Staff Blog

In the field with SWAPOL - Swaziland

I went out with the mobile clinic the other day. SWAPOL has two mobile clinics, each consisting of a nurse, a suitcase and a cardboard box of medications, a vehicle, and a driver.  Together they serve thirty-five rural communities in Swaziland. These mobile clinics provide a service that is incredibly important because it can be so difficult to access healthcare here.  Seventy percent of Swaziland’s population lives in rural areas and the the cost of transportaton to a clinic or hospital can often be prohibitive. If you can make it to a clinic, they are often so overwhelmed that you could wait all day and still not be seen. There is a severe shortage of doctors in this country, and you have to be a doctor to prescribe ARVs (although nurses can prescribe other medications), so often doctors only have the time to see patients with regards to their ARVs and are unable to address concerns of oppurtunistic infections.  Because of the shortage of doctors, nurses pick up a lot of the slack.  But the healthcare system in general is overwhelmed and there is still a lot of stigma within the system when it comes to treating people who are infected.

So SWAPOL’s mobile clinic allows people to be seen in their own area by a nurse that is sympathetic to people with HIV/AIDS.  In fact, the clinic only sees people who are infected with the disease.  And they see children, whether they are HIV positive or negative, because the status of children may not be known.  They also support SWAPOL’s caregivers who provide home based care to sick people in the community.  The nurses act as mentors to the caregivers and attend to the medical needs of individuals who require care at home. 

I went out with the mobile clinic several times when I first arrived, and it was seeing patients with one of the nurses one day that I got my first hit of the realities of HIV/AIDS in this country.  Since the other Intercordians came I’ve been doing other things most of the time.  But I wasn’t doing anything the other day and the nurse asked me if I wanted to join her. I was thrilled to have another oppurtunity to get back in touch with the on the ground reality of HIV/AIDS.

After driving for an hour and a half we arrived at our destination. First, we visited two homecare patients.  The first patent was a woman, 57 years old.  She was lying in bed with a jacket and a blanket on.  She explained to the nurse that she had been to the hospital and they’d found a growth in her abdomin.  Currently, she’s waiting to go in for surgery to have it removed. I don’t know when that will be.  The nurse gave her some vitamin C to suck on to stimulate saliva production because her mouth is very dry and some other tablets and then we moved on.  Although she looked very unwell and incredibly weak she was animated as she described her ailments to the nurse, and she was smiling and trying to engage with me while we waited for the nurse to return with the medication.

The next patient was a middle aged man.  He lay in bed, his emaciated body covered in a blanket from his feet to his neck.  He didn’t move or speak the whole time we were there.  He just stared out from under his blanket, but his eyes were speaking.  All at once they were shining and blank, searching and pleading, resigned and hopeful.  His mother explained that he had been treated for TB of the bones (which I just learned is a symptom of WHO’s stage four HIV) from September to March.  When he finished his treatment he tested for HIV and was found to be positive.  He was put on ARVs immediately.  Although ARVs can often seem to work miracles, they take time.  It’s just been three months now that he’s been on them, so essentially all that can be done is to wait for his body to grow stronger. We left without giving him any medication.  However, while we were there his mother told us that she is a traditional healer but her son is on conventional medicine for treatment of HIV. !
  I asked if she is complementing the medication with traditional healing, and the nurse said that she is not, that the two mediums were not used together. Then why had she decided to rely on conventional medicine in this case?  The woman had spoken with the ancestors. She told them that she knows that she cannot heal HIV, and they gave their blessing for her son to use conventional medical treatment. 

I left these two homesteads with a strange feeling, some understanding that in homesteads all over this country, and all over Southern Africa, sick people were lying in bed, their bodies being ravaged by any number and combination of oppurtunistic infections as a result of AIDS.  They are unable to contribute to or care for their families.  They are being cared for by their mothers, sisters, daughters, neighbours, or caregivers like those trained by SWAPOL.  Or not being cared for at all in some cases, I assume.  Many will gather strength and rise again to become active members of their family and community, for a time at least.  And many will not.  Many will leave their beds only to be moved to a coffin.  That weekend there will be a night vigil for them where family, friends, and community members will gather together under a large tent to pray for the departed. Then at dawn they’ll be buried.  Another funeral. There are so many here. 

After the home visits we pulled up behind a little convenience type store in the middle of nowhere, where a group of women and children and a man or two had gathered. The SWAPOL nurse first got out and did a short information talk on cotrimazole, which, after ARVs is the other wonder drug of AIDS.  Then we climbed into the van and one by one patients came in and sat down.  The nurse first asks for their name, age, HIV status, and whether they are on ARVs. Then she asks what the problem is.  This all happens in SiSwati, but when she records the patients symptoms and prescription she writes it in English, so I have some idea of what is going on.  We were there for two and a half hours and saw about 25 or 30 patients.  It’s interesting and baffling and enlightening and exhausting all at the same time.

This time mostly I was struck by the children, by the children who are HIV positive and the children whose status is unknown.  About 30% of children born to HIV positive mothers become infected themselves. There is very effective treatment now to decrease the incidence of mother to child transmission of HIV, but the child still has a chance of being infected in utero, during delivery, or through breastfeeding.  Most infections occur during the latter two.  And although it may be ideal if all positive women could formula feed their newborns (a contraversial topic though, because of the benefits of breastfeeding), it’s not a reality for impoverished women who can’t afford and don’t have access to formula.  Thus, the best that can be done is to educate new mothers about how to minimize the risk of transmission and encourage them to stop breastfeeding after six months.  Treatment and education to decrease mother to child transmission is available, but it is not currently known h!
ow well these services are delivered in Swaziland. SWAPOL is in the process of designing to a study to investigate some aspects of this.

As we saw patients in the mobile clinic I felt like the epitome of injustice is a child brought into this world infected with HIV.  They don’t have a choice and it’s something they’ll have to live with for their entire life. Their entire, likely very short life.  Many (some sources say most) of HIV positive children die before the age of five. And what if they make it past five?  How long will they live then?  I can’t, as hard as I try, I just can’t understand what it would mean to be a child infected with HIV. And I can’t imagine how it would feel to be a mother who’d infected my child.

I was heartbroken as I watched an HIV postive two year old, his body feverish and dehydrated, barely able to hold up his head on his mother’s lap because he was so weak.  I was heartbroken as a mother showed us the rash on the back of her eighteen month old HIV positive daughter.  I was heartbroken as an eight year old girl, pale and weak, stared off into space as her mother told us of the girl’s chronic diarrhea.  She had to take her out of school, the mother said, because she would catch any illness that anyone had and was home sick most of the time anyway. 

There are the children that are HIV positive.  But then there are the ones that don’t know.  Don’t know?  Don’t know!  How can an HIV positive mother not test her child?  I can’t understand.  I’m trying, and from what I have gathered, I think mostly it comes down to fear.  If they don’t know then they don’t have to feel bad. They don’t have to take responsiblity.  I guess for many parents in this country, not knowing is better. I asked the nurse why parents don’t test their children and she said there are many reasons, but for many they are depressed that they have the disease and don’t want to be even more depressed if they find out their child is infected too.

Perhaps they want to protect their child from stigma and feelings of hoplessness and despair that they themselves may experience.  Practically speaking I imagine it has to do with poverty as well. Is it good to know that your child is HIV positive if the healthcare system in your country is unreliable and overburdened and can’t provide the care they need?  Is it good to know that your child is HIV positive if the medications they need are not consistently available?  Is it good to know that your child is HIV positive if you can’t afford to provide the nutritious diet needed to support the medications?  Is it good to know that your chid is HIV positive if you can’t pay the transportation costs to get them to a clinic in the first place?  Perhaps worrying and feeling guilty about infecting your child and then not being able to help them seems much worse than wondering if they are infected or not. 

But let’s get back to fear.  I’m learning here what a powerful emotion fear is.  Soon after I arrived in Swaziland I was having a conversation about HIV with a sixteen year old boy from around my homestead.  I asked him if he’d been tested. He said not yet, because he was afraid. A few weeks ago we were volunteering with a class of HIV/AIDS counsellors at a facility where sick people and a caregiver could pay about a dollar a day for accomodation and access to healthcare services.  An Intercordian asked one of the counselling students if she’d been tested. No, she said, because she was too afraid. She’d seen what happens to people who are HIV positive and she is too scared to find out that it could be her.  “But if you know that you are positive you can get the treatment that you need,” said the Intercordian.  The student shrugged. This is a person who is training to be an HIV/AIDS counselor.  Their role is to encourage people to test and to talk them through the results, to!
  let people know that a positive test result is not a death sentence and that there is treatment and support available.  And she is too afraid to test herself.

Last week I felt very priviledged to be able to sit in on a community dialogue that SWAPOL was conducting in my area. There were over fifty people present and about a third of them were men, a very good turnout.  The goal was to discuss and brainstorm about why men aren’t involved in HIV/AIDS programs.  A main component of the morning was when the group broke up into three smaller groups: younger women, older women, and men.  Each group was to come up with ten reasons that men aren’t involved, ten reasons why, and ten solutions.  I sat with the group of younger women and somebody translated bits and pieces of the discussion for me.  After about an hour the three groups came together again and a SWAPOL staff member read out the reasons each of the groups had come up with and the solutions they were proposing. 

Some of the reasons were practical, like the men work during the day when many of the programs are run (although according to the World Food Program the unemployment rate in the country is about 40%, and higher in rural areas, so many are not at work).  Some were clearly excuses, such as the men saying they have no one to care for their cattle so can’t leave to attend a meeting (seriously, there are always children around, even during school hours, who could watch the cattle for a couple of hours).

But many of the reasons had to do with denial or fear. Men say that they don’t have HIV, just women have it.  Men don’t want to acknowledge that their behaviour of having multiple sexual partners was a major contributing factor to the rampant spread of the disease.  Men don’t want to be seen being tested because they are afraid that others will assume they are infected and they’ll be the object of stigma (so sometime they opt to send their wife to be tested instead and use her status as a determination of their own).  Men are afraid to be seen being the only man in a group of women.  Men are afraid to expose their unfaithfulness among a group of faithful women.  Or simply, men are afraid to find out their status or didn’t want to accept it as a possibility in the first place. 

Some of the solutions the group came up with are easily facilitated, some less so, and some impossible. Some suggestions included having workshops for males only (feasible), having hospitals for males only (unfeasible), and having the government provide workshops or education sessions in the workplace (possible?).  But mostly it’s going to come down to a change of culture and behaviour.  Women are embracing this, perhaps because they are the ones that are the victims of behaviours and the ones on the frontlines of caregiving for sick people and orphan children, while men continue to resist it. 

I felt inspired as I witnessed this dialogue.  The topic of discussion is at the heart of what will be able to bring about change in the spread of HIV/AIDS.  People were present and engaged and were grateful to have an oppurtunity to verbalize publicly what they keep inside as they cope with their own status and witness the sickness and death of family and friends. They were discussing matters of life and death, their input can and will change the delivery of HIV/AIDS programs in Swaziland, and perhaps beyond.  It’s 2009 and 40% of the population is currently infected with the disease, but at least the question is being asked and people are participating in a response.  SWAPOL is facilitating similar such discussions in 67 communities around Swaziland this year and more next year. The results will be compiled in a report to be submitted to the National Emergecy Response Committee for HIV/AIDS, the body that oversees delivery of HIV/AIDS programs throughout the country, and a!
ction will be taken from there.

Hopefully some of these programs will make a difference. Perhaps the dialogues themselves will be enough to make a change for some people. Getting men on board is key to decreasing the spread of HIV/AIDS.  But it’s more than that.  The headline on the front page of one of the national newspapers today was, “Suicide after HIV test: Woman hangs herself with headscarf after test.”  How do people, men and women, overcome the fear? 

Love,
Lauren