Reducing HIV/AIDS’ impact on people

Cross-cutting themes

Improved approaches for capacity building and brokering technical support

Mobilising domestic funds (public and private)

Mobilising international resources

Training and use of local managerial/technical talent

What must be done when AIDS strikes an individual, family or community? Practices range from palliating painful symptoms of AIDS to outlawing discrimination based on HIV status, and improving HIV-affected families’ ability to generate income.

Before looking at ways of reducing the impacts of the epidemic, it must be understood just what these impacts are. As with most aspects of AIDS, its impacts are complex and multi-faceted.

Impact on individuals’ health and quality of life

In public health, a focus on budgets and systems sometimes takes away attention from the human toll exacted by AIDS. The importance of palliative care – particularly reducing pain and discomfort – should be central to AIDS care programming. As their immune system becomes compromised, people living with HIV may suffer over a long period from a variety of opportunistic infections or cancers, experience multiple symptoms, and face a myriad of psychosocial issues. Moreover, the course of the disease is unpredictable: declining health may alternate with periods of physical and emotional stability, resulting in chronic uncertainty about what tomorrow will bring. Major symptoms include:

Pain, often increasing in severity as disease progresses

Diarrhoea and constipation

Fever, nausea, vomiting, anorexia and weight loss

Cough and shortness of breath

Fainting, weakness and tiredness.

Most people with advanced HIV infection require pain control at some point. While treatment of the underlying condition is important, pain relief is a priority: no one should have to suffer uncontrolled pain. In low-resource settings, however, pain management often receives inadequate attention. In the African context, the scarcity of doctors creates an obstacle in cases where, by law, only doctors can prescribe morphine and other narcotic painkillers. Uganda has tackled this obstacle by changing its legislation so that nurse-practitioners have this authority as well as doctors. It is also important to educate health workers to understand that they should not withhold strong medications such as narcotic painkillers for fear that the patient will become addicted. Overall, a balance has to be struck between ensuring adequate pain relief and careful supervision and record-keeping of narcotic painkillers.

The impact on families

The few surveys of the impact of having a family member with AIDS show that households suffer a dramatic decrease in income. Decreased income inevitably means fewer purchases and diminishing savings. Tragically, the prospect of new AIDS drugs becoming available in Africa adds a new danger to family stability, since the cost of these drugs (if unsubsidised) can quickly drive people into debt, force them to sacrifice their children’s education, or sell off their farm equipment or animals and even their homes. When family members in urban areas fall ill, they often return to their villages to be cared for by their families, thus adding to the call on scarce resources and increasing the probability that a spouse or others in the rural community will be infected.

Families make great sacrifices to provide treatment, relief and comfort for a sick breadwinner. A common strategy in AIDS-affected households is to send one or more children away to extended family members to ensure that they are fed and cared for. Such extended family structures have been able to absorb some of the stress of increasing numbers of orphans, particularly in Africa. However, urbanisation and migration for labour, often across borders, are destroying those structures.

A distressing development resulting from the epidemic in Africa is the rising number of families headed by young children or very old persons, who not only have to do the myriad tasks needed to run a household but also have to care for the sick adults. While progammes can and must be created to support such families, the difficulties must not be underestimated. It is extremely difficult for children to understand and apply important aspects of home care such as improving hygiene, while the physical demands of housework and care tasks (for example, lifting bed-bound patients) may be extremely hard on both children and aged people. Care demands at home often force children to leave school, or severely affect their ability to study.

The rising tide of orphans

Before AIDS, about 2% of all children in developing countries were orphans. By 1997, the proportion of children with one or both parents dead had skyrocketed to 7% in many African countries and in some cases reached an astounding 11%. In African countries that have had long, severe epidemics, AIDS is generating orphans so quickly that family structures can no longer cope. Traditional safety nets are unravelling as more young adults die of this disease. Families and communities can barely fend for themselves, let alone take care of orphans. Typically, half of all people with HIV become infected before they turn 25, acquiring AIDS and dying by the time they turn 35, leaving behind a generation of children to be raised by their grandparents or left on their own in child-headed households.

Wherever they turn, children who have lost a mother or both parents to AIDS face a future even more difficult than that of other orphans. According to a report published jointly in 1999 by UNICEF and the UNAIDS Secretariat, AIDS orphans are at greater risk of malnutrition, illness, abuse and sexual exploitation than children orphaned by other causes. They must grapple with the stigma and discrimination so often associated with AIDS, which can even deprive them of basic social services and education. By the time one or both parents have died, household assets and property are often already sold off to pay for medical costs – leaving the children totally destitute. Sometimes the orphaned children only find out that they have nothing when new owners of their parents’ property come to take possession.

When discussing programming for AIDS orphans in Africa, the special context of African cultures must be taken into account. In some ways the very phrase "programmes for AIDS orphans" is problematic because of the highly inclusive nature of childrearing in much of Africa. Families from all levels of society – even, and sometimes especially the very poorest families - may take in orphans and treat them as they do their biological children. Therefore, programmes which provide special services to orphans (school clothes and books, food, free education etc.) are likely to be disruptive if the other children in the same family need those things but are not provided with them. Such exclusivity can offend the sharing principle so important to Africans, and may serve to exacerbate stigma directed at orphans.

The impact on societies

It is now clear that the population structures of badly affected countries will be radically altered by HIV. Many HIV-infected women die or become infertile long before the end of their reproductive years, which means that fewer babies are being born; and up to a third of the infants born to HIV-positive mothers will acquire and succumb to the infection. But the most dramatic change in the population comes around 10 or 15 years after the age at which people first become sexually active, when those infected with HIV early in their sexual lives begin to die off. The populations of women above their early 20s and men above their early 30s shrink radically. Only those who have not been infected can survive to older ages (though there are many other factors in Africa that keep life expectancy lower there than in other parts of the world).

What this means for society is hard to predict, since the world has never before experienced death rates of this magnitude among young adults of both sexes across all social strata. But there is one certainty: a small number of young adults – the group that has traditionally provided care for both children and the elderly – will have to support large numbers of young and old people. Many of these young adults will themselves be debilitated by AIDS and may even require care from their children or elderly parents rather than providing it.

Even without analysing the data on death rates, countries with severe long-standing HIV epidemics know from the massive increase in funerals that deaths are on the rise. The data show the same rising trend. Recent analyses of household-based data for countries with high HIV prevalence rates show clear increases in both adult and child mortality rates, which often appear after many years of a steady decline in death rates. The subsequent upturn has been attributed to AIDS.

The impact on economies

AIDS can affect economies in a variety of ways, from the micro- to the macro-economic. There is growing evidence that as HIV prevalence rates rise, both total national income and incomes per capita fall significantly. African countries where less than 5% of the adult population is infected will experience only a modest impact on GDP growth rate, but as the HIV prevalence rate rises to 20% or more (as it has in a number of countries in Southern Africa), GDP growth may decline by up to 2% a year.

All the major sectors of the economy are beginning to feel the negative effects of the HIV epidemic in Africa. For example, labour-intensive businesses will be severely affected by AIDS, and some companies report that profits are already reduced by 15% because of higher absenteeism, health care costs, death benefits, and retraining.

Some companies in Africa have already felt the impact of HIV. Managers at one sugar estate in Kenya said they could count the cost of HIV infection in a number of ways: absenteeism (8,000 days of labour lost due to sickness between 1995 and 1997 alone), lower productivity (a 50% drop in the ratio of processed sugar recovered from raw cane between 1993 and 1997) and higher overtime costs for workers obliged to work longer hours to fill in for sick colleagues. Direct cash costs related to HIV infection have risen dramatically in this same company: spending on funerals rose fivefold between 1989 and 1997, while health costs rocketed up by more than 10-fold over the same period, reaching KSh 19.4 million (US$ 325,000) in 1997. It is believed this is largely attributable to HIV/AIDS.

Agriculture is one of the most important sectors in most sub-Saharan countries, particularly when measured by the percentage of people dependent on it for their living. AIDS can be devastating to farming families. As an infected farmer becomes increasingly ill, he and the family members looking after him may spend less and less time working on his family’s crops. The family begins to lose income from unmarketed or incompletely tended cash crops, has to buy food that it would normally grow for itself, and may even have to sell off farm equipment or household goods to survive. (This can be particularly important where efforts to modernise agricultural production are constrained by reduced incomes of farming families who are unable to buy the required inputs such as machinery, fertilisers, pesticides or additional labour.) The vicious circle is compounded by the high costs of health care. And when the most debilitating phases of AIDS coincide with key farming periods such as sowing or clearing, the time spent nursing a sick person and lost to farm labour is sorely missed.

Altogether, the effects on production can be serious. In West Africa, many cases have been reported of reduced cultivation of cash crops or food products. These include market gardening in the provinces of Sanguié and Boulkiemdé in Burkina Faso and cotton, coffee and cocoa plantations in parts of Côte d’Ivoire. A recent study in Namibia by FAO concluded that the impact on livestock is considerable, with a heavy gender bias: households headed by women and children generally lose their cattle, thus jeopardising the food security of the surviving members.

Examples of Best Practice

Uganda: Specialised palliative care reduces suffering, improves quality of life

Leadership issues summary

Leadership level(s): international NGO with support of national health authority and funding from international donor

Contribution to success: willingness of government to support innovative approaches from "outside"

Gaps and insufficiencies: quality care is expensive and need is rising; requires consistent source of funding but national resources are scarce

Opportunities: high potential for extending capacity building in this often-neglected aspect of care beyond local area to national and international level

The Mildmay Centre opened just outside of Kampala in 1998. It provides comprehensive outpatient palliative care, and rehabilitative services, for men, women, adolescents and children living with HIV/AIDS. In palliative care, the relief of pain and other distressing symptoms can help prolong life, which in turn benefits the immediate community both socially and economically. Palliative care is also intended to facilitate a comfortable death with both peace and dignity.

Rather than becoming a patient’s primary carer, Mildmay is a specialist referral centre which aims to support existing services, and to assist in patients’ rehabilitation. The major problems of referred patients were persistent or recurring pain (47.02%), cough (39.45%), and skin problems (38.37%). Therapies or treatment prescribed by the doctors included medication (especially cotrimoxozole prophylaxis, particularly for children), counselling, spiritual support/counselling, physiotherapy, aromatherapy, nutritional advice, and occupational therapy.

Staff include doctors, nurses, nursing assistants, counsellors (including those skilled in working with children), a physiotherapist, occupational therapist, aroma therapist, nutritional advisor, as well as pastoral care workers, laboratory personnel, pharmacy staff, and a volunteer workforce to accompany patients around the Centre. The majority of referrals (90%) are from within and around the Kampala and Entebbe area.

While many patients pay at least part of the costs of the services they receive, Mildmay has a Hardship Fund to help pay for the care and treatment of all children and adolescents, and for some adults. Many patients are children suffering from chronic disabling conditions, whose families and communities have great difficulty in doing anything to reduce their suffering.

In order to ensure capacity building in AIDS palliative care, the Mildmay Centre has been carrying out extensive educational programmes throughout the region. This is one of its most important roles, and one that benefits the response at a national level.

Mildmay is an expensive institution to run owing to the very high quality of care it provides and its excellent facilities. While it is clear that such quality and facilities cannot be provided everywhere in Uganda, the clinic has an important value as the country’s "centre of excellence" for AIDS palliation. Its existence contributes to improving standards in the country, and in the region.

Zimbabwe: Organic Cotton Project helps AIDS-affected smallholder farming families

Leadership issues summary

Leadership level(s): international NGO with support of national health authority and funding from international donor

Contribution to success: willingness of government to support innovative approaches from "outside"

Gaps and insufficiencies: requires consistent source of funding but national resources are scarce

Opportunities: high potential for extending capacity building in this often-neglected aspect of impact alleviation beyond local area to national and international level

The Zambezi Valley Organic Cotton Project offers a number of benefits to farming families whose productive capacity has been undermined by AIDS.

Productivity and incomes among Zimbabwe's traditional smallholder farmers are some 10% lower than in the country's commercial farming system. Most cultivation is done by family members, using hand hoes and animal-drawn ploughs. At the same time, high HIV prevalence is striking the farming population hard. AIDS widows in particular suffer the effects of increased poverty, reduced availability of labour and lack of experience in managing the crop cycle. Many are left to look after six or more children.

At the request of about 40 women farmers (including widows) who could not afford to buy pesticides, Zimbabwe's first organic cotton project was set up in Zambezi Valley in 1995. With support from the NGO African Farmers' Organic Research and Training (AFFOREST), the project has grown considerably, successfully selling organic cotton and several other organic crops both locally and for export.

Many AIDS widows have joined the project, benefiting from the low input costs and lower labour requirement than traditional cotton cultivation. They receive training and support from AFFOREST-supported Farmer Field Schools, many of whose trainers are women. The curriculum includes a component on AIDS prevention and women's vulnerability, and the schools do social marketing of condoms.

An analysis during the 1997-98 season indicated that while conventional farmers spend more than 15 hours per week on pesticide-related activities (purchasing, carting of water for dilution, spraying), organic farmers spend 1-2 hours per week scouting for pests and predators. As well as saving on pesticide costs, the women avoid cash outlays for hired labour.

Kenya: Strengthening orphans for their future lives

Leadership issues summary

Leadership level(s): religious and community leaders working with local health authorities, and supported by international donors

Contribution to success: recognition that rising numbers of orphans will overwhelm traditional African child-rearing capacity, so new ways must be found to look after these children

Gaps and insufficiencies: insufficient resources

Working at grassroots level, the Kariobangi Community Based Home Care Programme is a good example of how to serve the children "left behind" by the epidemic. The problem is a huge one. In 1997 there were an estimated 416,000 orphans in Kenya, of whom 66,000 were HIV-positive. By comparison with pre-epidemic figures, the total number of orphans in 1990 was estimated to be 25,000.

The programme operates in the Korogocho slums in Nairobi, where formal employment opportunities are scarce and most homes are headed by women alone. A 1997 survey conducted in Korogocho showed 32% of the population was infected with HIV. Child-headed households are becoming increasingly common.

The Programme provides basic medicines and organises home care, both through the training of AIDS-affected family members and through voluntary Community Health Workers. In 1998, some 68 voluntary health workers cared for 1,880 people living with AIDS. They are supported by a team of five nurses, a social worker, and two counsellors, a social worker (who visits the mothers with AIDS and helps them plan for the future of their children), and a pastoral worker.

There is a strong emphasis on children in the project. As the AIDS epidemic expands it becomes more difficult to find family members to care for orphans. With this in mind, Kariobangi runs a Child Crisis Centre where children can stay temporarily when a mother is too sick to cope, or when a mother dies suddenly. The Crisis Centre is also a safe haven where children who are caring for sick parents come to learn, and where they can always get advice, moral support, and emotional support.

Children with HIV are given medical care under the programme. For children who are healthy, but who will in future be orphaned, there is a Children’s Programme that prepares them for life without parents. They also learn how to care for their sick parents and also how to bring up their younger brothers and sisters. While learning they share a great deal together, and so form supportive groups which it is hoped will help them in the future.