Listen to thisThe big story about AIDS orphaning in southern Africa, and the individual stories of children called AIDS orphans, are often portrayed in highly simplistic terms. Very often, they read something like this: Children are abandoned or found in need of care when parents die of AIDS. Extended families have been disrupted by migrant labour and repeated shocks due to poverty and AIDS and they are unable to take care of affected children. Children have to be placed in residential facilities to secure their health and development.
Large and small institutions are being established in all communities in an effort to respond to a crisis which, in our view, is still very poorly understood. The numbers and distribution of children affected, the most appropriate course of action on a national level, the problems of institutional care, including the long-term instability of care environments without state funding, as well as the special needs of individual children, have received less attention than is merited by the scale and tragedy of the HIV/AIDS epidemic.
One story may help to illustrate some details and help us to see beyond what appears to be obvious. As part of her Masters Degree in Clinical Psychology at the University of Oslo in Norway, Marianne Sandhei has been working with Linda Richter in the Child, Youth and Family Development Programme at the Human Sciences Research Council, doing systematic observations of children in a variety of care institutions established to respond to children affected by HIV/AIDS. One of the focuses of our work is attachment behaviour in children who live in institutions, and how attachment disorders can be prevented in institutional environments. As part of her observations, Marianne constructed a case study of twins in a small institution in a semi-rural area in KwaZulu-Natal. By local standards, the orphanage (our word) is very well-resourced and organised. It houses 37 children ranging from one to 18 years of age. The facility consists of one main building with a kitchen, a lounge and a social worker's office. Another building serves as a preschool during the day for preschool children. Older children attend local schools. The children sleep in four cottages, housed according to age and gender. Each cottage has a housemother, who lives on the site and has particular responsibility for the children in the cottage. The institution receives a state subsidy and children are admitted through child welfare services and court referrals.
The twins caught our attention because they are both severely growth retarded and are believed by staff to be HIV-positive. Information was gathered through three channels: from the children's files, from direct observations of the twins behavior, and from interviews with seven members of staff at various levels in the institution, as well as three of the older children. However, it is no easy matter to construct an accurate case study in these circumstances. The material in the twins file is scant and without continuity, and interviewees were not always in agreement with each other. Although the same issues were raised, their focus would often vary, as did the details. In addition, information is not evenly or even accurately distributed in most institutions; this residential facility was no exception.
The twin boys, who can be called Siyanda and Andile for our account, are three and a half years old. They arrived in the institution when they were just over a year old. With them came two very much older siblings, a girl now aged 15 and a boy of 11, both of whom still live in the orphanage. When brought to the attention of welfare authorities, the twins were found on a single bed together with their mother; the three of them shared one small blanket. The twins did not have any clothes. They were sucking on empty bottles and were covered with flies. There was nothing to eat in their one-room house. Their older sister, 12 at the time, was trying to care for herself and her siblings, as well as their mother who was gravely ill as a result of AIDS. She was unable to provide the family with food, and their diet consisted largely of black tea. It was apparent that the mother also had an alcohol-abuse problem.
Siyanda and Andile looked like they were about three months old when they arrived in the institution; they were tiny and extremely skinny. They had not reached the expected developmental milestones for their age, and they were suffering from kwashiorkor. In addition, they were both covered with scabies sores, and they were anorexic, irritable and cried endlessly. The twins were immediately labelled by staff as HIV-positive, because their mother had full-blown AIDS at the time of their birth. Nobody expected them to survive for more than a few weeks.
There was a rotten smell coming from the twins sores and even when they had just been given a bath, they would still smell repulsive. The twins were not very popular with the staff at this time. Their bleeding sores, their irritable crying and their perceived HIV-status led them to be both stigmatised and avoided. Their basic physical and medical needs were attended to, but they were not given much care beyond what was barely necessary. The housemother who was primarily responsible for them would put off changing their nappies and taking them out of their cots. Often they would be left, mostly unsupervised, to rest in the cottage for the whole day.
In addition to the obvious neglect to which the twins had been subjected prior to arriving in the orphanage, it was suspected that they had also been abused. They were both generally very jumpy, and would suddenly freeze, as if in fear of punishment, if someone entered the room unexpectedly. There have also been indications that they were physically abused during their early stay in the orphanage. Siyanda's arm was fractured and nobody could explain how this happened. A couple of months later he had another fracture; this time the bone was completely broken off. It is likely that harsh treatment from staff or older children led to these injuries. During this period, the twins would spend most of their time rocking back and forth in their cots and hitting themselves on the head with a fist or against the wall. They cried when they were picked up and, if someone tried to interact with them, they would either gaze emptily into the distance in a withdrawn manner, or act in a hostile and aggressive way.
After a few months in the institution, the housemother in the twins cottage left. She was replaced by a trained care worker, who immediately saw the importance of stimulating the twins and integrating them with the other children and staff. An enormous positive change in the twins behaviour began and they started developing towards where they are now.
Current observation of the twins shows they have gross physical and motor delay. They are about the size of an 18-month-old toddler. Because of uneven development, their features are large in proportion to the size of their faces, giving them a comical appearance. Both of their heads are dented at the back with hair missing in patches, probably as a result of self-harming head-banging. Although walking, the children's gait is uncoordinated, unbalanced, they have difficulty starting and stopping movements, and they cannot make adjustments in their movements when they encounter unexpected obstacles in their path. Their fine motor development is also clearly delayed. They are unable to manipulate objects and often drop them or throw them in an uncontrolled way. Both children engage in repetitive and stereotypic behavior. If they are presented with a model car, for example, they will often hold it upside down in their lap, and make one of the wheels spin, over and over. Another enjoyed activity with such a toy is to hit it repeatedly against the wall or the floor. The most commonly observed of these stereotypical behaviours in the twins is lying flat on the back and rolling from side to side. Another is head-hitting, either by hand, with an object, or against the wall. The children are most likely to do this when they get particularly excited, as if they have no other means of communicating their aroused state. They also suck their thumbs constantly, keeping both thumbs in the mouth at the same time. The thumbs are only removed from their mouth when they need to use their hands to touch objects.
The twins activity level is very high and they are easily distracted. It is very difficult for them to focus on any particular activity for more than a few seconds at a time. Most often they move from one thing to the next, as if the moving about is their primary activity and whatever they encounter along the way is secondary. Their language development is also severely delayed. Both children produce one-word-utterances. Longer sequences of sounds are poorly understood by listeners, partly because the children's utterances generally consist of meaningless vocalisations, and partly because their speech is not very clear. Their receptive language is better developed, and they generally understand instructions.
However challenged they are in regard to verbal communication skills, the twins now are very interested in people around them. They constantly seek attention from both staff and other children and crave to be held and cuddled. When affection is given to them, they show their appreciation by smiling and laughing excitedly. Typically they run up to nearby adults, lean their heads backwards and look up while smiling behind their fists, trying to catch one's gaze. Often they put their arms in the air to signal that they want to be picked up or, if one is sitting down, they commonly try to climb onto one's lap. In stark contrast to when they first arrived, the twins very rarely cry. They smile a lot and produce screams of excitement during interactions with caregivers or older children. There is no evidence that the twins have developed focused attachments to particular staff members or older children in the orphanage, including their own older siblings. They don't prefer any one caregiver; they indiscriminately enjoy everyone's company. They don't seek comfort from preferred people when distressed and they are relatively easily comforted by anyone available in their immediate environment.
The twins are handicapped by the attitudes of caregivers towards HIV/AIDS. For example, they are perceived to be HIV-positive, and we were told to “be careful" with them. In their file, however, is a note made by a social worker two years previously. It states that the twins were taken for an HIV-test and that the result showed that they were negative. Although some of the staff appear to know this, they don't all believe it. Some of them continue to think that the mother's HIVstatus has infected them, especially since she was so sick when they were born. This results in people keeping a distance from the twins.
The children's mother is still alive. She is doing much better now, after getting medical treatment. Sadly, she feels too guilty to come and visit her children in the orphanage. She lives with her sister and has since had another child who she has also offered up for care. However, we have been told that a social worker has apparently conveyed to the mother that she is being punished for her behaviour and that she will have to suffer with her last child on her own.
What are we to make of this story? That these children have been severely, even irredeemably, affected by the HIV/AIDS epidemic is without doubt. They are not AIDS orphans, and their mother's plight has a number of dimensions to it, in addition to those directly attributable to her HIV infection and illness. The same can be said of the extended family's capacity to care for the mother and her five children. Should her children be in an institution? Would the family be willing and able to take on the care of four additional children? If the family were willing to care for the children, which environment would give the children the best chance to be rehabilitated from the effects of their prior experiences? Which environment would provide the children with the balance of greatest benefits, both in the short and the longer term? Should the children be in a home which solicits external funds primarily on a platform of services to AIDS orphans?
There are no easy answers to these questions. But every one of these questions shows how little we know and how few plans are in place to mount an effective response to children affected by poverty and AIDS. Families have problems that go beyond the provision of food and blankets. Many affected children have problems that require intense compensatory experiences for them to catch up in their development and enable them to meet the difficulties that inhere in their circumstances. While there are desperate calls for money to address the national tragedy of children affected by AIDS and to meet the resource requirements of a myriad of care organisations, they are not matched by at least two other necessary ingredients for an effective set of responses to affected children. The first is better understanding of the particular problems of affected children and families that need to be addressed, both in the short and the medium term. For example, what problems do affected children have; how can extended families be supported to take in the children of kin, how can the quality of care in institutions and in kin families be maintained, what will become of children currently in residential facilities when funding begins to dry up, and so on? The second necessary ingredient for an effective response is an overall national plan for progressive action, starting with the worst affected areas, and with the most urgent needs of children and families, with expanding support that takes into account the ages of affected children, varying family and community capacity, and categories of need.
This feature from ChildrenFIRST : 47 (February/March 2003)
