HIV and AIDS: The Global Inter-Connection

RACING AGAINST TIME
By Marvellous M. Mhloyi

Although the HIV epidemic has swept the entire world with incredible speed and devastation, there are significant differences in the prevalence of HIV infection between individual societies. The world's poorest countries have been the most severely affected accounting for approximately 80 per cent of the global HIV infections. Regional differences are stark and in Africa the epidemic is particularly advanced.

The potential impact of HIV can be more clearly assessed when placed within the proper demographic and socio-economic context. Because of persistent high levels of fertility paralleled by declining (but still high) mortality, African populations are characteristically young with approximately 45 per cent fifteen years of age and under. Heterosexual sex is the primary mode of HIV transmission and because of the large numbers of women of child-bearing age infected with HIV, perinatal transmission ranks second. Today these two modes of transmission account for up to 80 per cent of HIV infections in Africa.

Because of the inadequacy of death reporting and limited health facilities, in many instances the reported prevalence levels of HIV in Africa are underestimated. Nonetheless, given the reported levels, the epidemic's rate of increase, and the demographic profile of many African societies, it is expected that most of sub-Saharan Africa will probably follow the path of the epidemic observed in the Central and East African countries.

The Psycho-Social Impact of HIV on the Family

When a family member becomes infected with HIV, significant disruptions are experienced in all aspects of that family's life. Other than being told the disease is incurable, couples in this situation seldom receive appropriate counselling, if any at all, about the possible consequences of infection. What then are the specific effects on a family from the time the first member is diagnosed as HIV-positive, to the death of the last adult family member?

Sex is the most common mode of transmission, and the most immediate and frequent response is to assign blame. Often either or both of the spouses bitterly faults the other's sexual behaviour for their child's illness. The household may be beset by feelings of hopelessness, fear, and isolation. Conflicts arise between the spouses, and children notice the deterioration of their parents' relationship as their sick sibling moves closer to death. Their level of stress and confusion is heightened by charges that their father's behaviour is responsible for their sibling's fatal illness.

Social stigma encourages couples to avoid discussing their situation with outsiders. To a very large extent, they may avoid talking to each other. This conspiracy of silence further disrupts family bonds at a time when family members need to share their sorrow. In this atmosphere of strain and silence, children experience fear and uncertainty about the fate of their sibling, their parents' crumbling relationship, and the consequences of the crisis for them.

The couple needs to discuss their sexual relationship and the possibility of future pregnancies. Although this is extremely important, it rarely happens. Even under normal circumstances, most people are unwilling to discuss their sexual relations. Some, in the hope of producing a son, may decide on another pregnancy even though the child may become infected. In many instances, contraception is not an obvious or available option.

On the other hand, couples may practice abstinence altogether, either because the wife is angry and desperately trying to protect her life, or because the husband is ashamed, guilty, or afraid of having sex with his infected wife. If the wife chooses to abstain, the couple may divorce and the father may retain custody of the children. This option, tantamount to divorcing one's children, is untenable to most women. As a result, chances are that the couple will continue an unprotected sexual relationship until the mother conceives again.

Members of the extended family will also experience great stress. When the mother becomes ill, in many instances her mother moves into the home to care for her. She may be particularly bitter, blaming her son-in-law for the demise of her grandchild and the terminal illness of her daughter. Although the husband's mother and relatives often live nearby, communication is so severely strained that they feel helpless to assist. While they too may experience a great sense of loss and sorrow, they do not know how to comfort their son's mother-in-law in a situation where their side of the family is held responsible.

This tension sometimes forces the woman to return to her family for care, but her relatives may also feel uneasy and threatened by the need to provide immediate support to their dying relative and future support to her parentless children. Rarely is there any substantive discussion about how these young children will be cared for. Such conversations are perceived as unwelcome unless raised by the ill mother. The cycle continues when the remaining spouse becomes ill. At the end, the bereaved family is permanently scarred, suffering not only feelings of grief and loss but a profound sense of social isolation.

What becomes of the children? Having witnessed the deaths of parents and/or siblings, their feelings and fears are often unexpressed and unaddressed. Where will they receive the care and nurturing necessary to become productive members of society?

It has been shown that generally, fostered children often receive worse treatment than do the natural-born. In a discussion on the problem of parentless children with thirty guardians in four Ugandan villages particularly affected by the epidemic, food, school fees, health care, and bedding were mentioned as the most pressing problems. One elderly man noted, "With five children of your own and three orphans to educate, you have to choose."

Coping Strategies

Most African nations have already instituted national programmes in which HIV education has been the dominant feature. While awareness has been raised, it is poignantly evident that this knowledge has not yet been effectively translated into sustained behaviour and attitudinal change.

For example, a demographic health survey conducted in Zimbabwe revealed that of the majority of women who reported having heard of HIV, only a few were doing anything to avoid infection. When asked why, many of them expressed the belief that they were not at risk. And the next two most common responses were we can't avoid AIDS and we don't know how to avoid AIDS. Obviously, people's knowledge about HIV is incomplete, but in addition to ignorance there is also a high degree of fatalism and denial that crosses age, educational, and regional lines. Equally disturbing, a significant number of the women who knew about HIV believed that people with HIV infection must be quarantined.

Although attitudes may have improved since that survey was conducted, the findings underscore the fact that disseminating information effectively enough to change behaviour is of utmost importance, and this requires time and great effort.

Especially crucial when addressing the need to avoid multiple partners is to include discussion of polygamy, levirate, and certain other culturally prescribed sexual practices. Not only must individual risk be detailed here, but where changes in traditional practices are called for, information should be provided in a way that helps the communities involved to create safe alternatives.

Although some may wish to claim that existing programmes already address these issues, the fact that the incidence of HIV and other sexually transmitted infections remains high, and is increasing in some populations, strongly suggests they have been ineffective. As much as governments may wish to wait for voluntary change, laws prohibiting these formerly sanctioned cultural practices must be instituted and enforced immediately. Such legislation will reduce the helplessness of people who are frightened of breaking ancestral and spiritual tradition and fearful of infection. Granted, these laws will be unpopular, but Africa cannot afford political popularity at the expense of its people's lives.

Programmes promoting the use of condoms must also be accelerated. Africa's pride in parenthood may be the best incentive in any HIV education programmes which advocates condom usage. The same men who protest condom use may forego the perceived pleasure of unprotected extramarital sex for healthy surviving offspring.

Education programmes must inform couples of vertical transmission. They need to know that the only way of ensuring that their babies will be born free of HIV infection is for parents not to become infected. The need to avoid such transmission must form part of the basis for safe sex education efforts because it can help motivate behaviour change. Such advice would be consistent with local values because it does not counsel against having children.

Couples who are infected with HIV should be advised about the implications of pregnancy. Contraception and abortion should also be discussed even though these options may be difficult to choose in cultures where women derive status from maternity. Sometimes these options may be unavailable. It is important that couples are aware that their surviving children may become parentless. Thus parents should be encouraged to consider and plan for alternative caregivers in case of death, and they should prepare their children for such an event.

Women are more vulnerable to contracting HIV because they lack social and economic status and as a result have limited decision-making power about issues that affect their welfare as well as their families. Part of the long-term programmme objective should be the improvement of women's socioeconomic condition, while also helping them to address the role they often inadvertently play in their own social subjugation. Immediate efforts must be made to empower them with the knowledge and courage needed to encourage and demand safer sex.

To reorder the social system, the men who control it also need empowerment. They must be intellectually and emotionally released from the cultural entrapments that require women to be submissive. A redefinition of their roles that promotes the idea of responsible sex, to protect their loved ones and their sexual partners, as an enhancement of manhood should be encouraged. To achieve this, education programmes must overcome their major weakness, which is that they are prescriptive and not based on effective communication.

Existing intervention programmes have also failed to pay sufficient attention to ethical issues. If HIV-infected people are taught that having unprotected sex with an uninfected person is tantamount to murder, some would limit their sexual activities. The fact not to be overlooked is that use of condoms by person infected with HIV as a means of minimizing the spread of infection is almost purely a moral consideration. Though messages advocating sexual restraint and monogamy for healthy procreation are more a derivative of moral lessons than of common education, teaching people about responsible sexual behaviour, to protect not only themselves but others, should not be simply relegated to churches.

It is unfortunate that after thirty years of family-planning in Africa, HIV intervention programmes aimed at changing human sexual and reproductive behaviour are repeating the same mistakes. When planning intervention programmes it is extremely important that those targeted perceive the anticipated change in behaviour as beneficial to themselves. This was not the case with family-planning, which was promoted mostly as a means to curb population growth and was perceived as an invasion. Individuals rarely make fertility decisions based on macro considerations. It is myopic to assume that a scientifically proven problem is understood by the population. Unless governments and people are convinced, one ends up supplying goods, be they contraceptives for family planning, or condoms and prescriptives for behaviour change for HIV prevention, while failing to create true demand.

It must be stressed that effective communication is key to cultivating the level of understanding that is needed prior to programme implementation. This goes way beyond utilizing media; it means dialogue between the interested parties. From dialogue evolves the appropriate community-sensitive education packages, which can most effectively be implemented by trained and experienced personnel who give frank and informed answers.

Counselling programmes for people living with HIV will have to be based on local systems. After formulating the counselling strategies, government could identify at least one person from each of the country's local units and train them to be trainers. They in turn could instruct others, reaching even the smallest communities. It is important that communities designate their own candidates for this training. Some remuneration for the local counselors should also be given.

Expanding local district clinics where dying people may be cared for by trained health workers should also be considered. This approach would help minimize the risk of spreading infection, release hospital beds to patients suffering from other curable diseases, and allow the person diagnosed with AIDS a peaceful and dignified death.

Increasingly, governments will be faced with the need to provide economic support to the remaining dependents, which will include children and the aged. Education for parentless children should be available free of charge. Practical and vocational training that has some assurance of economic viability should be considered to help ensure the ability of these youngsters to provide for themselves.

Governments should consider employing, in local development projects, those residents who are caring for fostered or parentless children. If a bridge is to be constructed, for example, locals would provide and be paid for their labour. In Zimbabwe, projects where local people worked for food during the drought years provided effective assistance while also aiding the nation's development.

Coping at the Community Level

At the community level, the extended family assemes the responsibility for care of infirm relatives and children. Grandmothers and older siblings are most likely to care for their deceased relative's children. It is important to realize, however, that this obligation may be too daunting for any single individual, given the size of the average African family. Take for example, a report about the plight of one sixty-eight-year-old Ugandan grandmother, who when interviewed said: "I am already weak, and we are poor". HIV had claimed three of her four children, leaving her with one son and twenty-eight grandchildren.

Most extended families will need some form of assistance to deal with the burden of HIV. In Tanzania's Kagera district, the community mobilized, establishing self-help groups to assist parentless children. Residents in Zimbabwe's urban areas formed burial societies, with members contributing funds for funerals. These voluntary societies could be used as models for raising funds to assist children and grandparents.

Coping at the International Level

It is time for African nations to reassess their situation. While international organizations have played a vital role in raising awareness and coordinating programmes to challenge the threat of HIV, most national governments have been dragging their feet. If the world waits for countries to take serious action, it may be too late. In this decade we must adopt a more aggressive approach. Individuals, communities, national governments, and international organizations each have a key role to play in addressing the problem. The challenge is how each fits into the puzzle to produce the greatest impact.

No international organization has a wide enough latitude to push governments to act. This gap might be filled by a neutral international coalition with enough experts from each continent to form subgroups. They would include researchers, policymakers, programme designers, and implementers drawn from existing regional networks to facilitate communication between the group and the regions. Their most important mission would be to develop and implement a more effective and efficient mechanism for pushing nations to act immediately. They would also serve as brokers between countries and donor agencies, assisting in defining and prioritizing problems and identifying the type of aid needed.

The HIV epidemic clearly makes demands that are far beyond the economic capacity of most African countries. Thus, co-operation from the international community will be greatly needed. However, it is of major importance that African countries find an African solution to this problem. This process has been initiated through intergovernmental co-operation at the highest ministerial level and has been addressed by the recent OAU Declaration. By forming networks, countries can inform one another about the levels and trends of HIV infection among their populations, the nature and types of programmes effectively initiated, mistakes made, and the problems which remain unresolved. In the absence of outsiders, it could facilitate more open communication among African nations. This step will assist every country regardless of the epidemic's impact on each particular country. It will assist in the creation of intervention programmes and the reduction of time needed to develop those programmes, thereby saving time and resources. Networks have already begun forming in many regions. The African regional network of AIDS service organizations (Africaso) has sub regional affiliates in Southern, West, and North Africa and focal points working towards the creation of sub regional networks in Central and East Africa.

African countries should also initiate fundraising to assist in the implementation of their HIV programmes. These initiatives should build on the interdependency of African countries. For example, there is an urgent need to prevent the epidemic from exacerbating the already dire refugee problem. Identifying and prioritizing national as well as regional needs could assist donor agencies in their funding assessments.

Africa's national governments are the most important players in this life-or-death drama. Most Central and some Southern African countries are already beyond the first stages. These countries must invest their resources in three key areas: improving educational and counselling strategies, designing home-based care for the growing number of patients, and preparing for the care and support of the increasing population of parentless children.

The dominant theme of these strategies must be the effect of HIV on everyone's life. There has never been a time in modern society when human interdependency has been more critical to our survival. The degree to which this message is communicated will determine the level of commitment to combating this problem. It will also assist in the mobilization of funds and resources.

Investing in the Future

Though these recommendations are expensive, the expense is relative. Countries must consider the potential impact of HIV on their nation's economy: the loss of productive and trained personnel, the cost of replacing them, the erosion of the tax base, the difficulty of motivating parentless children to rebuild and become productive citizens. This assessment should be weighed against the cost of an effective intervention programme. Nations can reorder priorities to determine necessary and possible budgetary changes. This more efficient management of internal funds could finance the most urgent components of the programmes. Political leaders who fully appreciate the problem the epidemic poses can effect significant changes with minimal financial input if they are truly committed. The gap between the estimated total costs and what countries can afford will require outside assistance. International assistance can be most effective when it complements the internal crusade.

The radical change imposed by HIV is too rapid and too extensive to have anything but the most dire psychosocial, demographic, and economic impact on most, if not all, sub-Saharan countries. The loss of so many productive members of society increases dependency ration and will undoubtedly affect already stagnant or diminishing economic growth rates. African governments must realize that if the epidemic continues unabated, all investments currently made in every sector of their economies will be undermined.

This epidemic is devastating the African continent with each passing moment. It will not be the same world if half or more of the next middle-aged generation in Africa is composed of parentless children. The next generation will condemn us for patting one another on the back, comfortable with a few success stories, while refraining from taking the radical steps necessary to reduce and stop the spread of this disease.

As I write I feel strongly that this is not the best way for me to exert the most impact on this epidemic. Even if I had the most wonderful ideas and solutions, great damage will have been done by the time this publication reaches you. This epidemic is without precedent in the modern world and demands action rather than writing. We need constructive action by individuals, communities, nations, and international organizations. Our biggest challenges are to avoid complacency, overcome denial, and to create a network of assistance built on dialogue, sincerity, trust, respect, and responsibility. Even the worst epidemics failed to make the human race extinct, and with that ray of hope nations must be encouraged to forge ahead.

Biographical note

Marvellous M. Mhloyi, Ph.D., is a lecturer at the University of Zimbabwe. She has been a Fulbright/Bernard Berelson Scholar with the Population Council. Her research focuses on fertility, family, population policy, and the psychosocial aspects and determinants of health.