international center for hiv/aids research & clinical training in nursing
A Voice of Nursing, A Voice for Nursing, at a Crucial Time
Last May, Carmen Portillo, co-director of the UCSF-based International Center for HIV/AIDS Research and Clinical Training in Nursing, spent two intense weeks in Tanzania teaching a new HIV/AIDS curriculum to 18 nurse-tutors from all regions of that country. When the course was completed, students came to her in tears saying, “Thank God you gave this to us. Why didn’t we have this before? Now we are prepared. Now we have the confidence to teach our students more fully and we understand what it means to care for persons with HIV.” Portillo felt she had just seen new leaders in HIV/AIDS nursing emerge. And just in time.
Approximately 80% of frontline patient care is delivered by nurses. The World Health Organization predicts a shortage of 4.3 million trained healthcare workers will hit countries most impacted by HIV/AIDS, and the shortfall among nursing and midwife positions in sub-Saharan Africa will be most acute.
Seeing funds topping $30 billion from PEPFAR (the President’s Emergency Plan for AIDS Relief) and other sources washing into Africa, Bill Holzemer, the Center’s other co-director, is hopeful. “Even if just a small portion of that money goes to build the capacity of basic nursing, through education and training and by addressing workplace issues to retain nurses, I think it is very possible to address the nursing shortage. We’ve known about these problems for years, but there have never been sufficient resources to do anything about it. And now there actually is money. Real money. Lots of money.”
UCSF’s Dr. Bill Holzemer, shown at right, works in partnership with a group of nurse tutors in Dar es Salaam, Tanzania, to develop capacity in HIV/AIDS.
But is the voice of nursing present when decisions to allocate resources are made? Holzemer and Portillo believe that it should be more prominent. Their center is one of the most powerful catalysts in the nation helping to cultivate and inspire the voices of HIV/AIDS nursing care, training, research, and advocacy leaders. Founded in 1991, it is America’s only international center focused on HIV/AIDS research and training based within a school of nursing.
“The international HIV/AIDS nursing center that Bill and Carmen lead is an absolutely crucial program,” says John Greenspan, director of the AIDS Research Institute at UCSF, of which the Center is a key program. “They are doing the kind of life-saving work that really makes a difference on the ground.”
Nursing Training That Brings Empowerment with Knowledge
The Center offers federally-funded master’s-level, doctoral, and postdoctoral training fellowships. Its international reach is reflected in the background of its students, who train at UCSF and then return to their home countries around the globe, as well as in an extensive web of faculty collaborations stretching from Asia to South America to southern Africa.
Two elements of Portillo’s training in Tanzania resonated deeply with the nurse tutors there. First was the comprehensiveness of the curriculum. Despite the high prevalence of HIV/AIDS in the country, changes to the nursing curriculum can only be made with the approval of the Tanzanian Ministry of Health, making development a slow and onerous process. Second, the training was imbued with the voice of nursing: how nurses can deliver care to the patient, the family, and the community as well as nurses’ roles in prevention, testing, and counseling. Too often nurses are given HIV/AIDS training that is diluted or copied from curricula created for other healthcare professionals, mainly doctors.
This combination of factors made the training transformative and empowering for the nurses. “Because they are better informed,” Portillo explains, “they feel they can be better spokespersons for what they are doing in the hospital, and not just doing what the doctor tells them to do.”
A group of Master Nurse-Tutors—left to right, Geoffrey Malembeka Kananga, Florian Mbungu Mtwara, Sebalda Leshabari, and Paulo Kdayi Ndolage—conducts a micro-teaching session on life skills.
In South Africa, where Portillo will develop a community-based model for 33 antiretroviral clinics, the goal is even more ambitious: The clinics will use a case management model for HIV/AIDS patient care delivery with nurses at the hub for all aspects of patient care. This puts full-context patient care into practice, requiring administrators and physicians, as well as nurses, to break down traditional hierarchical structures and utilize the broader-scoped nursing role to deliver better patient care.
Research That Builds Evidence-Based Nursing Care
and Develops the Voice of Nurse Leaders
Amid the swell of clinical and basic science research on HIV/AIDS that emanates from UCSF, the Center’s research maintains a strong nursing focus based on enabling people to live well with HIV/AIDS. The Center supports individual faculty research on such topics as sleep disruption in HIV/AIDS, religious influence on HIV prevention and care, and perceived AIDS stigma. The Center also leads a collaborative international research network that generates cross-cultural research, much of it focused on care for HIV/AIDS-related symptoms, at sites around the world.
The idea for a collaborative network focused on HIV/AIDS nursing research emerged in 1995 at a meeting in Botswana of World Health Organization nursing centers. Yet, seeds of interest had been sown already in Holzemer. Immediately before, he served as an external examiner at the University of Botswana’s School of Nursing. Reviewing a collection of nursing theses, he couldn’t help but notice that the vast majority of them focused on HIV symptom management. “That’s the first time for me it became so real how pervasive the pandemic was. In Botswana, the prevalence rate ranged from 20 to 35 percent, and even then, in the early 1990s, 80 percent of the patients cared for in the hospitals were AIDS patients,” relates Holzemer.
The UCSF International Network for HIV/AIDS Research was launched by Holzemer and Portillo later that year. To date, four major studies have been completed, involving combinations of 17 sites across the U.S., Europe, South America, Asia, and Africa. The studies have generated scores of publications, abstracts, and presentations at international meetings. Just as importantly, the Network provides opportunities for nurses throughout the world to gain experience designing and conducting nursing studies with mentorship and support from seasoned nurse researchers.
The power of the collaborative network is well illustrated by one network study which collected information about symptom management strategies from 422 HIV positive people. That information was ultimately used by nursing researchers in four southern African countries to develop Self and Family Care Symptom Management for Persons Living with HIV Disease, a comprehensive manual for people living with HIV/AIDS that has been translated into five languages, with over 10,000 copies distributed in sub-Saharan Africa. Digital copies are also available as a free download from the Network’s website, www.aidsnursingucsf.org. Recently, the Network completed a study to assess quantitatively the efficacy of the material within the manual.
The Network has provided invaluable opportunities for nursing students and faculty at institutions around the world to develop the capacity to carry out high-quality nursing research, grow their academic qualifications, and develop distinctive expertise. Portillo points out that despite the fact that UCSF supports their fellow collaborators, each site summons tremendous initiative to raise its own funding and resources. “Research in itself is a large undertaking regardless of where it is,” Portillo explains, “but when you start talking about doing it in a country where nurses have so many competing needs and where their workloads are so heavy in terms of teaching and administration, I think it is a huge undertaking because they don’t have the resources. I mean simple things like being able to make copies of surveys.”
Carmen Portillo and Bill Holzemer, co-directors of the International Center for HIV/AIDS Research and Clinical Training in Nursing program based at UCSF.
Portillo and Holzemer both emphasize the Network has been key in getting the voice of nursing to the table at academic and policy-creation institutions. Portillo says, “the Network has given nurse researchers credibility, and they have also developed sort of ‘mini–HIV centers’ within their schools. As a result, they are being seen as HIV resource individuals in their countries. I think about Cali, Colombia: Nurses there have created a center where HIV nursing research is all they do.”
When the Voice of Nurses Challenges Perceptions
When Holzemer served as the only nurse on the U.S. Institute of Medicine’s committee to evaluate implementation of the President’s Emergency Plan for AIDS Relief, he had to respectfully challenge the perceptions of his fellow members. On country visits to Africa in 2005 and 2006, seeing growing numbers of people seeking AIDS testing and more people in line for treatment with antiretroviral medication, it was assumed that stigma must be waning and increased treatment adherence would soon follow. Holzemer had data that, unfortunately, showed otherwise. Driven by the nursing perspective of viewing patients within their full context—family and community ties included—Holzemer had initiated an intensive research project on stigma in 2003. His data reveal the intensely difficult reality faced by people living with AIDS, even amid the welcome influx of drugs and treatment in southern Africa.
In focus groups and surveys, Holzemer and his collaborators collected and characterized many types of abuse and stigma experienced by people living with AIDS. Disclosure of a positive status results in beatings by partners for some, neglect by family members for others, and verbal abuse for many. All these manifestations diminished the drive of sufferers to seek treatment and other assistance. Further studies showed that, while on one hand healthcare providers closely associated with HIV/AIDS patients could themselves be victims of stigma, on the other hand they could be perpetrators of stigma, refusing to touch HIV/AIDS patients or making them wait until all other patients were cared for.
Members of the stigma study team. Back row: Minrie Greeff, Anita Stewart, Leana Uys, Bill Holzemer, Kevin Durrheim, Rene Phetlhu; middle: Maureen Chirwa, Priscilla Dlamini; front: Lucy Makoae, Joanne Naidoo, Thecla Kohi.
While the stigma studies reveal complex challenges, they also point to some possible solutions. Holzemer is pleased that two research instruments his group developed are now being used by other researchers to probe the nature and extent of stigma within their own regions. To begin to fight stigma, his group created a training module for stigma reduction and is currently conducting pilot studies to assess its effectiveness. In Swaziland, where their data were presented to the Ministry of Health, a national stigma control project is being developed.
Awareness of stigma has also begun to inform the healthcare community about how it can better provide services. “In sub-Saharan Africa,” Holzemer says, “nurses are infected with HIV/AIDS as in the general population. So, in Botswana, 20 to 30 percent of the nurses are infected. They are dying. They will not go to clinics because they will not stand in line with their patients. This took people a long, long time to realize, but now they are starting separate clinics for healthcare professionals. The teachers’ unions in some countries have gotten their unions to offer separate clinics for teachers because they didn’t want to be in line with the parents of the kids they teach, because of stigma and the consequences.” With intensifying passion, the typically calm Holzemer added, “Just repainting the buildings and putting chairs out in the hallway or outside under a veranda isn’t going to cut it because the consequences of going to those clinics can be devastating for some people, just being seen.”
Nurses Inspiring the Voice of Nursing
Through their training and education work at the Center, both Holzemer and Portillo have witnessed extraordinary shifts in nurse colleagues who discover the power of the nursing voice. They have trained nurses to become better informed about HIV/AIDS patient care. They have mentored researchers around the world to conduct nursing-focused research, providing training and opportunities for authorship and other capacity development. They have helped develop nurses who are now recognized as experts in their own countries on HIV and nursing.
At this crucial juncture, when the voice of nursing needs to be part of the solution to ensure there will be enough nurses to care for people living with AIDS, the Center has enabled nurses to inspire each other. And, as Portillo says, “With new funding becoming available through PEPFAR, the time is right to build nursing capacity. Nurses are a key element of having an effective global workforce strategy.”
1 Working together for health. The World Health Report 2006, World Health Organization.
2 Dlamini P, Kohi T, Uys L, Phetlhu R, Chirwa M, Naidoo J, Holzemer W, Greeff M, Makoae L. (2007) Manifestations of HIV/AIDS stigma: Verbal and physical and neglect abuse in five African countries. Public Health Nursing. 24(5):389–399.