http://www.somanet.org/youthproject_files/SAREC%20%20AIDS%20report.htm

The Swedish strategy document (1999) states that HIV/AIDS prevention will not be successful without close links to health care interventions. The HIV/AIDS epidemic has caused enormous strains on health systems, whilst home-care of the sick, as well as the increasing number of orphans has also put a strain on families and local communities. Swedish development cooperation has therefore decided to incorporate efforts within these areas, which also constitute a challenge to research

Health care systems in Africa were already insufficient and under-financed before the advent of AIDS. These deficiencies have worsened which has increased the demand for health care and simultaneously reduced the health system’s capacity to respond. In the mid 1990s, it was estimated that treatment for people with HIV consumed 66% of public health spending in Rwanda and over a quarter of health expenditures in Zimbabwe.

Data from six hospitals in low-income countries with large epidemics show that the percentage of hospital beds occupied by HIV positive patients ranged between 39 and 70 per cent (World Bank 1997). In Malawi and Zimbabwe, the share of hospital beds occupied by HIV/AIDS patients is even higher. A study from South Africa projects that direct costs of HIV/AIDS as a proportion of total health expenditure might rise to well over fifty per cent by the year 2005 (de Vylder 1999). A related impact of the epidemic is the lack of facilities for patients suffering from other conditions.

HIV/AIDS related illness and premature death among health care workers themselves will continue to create further costs for the health sector, but few countries have as yet fully understood the epidemic’s impact on human resources in their health sector, according to UNAIDS (2000). In Malawi and Zambia, for example, five to six fold increases in health worker illness and death rates have reduced personnel and increased stress, overwork and fear for personal safety in remaining staff (Loewenson and Whiteside 2001).

The growing demand on health care systems is underscored by the tuberculosis epidemic in the countries most heavily affected by HIV. Tuberculosis (TB) has become the leading cause of death among people with HIV infections, accounting for about a third of AIDS deaths worldwide. But hospitals and health centres in Africa repeatedly run out of supplies of essential drugs. In Zambia, for example, where the tuberculosis caseload increased six fold between 1992 and 1998, proper treatment became increasingly problematic due to the lack of TB drugs (UNAIDS 2000).

Rising costs, combined with scarce resources, have weakened the ability of the public sector to provide health care. This, along with concern for quality, has led many governments in Africa to look for alternative ways of financing the costs of health care and to turn to cost sharing/recovery schemes. Moreover, many governments have encouraged the development of the private sector and various alternatives are being tested. In some countries, such as Kenya, large numbers of health workers have moved to the private sector, to start small clinics - even in rural areas (Krantz et al 1998, Sida 1997). Private beds within public facilities, or staff running private clinics within government hospitals are now common features in many countries (Sida 1997).

The main rationale for encouraging the private sector is that privatisation and market-oriented systems can improve efficiency and quality of care through competition and economic incentives. It seems that it is not governments alone that encourage the development of the private sector. People with STDs for example, increasingly resort to care outside officially supported services (Faxelid et al. 1998; Msiska et al. 1997)^[1]. In fact, the private sector is rapidly expanding as the source of health care preferred by STD patients (Krantz et al. 1998; Lyons 1997). However, in a recent paper, Alubo (2001) argues that the claims that private medical facilities provide better quality of care and are more efficient than public health services are exaggerated. He gives examples from Nigeria where he finds that the quality of care given by the private sector is uneven, and that the whole sector is in a deep crisis with several negative prognoses. Alubo also finds the public health system in a crisis but argues that in order for the majority of people to have access to health services it is more important that the public health system improves than the private, particularly as fees are high in the private system. He concludes that while private medicine will continue to be available for those that can afford it, it is unlikely to provide solutions to Nigeria’s morbidity and mortality problems, particularly in relation to epidemics such as the growing burden of HIV/AIDS.

Apart from the studies mentioned above, little research has been done about the growth of private sector health services and the implications for access, affordability and quality of care in both the public and private sector.

Gender plays a significant role in determining women and men’s relative access to care and social support, a factor, which is compounded by the HIV/AIDS epidemic. Research has shown that women face proportionally more barriers than men in seeking and accessing care and support due to many reasons such as: overall economic constraints in accessing formal health care services, religious and cultural norms, as well as the perception of women that the care they receive is inappropriate (Moses et al 1992). Studies in health seeking behaviour for STDs in Kenya and Zambia indicate that women are likely to present their problems later than men (Faxelid et al 1994; Moses et al. 1994; Zambia DHS 1996). This was corroborated by work conducted by the Kenyan researchers on the private sector, where it was observed that husbands with STDs were the first to consult the clinicians (Ahlberg et. al. 1997). This tendency among women to delay seeking treatment probably reflects both lack of knowledge of the importance of prompt treatment for STDs, and women's limited access to health facilities (Moses et al. 1994). There is a need to carry out research in order to understand what role gender and gender relations play in the care and support for people living with HIV/AIDS (Seidel 1999).

Health care utilisation and health seeking behaviour are influenced both by peoples’ experiences and their expectations. Previous studies on quality of STD care in low-income countries have shown severe deficiencies in such areas as diagnosis, treatment, counselling and partner notification (Bryce et al. 1994; Faxelid et al. 1997; Hanson et al. 1997; Nuwaha 2000). Furthermore, patients with STDs expressed dissatisfaction with the health care they had received at public health facilities. High cost, inadequate drug supply, poor staff attitudes towards patients with STD, not being examined, and not given enough time to talk to the provider were the main complaints (Faxelid et al. 1997; Ndulo et al. 1995; Freudenthal 2000).

Home-based care (HBC) is the only option available for many HIV/AIDS patients in Africa, because hospital care is both unaffordable and inaccessible. An effective and affordable home care programme can relieve the overload of hospitals with HIV/AIDS patients and has also major health and social benefits for the patients and their families. It can furthermore reduce the hazard of transmission of tuberculosis from infected HIV/AIDS patients. Home care can also be a potentially effective entry point for strengthening HIV prevention and tuberculosis control. Despite these numerous advantages, only a small proportion of people living with HIV and AIDS have access to home care services in Africa today, and the coverage is likely to become even lower in the near future. According to a recent study (Ntsutebu et al 2001), one of the main reasons for the low coverage appears to be the limited involvement of governments in the provision of HBC services.

Moreover, it is not clear how HBC programmes should be expanded and replicated. Programmes today vary as to whether they concentrate on home-visits for the care of the chronically sick AIDS patients or have a broader approach. These latter approaches involve a continuum of care from clinic-based services and care for infections occurring earlier in the course of the disease, such as directly observed treatment (DOT), preventive counselling and condom promotion as well as home care for the very ill. There is as yet no clear information or guidelines on how HBC programmes for HIV/AIDS and TB can be developed, implemented, monitored and evaluated. Existing HBC programmes have not been well documented, and standard indicators for monitoring and evaluation of HBC programmes are unavailable.

There is an urgent need to expand and replicate the HBC programmes in Africa. In order to accomplish this research is needed to find out how various HBC programmes have been affordable, feasible and sustainable. Innovative strategies are also required to establish effective partnerships between NGOs, private and government health facilities.

In order to make drugs more accessible one has to understand the underlying reasons for poor access. One factor is obviously their cost. Another is inadequate information about the drugs needed to manage HIV related illnesses. Finally, drug access is hampered by the poor capacity of health systems in low-income countries to select and use drugs in a rational manner, to monitor patients’ progress and side effects and to manage their drug supply. This is linked in turn to inadequate financing of the health system in general and of the drug supply in particular.

The high costs of antiretroviral drugs (ARVs) and the sophisticated medical facilities required to track patients’ progress and monitor side effects have been major stumbling blocks to access for the vast majority of people with HIV in the developing world. Providing antiretrovirals demands counselling and testing services to identify clients, laboratory services to identify and monitor the progress of the disease and resultant treatment, as well as sustained drug access. In many countries these conditions do not exist and use of public funds to provide ARVs for those for whom such services do exist would shift health resources away from the poor. Access to ARVs must therefore be improved along with the delivery of adequate reliable health services for the poor.

A few projects (The Drug Access Initiative) were initiated in Uganda and Côte d’Ivoire in 1998 to promote rational use of treatment for people with HIV, including ARVs. Some important lessons have already been learnt about the operational aspects of the initiative where currently about 600 people in Uganda and 900 people in Côte d’Ivoire are receiving ARV therapy. Advisory boards in both countries have defined a treatment policy and training efforts were successful in ensuring physician compliance with the proposed treatment guidelines in the referral centres participating in the projects. The guidelines and training took a comprehensive approach to the management of patients with HIV, including their opportunistic infections and diseases. The increased emphasis on drugs for opportunistic infections will make the Drug Access Initiative more relevant to clients who cannot afford ARV drugs, and to follow-up centres where ARVs are not prescribed. Drug price negotiations led to a significant decrease in the price of ARV drugs in the region, but it is clear that further price reductions should be possible to achieve, if need be through the introduction of generic competition. The educational efforts of the initiative were assessed as positive in both countries. The growing interest of the countries advisory boards in opportunistic disease management has resulted in more operational follow-up centres. In both countries, the presence of the initiative have given people with HIV/AIDS some hope and has led to a wide mobilisation of health sector staff around HIV/AIDS. It has also resulted in a great deal of discussion of AIDS in the media – not only about the cost of HIV treatment but also HIV prevention. By raising the visibility of the epidemic, there is hope that the discussion may enhance prevention efforts as well (UNAIDS 2000).

However, if the cost of ARV drugs is lowered considerably and African governments are able to offer treatment for people with HIV/AIDS there is a need for more research on how individual compliance with drug regimes can be achieved. Treatment of HIV infection is likely to be life-long. Many HIV-infected individuals cannot tolerate the toxic effects of the drugs and many will have difficulty complying with treatment that involves large numbers of pills and complicated dosing schedules. In a recent article in the Lancet, Harries et al (2001) discuss how an ARV anarchy can develop in sub-Saharan Africa but also how it can be prevented. They argue that there are some major problems and obstacles to be overcome before ARV therapy can be used efficiently in Africa. Poor compliance to treatment will lead to the emergence of drug-resistant viral strains that need new combination of drugs or new drugs altogether. The authors suggest that countries that have well functioning tuberculosis control programmes could use these and make them a joint programme for tuberculosis and AIDS control. Some of these TB control programmes have been successful in achieving patient compliance with the strict regimens of treatment and that knowledge could be utilised in the ARV therapy as well.

There is a need for more research on the relation between the health sector reforms and HIV/AIDS. What are the essential elements of public and private health systems that can successfully confront the rapidly expanding pandemic? Another research area is to investigate the kinds of counselling and testing services that would have to be in place before AIDS drugs can really benefit the hidden numbers of people who live with the disease. There is a need for further research on how individuals’ compliance with ARV therapy best can be achieved.

Sida has given high priority to promoting the open recognition of the HIV/AIDS problem and encouraging the political will to organise active and coordinated efforts at the national level. In order to influence governments and national authorities, Sweden will promote research on the political, social, economic and legal aspects of HIV/AIDS, including the consequences for national development. The possibility of initiating national and/or regional policy research on the factors that facilitate or prevent political commitment will also be actively explored.

The World Bank and the International Monetary Fund (IMF) introduced Structural Adjustment Programmes (SAPs) in Africa during the 1980’s and early 1990’s in order to reform declining economies. The programme aimed at a liberalisation of the market. Governments were to withdraw from all direct involvement in agricultural marketing and input supply, including the removal of subsidies. Fee-paying regimes in education and health were introduced. Furthermore, liberalisation of trade, prices and foreign exchange rates and privatisation of industries were also part of the programme. The expansion of SAPs was rapid. Over the course of the 1980’s, 32 out of 44 sub-Saharan African countries entered into a World Bank SAP.

Researchers who have studied the impact of SAP on various countries argue that the adjustment related policy changes in the 1980’s gave rise to situations that placed a large number of people at an increased risk of HIV infection. For example, without agricultural subsidies, many farmers have insufficient surpluses and thus migrate in search of work, which exposes them to an increased risk.

SAPs also mandated cutbacks in spending on health care and other social services. So far, studies have shown diverse pictures of the impact of the health sector reforms on the quality of care (Collins et al. 1996; Creese and Kutzin 1995; Gross 1992). Most experiences show the negative effects of the fees on utilisation (Haddad and Fournier 1995), especially by disadvantaged groups, who already had poor access (McPake et al. 1993). For example, when Kenya implemented a charge for STD services in public clinics, attendance fell 35-60 per cent (Moses at al 1992). Similar decreases in clinic utilisation after the introduction of user fees have been reported in Ghana, Mozambique, Zaire, Zambia and Zimbabwe (Waddington and Enyimayew 1989). It has been argued that one of the consequences of structural adjustment programs has been a deterioration in the position of women, thus worsening gender equality (Whiteford 1993; World Bank 1995). The same negative consequences may also effect youth generally in a number of ways.

Whitehead et al (2001) argue that the actual outcomes of previous and current market-oriented reforms have often been contrary to stated objectives, as economic access for poor people has declined and total costs increased. These gaps between stated objectives and outcomes have shown the need for a firmer evidence base for health-sector policies. The overall view is clouded by rhetoric and unsupported assumptions about the merits of policies that are widely advocated.

There is thus a need for policy research to assess the validity of assumptions that underlie market-oriented reforms, as well as the options for, and constraints on, development of efficient and equitable health-care systems. As formulated by Segall (2000):"The research community has an important part to play in distinguishing myths from realities and making explicit the underlying values of proposed policies". Affordability should have a more important place in investigation of health reform. Policy oriented research is needed to assess promising options, for example community based health insurance subsidised by public funds.

Effects of reform efforts need also to be assessed from a household perspective. What do health reforms mean for households with different incomes? How affordable are the results of different policy options for families? How do reforms affect the ability of different population groups to secure health services according to need? Qualitative studies are needed to fully understand all the factors involved in these decisions.

There are a number of fear driven policy responses to the epidemic in some countries, such as mandatory and compulsory testing, quarantine, discrimination in the areas of employment, housing and health care. Such policies are not only ineffective in slowing the epidemic, but they can also be violations of international human rights standards and law. A few researchers have examined policies indirectly related to the epidemic such as criminalisation of homosexuals and sex workers. In some countries there are legal restrictions and other barriers to the free flow of information about sexuality and restrictions on the provision of services such as access to clinics and the provision of condoms. Many countries do not allow the distribution of condoms to adolescents and in those countries there is therefore a critical gap in prevention efforts (Mann and Tarantola 1996).

Some researchers have also begun to examine broader political and policy realities that create a context of societal vulnerability to HIV/AIDS. For example, gender related discrimination is often supported by laws and policies that prevent women from owning land, property and other productive resources. Research has shown that this contributes to making the impoverishment of women and thus increases their vulnerability to HIV infection. Furthermore, gender discrimination creates significant barriers to women’s ability to seek and receive care and support (Ankrah et at 1996).

Caldwell (2000) comments on the silence surrounding the AIDS epidemic in many African countries and the failure of governments to speak out. He argues that the AIDS epidemic can be defeated but in order for this to happen national governments have to be outspoken and active. UNAIDS Report (2000) argues along the same lines and says that to be effective and credible, national responses require the persistent engagement of the highest levels of government. Countries that have adopted forward-looking strategies to fight the epidemic are reaping the rewards in falling incidence. The report concludes that successful national responses have generally comprised the following features: (1) Political will and leadership; (2) Societal openness and determination to fight against stigma; (3) A strategic response. The development of a country strategy begins with an analysis of the national HIV/AIDS situation, risk behaviours and vulnerability factors, with the resulting data serving to prioritise and focus initial action; (4) Multisectoral and multilevel action – only a combined effort will mainstream AIDS and establish it firmly on the development agenda; (5) Community-based responses (6). Social policy reform to reduce vulnerability – Issues such as gender imbalance and the inability of women to negotiate when, how and with whom they have sex is a social policy issue that needs to be addressed; (7) Long term and sustained response – even a comprehensive response to HIV/AIDS does not yield immediate results. Therefore, a long-term approach must be taken, which involves building societal resistance to HIV; (8) Learning from experience – the last fifteen years of HIV prevention and care have led to the development of much expertise. Drawing on best practice and adapting it to local circumstances is valuable and to scale up successful local responses to a national level is also important; (9) Adequate resources – the reassignment of national priorities must be reflected in a reallocation of budgets.

Evidence shows that the combination of the above described approached have brought about a lowering of incidence in some countries. For example, Uganda has brought its estimated prevalence rate down to around 8% from about 14% in the early 1990’s with strong prevention campaigns (including condom promotion). Uganda’s government was the first one on the continent to recognise the danger of HIV to national development and President Yoweri Museveni took active steps to fight its spread through action by the Government and other groups in society.

Successful programmes involve multisectoral and multilevel partnerships between government departments and between government and civil society. Ministries of Education and Health need to collaborate and use their budgets to implement joint prevention programmes.

Sweden has ratified a number of relevant Human rights Conventions including the Convention on the Rights of the Child. These conventions offer a starting point for global efforts against the epidemic. Partner countries will be encouraged to conform to international law on human rights and to undertake legal reforms where necessary. In line with the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), partner countries will be encouraged to ensure that women are protected against sexual violence, abuse and exploitation and to recognise that this right is central to efforts to combat the epidemic. Strengthening the inheritance and tenure rights of widows and orphaned children is also necessary to enable them to continue to live their lives with quality and dignity. Sweden will discourage stigma and discrimination towards people living with HIV/AIDS and towards people affected by the epidemic, especially children and young people.

The United Nations General Assembly held a special session in New York in July 2001 where it was stated that a lack of respect for human rights is driving the spread of the AIDS epidemic. It was further stated that strengthening the status of women and increasing their participation in decision making and protecting children orphaned by the disease are central to effective intervention. The Assembly urged governments throughout the world to ensure that at least 90% of all young people aged 15 to 24 years have access to youth specific AIDS education by 2005 (McLellan 2001).

AIDS is surrounded by fear, ignorance and denial that has led to stigmatisation and discrimination against people living with HIV/AIDS, as well as their family members and caregivers. Fear of being identified with HIV often keeps people from seeking to know their sero-status, as well as changing unsafe behaviour, or even caring for people living with HIV/AIDS. Both women and men who are HIV positive often face severe discrimination in the household and the community, yet women living with HIV/AIDS face "double jeopardy" as a result of gender and health-related discrimination. Instances have been cited where family members encourage a husband who is asymptotically HIV positive to leave his wife with AIDS and find another one. Often children are forced out of the home as well (Danziger 1994). Furthermore, women are often blamed for spreading both STDs and HIV (Schoepf 1991, Laver 1993, Mogensen 1995).

There is a need for research on the underlying factors that allow stigma and discrimination to occur and be perpetuated. There is also a need to know how stigma and discrimination are manifested among women and men in various communities and institutional settings and find out what strategies women and men living with AIDS use to deal with their situation. Furthermore, it is important to know if institutions, such as hospitals, schools, churches, workplaces and governments contribute to or diminish stigma and discrimination.

Young girls are particularly vulnerable to sexual transmission of HIV due to an interplay of biological, cultural and economic factors. Girls are more likely to be uniformed about HIV, including their own biological vulnerability to infection if they start having sex at young age. Girls are far more likely than boys to be coerced or raped or to be enticed into sex by someone older, stronger or richer. The phenomenon of "sugar daddies" is well known, in which mature men offer schoolgirls gifts or money in return for sex (Basset and Sherman 1994). Domestic violence reduces women’s control over their exposure to HIV. A study in Zambia (UNAIDS, June 2000) shows how subservience in marriage, often reinforced by violence, can compromise women’s ability to protect themselves. Fewer than 25% of women in the study believed that a married woman could refuse to have sex with her husband even if he had been demonstrably unfaithful and was infected. Only 11% of the women thought a woman could ask her husband to use a condom in these circumstances.

Like domestic violence, sexual violence directed against women is very common all over the world, although statistics are few and unreliable. A study in a low-income area of Nairobi, Kenya describes women’s reluctance to report sexual violence even when it is extremely common in the community. Some 30% of the women over 18 years of age said they had been sexually abused, as had one-fifth of teenage girls, but most of them took no action (UNAIDS, June 2000). Sexual abuse in childhood has many long-term consequences, apart from the immediate risk of HIV and other sexually transmitted diseases. Such experiences have implications for the further spread of HIV.

It has been suggested that action research in bringing together researchers, community activists and special interest groups is the most viable research form on gender violence and gender relations in various forms (Heise et al. 1994). There is a need for both research on, and for, policy regarding these difficult issues. If discrimination and violence against women are supported by laws and policies preventing women from taking their partners to court, or from owning land, property and other resources, there is a need to alert political leaders and to conduct research that can assist policy makers in changing discriminatory laws and policies.

From the beginning of the AIDS pandemic, non-governmental organisations (NGOs) and community-based organisations (CBOs) have been in the forefront of working with community groups and local authorities. Their roles have been acknowledged by governments, donors and international agencies; and some support has been provided to them. An example of a good initiative is the Salvation Army Chikankata Hospital programme in Zambia (Mutonyi 2000, Salvation Army Chikankata Hospital 2000). The hospital staff, has through a concept of shared responsibility, initiated a programme that builds on and strengthens local social structures and organisations. This has led to an AIDS care and prevention programme that has been studied and replicated by other service organisations in Zambia and neighbouring countries. The programme incorporates diagnosis and counselling for affected individuals; provides home-based care, education and counselling for families and communities and attempts to strengthen food security and related concerns.

Organisations in Uganda are among the most experienced in terms of offering community based prevention. The work of The AIDS Support Organisation (TASO) is well documented. This organisation is run by and for local communities and there is a clear link between HIV/AIDS care, support and prevention. Another organisation in Uganda is ACORD, which runs an integrated rural development programme focusing on income-generating activities. They have added an HIV/AIDS component that offers counselling, support for people living with HIV/AIDS, education and training and makes referrals to TASO for HIV testing. ACORD has specifically addressed gender-related problems confronting women whose partners or family members die from AIDS, such as the issue of inheritance and land rights, by working with the Uganda Women Lawyers Association. This collaboration has resulted in an increasing number of women being able to retain property after the death of their spouse (UNAIDS/99.16E). Unfortunately, the impact of the process of community mobilisation in many of these programmes has not been evaluated.

Many social science researchers refer to community-based activities as a prerequisite for successful HIV interventions (Schoepf 1991, Norr et al. 1992, Weeks, Singer and Schensul 1993, Lyttleton 1994, Preston-Whyte 1995b). Friedman and O’Reilly (1997) propose socio-cultural interventions in which the community at risk rather than the individual at risk, is the unit of analysis, and the community is also the target for and hopefully the agent of social change. They have observed that gender differences in access to, control over, and use of scarce resources seems to determine how HIV is spread in a society, and they suggest that decisions about the use of power and influence will determine community responses to the AIDS epidemic. Community based programs can address HIV/AIDS in a broader context than for example school programs who do not reach adolescents out of school. Several studies have shown that adolescents want increased communication with adults on sexual matters (Weiss et al 1996). More research is needed to design and test interventions that establish constructive roles for adults in community setting (such as parents, other family members, teachers, health service providers and community leaders) in which they can contribute to the healthy development of youth. Furthermore, it is important to mobilise communities against sexual violence.

Sida’s strategy document (1999) states that the effects of HIV/AIDS in terms of increased illness and mortality in the productive age groups creates difficulties for development planning in many sectors as well as the health sector, for example in agriculture and education. There is a need for scientifically based studies for prognostication and planning. Bilateral development cooperation should be prepared to support such research on request from partner countries.

There are a number of household coping studies in relation to HIV/AIDS from various countries (Topouzis and Hemrich 1996, Bond 1998, UNAIDS 2000) but few studies address issues at sector or macro level, in particular in a long-term perspective. It is extremely difficult to measure the macroeconomic effects of the epidemic. Many factors apart from AIDS affect economic performance and complicate the task of economic forecasting – drought, internal and external conflict, corruption, economic mismanagement. Despite incomplete data, there is growing evidence that as HIV prevalence rates rise, the gross domestic product (GDP) falls significantly (de Vylder 1999; UNAIDS 2000).

The direct costs of HIV/AIDS are largely associated with the later stages of the disease. Compared with many other diseases that can be cured, AIDS is costly because many of the associated opportunistic infections are expensive to treat (de Vylder 1999). According to several studies, the indirect costs account for about 80 per cent or more of the total costs of AIDS (Bromberg et al. 1993). This is much higher than corresponding figures for most other diseases. This can be explained, according to de Vylder (1999), by the fact that on average, AIDS causes disability and premature death among a younger and more productive population than is the case for most other diseases.

The impact of AIDS at household level is severe. Households bear the burden of looking after sick family members and relatives. For example, Zambia’s National AIDS Control Programme (NACP) calculated that in 1996, 6,5 percent of all Zambian households were caring for chronically ill family members. Many households are caring for one or more orphans. In the most badly affected countries in Africa, over ten percent of all children are expected to become orphaned by HIV/AIDS before they reach eighteen. Many households loose monetary contributions from sick kin, as well as their own labour and income generating capacity. Additional economic losses are imposed on families through income lost by those who have given up their work to look after relatives with AIDS. Eventually, as the AIDS patient dies, additional expenditures are made for the funeral and the productive capacity of the household is permanently reduced. Socio-cultural practices may further aggravate the problems of the household, for example that the surviving spouse cannot maintain access to the property of the deceased (Egal and Valster 2001). Household coping studies in Kagera, Tanzania (World Bank 1997) reveal that households are likely to spend more on funeral expenses than medical expenses for both men and women, whether the cause is AIDS related or not. Albeit, for men who had AIDS, the funeral expenses were overshadowed by medical expenses. In general households tended to spend more on both medical and funeral expenses for men than for women.

Studies also show that women are likely to be disproportionately affected by the impact of HIV/AIDS when a male head of household falls ill. As a result of the loss of income from a male income-earner, women and children may be required to seek other sources of income. But there are also other coping strategies, for example, sending one or more dependent children to live with relatives, or inviting an unmarried uncle or aunt to join the household in exchange for assistance with farming and household tasks. However, the extended family network comes under severe pressure in communities with a high prevalence of AIDS (Danziger 1994). In instances where a male head of household has died, studies show how some women face a tragic set of circumstances in terms of loss of social support from family members, ostracism by the community and lack of legal protection to inherit land and property (Danziger 1994, King and Hill 1993, Barnett and Blakie 1992). Furthermore, in many areas of Africa a woman is inherited by the husband’s brother when the husband dies. There are cases where a husband’s family may blame a widow for the death and refuse to accept her or her children into their family support system. In communities where women are responsible for subsistence farming, a woman’s invalidity will result in decreased cultivation and reduction in food availability to the household (Danziger 1994; Levine et al 1996).

There are more than 12 million orphans in Africa today due to the AIDS epidemic. This overwhelming number of needy children has meant that kin support structures can no longer cope. Traditionally, children in many African countries would be taken care of by relatives if their own parents passed away, but this is no longer the case.

Children who have lost one or both parents to AIDS also face more problems than other orphans. According to UNAIDS (June 2000) AIDS orphans are at greater risk of malnutrition, illness, abuse and sexual exploitation than children orphaned by other causes. They also have to grapple with stigma and discrimination so often associated with AIDS. Often they are not able to go to school or have access to other basic social services.

UNAIDS (June 2000) states that there is a consensus that help for orphans should be targeted on supporting families and improving their capacity to cope, rather than setting up institutions for children. Orphanages may not in the long term be a good solution. Moreover, in a subsistence economy, children sent away from their village may lose their rights to their parent’s land and other property as well as their sense of belonging to an extended family.

The impact of the epidemic on agriculture is related to people’s livelihoods and varies according to different ecological zones, farming systems and stage of the epidemic. It may result in a shift from cash crops to less labour-intensive food crops, to more basic and less varied food production or to a reduction of productivity and cash income with adverse effects on household food security (FAO 1995). Research carried out in Uganda showed that food insecurity and malnutrition (rather than medical treatment and drugs) were foremost among the immediate problems faced by female-headed AIDS affected households (Topouzis and Hemrich 1996). This further aggravates the situation, as good nutrition is of great importance to people suffering from HIV/AIDS including children and pregnant and lactating women.

Another challenge in rural areas is passing on knowledge to the younger generation. Studies have found that orphaned children are rarely able to cope with the agricultural tasks left to them. In a Kenyan study, four out of five orphans who were farming in one rural area said they did not know where to go for information about food production (UNAIDS 2000).

Children’s education is likely to suffer from the death of parents. Studies from several countries indicate that orphans, especially orphaned girls, tend to have significantly lower enrolment rates than other children. Girls are often withdrawn from school before boys to fulfil household duties when need arises and girls are likely to be withdrawn from school to fill the gaps in food production in instances where outside workers cannot be hired due to the depletion of household economic resources (Levine et al 1996; King and Hill 1993).

Even for those who do attend school, AIDS undermines their learning prospects. In some countries, the teacher mortality has increased ten times and absence due to ill health has reduced teaching time and quality. UNICEF estimates that 860,000 children in Africa have already lost their teachers due to AIDS (UNICEF 2000). In Botswana, death rates among primary school teachers rose from 0.7 per 1000 in 1994 to 7.1 in 1999. The losses are not easily replaced. In Zambia and South Africa, for example, the entire output of teacher training colleges each year will not be enough to replace teachers lost to AIDS (UNAIDS 2000).

Not much research has so far been carried out on the effects of HIV/AIDS on employment, productivity, profits and investments in the private sector. There are a few exceptions. A study among miners in southern Africa in 1999 found that over a third of employees in their late 20s and 30s were infected with HIV, along with a quarter of young and older employees. Rates among workers in other sectors are similarly high, at least in South Africa. In a sugar mill, 26% of all workers were living with HIV. Rates are often higher among unskilled workers than among managerial-level workers. The lost productivity associated with this level of absenteeism, the clinic and hospital cost and the training and pay for new workers to replace those who were sick cost the sugar mill an average of USD 1000 per sick worker (UNAIDS 2000).

De Vylder (1999) argues that the impact on private enterprises largely depends on whether production is demand or supply-constrained. If lack of effective demand is the limiting factor, loss of staff due to AIDS may not be a big problem. In many African countries undergoing structural adjustment, "downsizing" of both public and private enterprises has been common and loss of manpower due to AIDS has largely replaced retrenchment of workers. But even if labour is available to replace losses because of AIDS, enterprises are likely to face other kinds of costs in line with those mentioned above. A cost that is of both private and public character is the loss of transfer of knowledge between experienced workers and young employees. There is not much known about private businesses coping strategies. Educational campaigns and free distribution of condoms are reported from some private enterprises, including commercial agricultural farms but little research has been carried out to evaluate these initiatives.

Social science researchers have stressed the importance of using participatory and interactive methods in HIV prevention and mitigation (Rivers and Aggleton 1993, Weiss et al 1996, UNAIDS/99.2, Freudenthal 2000). Several studies show, for example, that involving young people in the research process improves the relevance of the research. The research agenda responds to the young peoples’ own needs and problems and encourages them to participate in the intervention inputs. It is also proven to be important to involve the target group in program design and implementation (Weiss et al 1996).

Many social scientists (Shoepf 1995, Preston-Whyte 1995, Weeks, Singer and Schensul 1993, Obbo 1999, Freudenthal 2000) propose action research as an approach that works well in HIV prevention. Action research can be defined as a process that involves the researchers (as facilitators) and the people in interpreting, reflecting on and creating interventions together for positive change. Culture is thus viewed not as an obstacle but as a process of change in which local knowledge and social organisation can be used to create new values in support of risk reduction. A study in Zambia used interactive video as an action research approach in HIV education, where people were given a chance to reflect, communicate and engage in dialogue about sex and HIV prevention. The findings suggest that people were able to change their behaviour as a result of the interventions. Furthermore it stressed the importance of HIV education to be contextualised and built on indigenous knowledge and local cultural concepts (Freudenthal 2000).

A distinction can be drawn between two kinds of social science research related to HIV/AIDS, one provides insight and understanding of causes and effects and of the specific contexts driving the pandemic (contextual enquiry). The other is more operational, being concerned with the testing and application of interventions and intervention programmes in specific cultural settings (intervention research).

In the field of intervention research, much interest has been devoted in latter years to what O'Reilly and Piot (1995) call structural, or enabling, approaches to interventions and what Sweat and Dennison (1995) call structural and environmental interventions. Such interventions have focused on trying to create alternative employment opportunities for women. In Zambia, for example, women fish traders who often experience sexual exploitation in their commercial transactions with men have been supported in forming economic co-operatives, as a way to avoid having to exchange sexual services for money or transport (Msiska 1994).

It can be argued that what is needed now is to a large extent good intervention research, as a wealth of contextual enquiries have paved the way for more action oriented approaches. There is also a need to develop methodologies suited to the evaluation of enabling interventions.

This literature review shows that substantial social science research has been conducted on HIV/AIDS. There are research gaps that will be exemplified below, but much is already known. We know what kinds of socio-economic contexts are driving the pandemic (in which poverty and gender inequality are the main forces) and that an interplay of factors are facilitating sexual transmission. Among these factors are: little or no condom use; a large proportion of an adult population with multiple partners; overlapping (as opposed to serial) sexual partnerships; wide sexual networks (often due to work migration); women’s economic dependence on marriage or poverty driven commercial sex work and their lack of power in negotiating sexual relationships; age differences between sexual partners - typically older men and young women or girls; high rates of sexually transmitted infections, especially genital ulcers. At the same time research shows that most people in Africa have a good knowledge about AIDS.

This chapter begins with a discussion of research needs in social science on HIV/AIDS related to local contexts, gender, mitigation and poverty and scaling up and thereafter further research needs are identified within the four specific areas delineated by Sida/SAREC. The list of further research needs should be seen as examples of what needs to be done, rather than an exhaustive list. Finally, some key challenges that need to be met for HIV/AIDS prevention and mitigation programmes to be successful are highlighted.

• As most prevention efforts still focus on increasing individual awareness about risks of transmission and promoting individual risk reduction through a variety of means, there is a need to conduct more research on specific socio-economic, cultural and political factors that both strengthen and inhibit the capacity of particular societies and sub-cultures to deal with the epidemic.
• Comparative case studies of the development of HIV/AIDS in similar kinds of environments would be useful in order to gain a clearer picture of the contextual as well as general factors affecting the course of the epidemic. The profile of the epidemic could then be traced in each case and for each stage it could be documented how different groups were affected, how society responded and what social changes have occurred^[2].

• It is only by targeting both women and men that gender relations can be effectively addressed in an effort to reduce risk and vulnerability to HIV/AIDS. A better understanding of how to enhance both female assertion and male attitudes of sexual responsibility is needed.
• There is need for more research on how gender influences men’s knowledge, attitudes and sexual behaviour. It is important to develop a better understanding of risk-taking behaviour among men and what can be done to change risky behaviour.
• It is important for research to gain a clearer understanding of how gender influences men’s and women’s roles in mitigating the impact of AIDS and what actions can promote the development of responses in which women and men share the burdens of the epidemic more equitably.

• HIV/AIDS mitigation can only be successful if investments in prevention and care are combined with continued support for national poverty reduction efforts and for action to address the developmental impact of the epidemic. For example, improving women’s incomes increases their power in all aspects of life, including control over sexuality.

• There is an urgent need to expand and replicate experiences from home-based care programmes in Africa. Research and development is needed for affordable, feasible and sustainable home care programmes that can be implemented by staff working in government, NGO and other organisations.
• There is a need for researchers to work in collaboration with NGOs and other organisations, in terms of evaluation and promotion of scaling up through national coordination bodies.

• There is a need for more research on specific socio-economic contexts, in particular an understanding of gender differences in socialisation of young people into sexuality. There is also a need to generate more knowledge on young men and women’s perceptions of sexuality and gender relations. Problems of communication about sexuality and within sexual negotiation need to be addressed. It is important to understand the factors and processes that constrain or enhance communication and dialogue among young people. In this regard, promotion of SRH education for both in and out-of-school youth is important.
• As condoms still provide the most useful means of preventing HIV transmission, research is needed to identify non-stereotypical images and messages that might appeal to men and women and encourage increased condom use. There is also a need to find ways to strengthen women’s sexual negotiations skills.
• It is vital that research focuses not only on the way in which dominant norms place young peoples’ sexual health at risk, but also on the ways in which particular young people resist these norms, sometimes leading to alternative and less risky sexual behaviours and practices.
• Media studies are still needed. What role does media such as radio, TV, newspapers and magazines play in young people’s lives in different parts of Africa? Does it help young people to modify their concepts of masculinity and femininity and their relation to sexuality and risk?
• Critical elements of peer education needs to be researched more: how to best influence policy-makers; how best to select, train and supervise educators; how to address gender and cultural factors; how to scale up programmes and how to sustain peer education activities.
• There is also a need for more research on how to make reproductive health services more user-friendly for young people. Privacy, confidentiality, affordability and accessibility in terms of hours of operation and location are important research topics. The gender differentiation in early treatment seeking needs to be addressed.

• There is a need for more research on the relation between the health sector reforms and HIV/AIDS. What are the essential elements of public and private health systems that can successfully confront the rapidly expanding pandemic?
• Another research area is to find out what kinds of counselling and testing services need to be in place before AIDS drugs can really benefit people who live with the disease. There is a need for further research on how individuals’ compliance with ARV therapy can best be achieved.

• There is a need for policy research to assess the validity of assumptions that underlie market-oriented reforms and the options for and constraints on development of efficient and equitable health-care systems. Affordability should have a more important place in investigation of health reform, particularly at the household level.
• Policy oriented research is needed to assess promising health care options, for example community based health insurance subsidised by public funds.
• Specific policy approaches in countries that have been relatively successful in containing or mitigating the epidemic, should be examined for lessons learned and general applicability.
• There is a need to understand and mitigate the underlying factors that allow stigma and discrimination to occur and be perpetuated. There is also a need to know how stigma and discrimination are manifested among women and men in various communities and institutional settings and find out what strategies women and men living with AIDS use to deal with their situation. Furthermore, it is important to know if institutions, such as hospitals, schools, churches, workplaces and governments contribute to or diminish stigma and discrimination.

• It is important to know how people in specific social settings finance care for those living with HIV/AIDS. Are shifts in land ownership occurring, are households giving up access to land in return for needed resources and what effect does this have on local social and political structures? There is a need to analyse the impact of the epidemic on subsistence farming systems in various parts of Africa. What happens when family members no longer are able to carry out subsistence activities by themselves? Are other forms of unpaid labour exchange filling the gap? Are people shifting crops? What implications does this have for food security on village and regional level? In more general terms, how are rural economies coping with changes in the labour force?
• There is a need for more research on the effects of HIV/AIDS on the educational system in various countries and what can be done to mitigate the impact of the epidemic. How for example are specific education systems carrying out their mandates despite the human losses due to AIDS? And how are communities and households dealing with the loss of adults who play a key role in the process of informal education?
• There is need for research on AIDS and the workplace. Some workplaces have had educational campaigns including free distribution of condoms, some have health insurance schemes; others mandatory testing for recruitment and advancement none of these initiatives have been evaluated.

The research gaps identified above are not the main obstacle to successful HIV/AIDS prevention and mitigation programmes in Africa. The knowledge how to prevent HIV transmission exists, but research results are seldom being implemented in prevention and care programmes. This fact was pointed out by Kallings already in 1998 who stated that the "greatest hindrance to successful prevention of further HIV spread is the lack of political will". The key challenge now is therefore to establish strong links between research, policy and planning. All research proposals should include plans for dissemination of research results to policy makers (not just in terms of organising a seminar or workshop, but concrete plans for specific prevention or programmes). But in order to make this happen, policy makers must also show commitment and willingness to listen to researchers and use research results in the design of projects and programmes. For example, research has shown that sex/health education in schools leads to delayed onset of sexual activity or reduced frequency of sexual activities overall, but many politicians, religious leaders and community leaders in many African countries continue to resist such school programmes. It is a challenge for the research community to convince the political leadership about the benefits of sex education. Concentrating on intervention research and using action research approaches where local communities are involved in looking for solutions to their own HIV/AIDS problems might be helpful in convincing policy makers about the appropriateness of the suggested programmes.

There is also a need for more co-ordinated, systematic and collaborative research. Research findings have to be shared and compared, to avoid duplication, and best practices scaled-up and instituted at national level. Researchers, NGOs and CBOs can show the way, but lasting results can only be achieved through government commitment and large scale programmes. In this process, African regional research networks could play an important role in co-ordinating systematic research and develop fruitful dialogue and collaboration with governmental institutions, such as national HIV/AIDS councils and policy makers.

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