Care for HIV/AIDS Caregivers in Sub-Saharan Africa
An Interview With R. Kevin Mallinson, Ph.D., RN
April 8, 2009
This interview took place at the XVII International AIDS Conference in August 2008.
Hi. I'm Kevin Mallinson. I'm a nursing professor from Georgetown University. I've been working in HIV for about 25 years as a nurse.
My project, which is called Nurses SOAR!, is a nurse capacity-building project in Africa. My belief and philosophy when I started this project was that if you're going to build capacity in nurses, that starts with keeping them healthy -- whether they have HIV or not. That means being able to deal with your grief and loss.
I have an intervention, which is what my poster looks at. It's an overnight retreat on loss and grief for nurses in Swaziland, South Africa and Lesotho. The nurses come at about four in the afternoon and we meet and talk about loss and grief into the evening hours, in the dark, which helps people talk about their loss and grief.
The retreat has been adapted for each of the three countries so that it fits their cultural beliefs around loss and death and grief well. The idea is to get the nurses talking about the effects of the deaths on them.
I found that there were three areas that really distress the nurses. One is that they say they have stopped caring for their patients. They do their work -- they give patients their meds, they wash them up, they change their bandages -- but they have lost their sense of compassion, because they have seen so many people come in.
And if you're familiar with these hospitals and clinics [in resource-poor areas of the world], they're a nightmare. There are people dying in waiting lines.
The nurses have found that the workshop has really helped them to renew why they are nurses: Because they want to care for people in the context of their family, and get that back again.
The second thing that the nurses have talked a lot about is that because so many people die in a year, particularly in families, they can't do all the rituals that, for example, a Zulu might want to do: Doing rituals is expensive, it's time consuming and they can't take that much time away from work. And, they are exhausted. So they have begun to truncate or shorten their rituals, or eliminate them altogether.
One of the nurses was highly distressed because, when her father died, [according to ritual] she should have slaughtered a cow. She didn't, because it's expensive to buy a cow, and the year before she had lost her brother and her sister in the same year. So now her father dies and she couldn't slaughter a cow. To her, that's a spiritual distress that she has to live with.
The nurses talked about that -- in the different cultures, what it is that they are no longer able to do to get through the rituals, and how it hurts them, because the ancestors know what you do and don't do.
Then the last piece is communalty. Communalty means that we all work together as a communal group. The Zulu, the Xhosa, the Basotho, the Swazis are all communal cultures, where they care for one another. Communal cultures are where the idea that "it takes a village to raise a child" came from, because that's exactly what it would be like. It's like a huge family.
But as more and more people die, the stresses get higher and higher. The nurses have said that everyone's pulling away from everyone else and only taking care of their own household and their own children and their own husband. And to a Zulu or a Swazi that is really wrong. It's just plain wrong.
One of the nurses in one of the workshops said, "One of the most painful things I do every day when I walk out of my house and down to get the transport is that I walk by this group of bushes." She said, "I know that there's a group of children living in those bushes." She started to cry, and she said, "As a Zulu, I am supposed to take them home."
She has seven children at home, five that she adopted because her brother and sister died. She said, "I really cannot take more children. I and my neighbors all know that they are living in these bushes, and we've learned to turn away." That distress is not going to go away; it's only going to worsen.
What I wanted to say in the poster is that you can do interventions for grief and loss. In the United States, I started this intervention because virtually all of my friends have died. I learned as a nurse that I couldn't work on an AIDS unit and come home and take care of my partner and my best friend and survive -- unless I took care of my loss and grief.
Interventions work. They work in sub-Saharan Africa. These nurses are thrilled -- they said, "Can we do this again?" Three of the different groups of nurses have gone back to their hospitals and started support groups on their own. They have said, "We need to keep talking to each other and supporting each other." I think that's the most exciting thing.
They do have a lot of burden. About a third of the nurses that have come to these workshops have been HIV positive themselves. They find that, in the workshop, they are getting support from the other nurses. The stigma just goes out the window and they support them. When they leave the workshop, no one has broken their confidentiality. It's because they have all experienced something together.
That's the other piece, I think, that's unusual about this intervention: It's an experiential, interactive thing, which is rarely done in sub-Saharan Africa. Almost everything is done with this awful, boring lecture training kind of approach.
This is an intervention that is really for them to be able to share their stories and make meaning out of this whole epidemic.
Loss and grief are things we keep putting at the very bottom of the list [of priorities in dealing with HIV]. And we shouldn't. I will say that one natural thing that is coming out of this is we're now developing interventions for children and their caregivers, to teach the caregivers: How do you take care of yourself and then communicate with your children so that they will actually be able to manage this loss, and not just keep suppressing it and burying it underneath all the trauma?
How did you come to be working in these countries? Do you come with other people from the U.S., or from other parts of the world? Is it just you developing these interventions? What's the group that's working on this?
This all started in Africa about five or six years ago when a colleague of mine, a midwife, asked me, "Hey, Kevin, would you come to Tanzania with me and work with nurses?"
I said, "Absolutely." I'd never been to Africa. I'd been to Brazil and other kinds of places, doing things. When I went, we were working on nursing school curricula in HIV/AIDS. But clearly, the grief and loss was overwhelming.
I've also been a clinician for 25 years, so I have taken care of people. The U.S. government, through HRSA -- the Health Resources and Services Administration -- put out a call saying, "We want to build nursing capacity in three African countries." It was a call for applications.
I'm at Georgetown University as a professor. I wrote an application and said, "From what I know of African nurses: They want leadership; they want more knowledge and skills around HIV/AIDS care; and they want care for the caregiver." I developed a program and applied, and got the award. It's funded by PEPFAR [U.S. President's Emergency Plan for AIDS Relief]. It's a three-year project.
My team is very large, actually. Besides a number of other professors who are nurse practitioners and specialists in pediatrics and critical care and other areas where people with AIDS are going to need to be taken care of, we also partnered with the Association of Nurses in AIDS Care. Part of my project, Nurses SOAR!, is that Nurses in AIDS Care members volunteer to spend three or four weeks away from their jobs and go to either South Africa, Lesotho or Swaziland. What they do when they're there is they work on the wards alongside the other nurses every day.
They don't take a nursing job. They work alongside the nurses that are working, and they problem-solve and improve communications and documentation. The nurses will say, "I've got a real ethical problem about what we're doing here." Our mentors will say, "Tell me about that. What bothers you?" They help them to work through ethical and legal problems.
The nurses, with this kind of mentoring, have gone off and started their own policy development in the hospitals. They have policies now for health care workers' safety, for nondiscrimination for nurses and doctors with HIV.
In Lesotho and Swaziland they have been working with the wellness centers that the International Council of Nurses has set up.
They are actually taking on, in a sense, more work. You're thinking, "Wow; I thought they were burdened already." But what happens is, they get energized -- empowered is what we would say in this country. They have potential that gets ignored. What this project has been able to do is bring people in that stay there for three to four weeks, get to really know the nurses, build the trust, and get them to think, "How could you solve this problem?"
What's different about our project is, we don't give them American answers. We give them a sounding board and they come up with South African answers, or Swazi answers, because, frankly, they know what they need; they just don't know how to get it.
We help them build the skills, build the leadership, and, at the same time, they're learning about TB [tuberculosis] and cryptococcal meningitis and all those other things that they need to really understand to be able to provide care. But they need to care for themselves and advocate for themselves.
Nurses in AIDS Care has been a fabulous partner in this whole project. Of course, when we're in the countries, we partner with the local agencies, NGOs [non-governmental organizations] and sometimes government projects. Because it's a PEPFAR-funded project, the government's a little bit friendly and says, "Maybe you want to use that money over here in the government hospital. Let's do that!"
We do everything from people coming in for an outpatient clinic, pregnant women coming in for PMTCT [prevention of mother-to-child transmission] and care, all the way to end-of-life care.
There's a very large palliative care center outside of Durban, South Africa, and our mentors have been there, working for weeks on end. When a group of mentors comes back, another group goes. They pick up where the other mentors left off, so it's not like reinventing the wheel all the time.
For example, if one mentor was working with Zukiswa and helping her to develop a policy in the HIV clinic on how to do something, and that mentor goes home to the United States, the next mentor who comes meets Zukiswa and says, "Now, I understand you've gotten to this point; now let's move you further along."
It's been wildly successful, which I'm just thrilled for. And nurses, I just have to say, are extraordinary. They really are extraordinary.
Do you have a Web site for the program, in case people want to come and volunteer; or is it a process that you do through the University?
No -- it's almost there! You'll soon be able to Google "Nurses SOAR!" and actually get our Web site, because it's almost done. [For now, visit the Association of Nurses in AIDS Care's page on Nurses SOAR! for more information.]
Thank you for your amazing work, and for describing it so beautifully.
Thank you. I'm quite passionate about it. Thank you so much. I appreciate it.
This transcript has been lightly edited for clarity.
This article was provided by TheBodyPRO. It is a part of the publication The XVII International AIDS Conference.
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