Psychological and social consequences / by Margaret C. Heagarty

Psychological and social consequences by Professor Margaret C. Heagarty Director of Pediatrics, Harlem Hospital Center, New York lDS, as no other bio- logical event of this century, has placed the world's scientific, medical and public health systems under enormous stress. After more than a century of scientific and medical progress, victory over infectious disease was declared to be within our grasp. Smallpox had dis- appeared, antibiotics mastered bac- terial diseases, and vaccines prevented the most common childhood viral infections. All that remained was to use these new scientific wonders in under- developed areas of the world and the ancient scourge of infectious disease would become no more than a chapter in the history of science. Now, almost ten years after the human immunodeficiency virus pre- sented itself, it is evident that the world's public health system must re-examine old principles and learn new lessons about the care of commu- nities, families and individual patients afflicted with a serious, chronic, lethal infectious disease, for which no ulti- mate cure or prevention is in immediate view. But AIDS is surely more than a puzzling infectious disease; its effects on those afflicted transcend symptoms, signs and proposed therapies. This disease, perhaps more than almost any other, affects profoundly the families and communities in which those with AIDS live. And the psychological and social consequences of this disease are especially difficult for women and children. A child is often the first in a family to manifest the signs and symptoms of HN disease. Except in the instance of transmission by contaminated blood Strong family bonds in a West Eur-o- pean city. More than almost any other disease, however, AIDS profoundly aHects the families and communities in which people with AIDS live. 18 products, AIDS in children is a con- genital infection in which the HN virus is transmitted from mothers to infants during the perinatal period. Thus parents often must face the reality of a serious, probably lethal disease in their child at the same time that they learn that the mother and often the father are also infected with the virus. The reactions to death or its imminent possibility have been well described: denial, anger, bargaining, depression and finally acceptance. But several factors make this process even more complicated in families coping with AIDS. First, issues of guilt and blame may play a large role in the family's reaction to the disease. Women, infected by men, may blame their partners for their infection and for the disease in their child. The conflict in a marriage and family in this situation can cause serious and some- times permanent disruption of a family unit. Moreover, guilt is the ordinary human response of a parent to any illness in one of their children. So a mother who has infected her child during pregnancy must cope with that guilt even while she deals with serious disease in herself and her child. In addition, in certain parts of the world AIDS in women and children is caused through infection by contami- nated needles used in illicit intra- venous drug use. At best, drug-using parents are marginal in their ability to care for children. The presence of AIDS in drug-using women and their children may result in such worsening of their social disorganization as to destroy their ability to care for any of their children, either well or ill. Furthermore, the overwhelming medical and psychological needs of women and children with AIDS may result in the neglect of the other children in these families. But these W ORLD HEALTH. November-December 1990 children - who are often obliged to take over many of the parental responsibilities - must face the death not only of their sister or brother but of one or both of their parents as well. Unless these children are provided with considerable sensitive support, their natural feelings of guilt, aban- donment and loss will inevitably damage their development and their ability to cope. The serious psychological and emotional effects of this disease on family functioning 'are further compli- cated by the social stigma and discrimi- nation associated with AIDS. Even after almost ten years of widespread public education in some countries about AIDS, many unfortunately conti- nue to discriminate against, to penalise and to shun those with the disease. Because of fear and rejection on the part of the larger community, families with AIDS may feel they must and indeed may be required to keep the fact of the disease secret from their extended family, friends and neigh- bours. The resulting isolation comes at a time when the family is in greatest need of external support and care. A majority of women and children with AIDS are poor. Poverty brings with it problems of housing and food, as well as of access to medical care or social services. The AIDS epidemic in women and children has pushed the W ORLD HEALTH, November-December 1990 medical and social services of commu- nities in which the disease is prevalent to a point of genuine crisis. The ability of these systems to care for an ever- increasing number of patients with this serious, lethal disease is so imperilled as to place in jeopardy the entire medical and social systems working for the poor of these communities. Orphaned children Ultimately, as the disease progresses and as many women begin to die of AIDS, their families and their commu- nities will be confronted by an increas- ing number of orphaned children for whom they must be responsible. In the best of circumstances, extended fami- lies will take responsibility for these children; but in many instances extended families may not be available or willing to assume this responsibility. In this situation, permanent foster care or adoptive arrangements should be the goal for these surviving children. But some communities may be faced with the necessity of developing small group homes for some surviving child- ren of parents with AIDS. In this crisis those of us in developed countries must be careful not to repeat the mistakes in child welfare of earlier generations. The dangers of "institu- tionalising" children have often been described. Hence any such arrange- ments must be small, personal and A striking study of father and child. And supposing the mother had proved HW- positive, or had died from AIDS? carefully monitored, lest we unnecess- arily damage large numbers of children irreparably. The enormity and complexity of the social and emotional consequences of AIDS on women, children and families will test the ingenuity and commitment of those medical and social services practitioners who are responsible for their care. But the rewards of this care are large, for no group within our practices are in greater need. As we attempt to find ways to provide medical care, solace and social support for these families, we truly fulfill our ancient roles as physicians, nurses, social workers and public health practitioners. Moreover - since this epidemic has crossed all national boundaries from the developed to the developing world, AIDS offers us a unique opportunity to learn from one another as we devise new solutions and programmes for these women and children. We should be careful not to lose this opportunity to support one another as we struggle to understand the disease and its social and psycho- logical effects on individuals, families and communities. • 19