HIV and AIDS: The Global Inter-Connection

MOVING FROM FEAR TO HOPE

By Ian Campbell

During a visit to Norway, I was asked to address a group of high-school staff and students about HIV. At the beginning of the discussion, the students chose fear, confusion, and death as words to describe their feelings about HIV. At the end of the session the words they chose were inclusion, community, choice, challenge, and hope.

This new choice of words reflects a transition of thinking and emotional investment. It also reveals the capacity of a small group of people to concentrate realistically on the global impact of HIV and to relate it to various aspects of development. These people are no longer observers; they have become active participants in problem solving. They are incorporating suffering and loss, whilst gathering resources to deal with the impact of this disease. The group was not only discussing hope for other communities; the community was demonstrating real hope for themselves and utilizing their own previously unrecognized internal resources.

Hope lies within each of us in the exploration of these resources. Some communities in Southern Africa are already exploring their resources and their experiences can offer much to those in the first world who are in similar circumstances. Theirs is a framework of hope that requires an honest grasp of the relational and spiritual issues we face when dealing with HIV.

Some words speak in special ways. They have influence. I will focus on inclusion, community, normalization, and hope. All are conceptual yet practical, abstract yet concrete. They are words which arise from four years of experience in HIV programme development in Southern Zambia, and more recently, in other parts of the world.

The Influence of Inclusion

Privatization is usually practiced under the guise of respect for personal rights. Yet the shame, fear, stigma, and confusion of HIV will not end with strident, moralistic imperatives about human rights. However, in every crisis there comes a time of helplessness and a need for burden sharing instead of burden bearing. This is true for HIV. Constructive, respectful, and confidential information sharing about HIV is needed. Most importantly, there is much we can learn from the experiences of people who are living with HIV.

Care programmes cannot operate effectively in a vacuum. If we care for individuals in their home environment, the family becomes interested in problem solving, and in turn, the community develops a concrete interest in HIV prevention.

Integrated HIV management is necessary to promote a coordinated approach to care, prevention, and control. It is a multi-disciplinary technique which is committed to both task and process, but not in a technical manner. A fusion of problem solving approaches which apply to different categories of human need is required. Not only is clinical care necessary for HIV-related illnesses, but counselling is needed for a person living with HIV who needs support and information when he or she is ready to approach his or her family. In turn, the family needs to know how to respond to this situation, how to face the future, and how to turn a problem into an opportunity for themselves and their community.

Relationship values, spiritual motives, and integration of life should all be preserved, provided there is a means of incorporating and resolving the problems which arise as a result of HIV. This will not happen without an applied approach to information sharing that is agreed upon by all, that is helpful to all, and that is concerned with problem identification and problem solving. This is often where counselling, including community counselling, comes in. The inclusiveness of counselling is demonstrated in the capacity of a community to meet, examine, and make choices about their collective future.

These choices ultimately focus on behaviour change that resides with each person, involves the family, is affected by the community, and which is subsequently transferred to the nation. Counselling is the primary tool for behaviour change, community development, pastoral care, and education. Southern African communities are usually more willing and able to deal with the issue of behaviour change. This is because a respectful dialogue is the priority. Behaviour change for the individual, the family, and the community will occur by inclusion, not by intrusion. It will occur through recognition of mutual accountability. When the responsibility for behaviour change is accepted and acted upon by the community, room for an external facilitator presence can be created.

Trust enables the participation of an external facilitator to be effective. It is an essential part of the counselling process. Yet gaining the trust of an entire community can take considerable time to achieve. More often than not, trust is established through the compassionate demonstration of care for someone who is ill.

Yet, the spread of inclusiveness, generating a wave of energy for change, survival, and even growth in relational values, cannot rely entirely upon the energy of the individual. Inclusion will require political leadership and support from the highest levels of government. The power of example is great and truthful politicians are needed. Politicians who respect and value honest relationships with communities, institutions, and non-governmental organizations.

Inclusion means confidential sharing, which is an apparent paradox. It means preservation and growth in relationship rather than disruption. Inclusion means developing a network of support through respectful burden sharing, rather than intensifying personal stress through isolated burden bearing. It means inclusion of people related by family groups as well as those who are bound together by mutually shared objectives.

In turn, non-governmental agencies active at the community level should continue to express their needs to those in the international arena with the financial resources and influence desperately required to continue their work. International organizations often operate without the involvement of those working in the field or those who are living with HIV but these are the very people who have the greatest capacity to solve problems because of their experiences.

Inclusion also implies inner security and a readiness to accept the diversity of human life. Inclusion recognizes the capacity for spiritual life in others, and recognizes the importance of maintaining a quality of life that accepts and transcends the difficulties of living with HIV. At a time of crisis and pain, the spirit of inclusion is the most basic building block of successful programme development. Inclusion recognizes the fact that the best begins now with oneself and with others.

The pastoral care presence is part of the spirit of inclusion. For the majority of people living in developing countries, the recognition of spiritual life is not a conscious process. Spirituality exists from birth for the individual and is incorporated into everyday life.

The Influence of Community

HIV affects individual relationships as well as those of a larger community. It is a false assumption that all groups in Africa automatically function well as communities. They do not. Each person within a group has his or her own agenda, and each group has its collective agenda. Communication is needed to progress from a group consciousness into a community awareness which solves problems in the interest of all its members. Thus, the capacity for community consensus, specifically the capacity to agree upon approaches for a collective future, is another major building block for programme development that Africa can demonstrate to the rest of the world.

This community awareness is also of major importance when developing and implementing HIV counselling. Counselling interventions at the community level depend upon community centeredness and participation for their success in the same way that one-on-one counselling depends upon client centeredness. Most importantly, effective counselling can only be created with the participation of members of the community which it is supposed to serve.

Many programmes focussing on HIV-related issues in Southern Africa began as a result of research interest rather than the desire to establish care programmes. Great skill is required for research programmes that are attempting to encourage community awareness about their research objectives. This is because the community is not interested in research objectives. They are concerned about who the beneficiary will be and whether they should participate in these programmes.

A community understands its limitations, thus the facilitator team should also declare its limitations unequivocally. Often, the facilitator team, whether focused on research, home care, or education for HIV prevention, is more concerned with the implementation of their project. Their efforts can result in failure if they are inflexible in this regard. This failure is preventable if the team recognizes that it is in partnership with the community and, as such, can afford to reveal its weaknesses and learn from those they are working with.

This is one of the strengths of the Chikankata Hospital HIV care and prevention team in Zambia that is being shared in HIV management training seminars. Health care teams train for a period of five days at the hospital, with corresponding field visits. Most participants began to recognize the need for a transition in attitude from being a provider team to being a group that gives what it can, but receives what it should from the group with which it works. This is an example of the concepts of mutual interdependence and inclusion in community.

Our task is to encourage community development by defining the community and facilitating its success when it is working in its own interest. Community development approaches to HIV prevention are less likely to destroy hope and sabotage community initiative than many past attempts at primary health care implementation.

Communities throughout the world need to shift power from helpers of the health-care system and authority structures, to themselves. This is true empowerment because the capacity to act is acknowledged, confidence is asserted, and participation has begun.

What is actually happening with communities in Southern Africa is happening in other areas of the world, with people who understand the challenge involved in facilitating a potential community to become a functioning community. Africa can teach us this by example. For many in the first world this is unexplored territory because it is assumed that hope for community was lost long ago. This is far from the truth. Community affirms choice and incorporates challenge. It is the most effective tool we have to eliminate confusion and fear.

The Influence of Normalization

If we are honest, we can acknowledge that we deny and avoid problems when they have a significant impact upon our lives. This is also true for nations as they try to deal with HIV. A syndrome of rejection and denial can be discerned in the reactions of people to HIV at the national planning level.

Nations in Southern Africa have accepted malaria and other diseases as reality. HIV is very different from these other diseases but it needs to be realistically incorporated into everyday life, just as they are. This does not mean we accept HIV or that we are losing hope for its control. It means that we are being honest.

The real issue is one of positive alternatives for survival and creative growth that are part of a strategy for HIV prevention while being respectful of relationship. Tactical support mechanisms such as condoms, vaccines, treatment, and needle exchange programmes will never control HIV, although they will prevent its transmission. They need to be placed into a broad strategy for prevention and this requires realistic, honest thinking.

The fact that HIV affects relationships and is integrated into value systems and behaviour requires that it is normalized. But it usually is not. Tactical maneuvers become detouring panaceas and this happens because HIV is not acknowledged honestly, particularly in the first world. There is widespread superficial recognition of the presence of HIV, but little else. Normalization happens more easily in the context of the cultural depth and diversity found in Southern Africa where people discuss not only the quantity of the problem, but also the quality of the response needed.

At this point in time, the presumption seems to be that vaccines or treatments will not prevent or cure HIV. If Zambia, for example, has experienced difficulty in achieving forty per cent vaccination coverage for measles after spending millions of dollars, and with the logistical support of the polio plus programme and UNICEF then a vaccine will not solve Zambia's HIV problem. Neither will a vaccine or treatment solve America's or Britain's HIV problem, even though it is commonly assumed that they will. We must honestly recognize, and not just verbalize, the fact that HIV is a part of our lives. This is why assumptions should be avoided at all costs.

Many people working in development claim awareness of their involvement in the international context for health-related community development. However, this internationalism is rarely felt and reflected in programme design that incorporates both the caring spirit and the skills in strategy development. HIV has disrupted this complacency by demanding internationalism at its best. In this sense there is no other option for the future. Development of positive relational alternatives and subsequent choicemaking about sexual lifestyle, survival, and growth strategies is an absolute necessity for HIV prevention and control.

Yet it is apparent that people, communities and countries do not realize that they have a choice. The inevitability of HIV need not be depressing, providing it is recognized and integrated with an increasing awareness of a capacity for choicemaking about the specific issues of relationships and sexual expression. In one sense there is no choice but in a truer sense HIV can enhance liberation by clarifying the choices that are actually available for people. The extent to which some African countries and communities are normalizing HIV is a strength and a challenge. This is what needs to be communicated to the first world.

Honest normalization contains a capacity for respectful choice, for incorporation of suffering, and for problem solving through development of the concepts of inclusion and community.

Normalization contains a commitment to inner security that is based on awareness of the value of the work of others and training programmes should be shaped by this awareness. Africa's ability to normalize HIV will have implications for training programmes throughout the world because they too should contain a commitment to power sharing, inclusion, community, and survival, quality rather than quantity, and comprehensiveness of vision rather than restriction to personal agendas or narrow issues. The challenge of HIV is unavoidable, yet we can choose the methods we employ to deal with it.

Those with health training and other forms of expertise are also needed as part of the team of problem solvers. This includes people who are living with HIV. All of us are decision makers, and as such, we are responsible for discerning these choices.

The Influence of Hope

Hope is the basic building block of life. It is measurable through establishment of programmes which work by promoting strategies for behaviour change that can be implemented realistically. Through action, energy is generated for the unseen future.

Faith in the unseen is another form of hope. Sometimes acceptance of the difficulty of life in Southern Africa is assumed to be fatalism. It is not. This acceptance can take the form of faith in a future characterized by the sharing of human and spiritual resources of inclusion in community, with honesty and integrity. Hope is the courage to believe that life is a mystery. Hope is the knowledge that we are going somewhere.

Moving from paralysis to action is a move from fear to hope. Yet mysteriously, concrete action that speaks to people, particularly those who are living with HIV, begins with a belief that there is hope for a solution. HIV was not sent to us for a specific reason, but we can use it to help us move toward that solution.

Biographical note

Ian Campbell, the Medical Adviser for The Salvation Army, develops health programmes internationally. From 1983 to 1990 he worked at Chikankata Hospital in Zambia where he was involved with all areas of HIV prevention, care, and counselling.