center on HIV (I-TECH) recognizes and tries to address the fact that increasing nurses' competency in their roles as educators, advocates and caretakers is essential to HIV/AIDS care, prevention and treatment efforts in resource-poor countries. The three-year effort (2005-2008) expects to train nursing teachers as HIV nurse educators, expand the HIV/AIDS curriculum and develop teaching materials. It will also enhance the mentoring processes in these countries in managing patients, families and communities affected by the epidemic. Finally, a working group of southern African nursing leaders and US partners will produce a report on workforce issues to be presented to the ministries of health in these countries and the Centers for Disease Control (CDC) in the United States. The groups will also produce joint plans to address urgent issues. Those urgent issues, says Portillo, include "lack of HIV preparation of the nurses; the stigma related to this disease; the lack or absence of nursing leadership for the country's health care agenda; and the paternalistic health care culture in the African countries. This is not true for every country - Botswana is an outlier - but I would say it is so for the majority of countries. The nurses that we met are intelligent individuals who have been providing nursing care for 20 to 30 years and have been the backbone of the country's health care system. But they are never in a position to develop policy or engage in dialogue." Holzemer believes that one way to address this is for trained nurses with PhD degrees to publish research results in English-language journals, which have a certain prestige, qualifying them for leadership positions in academia and government. "In particular, I want to enhance the capacity of nursing faculty to be successful in their universities and to get nurses to the decision-making tables in their country," says Holzemer. He and others have, therefore, been particularly conscious of properly recognizing the African nurse leaders' contributions to the research when they do publish. "It isn't like we're the experts," he says of the UCSF faculty members who have engaged in projects in Africa. "This has been truly collaborative." All of these efforts and the sheer willpower of the African nursing leaders have already begun to bear fruit. In Botswana, the new minister of health is a nurse. Seboni and Uys have been among those who have brought together nurses in southern Africa to form the African Honor Society for Nursing (chartered in 2000 by the International Honor Society for Nursing, Sigma Theta Tau). In Malawi, Chirwa chairs the Steering Committee for the Ministry of Statutory Corporations, a position from which she can advocate for HIV/AIDS policy guidelines to be implemented in various businesses and organizations and for nurses to be trained to test people with HIV/AIDS. Portillo points to the Ethiopian Ministry of Health's attending the annual conference of the Ethiopian Nurses Association (ENA) as genuine progress. "It was very powerful," she says. "Not only are nurses asserting their strength and visibility, but they now have certain individuals looking to them for leadership in the epidemic. And just recently, CDC and the Ministry of Health invited the ENA for the first time ever to discuss national nurse practice policies." Thin Resources and Bad Roads
Nevertheless, many obstacles remain to consistently conduct effective, joint research in Africa - and so achieve a higher level of status for nurses. Botswana's Seboni cites "poor communication due to ineffective email services; most of the time, the computer systems are down. [In addition,] the Government Research Ethics Committee does not meet regularly, and it has to sanction all the international and regional studies." In Swaziland, Sukati says, "Even though my university understands that research is important for career development, there is not any time given to do research because a lot of time focuses on teaching. Also, funding for research is very thin." And in Malawi, Rankin says, "The roads are in terrible shape, the electricity is out all the time and communication is near impossible." Moreover, there is skepticism in some quarters about the value of research, in part because in the past, some researchers from the developed world have come in and exploited people for their own ends. Consequently, like Holzemer, Rankin is acutely conscious of recognizing the contributions of her African colleagues. "I'm constantly aware of the discrepancy in resources - they're often just struggling to keep their university open - and I feel bound to publish pieces through the local press and disseminate findings in Malawi." "My Heart Has Been Touched"
Despite the obstacles, the partnerships are already yielding benefits, both personal and societal. "My time at UCSF and the partnership forged with Bill (Holzemer) have helped me appreciate the value of research," says Sukati. "Academically, I have been enriched and my skills in working collaboratively with people from different parts of the world have been sharpened." Similarly, the UCSF researchers are grateful for the insights, opportunities and inspiration that Africa has presented them. In Rankin's case, it has even altered the shape of her life's work. "My heart has been touched by the plight of Africans," she says simply. "There is no way, once you observe firsthand or hear the voices of the nurses providing HIV care in their country, that it cannot impact the way you think of HIV nursing care," says Portillo. "The resilience of these communities in the midst of this disease is extraordinary," says Holzemer. He believes that resilience - combined with the type of international efforts it has begun to inspire - has the potential to heal in ways that move far beyond this devastating pandemic. "The work here makes me believe that global health can be one of the pillars of economic growth and global security in the years ahead."