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Children - 5.2 How does HIV/AIDS affect childrens vulnerability?
It seems that most often in Cambodia, male parents become infected with HIV first, then infect their wives or partners. Government and NGO appraisal participants providing care and support to people with HIV said that in a typical situation, the father will fall ill first and die after a series of progressively worsening illness. Very often the illness and subsequent death is not known to be related to AIDS and the mother will only find out that she is infected if she becomes pregnant and the baby then dies. Some time after, she too will become ill and die, leaving the remaining children as orphans.
In order, therefore, to tease out how HIV/AIDS impacts on the factors which make children vulnerable in Cambodia, appraisal facilitators asked participants to look in more detail at 3 different scenarios:
1. Children with parents who are sick with HIV related illness
2. Children whose parents have died of AIDS
3. Children who are themselves infected with HIV
Most participants had some experience of the first 2 categories, some more directly than others, but only a few were able to offer information about the needs of children living with HIV.
Fact
Common Clinical Problems encountered by PLWHA in Cambodia include:
- Diarrhoea
- Fever
- Pain
- Chronic cough
- Skin lesions
- Oral Thrush
- TB
- Herpes
- Oesophageal Thrush
- Pneumonia
- Cryptococcal Meningitis
5.2.1. Issues for Children Whose Parents are Sick with HIV Appraisal participants reported that when the father or male head
Appraisal participants reported that when the father or male head of the household becomes sick, there is a chain of events which impacts on the children. After some analysis, the majority of participants said that adding HIV/AIDS to the lives of already vulnerable children makes them more vulnerable. They said that this is because there are many negative impacts generally occurring within a relatively short space of time; because the psychosocial impact is high and because if HIV/AIDS is actually known or even just suspected, there can also be a high level of stigma.
Increasing Poverty
Because the signs and symptoms of HIV-related illnesses are not commonly recognised as being such, treatment is sought and the family spend progressively more time and money trying to find a cure. HIV Counselling and testing facilities are not widespread, so people often do not know their status and are not able to plan resources appropriately. This means there are less resources for the children and often one or more, usually girls, drops out of school either to care for the sick parent or because there is no money for school fees. Eventually land and property, including tools for income generating (sewing machine etc.) may also be sold to pay for treatment. The father may lose his job through being off work too often. More money is spent on transport to health centres or for hospital stays. Children may have to work to generate income for food, or look after other siblings to free up the mother’s time. Often credit is sought in the hope that the parent will eventually recover and be able to pay off the loan. Because this does not happen, the family can slide into debt. If the debt is for instance rice, loaned by neighbours, the family can lose local support and the chance of further loans. If the debt is to a money lender, the family risks harassment and violence. It was reported that children are often expected to pay back loans even after their parents have died.
With the loss of labour and money spent on treatment, the family can quickly slide from a relatively secure position into increasing poverty, vulnerability and ill health.
Family Stress
During this time of parental sickness, participants reported that the added stress and uncertainty can often result in fighting between husband and wife and a general increase in domestic violence. It was reported that men are more likely to become violent under stress, and that women are more likely to become withdrawn. Where there is a suspicion that the husband has HIV, there can also be a great deal of blame and guilt involved. Neighbours, relations and in-laws may take sides or may isolate the family completely. Although against government policy, health workers sometimes test for HIV without permission and have been reported to disclose an HIV status to relatives without telling the patient. The family turmoil created through these events can result in complete breakdown with divorce or separation of the parents and a further change in circumstance for the children.
Children's Isolation
Children suffer in this situation in ways that are not always evident. Often, parents who are feeling sad and guilty or who are preparing for death, will keep children at arms length, or send them away, in order to be able to cope with their own feelings. Sometimes children are sent to live with relatives or to work as servants in other houses. This means that these children lose any emotional and physical support networks that have been built up through friends and with other adults in their community or through school. They lose their ‘normal’ status and can become depressed through seeing themselves as different to their peers. It was reported that some children would prefer not to go to school rather than lose face by people knowing they cannot afford fees. Children also suffer greatly through watching a parent die, or through caring for a parent who is in chronic pain. Often there is ‘shame’ attached to the illness and they are not able to talk freely about their fears and anxieties. Neighbouring children may not be allowed to play with them for fear of infection, thus further increasing their sense of isolation and of being different. Older children have to take on adult roles without skills or knowledge, often they are exploited or cheated. It was reported that on the whole, adults don't usually relate to children as 'people' with minds of their own and don't bother with explanations if the child is under 11 years of age. The stress of not knowing and not being able to ask, can be intolerable for children. Some run away and become open to further abuse, violence and poverty.
Lack of Support
Where there is little knowledge about HIV, neighbours and relatives will not offer to help care for the sick parent. It was reported that this type of discrimination is usually through fear of transmission or through superstition at what will happen if they associate with someone they consider to have done something bad. Most often, there is little support purely because people are too poor to offer much. One group of participants reported that people with HIV are feared because they know they will die and therefore can “do anything they want, even murder”. In some areas participants said that health staff refuse to treat people they suspect of having HIV infection because they do not have the skills and are scared of infection. Similarly, only a few monks were reported to offer spiritual help to people known to have HIV, but this number is growing thanks to targeted NGO work with pagodas. In the few places where there are Home Based Care Teams the situation is much better for the families. Participants said that seeing other people caring for their family helps relatives to lose their fear and in some cases shames them into helping.
Women Coping on their Own
When the husband dies, the situation is compounded. There is a funeral to pay for, and the stigma to be faced when few people attend, although if monks have been visiting and providing counselling to the family, they may contact the Pagoda to assist with the funeral. If there is property remaining then there can very often be conflict about who should inherit. Often by this time the mother suspects she also is infected and has to face the prospect of her own death and of an uncertain future for her remaining children. It was reported that this can lead women to feel such despair and hopelessness that they consider abandoning their children and sometimes actually do abandon them. Government health workers reported that sometimes women leave their babies in the hospital in the hope that someone will look after them. This can also be the time when families become homeless. Brothel owners were reported to chase out female sex workers and their children if they suspected the woman to have HIV. Families in government sponsored housing (families of uniformed personnel) may also have to vacate on the death of the husband, although it was reported that families of policemen were given welfare by their colleagues.
Although mothers were seen to be central to the lives of children, chronic sickness was reported to mean her having to adopt different survival strategies. Women have less skills, education and status than men in Cambodian society, resulting in fewer income generating possibilities.
Some wives have to sell sex to feed their families. Some women remarry, but often their own children will not be treated as well as any children belonging to her new husband or they will be sent away. It was reported that most women stay on their own and try to manage, often because other men avoid them if they suspect the husband died of AIDS. If the mother is also infected though, she too will eventually grows sicker and the children become carers and income generators, until finally she dies.
Nara's story
Sophy moved with her husband Duong and their children from their home province in Kratie to Pailin so that they could work as gem miners. This proved to be a profitable move and after some time they were able to buy a house and a small piece of land for growing crops. They also had a fourth child – a son after 3 daughters. Just when they thought they were doing well, Duong became very ill. Sophy kept thinking he would recover if only they could find the right treatment. She sold the land to pay for treatment, but Duong did not get better. Sophy tried hard to continue with a normal life for her children during Duong’s illness, but found it very difficult. She just did not have time to care for Duong, make money to buy food and give the children the attention they needed. She couldn’t find people who could help her without payment, and she couldn’t afford to pay. All their relatives, friends and neighbours were far away in Kratie. Eventually Duong died.
Sophy had begun to hear about AIDS by this time, and suspected that Duong had been infected with HIV. Every time she thought about this, she felt like a criminal. She was so ashamed that she could not talk to anyone about it and hid the details of Duong’s illness from his family.
Not long after this, Sophy herself fell ill. Her eldest daughter, Nara who was 12, had to take on the burden of the household. Now Nara had to look after her 3 siblings, including a small baby, care for her mother and find money for food. Every day Nara worked with the gem miners to dig holes 5 meters deep to find gems. Sometimes she was lucky, but most times her efforts were in vain. Nara worried about her Mother. It had been terrible to lose her Father, and Nara did not like to think what would happen to her if she lost both parents. When the baby also became sick, everything became too much for Nara. Sophy sent a letter to her sister, who came at once.
They sold the house and remaining possessions to pay for travel, and returned to Sophy’s sister’s house in Kratie. Only 5 days after they arrived, Sophy died. Several weeks later, the baby also died.
Sophy’s sister is herself a war widow with three children. She has continued to care for Nara and her two sisters after Sophy’s death a few months ago, but has found this difficult since she has no skills which would help her find a job, nor capital to start a business.
The community have been good to the family. They know that Sophy and Duong died of AIDS, but they have not isolated them. They would like to give more support to Nara and her sisters, but they themselves have few resources. None of the 6 children in the household have been going to school, but they would very much like to be able to.
Shortly after Sophy died, a couple from outside the community who live across the river offered to adopt Nara’s 9 year old sister Rie. The Aunt signed a contract saying that Rie’s relatives cannot claim her back once she has gone to live with the adoptive couple. Now she is worried she has made a terrible mistake. Rie misses her sisters and they hear that she wants to come back. They do not know if she is being well treated or not.
Nara helps her Aunt as best she can, but she appears listless and depressed and cannot concentrate on her tasks. Her Aunt thinks it will take Nara a long time to come to terms with what has happened and worries about her future.
5.2.2. Issues for Children Whose Parents have died of AIDS
Participants explained what can happen to a child whose parents have died of AIDS. Participants said that orphans usually either go to the grandparents, to other relatives (uncles, aunts, cousins), to live with the monks, are formally (if not legally) adopted, go to an orphanage or are abandoned to live by themselves on the streets. Small numbers are adopted by foreign families, and these are usually babies. Where people know that one or both parents have died of AIDS, participants reported that there was more reluctance on the part of relatives, monks and outsiders to care for the children and that orphanages and the street were more likely options. There was little mention of ‘child headed households’ existing yet in Cambodia, and the western concept of formal foster care with appropriate monitoring, although being tried on a small scale, is not widespread.
Property and Inheritance
One of the issues that can make a big difference for children who have lost both parents is being able to keep property, land, animals and other assets that belonged to their parents. Many participants, however, reported bitter disputes at the time of death, when relatives and others would claim these assets and even falsify land deeds and property titles. There can be an added burden where children are expected to pay off their parent’s debts and may be bonded into labour by the money lender, or forced to beg until this is done.
It was reported that land rights vary enormously and that laws are currently being prepared on the legal status of land property. There is a tradition of family inheritance, but often disputes arise where ‘uncles’ arrive to claim land from orphans. It was reported that the military often take land from vulnerable families.
Grandparents
Grandparents were the favoured option of the majority of participants since they were seen to have close blood ties to the orphaned children and would therefore be motivated to care for them. It was also felt that living with grandparents would result in children not being looked down on by the neighbours. Unfortunately in Cambodia, there are relatively few grandparents. Only 4% of the population is over 60 years compared to 10% in Singapore. (29) Quite often, those adults dying of AIDS were themselves adopted by these ‘grandparents’ after their own parents died during the Khmer Rouge era. Grandparents also have concerns and difficulties of their own. Most will have given up work and will themselves be dependent on their extended family. Some are ill and infirm and find it a problem to have to start work again. Because of their age, they are usually denied credit, which makes it difficult for them to start small businesses. Very often, an older orphan will have to generate income for the grandparent and other siblings. Even despite this, grandparents as carers were seen to better provide for orphans socially, psychologically and physically than anyone else. The terms ‘love’ and ‘parental affection’ were ones used most in conjunction with grandparents, who were considered able and willing to nurture children in a way their natural parents might have done. This concept of nurturing was not associated with other options for orphans.
[Footnotes
(29) HelpAge International. "Summary Report on The Situation of Older People in Cambodia" 1998. Report with the Cambodian Ministry of Scoial Affairs, Labour and Veterans Affairs]
Other Relatives
Children sent to live with other relatives after the death of their parents were said to enjoy a mixed fate very dependent on the good, or not so good, intentions and nature of the relative in question. Participants were suspicious of the motives of a poor relative who would take on the care of an additional child or more rarely, children. They felt that often the child would be seen as an investment, either for labour in the relatives home, if a girl, or for income generating or agricultural work outside the home if a boy. They felt that there was also a possibility of them taking a child to eventually sell to a brothel or as a bonded worker elsewhere. Many participants felt that orphans are treated as having a lower status than other children in the family, are expected to do more work, get less food, are not able to attend school and are subject to more violence. Where relatives take on the care of orphans because they feel it is expected of them, participants felt that there would be resentment which would result in abuse. It was felt that relatives are much less likely to offer to care for an orphan where one or both parents are known to have died of AIDS. Orphans themselves, felt they had to be extra nice to other relatives who took them in, just in case they got angry and abandoned them completely. They complained of a lack of freedom and of not having the time or opportunity for play and entertainment. Those other relatives caring for orphans who participated in the appraisal on the other hand, were worried that the children would not return their care as they got older. They felt that the orphans in their care were not likely to feel any obligation to look after them in their old age and were worried how they would cope.
Adoption
Sometimes, childless relatives or non-relatives will formally adopt an orphan and bring them up as their own child - although this practice was reported to be unregulated with no vetting procedures or monitoring. This was a situation that often came up as an ideal for orphans in the appraisal. This scenario, although relatively rare, would mean that the child could see him/herself as being like other children and have a chance to develop through childhood into skilled adults. This type of formal adoption, however, was felt to apply to single children only and that there was little likelihood of childless relatives adopting a number of brothers and sisters together. At other times children can be adopted by way of contract by people outside the family. Again, participants were suspicious of any poor person taking on an extra burden without an ulterior motive.
Monks
There are now over 3,000 Pagodas throughout Cambodia. Monks traditionally take in orphans, mainly boys but also girls over 7 years either to participate in religious life, or as workers in the Pagoda. Children usually need a formal introduction for this to happen, either by parents before they die, or by a respectable relative. Pagodas can only support a small number of orphans since they are totally reliant on offerings from the surrounding community. Those they do take in, however, are clothed, fed and educated and have the prospect of a relatively good future.
Monks also provide food and shelter to other children in need, but do not commit to their education or socialisation. On certain days, any left over food in the pagoda was reported to be given to people in need, particularly children. In two participating pagodas, however, there was a great deal of tension between the monks and nuns and what they described as gangs of children who took food before they were offered.
Orphanages and Children’s Centres
There is a government orphanage in most provinces, and several NGO Children’s Centres around the country. Most adults felt that institutions were the best solution for orphans, but the children themselves disagreed. Those orphanages visited as part of the appraisal were providing basic food and necessities and sometimes a level of education to the children, but the children had other priority needs they felt were not being met. Mostly they felt that a sense of belonging (to a family or community) was missing, and they hated being ‘different’ to other children. One orphan said that ‘even children who live on the street look down on us because they have parents and we do not’. Despite this, adults continue to send children to orphanages, so much so, that the applications far outweigh the places available.
Emotional Impact
Very often, siblings are split up to spread the resources, and children have to move from the area or community they call home. In cases where the parents have migrated for work, they have never met their extended family and may encounter a way of life that is entirely new. They may be separated from all people familiar to them and become depressed as a result. Being separated from brothers and sisters was reported to be as traumatic as losing parents, since siblings can be a tremendous solace and source of support.
Orphans may also be suffering from the effects of grief and stress. Those whose parents have died of AIDS may also worry that they themselves are infected, or may have a sibling who is sick from HIV who may soon die. They can also feel that they have in some way caused their parents death and suffer from guilt. They may be very tired and in ill health from caring for a dying parent and from trying to look after their siblings. It was reported that all these stresses, plus ill treatment from relatives sometimes forces children, mainly boys, to run away to the towns. This places them on urban streets and potentially in even greater danger.
Children on the Street
There was some confusion about the term ‘street children’. In Cambodia, the majority of children seen living on the street are living there with their parents.
Children on their own sometimes live in gangs. They
may have parents elsewhere, or may be orphaned. Girls were seen most often to end up in sex work and to be highly vulnerable to rape on the street. According to the adults in the appraisal, these gangs have a bad reputation for petty theft, bad behaviour and glue sniffing. Adults reported that street orphans are pale, thin and dirty and that they are not attractive to people who may otherwise be motivated to help them. Orphans who took part in the appraisal complained of malnutrition, ill health and having nowhere to wash. They were also very worried about being terrorised by gangs – teased, beaten and of having food and money stolen. Conversely, children also reported taking care of one another in gangs on the street by showing who would be good to beg from and by massaging each other when they got sick. Gangs were seen as a form of solidarity against adults who exploit children living on the street. These children said they had nothing at all - no household utensils, mosquito net nor bedding. Often they had to resort to theft and other forms of crime. They felt they had no chance to participate in society. Sometimes they fall foul of the police who may beat them or send them to reform school. Very occasionally it was reported that police would offer protection.
True Stories
After their parents died of AIDS, 5 children aged between 4 and 17 years went to live in squatter area of Phnom Penh with their grandmother. The grandmother is 62 years old and is often sick herself, but has started a small business at their house to sell cake and oil and ground nuts. She got the money to start the business from people who gave donations amounting to $10 during the funeral of the Mother. With another $10 from a local NGO, she was able to start her business. The NGO has also been giving 10kg of rice each month to the family, but has said that they will not be able to continue with this. The oldest sister stopped studying and now buys ducks eggs which she boils and re-sells. The grandmother is worried because their income is very low and the children don’t have enough food. The youngest child, a 4 year old boy is HIV infected and is sick very often. The rest of the children are still sent to school because the grandmother sees their education as a priority. At the primary school, the teachers are on a very low salary and have to ask for extra payment for private classes. The grandmother cannot afford to pay for this.
Sombat is 17 years old and lives in Phnom Penh with his five brothers and sisters. Sombat is the third born in the family, he is pale and suffers from anaemia. Three years ago his father died of AIDS, then in 1998 his mother also died. Sombat remembers when his father became ill and how his mother blamed his father for bringing HIV into the family. His parents fought a great deal about this and the household was very stressed. After his mother died, Sombats elder brother developed chronic depression, and died in an accident. Sombat and the remaining children have a house which was left to them by their parents, but have little furniture and few household materials. They do not have enough food to eat even though one of the girls also dropped out of school to get a job selling newspapers. The younger children are able to continue school, but do not go regularly. At the weekends all children including the youngest who is 5 years old, go out to try and find small jobs they can do to earn food or money. Sombat says their neighbours never come to visit, but that they do have an aunt they can go to for food every now and again. Other children in their neighbourhood refuse to play with the younger brother who is aged 9 years. He doesn’t mind because he has friends at school who don’t know the family situation.
Orphans Group
"I work hard to make others love me"
"I want not to have to beg"
"I want to make friends and eat sweets"
"I want a school bag so that I can look like other children"
"I want the same rights and freedom that other people have"
Facts
There were stories during the appraisal about outsiders selling girls to brothels or trafficking them to Thailand.
There are reported to be 21 children’s centres in Phnom Penh, which care for 1798 (695 girls, 1103 boys) orphans in total. Thirty nine of these orphans were reported to have HIV.
Participants reported that children newly orphaned may appear to be badly behaved because they have difficulty concentrating, get angry easily and appear sad and anxious. They may be punished for this behaviour.
Survival strategies for orphans living on the street were reported to include selling sex, begging, helping street vendors, picking through rubbish for something to sell or eat, and taking food from restaurants that customers have not eaten.
5.2.3 Issues for Children with HIV
Participants from the community generally had little knowledge about the situation of children with HIV, so most of the responses in this section came from NGO and government staff working directly with these children.
Participants reported that children with HIV are less likely to go to relatives and more often go to orphanages or live on the street. They felt that relatives are more likely to accept and love children if they understand well about HIV and know the true situation. Some participants felt that children with HIV were less likely to be loved or benefit from investment in education because they will die soon. Others felt that reverse to be true, but that sometimes poor people find it difficult to cope emotionally with a child who is sick and in pain and wish they would die soon to end their suffering. It was reported that sometimes children with suspected or confirmed HIV/AIDS are not adequately diagnosed or treated due to the mistaken belief that it is a waste of time as they will die anyway.
Hospital workers said that there is a problem of follow up for children with HIV, that carers need training and support so that relatives don’t just leave the child in hospital.
HIV positive children usually have the same illnesses as children without HIV, but they may be more severe, frequent and difficult to treat. It was seen as very important that carers follow both preventive measures and early treatment of symptoms. Routine immunisation was seen as particularly important for children with HIV, with the exception of BCG (TB) vaccination if the child is already in advanced stages of AIDS. Good nutrition and basic hygiene were seen as vital. As with HIV positive adults, a balanced diet of nutritious foods is very important to maintain the immune system.
Despite the risk of infection through breastmilk, it is recommended in Cambodia that all babies are breastfed for at least 4 months, as the risk of illness through alternative feeding practices is much greater. Many poor families cannot in any case afford formula milk.
Like all children, participants said that children with HIV should go to school, play with friends and feel loved by their family.
Despite there being no risk of infection to other children through normal social interactions, children with HIV suffer particularly from the fear surrounding transmission of the virus. Parents and teachers, worried that other children may be at risk, do not allow them to play or mix in a normal way. Participants reported that this can have a strongly negative psychological effect on the child who is isolated.
Some of the more serious illnesses that children with HIV may have, such as PCP, toxoplasmosis and cryptococcal meningitis are extremely difficult to diagnose and treat in Cambodia. Participants reported that hospitals may only be able to offer pain relief, but that it is important to make sure that parents and carers are clear about the likely progression of their child’s condition in order to begin to plan ahead.
Policies on the prevention of mother to child transmission of HIV are currently being developed in Cambodia. However, the National Centre for HIV/AIDS, Dermatology and STD (NCHADS) has stated that it is not one of the main priorities in the current Cambodian context. HIV testing and subsequent treatment of pregnant women has begun on a small scale in selected hospitals in Phnom Penh, but is unlikely to become widely available in the foreseeable future.
True Stories
Participants said that in their experience, a child infected by his mother has at least a 60% chance of surviving more than one year in Cambodia, and that with good prevention and care, they may live much longer than this.
Sothiny's father died when she was a baby. From the time of birth, Sothiny had suffered from persistent diarrhoea and skin infections. At the age of 3, after a particularly serious episode her Mother took her to hospital. They tested Sothiny's blood without permission and told her Mother Sothiny would die of AIDS. Sothiny's Mother did not understand then when they explained about HIV . Now 2 years on Sothiny is still alive and her Mother is starting to hear people talk about HIV. She realises this is what Sothiny has and is worried about herself and her other children. Sothiny has remained more sickly than other children causing her Mother to have to stay off work and use limited resources on drugs. Even though she is a happy child, other children don't always want to play with Sothiny because she is often coughing and has unsightly rashes. The mother can't forget that she was told that the child would die and wonders whether to bother paying school fees if this is the case.