Attack from AIDS:

Interview with Dr Patricia McInerney by Ashley Porter

The Republic of South Africa has a population of 40 million, and one in five people have HIV/AIDS. Surveys reveal South Africans spend more time at funerals than they do going shopping or enjoying barbeques. Every day 600 die of HIV-related illnesses.

Most outside of the health care domain have probably stopped reading this report because unless it affects them personally they see HIV/AIDS as a 'turn-off'.

After two decades of being hit by a googol of words and statistics, and confronted by graphic images of pain in children's eyes, they flick the pages because they believe it is somebody else's problem.

They don't want to read about it, but amidst this swill of intolerable suffering they are also missing the following story of hope, indeed inspiration among the profoundly dedicated nurses and midwives.

In many ways South Africa's hospital system is no different to that in other countries as it is overburdened, largely by a shortfall in government funding. The best of the clinicians are also lured overseas by bigger dreams and more dollars.

However, among South Africa's nurses and midwives there are no tears as some might suspect. Maybe they have been steeled by constantly staring at death since the first victims were diagnosed with HIV/AIDS in 1982. More likely, their showing of admirable strength stems from growing signs of hope.

Against world trends there are increasing applications to study at nursing colleges. It may relate to the nation's high unemployment, but nonetheless the number of students is rising.

The African nations are also on a dedicated trail of learning. The HIV/AIDS disease process is that of chronic and debilitating illness, which does not warrant hospitalisation so they have adopted the homecare programs first developed in North America and Europe.

Homecare is usually provided by a family member or friend, and supported by a trained community caregiver. It has become necessary because hospitals are too expensive, and families and other carers are finding it too difficult to cope on their own with the demanding needs of people living with HIV/AIDS.

Placing South Africa to the forefront of the internationally accepted home-based care is the fact it is studying the evidence to determine its impact on those providing and receiving it, and on the hospital system and society in general. Most agree homecare is the way to go, but it needs to be supported by evidence.

Taking up the challenge is one of the newest members of the Joanna Briggs Institute Collaboration, the South African Centre for Evidence-Based Nursing and Midwifery (SACEBNM).

Led by Director, Dr Patricia McInerney, a Senior Lecturer at the School of Nursing, which is located within the University of KwaZulu-Natal, in Durban, the JBI Centre has already earned recognition for undertaking the first systematic reviews of their kind in relation to the HIV/AIDS epidemic.

The challenges are near insurmountable given the fact SACEBNM is working without assistance from President Thabo Mbeki's South African government, which until recently promoted the philosophy AIDS was a disease caused by poverty and not HIV, and refused to make antiretroviral medication readily available.

South Africa's hospital system is seriously strained, and the implementation of a plan for the administration of antiretrovirals has added to the pressure. Homebased care has not taken over the responsibility. The availability of antiretrovirals has implications in that caregivers need to be knowledgeable about the drugs - the importance of taking them as prescribed, their side effects, and returning to the hospital for follow-up care.  

Dr McInerney said the extremely high HIV/AIDS incidence rate had obviously put intolerable pressure on the hospital system, and therefore tremendous responsibility on the home-based care services.

"As a new JBI collaborating centre we saw this as an opportunity to help make an impact on a healthcare system that is overburdened," she said. "Once HIV positive people seroconvert and start presenting with opportunistic infections, they are constantly in and out of hospitals.

"When someone is on antiretrovirals there has to be almost a 95 percent adherence to the medical regime of taking the medications, taking them on time with certain foods and so on. Failure to do so can aggravate the situation because the virus has been shown to develop a resistance to the drug if it is not taken in the correct dosages and manner. It becomes a matter of preparing a system for the person who requires the antiretrovirals to take them, and the primary care givers to monitor them. This is where home-based care becomes important because these people provide support and assistance in caring for the person at home.

"However, many families have already been left destitute by the disease. We have a high incidence rate of orphans and child-headed households.

"Home-based care has become a vital part in the fight against HIV/AIDS, but it has put a drain on communities and families, not only in South Africa but all Africa. It's a system whereby communities come in to help families. In some areas a specified person will always visit a specified home. In other areas it is a registered nurse who will visit at home on a regular basis, but she is not there 24 hours a day to give all of the care. She acts more as a support person."

Home-based care became a viable option - albeit not a perfect one - amid a myriad of health and welfare problems, but as Dr McInerney and her team confirmed upon preliminary discussion nothing was being done to appraise the model.

The Centre looked at certain aspects of home-based care including what advances had been made by those providing it, and the economics of the system. It felt a compelling need to contribute to the fight against HIV/AIDS, and took topics of relevance to the community and the School of Nursing within the University of KwaZulu-Natal.

"We decided it was something we could all work on together, and look at home-based care," Dr McInerney said. "There are six of us on the core team, divided into groups of two with each group looking at an aspect of home-based care.

"What we are excited about is that the three studies should link and form a trilogy-like systematic review, and hopefully we can come up with some answers about home-based care."

The systematic reviews are on:

• The experiences of caregivers in providing home-based care
• Effectiveness of home-based care as a caring strategy on the quality of life of people living with HIV/AIDS; and
• The feasibility of home-based care.

Dr McInerney said the experiences of the caregiver in the home are described in the literature, but not through a systematic review.

"We need to find out what support is being given to them," she said. "The literature seems to be showing that these people do carry an enormous burden in terms of fear, anxiety, and stigma, as well as the physical drain on their own bodies in caring for these persons at home.

"It seems once again the grandmothers and young girls of the family are carrying a lot of the responsibility for this care. If we do find there is a lack of support for these caregivers, the real hurdle is going to be convincing the government that they should be given a grant or some form of support.

"The economic impact of home-based care is important too. Theoretically we are saying we are keeping these people out of hospital beds, so then the expense to the government should be less. But instead of providing support, there is an increase in financial impact on the home caring for somebody.

"The third study basically looks at whether home-based care is actually being effective in the fight against HIV/AIDS."

SACEBNM is confronted by daily frustrations like unsuccessfully accessing databases, but as Dr McInerney said, the Centre takes the attitude hurdles are put before us to be met, and we grow with each jump.

"It is a learning process for all of us, but we know it is worthwhile because we can see what benefits can be gained," she added.

Dr McInerney's clinical specialty is midwifery, and before accepting the position as Senior Lecturer at the School of Nursing, and as JBI Centre director, performed two midwifery clinics a week in Johannesburg.

"When women become pregnant they are offered the opportunity of being tested for HIV," she said. "One of the problems that I experienced three years ago was the communication of the results to the women. According to hospital policy, women who had tested positive for the virus had to be informed of their results by a social worker. I also discovered that many women, who had tested negative, had not been told this. "As a frontline clinician it was very frustrating. These women were supposed to be told by a social worker, or someone who was especially trained in post- test counselling, but often the process was delayed due to patient numbers and the limited number of staff trained to do post-test counselling. It must be emphasised however, that this was three years ago, and since then capacity has been developed in the areas of pre and post-test counselling. "Besides more professionals being trained as counsellors, the concept of lay counsellors has been embraced and large numbers have been developed to do this work.

"I don't think the HIV/AIDS epidemic affects me emotionally because I am not dealing with it daily all day. However, I recently marked a Masters research study, in which the purpose of the study was to determine the effects on midwives of conducting pre and post-test counselling on pregnant women.

"Telling people every day that they had tested positive for HIV caused these midwives to experience feelings of burn-out and depression. It is difficult to imagine someone doing this all day, but in the words of the midwives 'someone has to'."

In 2002 it was estimated 91,271 babies were infected with HIV - 250 a day - by mother-to-child transmission, which with provision of the correct drugs may have been preventable. A major part of the problem is the lack of healthcare infrastructure, particularly in rural areas where many women do not have the opportunities to receive medical services during their pregnancies.

The appalling statistic that one in five South Africans have HIV/AIDS - the rate is one in four with women because anatomically the virus is more easily transmitted to females than males - tends to suggest everyone knows a carrier.

Dr McInerney said it would be easy to assume everybody knew someone infected, but it wasn't necessarily the case.

"You know, I probably do know someone who has HIV/AIDS, but I don't know whom," she said. "There is a huge stigma associated with this. There is resistance among people making an announcement they have been tested, let alone being positive."

In many ways the spread of HIV has seen South Africans live a life of secrecy or uncertainty, and their need for evidence is of paramount importance. The work by the SACEBNM can have a big impact on how communities accept homecare, and without doubt it will strengthen the already growing evidence-based practice movement through South Africa.

Dr McInerney said it would be nice if the South African government walked up to the SACEBNM team and said: 'here's some money and we want evidence-based practice in our hospitals'. She is not holding her breath, and despite the Centre's infancy and growing pains it has ambitions.

"In terms of future projects or systematic reviews, tuberculosis is an issue we may have to address," she said. "There was always a high incidence of TB in this country, but the rates were dropping and we were achieving more acceptable levels, until AIDS came on the scene.

"TB is probably one of the most common opportunist infections that we are seeing. With HIV destroying a person's immune status, one's ability to fight TB is decreased."

With HIV/AIDS and TB on their doorsteps South Africans soon learn to live by the cliché about taking one day at a time. n

Fact sheet: HIV/AIDS in South Africa

Of the 42 million people living in the world with HIV/AIDS more than 70 percent - 28.5 million - live in sub-Saharan Africa. Africa is the only continent where women are more infected than men.

Females account for 12.8% of those HIV-positive, while 9.5 percent of males are positive. Of those aged 15-24, twice as many females (15%) than males (6%) are infected.

Children under the age of two are excluded from surveys as the saliva-based HIV test may falsely record them as positive if their mothers are HIV-positive. Their mothers' antibodies are still present in their bodies at that age. Significantly, those living in institutions like prisons and boarding schools are also excluded, meaning the numbers infected are likely to be greater.

HIV prevalence among Africans is highest (12.9%). This can be explained by historical factors like labour migration and relocation, as well as the fact that more African people live in informal settlements.

The infection rate among whites is 6.2%. This is considerably higher than countries wi