A REVIEW OF SOCIAL SCIENCE RESEARCH ON HIV/AIDS

CEDAW The Convention on the Elimination of all forms of Discrimination Against Women

UNDP United Nations Development Programme

Around 22 million people have died from AIDS since the beginning of the epidemic and there are approximately 36 million people infected with HIV in the world today, of which about 70 percent live in Sub-Saharan Africa. Rates of newly acquired HIV infection are highest in the 15-19 age group, and the majority of infections in this group are girls. Concerted national and international efforts are therefore needed to prevent the spread of HIV, mitigate the effects of the epidemic and to break the silence that still continues to surround HIV in many countries.

In the early years of the epidemic, preventing HIV was seen as an issue of changing individual behaviour, or changing the behaviour of individuals in specific high-risk groups. Educational campaigns were initially directed to individuals, who were informed which behaviours would put them to risk for HIV. But this focus neglected the social contexts within which particular actions become meaningful and interventions often failed to elicit behaviour change. Social scientists therefore began to investigate individual behaviour as guided by a shared culture. It became more and more apparent that an understanding of the social, political and economic context within which AIDS is occurring is critically important.

Social scientists have made significant research contributions by examining how individuals and groups perceive risk and how culture influences risk behaviours in a wide variety of settings. Unfortunately this knowledge has seldom been disseminated in fora directed to policy makers. To date, most prevention efforts are still focusing on increasing individual awareness about risks of transmission and promoting individual risk reduction. Few HIV prevention programmes have been designed where the socioeconomic and sociocultural contexts in which individuals live are taken into consideration.

In studying economic and political settings connected with high prevalence of HIV/AIDS, social scientists have come to the conclusion that there is a clear link between levels of HIV/AIDS and poverty throughout the world. Whilst an impressive amount of research has been undertaken to study the impact of the epidemic, less has been achieved in mitigating its effects of deepening poverty and the rolling back of development gains. Discussions on the implications of HIV/AIDS for national development and policy have often been limited and both national and global development targets and goals have been formulated without taking into account the added challenges resulting from sharp increases in AIDS-related mortality rates.

To comprehend the behavioural dynamics of STD/HIV transmission, it is necessary to understand cultural constructions of women and men’s sexuality as well as the socio-economic context. A number of studies have shown the importance that gender roles play in sexual and reproductive health. Particularly, how ideologies of male dominance result in power imbalances that influence sexual risk behaviour and create barriers to behaviour change. A major criticism of some early AIDS prevention initiatives was that they failed to give enough attention to women’s economic and social subordination and thus the implications for their ability to negotiate safe sex. There is an increasing interest in “male involvement” studies in development research, but there is also a risk that “masculinity” studies become as one-sided as the previous “women in development” approaches. Research should rather investigate both women and men and the interaction between them.

As this literature review shows, substantial social science research has been conducted on HIV/AIDS during the last 20 years. There are of course research gaps, 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.

Sida/SAREC has identified four main areas of focus for social science research on HIV/AIDS: (1) protection of young people and future generations; (2) health care research; (3) research on and for policy and (4) the social and economic consequences of the HIV/AIDS epidemic. Within these four areas, aspects that need further research are:

In terms of young people, specific socio-economic contexts, in particular an understanding of gender differences in the socialisation of young people into sexuality. Furthermore, problems of communication about sexuality and sexual negotiations need to be addressed. As condoms still provide the most useful means of preventing HIV transmission, more research is needed on encouraging consequent condom use. Sex/health education for schools needs support and further research on the impact of media health messages is necessary. There is also a need for more research on youth friendly sexual and reproductive health services. Turning to health care, research is needed on the relation between health sector reforms and the HIV/AIDS epidemic. What are the essential elements of public and private health systems that can successfully mitigate the rapidly expanding pandemic? What kinds of counselling and testing services need to be in place for AIDS drugs to benefit people. Moreover, there is a need for further research on how individuals’ compliance with anti-retroviral (ARV) therapy can best be achieved. A main factor in research on policy, is that of compiling and comparing lessons learned in approaches by countries/communities that have been relatively successful in containing the epidemic and/or mitigating its effects. In terms of socioeconomic consequences, how are local economies coping with changes in the labour force (on household, village and district level)? How are educational and health systems carrying out their mandates despite the human losses due to AIDS? There is also need for research on AIDS and the workplace.

These research gaps are however not the main obstacle to successful HIV/AIDS prevention and mitigation programmes in Africa. The knowledge of how to prevent HIV transmission exists, but research results are seldom being implemented in HIV prevention and care programmes. The key challenge for the future is therefore to establish strong links between research, policy and implementation. All research proposals should include plans for dissemination of research results to policy makers. And policy makers in turn must show commitment and willingness to listen to researchers and use research results in the design of projects and programmes. 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 HIV/AIDS councils and policy makers.

The AIDS pandemic, now at the beginning of its third decade, is one of the most devastating diseases of our time. Concerted national and international efforts are needed to prevent the spread of HIV and to break the silence that still continues to surround the disease in many countries. The disaster caused by HIV/AIDS is unique because it deprives families, communities and entire nations of people at their most productive ages. The epidemic is deepening poverty, reversing human development achievements, worsening gender inequalities, eroding the ability of governments to maintain essential services, reducing labour productivity and supply and hampering economic growth in the countries worst affected for decades to come.

Around 22 million people have died from the disease since the beginning of the epidemic (UNAIDS Dec. 2000). The UNAIDS programme estimates that 5.3 million people became infected with HIV during year 2000, and that there are approximately 36 million people infected with HIV in the world today, of which about 70 percent live in Sub-Saharan Africa. UNAIDS further estimates that close to 15,000 people are infected with HIV every day. The proportion of female infected is becoming increasingly significant, with 55 per cent of the infections in Sub-Saharan Africa in 1999 occurring among women (UNAIDS, Dec. 2000). Rates of newly acquired HIV infection are highest in the 15-19 age group, and the majority of infections in this group are girls. The consequence of increased deaths of young people in some African countries has been to decrease life expectancy at birth by 15 to 20 years in southern Africa and 5 to 10 years in other parts of sub-Saharan Africa (WHO 2000).

As HIV/AIDS is an increasing health and development problem in the world, it will continue to occupy a significant place in Swedish development co-operation. The Swedish Government adopted in 1999 a strategic framework that should guide continued support to research on HIV/AIDS. The strategy document “Investing for future generations” (1999) describes the stance the Swedish Government has taken as part of international efforts to prevent and mitigate the impact of HIV/AIDS. The strategy focuses on activities and support that address both immediate and underlying causes of the HIV/AIDS epidemic as well as its immediate and long-term effects. Four strategic goals are established:

· To enable people to protect themselves against HIV infection (HIV Prevention)

· To encourage greater political commitment to HIV prevention programmes (Political Commitment)

· To allow people infected and affected by HIV/AIDS to pursue their lives with quality and dignity (Care and Support)

· To develop coping strategies to alleviate long-term effects (Coping Strategies)

Prevention in a broad sense and with future generations in mind is the mark of Swedish involvement. An emphasis has been placed on proactive involvement in order to reduce the spread of HIV and other related sexually transmitted diseases, and with a focus on youth. The framework stresses a multi-sectoral approach and views HIV/AIDS not only as a health problem, but also as a general development issue. Different kinds of research, in national and international cooperation, have a key role to play in the future control of the pandemic.

Sweden is but one contributor among many and it is therefore necessary to set priorities and choose areas of focus for future involvement in which inputs can achieve best results. In the light of earlier experiences and of developments during the past years’ preparatory work, a strategy for continued research cooperation was approved by Sida’s Research Board in1999. Highest priority is to be given to research that aims at:

The decisions on funding for biomedical research have been made already and are mainly continuations of previous support to different research groups. For the social sciences, further preparatory work was deemed necessary. In particular, the need was stressed for a programme of support to be firmly rooted in African research communities. It was thus decided that preparatory work towards a programme for the social sciences, should first and foremost investigate the possibilities of support to established African regional networks and associations.

Sida/SARECs strategy document for research on HIV/AIDS (1999:19) has delineated four main areas for social science research:

Within all four of these areas there are aspects that have been quite well researched and aspects that need more work. This review paper has been commissioned by Sida/SAREC, as a first step to identify what has been done, what needs to be done and how research can support communities, service providers, policy formation and decision-making with an emphasis on Africa. The review is based on almost 200 published and unpublished documents, but it is not meant to be exhaustive. It tries to highlight key trends, themes and issues that have emerged from recent literature within the four areas. The review begins with an overview of social science research on HIV/AIDS in Africa with a focus on poverty and gender inequality as factors driving the pandemic. Main trends in social science research within each of the four areas, along with lessons learnt, are then described. A number of the issues are crosscutting, thus the choice of heading is at times arbitrary. Thereafter, the issue of methodological approaches to HIV prevention is examined. In the last chapter, further social science research needs are outlined and challenges that need to be met for HIV/AIDS prevention and mitigation programmes to be successful are highlighted.

II. Social science research on HIV/AIDS in Africa

Historical perspective

In the early years of the epidemic, preventing HIV was seen as an issue of changing the behaviour of individuals, particularly in high-risk groups. Survey research was initiated to locate individual risk behaviours in knowledge, attitudes and practices (KAP) studies. Epidemiological models identified routes of transmission and patterns of transmission. Groups or categories of persons at highest risk were identified and interventions were specifically targeted towards those groups; e.g. groups of prostitutes, truck drivers, or injection drug users (Norr et al. 1992, Glick-Schiller et al. 1994). )

Psychological and social psychological theories such as the Health Belief Model (Becker and Joseph 1974, 1988), Social Learning Theory (Bandura 1977) and the Theory of Reasoned Action (Ajzen I and Fishbein M 1980, Fishbein and Middlestadt 1987) were applied in efforts to improve the educational campaigns (Friedman and O'Reilly 1997). These approaches posit that appropriate information, about risk behaviour and the risks involved in unprotected sex, to an individual will result in behaviour change. Such models and theories were developed in North America and Europe and have been criticised, even when applied in Northern industrialised societies, for neglecting the social contexts in which particular actions become meaningful (Singer and Weeks 1996) as well as for the assumptions they make about rationality (Aggleton 1996). Applying these models and theories to an African context poses even greater difficulties. For example, social norms, duties and obligations may be different in strength and kind to those encountered in Northern societies. Furthermore, these models may be inadequate in explaining sexual risk-taking in contexts where decision-making may be rooted in group processes of understandings and norms (Aggleton 1996).

Many social scientists therefore turned away from individual risk behaviour approaches and began to investigate behaviour as guided by cultural contexts (Schoepf 1991, Treichler 1992, McGrath et al. 1993, Streefland 1995, Connors and McGrath 1997). For example, notions of what it means to be a ‘real man’ in a particular social context can powerfully influence sexual risk behaviour. “Real men take risks”, as one man pointed out in a study from Nigeria (Orubuloye et al 1993). Furthermore, what may seem to an outsider to constitute sexual risk-taking, may be viewed differently from the perspective of the people involved. Such behaviour may be seen as quite normal and rational showing that one is "respecting or trusting one’s partner" (Aggleton 1996).

Social scientists have made significant research contributions by examining how individuals and groups perceive risk and how culture influences risk behaviours in a wide variety of settings (Ingstad 1990, Ford and Koetsawang 1991, McGrath et al. 1993, Frankenberg 1995, Schoepf 1995, Preston-Whyte 1995a). Unfortunately this knowledge is seldom disseminated with the goal of reaching and informing policy makers. To date, most HIV prevention efforts still focus on the individual’s perceptions and behaviour change. Few programmes have been designed where the social and economic context in which individuals live are taken into consideration (Collins and Rau 2000).

Poverty

Substantial research has been undertaken to study the impact of the epidemic, but less has been achieved in mitigating its effects. Discussions on the implications of HIV/AIDS among development experts and policy makers have been limited and both national and global development targets and goals have often been formulated without taking into account the added challenges resulting from sharp increases in AIDS-related mortality rates (Loewenson and Whiteside 2001).

AIDS is often called a disease of poverty. (Ankrah 1991, Schoepf 1991, Farmer et al. 1996, Aggleton 1996, Connors and McGrath 1997, UNAIDS/99.16E, Collins and Rau 2000). Poverty causes work migration and urban drift, and it causes women to engage in risky sexual practices, just to name a few examples. Many rural impoverished households have household members who work in urban or industrial areas or on large-scale, commercial farms. Being separated from their families for long periods of time, these people often find new sexual partners, or form new families. But employment opportunities in towns and industrial areas are usually very limited and this leads to the creation of an urban class of very poor men and women whose way of life may involve many sexual partners. For women, this can be a survival strategy, and as long as there are no realistic alternatives in terms of other income generating activities, women will continue engaging in risky sexual activities (Packard and Epstein 1991; Schoepf 1995; McGrath et al. 1993, Preston-Whyte 1995b, Aggleton 1996, UNAIDS 2000, Loewenson and Whiteside 2001, Collins and Rau 2000).

Kane et al (1993) gives an example from a study in some villages northern Senegal of the epidemiological relationship between migration and HIV status. The study found that 27 per cent of male work-migrants and 11 per cent their spouses were infected with HIV. In a control group of men and their wives who had not travelled outside Senegal in the last 10 years, only one man and one woman was infected with HIV.

Gender inequality

Gender refers to the socially constructed relationship between women and men. Gender determinants are deeply rooted in social norms that ascribe to women and men a distinct set of productive and reproductive roles and responsibilities. Thus to comprehend the behavioural dynamics of STD/HIV transmission, it is necessary to understand cultural constructions of women’s and men’s sexuality as well as their socio-economic context (Kippax et al. 1995; Lear 1995; Orobaton and Guyer 1994; Santow 1995; Taylor 1995). A number of studies have shown the importance that gender roles play in sexual and reproductive health. Particularly, how ideologies of male dominance result in power imbalances that influence sexual risk behaviour and create barriers to behaviour change (Catania et al. 1992; Haram 1995; Obbo 1995; Lear 1995; Paivia 1995; Pleck et al. 1993; Silberschmidt 1991; Talle 1994; Wood and Jewkes 1997, UNAIDS 1999).

Poverty and gender are intertwined in relation to HIV/AIDS. It is poor women and men that are most susceptible to HIV infections. Seventy percent of the world’s poor are women. Women are more vulnerable to HIV/AIDS because they have less secure employment, lower income (if any), less access to health care and social security, less entitlement to assets and savings and little power to negotiate sex. They are more likely to be poorly educated and have less access to land and credit than men. But poverty and socio-cultural norms and values are not the only reasons why women are more at risk of HIV infections, there are also biological reasons. Researchers have also pointed out that women are more susceptible to STDs in general because of the mucous membrane that creates a thriving environment for any type of infection, including HIV (Plummer et al. 1991).

A major criticism of some early AIDS prevention initiatives was that they failed to give enough attention to women’s economic and social subordination and the implications of this for their ability to negotiate where, when and how sex took place (UNAIDS 1999). McGrath et al. (1993) gives an example from Uganda, where they found that women were well aware of the risk reduction messages given by AIDS control programs, but because these messages failed to provide them with realistic alternatives, they continued to be at risk. People were told to use condoms, but since these women’s partners refused to have sex, if the women insisted that they use condoms, this risk reduction message offered no real option for reducing risk of infection. Similar findings have been reported from other studies in many other countries such as Uganda, Zambia and Zaire (Wallman 1998, Bond and Dover 1997, Schoepf 1995).

The exchange of gifts has considerable significance in the creation and maintenance of social relationships, especially sexual relationships among many groups of people in Africa. Haram (1995) reports from a study amongst the Meru people in northern Tanzania, that for most young Meru women, sexual relationships are their only means to gain access to items like soap, body lotion, shoes, nice dresses and money. Before marriage, both women and men tend to have many sexual partners. According to Haram, there is high level of AIDS awareness among the Meru, but many women are still tempted to enter sexual relationships because of the gifts men can offer them. From a Western point of view gifts in return for sex may appear close to sex working, but it is not. People make a sharp delineation between gifts and the purchasing of sex. Gifts occur within a relationship, however short, rather than as a commercial transaction (Dover 1995).

Approaching sexual and reproductive health through interventions that target on changing negative aspects of gender roles is part of current international policy. Female empowerment was a major issue in the Cairo International Conference on Population and Development’s Programme of Action (UNFPA 1995). Women’s rights were linked in the document to promoting attitudes of male responsibility through greater participation of men in sexual and reproductive health, as well as in family welfare. This latter goal, reflects an increasing interest in “masculinity” and “male involvement” studies in development research (Hawkins 1992; Kippax et al. 1994; Orobaton and Guyer 1994; Ray et al. 1998; Setel 1996; Sweetman 1997; Silberschmidt 1991; Talle 1995). However, there is a danger that “masculinity” studies become as one-sided as the previous “women in development” approaches. Research should rather investigate both women and men and the interaction between them.

III. Research on protection of young people and future generations

Promoting safer sexual behaviour and gender equality among young people is an important goal in the Swedish strategy document “Investing in future generations”(1999:34). Most young children in Africa are still not infected with the HIV virus and youth have a better potential for sexual behaviour change than older people. What then is already known about these issues and in which areas is research still needed?

Gender and sexual and reproductive health

A number of studies have been carried out in East and Southern Africa to determine trends in sexual and reproductive health knowledge, attitudes, practices and behaviour among young people. These studies show major gaps in many young people's knowledge of sexuality and reproduction (Baggaley 1996; Kasule et al. 1997; Lema and Hassan 1994; Macwang’i 1993; Mbizvo et al. 1995; Ndubani 1998, Muvandi et al 2000). Major obstacles to improving young people’s knowledge of sexual and reproductive health are social attitudes, particularly the prohibitive silence around sexuality and the censure of pre-marital sexual relations.

Studies show that contemporary age of sexual debut has decreased in many African countries. For example, in Zambia sexual debut can be as early as 10 years for girls and 12 years for boys and by their mid-teens most Zambian adolescents are sexually active (Feldman 1993; Webb 1997; Zambia DHS 1996; Muvandi et al 2000). Other studies from East and Southern Africa show similar data on early sexual activity (Illinigumugabo et al. 1994;Helitzer-Allen 1994; Matasha et al. 1998; Mbizvo et al. 1995; Tawuo et al. 1998). Given the age differences found between young girls and some of their sexual partners, early sexual debut obviously exposes the young sexually active population to STDs and HIV. Early sexual debut also has implications for knowledge about sex and reproductive health and for sexual negotiation.

Men’s and women’s knowledge, attitudes and related sexual behaviour are highly influenced by gender norms and expectations, which can contribute to an individual’s risk of HIV infection. Many HIV prevention programmes continue to work solely with women in an attempt to empower them in sexual relationships. But since women’s ability to control and sustain their sexual health is often limited, it is important to involve men as well in prevention efforts. As argued by Long and Ankrah (1996): “Women’s empowerment cannot be achieved by women alone, but requires the support of men for its successful realisation”. Research suggests that men usually control sexual decision-making. In many cultures, coercive sex and sexual violence are not unusual (Wood and Jewkes 1997, Muvandi et al 2000). Sexual responsibility among men is therefore central to the health of both men and women.

According to many researchers there is a need to generate knowledge on young men and women’s perceptions of sexuality and gender relations (Bledsoe and Cohen 1993; Kippax et al 1994; Lear 1995; Obbo 1995; Paiva 1995; Webb 1996 et al.; Ray et al. 1998). This type of research is not easy to conduct and Orubuloye et al (1997) argue that there has been a constant failure to enquire into men’s belief systems in relation to sex and sexuality. Research is needed on what messages appeal to men and what the key factors are in motivating men to engage in safer sexual practices. There is also a need for research focuses to go beyond the ways in which dominant norms and youth culture place young peoples’ sexual health at risk, and to also investigate the ways that particular young people resist those norms (Aggleton and Campbell 2000).

Communication about sex and AIDS

In many African societies speaking about sex is traditionally taboo between parents and children. Previously, sexual education was given through initiation rites and/or by the grandparental generation. These practices are dwindling, though there are some ongoing experiments in utilising tradition for sexual education (Ahlberg 1997; Fuglesang 1997). In Zimbabwe information about puberty and growing up was traditionally the responsibility of the paternal aunts for girls and the maternal uncle for boys. Two studies (Basset and Sherman 1994; Wilson et al. 1995) suggest that this system is no longer functioning because of the mobility and divisions in education and wealth in modern society. These days young people often find out about sexuality and reproductive health from varied and sometimes unreliable sources such as the media, friends and older peers (Ahlberg 1994; Mudenda 1992). This results in a combination of some knowledge along with misconceptions about sexual and reproductive health problems including STD/HIV (Baggaley 1996; Kasule et al. 1997; Ndubani 1998). A further problem is that formal information given to young people does not always meet their expectations and concerns (Ahlberg 1994, 1997; Baggaley 1996; Fuglesang 1997; Mudenda 1992; Williams et al. 1997). Religious organisations tend to be particularly unrealistic in their teachings about sexuality, forbidding pre-marital sex and contraception despite the fact that most adolescents are sexually active (Ahlberg 1994; Baggaley 1996).

The impact of gender roles on communication in relation to sexuality has been recognised, but little research has hitherto been made. Yet it is one of the most important variables in predicting, for example, condom use (Amaro 1995). Practising safe sex involves a process of sexual negotiation, which in turn requires open communication about sexual issues between men and women (and boys and girls). Discussing sexuality is difficult in many cultures and is especially difficult for young people who are often unsure of themselves, lack experience and whose actions can be guided by peer attitudes or pressure. One study also raised questions about the usefulness of concepts such as 'sexual negotiation' for an understanding of how women may reduce their vulnerability to HIV infection (Mane, Gupta, Weiss 1994). In many circumstances women lack not only the skills but also the resources and the power to be able to negotiate safer sex with men. It is therefore utmost important that interventions to strengthen women’s sexual negotiation skills be conducted concurrently with educational programs designed for boys and men. Such programmes must promote men’s participation as equal partners in safer sex planning.

Furthermore, frankness about sexuality is not considered appropriate female behaviour in many cultures (Bassett and Mhloyi 1991; de Bruyn 1992; Hillier et al. 1998; Lear 1995; Taylor 1995; Weiss et al 1996). It implies a lack of sexual innocence and divergence from a “passive” role that is often expected in women. Men, despite their “active” role, may experience difficulty in talking about sexuality, be reluctant to admit their lack of knowledge, or may not be prepared to take responsibility for their sexual behaviour.

A dialogue approach to communication between women and men has been tried in some projects and the results are promising. In some cases it was found to be necessary to first build sexual communication skills in single-sex groups and then let women and men enter the dialogue with each other (AIDSCAP). Programmes to address partner communication have also emerged. One study found that training women and men in partner communication via role-plays and interactive methods lead to women feeling more comfortable with discussing their partner’s sexual history and men were more comfortable requesting condom use (Franzini 1990).

Many of these communication programmes have not been properly evaluated. It is important to understand the factors and processes that constrain and/or enhance communication and dialogue among young people, in order to design appropriate intervention methods. Furthermore, a better understanding of how to enhance both female assertion and male attitudes of sexual responsibility is needed.

Media

Research shows that mass media based programmes have been developed with increasing success to promote sexual and reproductive health in different countries (Austin 1995, Israel and Nagano 1997, Johns Hopkins 1997). Many of these draw on social marketing techniques and use the persuasive power of the media to support health-enhancing objectives. In East Africa a few such initiatives using mass media and social marketing techniques have been initiated. One is a newspaper insert in Uganda supported by UNICEF called Straight Talk. This newspaper promotes safe sex practices and HIV/AIDS awareness among adolescents in the form of features and advice to personal questions. It is distributed widely in schools across the country. In Kenya, a radio programme, the Youth Variety Show is offering a combination of popular music and information on young peoples concern (Kiragu et al 1998). The radio programme is run by the Family Planning Association and young people are encouraged to call in and talk about their questions and concerns. In Tanzania The Femina magazine health information project has been set up with support from Sida. It builds on experiences made in the field of programming that AIDS prevention and SRH information can be conveyed to young people in entertaining ways that capture their attention. Combining education and entertainment (edutainment), has proven to be highly effective in motivating young people to seek information and services in order to change health related behaviours. It captures the audience attention, evokes strong emotional responses and provides role models for identification and for behaviour change (Johns Hopkins University 1997, 1998, Jarlbro 1998).

Research suggests that mass media help raise awareness and improve knowledge of the epidemic. It can make people understand that there is an alternative to the situation within which they find themselves (Pietrow et al 1997). Mass media and social marketing can play an important role in modifying concepts of masculinity and femininity and their relation to sexuality and HIV risk. Furthermore, mass media makes HIV/AIDS visible and puts it on the public agenda, which is a prerequisite for breaking the silence surrounding it.

Condom use

Using condoms requires male agreement. Communication and negotiations about sex are particularly difficult in cultural contexts where women should not be knowledgeable about sex and lack decision-making power (Mane, Gupta and Weiss 1994). Condoms often carry negative associations (Dover 1995). They are seen as suitable for ‘casual sex’ but inappropriate in the context of a long-term relationship. Condoms are often associated with sex-workers and with mistrust, which also complicates their use. There are numerous rumours, as well as conspiracy stories, about the adverse affects of using condoms. Moreover, traditionally there is an accentuation on fertility in many sub-Saharan African societies, which also leads to a dislike of using condoms.

Wilton (1997) suggests that masculinity becomes threatened by condom use. There are several reasons for this: first, if condom use is requested by a woman this allows women to define the terms of sexual engagement; second, condom use may involve men having to deprioritise their own sexual pleasure; third, for men to demonstrate a degree of control over sexual behaviour may be feminising since male sexuality is most usually understood as uncontrollable, and finally, risk-taking itself is considered to be typically masculine.

In a recent study on youth in a Southern African township it was reported that the groups’ level of knowledge about HIV/AIDS was high, but perceived vulnerability and condom use were low. Six factors were identified that hindered condom use. They were: lack of perceived risk, peer norms, condom availability, adult attitudes to condoms and sex, gendered power relations and the economic context of adolescent sexuality. Informants did not constitute a homogenous group in terms of their understandings of sexuality. While there was a clear evidence of the existence of dominant social norms which place young people’s health at risk, there was also evidence that many young people are critical of the norms that govern their sexual behaviour and that they are aware of the ways in which peer and gender pressures place their health at risk. There was also evidence that a minority of youth actively challenge dominant norms and behave in health enhancing ways. This provides a good starting point for peer education programmes that seek to provide the context for the collective negotiation of alternative sexual norms (MacPhail and Campbell 2001).

There are also other signs of change. An analysis of studies focusing on 15-19 year olds found that teenagers with more education are now far more likely to use condoms than their peers with lower education, as well as less likely, particularly in countries with severe epidemics, to engage in casual sex. This was not the case early on in the African epidemic. At that stage, education tended to go hand in hand with more disposable income and higher mobility, both of which increased casual sex and the risk of contracting HIV. Thus education appears to have switched from being a liability to being a shield (UNAIDS 2000).

Some innovative condom social marketing programmes have addressed the barriers women face in accessing male condoms and insisting on their use. For example, women in Cameroon and Côte d’Ivoire can purchase condoms in self-service shops, where anonymity is preferred over direct interaction with sales people. In Burkina Faso, organised groups of women are involved in HIV prevention information and condom distribution to other women. Peer education programmes in Burkina Faso also provide women with effective responses to common male objections to condom use (PSI 1997). But more research is still needed in order to understand how to effectively reach men.

Some studies have explored the impact and effectiveness of condom social marketing programmes in reaching poor and vulnerable people (Price 2001, Agha et al 2001). Findings from a study in Mozambique (Agha et al 2001) indicate that condom social marketing programmes are effective in encouraging safer sex practices among persons engaged in sex with non-regular partners. However, it is important that the price on condoms is low so that poor people can afford to pay. Social marketing programmes that have a cost-recovery focus seem to exclude the poorest people.

Because of male resistance to condom use and the difficulties women have in negotiating the use of condoms, some researchers have suggested that female controlled protection is central to HIV prevention (Rivers and Aggleton 1999). The female condom, although more expensive and less widely available, provides women with an extended choice of protection and recent research suggests that male resistance to the female condom may be less than the male condom (Aggleton, Rivers and Scott 1998). While a number of studies have focused on the acceptability of the female condom, little research has been conducted into the ways in which its introduction might affect sexual communication and negotiation between men and women.

Many researchers consider education as one of the most important tools in the prevention of HIV transmission (Bolton and Singer 1992, Susser and Gonzales 1992, Leap and O’Connor 1993, Rivers and Aggleton 1993, Laver 1993, Awusabo-Asare 1995, Mogensen 1995). However, this view is not shared by all. Caldwell, in a recent paper argues, that “Africans have been educated by AIDS programs to know that AIDS is deadly and largely spread among them by high-risk sexual activities. The epidemic cannot be defeated by more education” (Caldwell 2000). But, at the end of the paper Caldwell states that “Finally, there must still be strong informational programs pointing out the reduction in the risk of AIDS from changed sexual behaviour”. More important than discussing semantics i.e. whether to call inputs “education” or “information”, is to discuss what works in AIDS education. There is a wealth of evidence that educational campaigns can be effective and arrest or reverse HIV trends by encouraging people to change or avoid risky behaviour and lifestyles. But sexual and reproductive health education is not an easy task and many factors have to work together for effective AIDS education.

Studies show that many young people in Africa have adequate knowledge of STDs and HIV/AIDS but that does not necessarily translate into behaviour change. For example, studies conducted in Zimbabwe and Malawi showed that adolescents were generally knowledgeable about AIDS, they know how the disease was transmitted and that it was fatal, but they did not think that they were at risk of HIV (Bassett and Sherman 1994, Helitzer-Allen 1994). Risk perceptions were instead projected upon “outsiders” – such as bar girls, prostitutes, homosexuals and truck drivers (Uwakwe et al 1994). Sexually active girls in rural Malawi did not feel that they were vulnerable to HIV infection because they know the boys with whom they developed relationships. As formulated by one girl “my mother knows his mother, so he cannot be infected” (Helitzer-Allen 1994).

Educational initiatives around HIV and AIDS have tended to concentrate on providing the facts about HIV transmission in the belief that this will change behaviour. But, there is little evidence that behaviour change has occurred among people on whom these educational campaigns have been targeted (Schoepf 1991, Laver 1993, Rivers and Aggleton 1993). Moreover, as mentioned earlier, public health campaigns about AIDS have often been directed towards individuals or to specifically targeted risk-groups, such as prostitutes and truck drivers. A group of truck drivers might, apart from driving trucks, not have very much in common and can belong to quite different social, economic and cultural groups. Hence, giving the same health message to a risk group may not be an effective way to halt the spread of HIV (Singer and Weeks 1996). Findings from research suggest that for AIDS education to be effective it has to be culturally appropriate and refer to a specific social and cultural context (Bolton and Singer 1992, Schoepf 1991, Mogensen 1995, O'Donnell et al. 1994b, Solomon and DeJong 1988). People have to be able to identify with the messages given, which should be delivered in colloquial language using whatever metaphors and idioms that are culturally appropriate.

Many African countries do not permit sexual education in schools with the motivation that it will encourage early sexual debut. Research actually suggests the opposite: that adolescents who have received sex education information are empowered to make informed decisions about their sexuality and show a delayed onset of sexual activity (Baldo 1992, Oakley et al. 1995). The global Program on AIDS of the World Health Organisation reviewed 19 studies to examine the age of first sexual intercourse and reported levels of sexual activity among students who had been exposed to sex education. It found the following:

The present challenge is to convince policy and decision-makers of the need for sex education and to involve the ministries of education and health in the planning and implementation of sexual education for schools and youth friendly services.

Peer education is regarded by many researchers and programme planners to be especially suitable and effective in HIV prevention (Norr et al. 1992, Singer and Weeks 1996, Feldman et al. 1997, Gregson et al. 1998,UNAIDS/99.46E). In peer education, members of a given group are selected and trained to promote change within that group by acting as role models and acceptable informants (Fuglesang 1995, Feldman et al. 1997; Bond and Faxelid 1998; UNAIDS/99.46E). Thus, peer education is by definition adapted to the specific cultural context and can be culturally appropriate. Peer educators use the local language including, local idioms and metaphors, as well as non-verbal gestures to allow their peers to feel comfortable when talking about issues of sexuality and HIV/AIDS. Peer education is also a cost-effective intervention strategy, because its use of volunteers makes it inexpensive to implement (UNAIDS/99.46E).

A literature review commissioned by UNAIDS (UNAIDS/99.46E) suggests that peer education is a widely used component of HIV prevention programmes among many groups of people and in many geographical areas. There have been projects to train members of almost every conceivable group as peer educators: primary and secondary school students, truck drivers, sex workers, hair dressers, taxi drivers, sports team members, farm workers to name but a few. Responses to these projects are often positive. People appreciate and generally accept as credible the information they receive from colleagues and peers (Collins and Rau 2000). Studies have shown that female peer educators can talk about sex without the risk of being stigmatised as promiscuous. Equipped with communication skills, educational materials and a certificate that recognised their role, peer educators can be successful in facilitating group discussions about sex and educating their peers about their bodies (Weiss et al 1996).

The literature review also indicates that peer education is seldom implemented alone. Rather it is often part of a larger, more comprehensive approach to HIV prevention that includes condom distribution, STD management, counselling, drama and/or advocacy.

Most evaluations of HIV/AIDS peer education programmes mentioned in the literature review had used experimental or quasi-experimental designs with outcome indicators such as reduction of HIV related risk behaviour and/or STD/HIV incidence. These evaluations showed that peer education, in combination with other prevention strategies, was very effective in several populations and geographical areas. However, there is still need for further research to determine what the critical elements of peer education are within the context of a comprehensive HIV prevention strategy. There is a need to know how to best influence policy-makers/stakeholders; how best to select, train and supervise peer-educators; how to address gender and cultural factors; how to scale up programmes and how to sustain peer education activities.

Youth friendly reproductive health services

Public health services tend to be under utilised by young people due to factors such as shyness, judgmental attitudes by staff, lack of privacy and problems of costs (Atuyambe 1999; Chikotola 1996; Fuglesang 1997; Kim et al 1997; Rutgers and Verkuyl 1998; UMATI 1998). In order to address these problems there are a number of on-going interventions in Africa for youth friendly reproductive health services. Below are some examples.

In Kenya, the Centre for the Study of Adolescence (CSA) has done extensive research and advocacy work, in collaboration with Kenya Association for the Promotion of Adolescent Health (KAPAH), to promote adolescent reproductive health (CSA and KAPAH 1995). Youth friendly services for STDs have been established by the Family Planning Association of Kenya (FPAK) in Nairobi, Mombassa and Nakuru. In addition, the Ministry of Health has established two youth clinics at Siaya and Machakos, funded by Sida. Other initiatives have included: sports clubs, such as the Mathare Youth Sports Association (MYSA); The Kenyan Society for people with AIDS (KESPA), working mainly with anti-AIDS groups in schools; Teenage Mothers and Girl’s Association of Kenya (TEMAK) which promotes female empowerment.

In Uganda, youth-friendly comprehensive reproductive health services through youth reproductive health centres are now being advocated. At least five donor funded youth reproductive health centres are now operational. These centres provide recreation, information education and counselling (IEC) services, treatment of STDs, and provision of family planning that includes supply of condoms. Other initiatives in Uganda include the “Youth Alive” network of youth clubs, as well as numerous sports clubs, locally based peer education schemes and anti-AIDS clubs in schools.

In Zambia, Youth Friendly Services have been piloted in Lusaka since 1994 by UNICEF. There has been training of peer educators by CARE in Lusaka, the Copperbelt and Southern provinces and work with young people and HIV/AIDS by Christian Children’s Fund, Planned Parenthood Association of Zambia (PPAZ) and Family Life Movement Zambia (FLMZ) in Kafue. FLMZ is also providing family life education for young people in Southern, the Copperbelt and Lusaka provinces. Nationally, PPAZ has run skills training for youths and Family Health Trust (FHT) has created Anti-AIDS Clubs in many schools.

Many of these initiatives and their intervention methods and processes have not been adequately researched, documented or evaluated for their acceptability to youth and community or their effectiveness. Furthermore, most sustained initiatives have taken place in urban areas. The utilisation of both public and private sector health services by young people needs to be understood in order to improve service and attendance, especially in view of women’s tendency to later treatment seeking than men.

IV. Health care research

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][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.

Access to health care

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.

V. Research on and for policy

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.

Structural adjustment programmes

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.

National responses to the epidemic

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.

Human rights and CEDAW

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.

Violence against women and children

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.

The role of NGOs and CBOs in HIV prevention and care

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.

Socio-economic consequences at household level

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.

Agriculture

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).

Education

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).

Business

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.

VII. Methodological approaches to social science research on HIV/AIDS

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).

Intervention research

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.

Research on the protection of young people and future generations

Health care research

Challenges for the future

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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[1] Many people in Africa also visit traditional healers, often in tandem with use of bio-medical health care. WHO has since 1978 been proposing more cooperation between the traditional and modern medicine sectors.

[2] This example of useful research and some others below are taken from Collins and Rau 2000.

A REVIEW OF

Prepared by

For Sida/SAREC (Department for Research Cooperation)

UNDP United Nations Development Programme

II. Social science research on HIV/AIDS in Africa

Historical perspective

Poverty

Gender inequality

III. Research on protection of young people and future generations

Gender and sexual and reproductive health

Communication about sex and AIDS

Media

Condom use

Youth friendly reproductive health services

IV. Health care research

Access to health care

V. Research on and for policy

Structural adjustment programmes

National responses to the epidemic

Human rights and CEDAW

Violence against women and children

The role of NGOs and CBOs in HIV prevention and care

Socio-economic consequences at household level

Agriculture

Education

Business

VII. Methodological approaches to social science research on HIV/AIDS

Intervention research

Research on the protection of young people and future generations

Health care research

Challenges for the future

References