IAFN International Anglican Family Network THE IMPACT OF HIV/AIDS ON CHILDREN

the orphans, but on families and transmission or through sexual or drug EDITORIAL communities worldwide. As the articles abuse. Jesus, incarnate as a child, called on which follow make clear, in some parts of his followers to care for children. We, According to the State of the World’s the Anglican Communion the statistics who celebrated His birth at Christmas, Children Report (2006) some 15 million are known and horrifying; in others, the must give higher priority to this call. children have already lost one or more known numbers are small but the parents to the HIV/AIDS epidemic. Of problems of combating ignorance and those orphaned by AIDS, 12.1 million, or stigma are huge. This newsletter focuses IAFN International Anglican Family Network more than 80%, are in sub-Saharan Africa on the impact on children. The picture IAFN HAS MOVED but the number is growing elsewhere as above, drawn by a child, shows only too Change of postal address well. The Anglican UN office in Geneva clearly the impact of HIV/AIDS – a young C/o Anglican Communion Office, has been working on a study on the life is turned upside down. This terror St Andrew’s House, Anglican Response to HIV/AIDS in Africa comes to those whose parents are 16 Tavistock Crescent, (see overleaf). It has stories of practical infected and who have to cope with action and of different denominations and stigma, illness and death; to the Westbourne Park, faith groups working together. And we children who have to become adults to London W11 1AP, ENGLAND need such encouragement and concerted look after their siblings; and to the email: [email protected] effort in the face of the devastating effect children themselves infected with the Tel: +44 (0)7948 332697 of the pandemic, not only on the lives of virus, whether through mother-to-baby January 2008 WORKING TOGETHER – REPORT OF THE ANGLICAN RESPONSE TO HIV/AIDS IN AFRICA

In many ways I’m not an expert on AIDS. CHURCH WITNESS This despite having been busy over the past six months overseeing a study on the Anglican response to HIV and AIDS to put before the World Health Organisation and UNAIDS and to encourage us Anglicans in working together on the challenge. The people who are the experts are those whom we have come across: children, women and men who find themselves living with HIV or affected by AIDS and who do so with great dignity and courage. They are experts on the impact that AIDS has on every aspect of life; but at the same time on what the response can be. Both are found in stories. Always those stories are humbling and profound. Inevitably the officers, nurses, pharmacists and communities around the world. impact on children touches us most counsellors. There is also a children’s club We worship a God incarnate, who we deeply, as it should. offering psycho-social support. Children believe is among us and therefore to be Hard to tell the whole Anglican story in can express themselves and get over their found in the midst of the world’s places of our study, so we focused in on a few small anger. Near Kakamega, the ‘Jikaze’ struggle – places where AIDS has corners of Africa. From Tanzania comes support group was a vital lifeline to 40- decidedly not gone away; where, in fact, it the story of St Albans parish near year-old Fanhae Emitunga: “The greatest is more than ever at the top of the Korogwe where 70 children aged from enemy is self stigma” she says, “The agenda. One senses that the more we can three to 15 years – all of them having lost church helped me overcome it.” Now her work together in our response, the more one or both parents to AIDS – are cared condition is stable and she is able to look we will discover a unity of purpose and for and supported in their education and after her four children. identity amidst our diversity, and the health needs by parishioners. They are The good news is that Anglicans are more we will live out a Gospel of from different denominations and responding here and, as this newsletter incarnation which addresses the truly religions (18 are Muslims). There is no shows, in many other countries and important issues of our day. agency or donor. The parishioners continents. This flowering of initiatives themselves find the means despite the and creative responses is all the more fact that their own resources are meagre. effective because it draws its energy from In Kenya, Maseno Anglican Hospital the grassroots, from the faith and provides a comprehensive level of committed application of Christian treatment offered by doctors, clinical principles by individuals and church SOUTH AFRICA

RAPHAEL CENTRE obtained life-skills and good nutrition. their HIV status, treatment can be When I first met Pamela she was five This was beneficial because their health provided. We also educate women about years old and too weak to walk. She was improved and they suffered from fewer ways of minimising transmission of the carried everywhere on her mother opportunistic infections. However, after virus to their baby. Nonkhundla’s back. Nonkhundla found the Government had been compelled by The Raphael Centre supports 160 AIDS- out that both she and Pamela were HIV court cases to make treatment available affected children like Pamela. There is no infected, after months of suffering and to the poor, we were able to ensure that orphanage in our community and we recurrent illness. She spent all of the Nonkhundla became one of the first in support children in the homes of family’s meagre income at the Sangoma our region to be treated with ARVs. This caregivers. Children living in AIDS- (witch doctor) undergoing agonising was immediately successful and she now affected homes have a higher rate of rituals for the banishment of evil spirits. has an undetectable viral load. We were absenteeism than their peers, and are Eventually, almost as a last resort, she then able to argue that Pamela also more likely to leave school altogether. visited the Raphael Centre for people needed treatment. Subsequently, Pamela This can be attributed to the stigma still living with HIV/AIDS in Grahamstown. became one of the first children in surrounding AIDS and those associated Nonkhundla’s greatest fear was that she our community to receive paediatric with it, and the financial burden placed on would die before her child and she had ARVs. We also have a programme children with parents unable to work. At heard that we sometimes look after sick geared toward preventing children like the Centre we try to counter this by children. Pamela from ever becoming infected. paying school fees and providing school At that time, no anti-retro viral (ARV) Our prevention of mother-to-child uniforms and emergency food parcels. treatment was available to poor people in transmission targets pregnant women and We believe that encouraging orphans and South Africa. Our support of Pamela and encourages voluntary counselling and vulnerable children to stay in school for as Nonkhundla involved ensuring that they testing. If pregnant women are aware of long as possible increases their life 2 chances. We have had remarkable success. across sub-Saharan Africa. Major South Africa has developed various In the past six years, only two out of international agencies concerned with the policies addressing the impact of the several hundred children supported by us needs and rights of children, such as epidemic on children. Interventions have dropped out of school. UNICEF, advocate that residential care targeting vulnerable children focus on the Pamela, the child who was too weak to must only be a temporary “last resort” provision of Home– and Community- walk, is now thriving in school. She is for children without parental care. based Care Services and the bright, agile and, according to her teacher, These agencies and literature repeatedly establishment of community Child-Care capable of whatever she sets her heart reiterate negative impacts on children Forums to identify and support children. on. The last time I spoke with the nine- resulting from residential care: e.g. it The Orphans and Vulnerable Children’s year-old, she was not quite sure of her marginalises children from society and Policy Framework, in addition, future career plans but was dreaming of results in stigma; it fails to transfer critical recommends the provision of formal becoming either a rock star or a famous life skills to children resulting in their foster-care placements for orphans in an fashion model. being inadequately prepared to cope with attempt to reintegrate orphaned children life when they leave care; it frequently fails back into families. to respond to children’s individual needs It was due to the strength of civil society – characteristically prioritising the needs and HIV/AIDS activists that the South of the institution.1 African Government was not able to St Anne’s Homes, a shelter in Cape Town downplay the enormity of the epidemic. Instead, under the leadership of the which cares for and empowers pregnant, Deputy President, the Government’s ST ANNE’S HOMES abused and homeless women and their response improved and the Government, The impact of HIV/AIDS on the South children, has been overwhelmed by the through the President’s office, has called African child is enormous. Of the 1.5 scourge of HIV/AIDS. We believe that the on religious communities to help in million orphans in South Africa (maternal sacred bond between mother and child addressing key social problems, including orphans under the age of 18) about two must be preserved at all costs. In the past HIV/AIDS. thirds were orphaned due to AIDS, with few years, we have received a number of 300,000 becoming orphans in 2006 alone, referrals suggesting the mother and child The Anglican Church in South Africa, according to the Actuarial Society of be separated because of their HIV status. under the leadership of Archbishop South Africa report in 2006. We constantly have to stress that HIV is Njongonkulu Ndungane, is playing a Orphaned children experience enormous not a good enough reason to separate a central role in addressing the issue both pressure as they often have to assume child from its mother, especially when within the Communion and on an adult roles in treatment, care and there is sickness. At the same time, we interfaith level. For more information on support. Surviving siblings suffer stigma have been struggling, due to a lack of the church’s programmes visit and discrimination in their communities. capacity, to meet the needs of www.fikelela.org.za and for more They are also much more exposed to temporarily ill HIV-infected mothers and information on shelters for mothers and violence, abuse and exploitation and drop children. In one such case, where the children visit www.stanneshomes.org.za out of school for a variety of reasons. In mother became so sick that we could not 1Home Truths: The phenomenon of addition, orphaned children experience keep her in our care, we were forced to residential care for children in a time of AIDS, the loss of caregivers and lack of access refer her to an organisation that runs an 2007:9 to essential services such as education adult hospice and orphanage. Although and health care. the child was not with the mother, at While residential care is widely perceived least they were in the same organisation. as the last resort for addressing children’s St Anne’s Homes have since had to care needs, orphanages are mushrooming expand their own HIV/AIDS programme. 3 ZIMBABWE – MANICALAND DIOCESE

During my visit to Zimbabwe in June 2007, I was involved in charity work with the Mothers’ Union in Manicaland, travelling around some of the rural villages and communities providing assistance to orphans and others in desperate need. Orphans and vulnerable children in Zimbabwe experience much struggle and hardship in trying to cope with the daily pressures in a nation greatly entangled in economic and political problems and where aid is scarce. The number of children affected by or living with HIV/AIDS has been rising in Zimbabwe. Manicaland, one of the country’s ten provinces, has approximately 200,000 orphaned children. I was fortunate enough to be able to discuss some difficulties with an orphan named Chipo who was aged about nine. She shared with me some of the tough experiences that she faced when she lost saw leaking roofs, broken-down toilets their families and loved ones by providing both her parents to HIV-related illnesses. and broken floors. One orphanage, counselling services, helping them create Chipo lost her father first and was left attached to a hospital, used to have a happy memory family books, and alone to bear the burden of caring for her garden which was self-sufficient, but now providing relaxation and therapy centres ailing mother for six months before she the borehole and the supplying well are for them to adjust to their circumstances. too died. She could not have managed at dry and the leaking pipes need The Mothers’ Union also tries to identify all without the help of her widowed replacement. Much effort is being parents who wish to foster, adopt, or neighbour who sometimes assisted when made throughout the country to limit provide holidays, overnight or long she was away in school by looking after placements in orphanages and find better weekend breaks for the children. her sick mother and her other two ways of having children remain in their Mothers’ Union members also visit the siblings, one aged five and the other two. communities where they might be able to orphans to befriend them and promote Chipo looked sickly and weak and very experience more of family life. life skills. They may assist the youth with miserable and now lives with eleven The Mothers’ Union makes a great effort training for such projects as how to form children, all of whom have lost their to relieve hardships and make the and run savings and lending groups, and parents. I wanted the elderly woman who orphans’ lives a bit more bearable by farming activities such as chicken-rearing now looks after her to take her to providing them with food, clothing, and crop-growing to sustain themselves in hospital but I do not think she did blankets, books and toys as well as access the future. because it is quite a distance without to medical and health resources. They Provision of support to vulnerable, reliable transport. also give financial assistance so the disadvantaged and HIV/AIDS orphans is There are many others like Chipo, who children can attend school. Housing and an on-going exercise for the Mothers’ are forced to look after themselves and accommodation assistance are provided. Union in Manicaland and we are looking to head households. Others have During the visit, the Mothers’ Union forward to expanding our work to cover widowed grandmothers to look after members handed out blankets to many more communities and villages. The them, but they too have no resources and orphans (sadly there were not enough for Mothers’ Union meets regularly with need help themselves. The orphans are all those who had been identified). leaders of the church, village elders and very vulnerable as they could be To raise money for these projects, the members of the community to discuss subjected to all kinds of serious abuses Mothers’ Union engages in activities such how everyone can best contribute such as child labour and sexual as selling and trading household towards the successful building of a exploitation. commodities and vegetable marketing. better society. The Mothers’ Union is Where lives of orphans in their village or Members of the community assist in the grateful for all those who contribute community have been found to be building and construction of schools, wholeheartedly for the betterment of unsustainable, they have been placed in some by providing bricks from their own these suffering children through the orphanages. Many of these depend on resources and others by moulding the generous donation of time, finance and church funds and donations and with the bricks on site. other help. economic problems facing Zimbabwe at Psychological support is given especially the moment, the Diocese cannot cope to AIDS/HIV orphaned children so they with the repairs and they are terrible. I are able to cope with saddening losses of 4 INDIA

risk target groups – the sex workers, remaining family. They may be denied truckers and drug users – and only 20% of their property and inheritance rights, AIDS funding goes to caring for children often face discrimination from the and families living with HIV. One out of community, and must deal with fears for every three people infected with HIV is a their own health. Alarming new evidence woman, and 80% of these women are by UNAIDS found that orphans and housewives. That has a direct link to vulnerable children have a higher risk of children. exposure to HIV than non-affected Children whose parents have HIV/AIDS children. also suffer: many are forced to withdraw Girls are especially vulnerable. They are from school to care for them, are forced not only more likely to be removed from to work to replace their parents’ school to care for sick family members income, or are orphaned. Although the but are often the last to receive medical Government has not conducted studies care. Loss of family income quite often to assess the number of children affected pushes them into the sex trade and by AIDS, some experts calculate that inability to control safe sex, even within nearly two million children in India have marriage, puts them at a disadvantage. lost their parents to AIDS: this is the Less access to education, sexual abuse largest number of AIDS orphans of any and child marriage, all place girls at higher country and is expected to double within risk of becoming infected. Many families five years. India is now home to the marry daughters off at increasingly young largest HIV-positive population in the ages so the girls will have someone to world with 5.7 million infected. In May care for them after their parents die. 2006, the Joint United Nations Parents are also afraid of HIV rendering Programme on HIV/AIDS (UNAIDS) them unmarriageable. This has the added India has the largest child population in reported that India had overtaken South effect of creating a lot of very young the world, with more than a third of its Africa to become the first non-African widows. country to report such alarming population below the age of 18. They are Rupa (name changed) was only 13 when seen everywhere: the railway and bus numbers. The disease is silently spreading and reaching critical proportions. The she was married. Widowed when she stations; begging or vending at traffic sheer size of India’s population – more was 14, now at the age of 15 she is living signals; or homeless and lying on the than one billion – makes the probability of with HIV. She was blamed for the death of pavements. They can be seen in villages, in a widespread AIDS pandemic frightening. her husband. Her siblings were thrown the fields, in orphanages, even in brothels. out of school because of her HIV status. They are virtually everywhere, yet are HIV/ AIDS worldwide carries stigma and Her family was discriminated against in invisible, being virtually unnoticed by the taboo. India is no exception and the the community. She has no place at her culture of silence is predominant. world. They are the missing face of India! parent’s home or in her husband’s house. Protection means providing empowering Rupa never received any education and Children are a vulnerable group to education. In India, the conspiracy of has no skills for employment. Still a child, HIV/AIDS, whether they are infected, silence continues to subdue the sex she lives on the streets, begging for food. affected or at risk of contracting the education and HIV/AIDS interventions in virus. Children get infected by several schools. In a country where 70 out of 100 She is sexually abused by the older men means. Mother-to-child transmission is children already drop out of school by in the streets, including the police. the most common source of infection in secondary level, children affected or Sometimes she earns a few rupees from children at a rate of 30,000 per year. infected by HIV/AIDS face significant them. She is expecting her baby soon. She However, transmission is through sexual barriers to attending school. These does not even know that her child could exploitation for the most vulnerable include discrimination by teachers who be prevented from contracting the virus. children and those at the margins, such as separate them from other students or The question is, even if she knows, how street children, child sex workers, deny them admission entirely. HIV- can she prevent it? When she went to the sexually abused children, children of sex affected children often have frequent nearby hospital, she was asked to leave workers, children from lower castes and absences due to opportunistic infections because she is a “bad girl”. Rupa has no Dalits (so-called untouchables) and that schools do not tolerate. The children place to go, and yet is soon bringing through blood transfusions; and fear revealing that they are HIV-positive in another life into this world. Who is unsterilised syringes, including injection order to ask for special measures; and the responsible to care for both these drug use. While 25 million children in loss of a family wage earner leaves them children and the millions like her in the India are parentless, the number of unable to pay school fees. They are also country? It is time for everyone to wake sexually abused children in India is the expelled from schools if any member of up. The Government, the civil society in world’s largest, with a child below 16 the family is found to be HIV-positive. India – and the Church – need to address the concerns of children and impacts of raped every two and a half hours, a child Becoming orphaned is not the only way AIDS on them, by protecting them from below ten every 13th hour, at least one in children are affected by this epidemic. every ten children has, at some time, There is also a devastating impact on abuse and violations of their rights. Today been sexually abused according to a new their emotional and psychological is the time to nurture the future of the government report. Also according to wellbeing. They are missing their entire country. Quoting Gabriel Mistral official statistics, in India hundreds of childhood as they go immediately into “…To them we cannot answer thousands of children are living with adulthood at a very young age. They are tomorrow, their name is Today.” HIV/AIDS. However, government the most common caregivers for sick programmes and policies and parents and eventually watch those interventions among the NGOs are least parents die, after which they all too often for HIV-positive children and for those must step into adult roles themselves, orphaned. The Indian response to becoming the guardians of younger HIV/AIDS has focused primarily on high- siblings or working to support their 5 BANGLADESH

Bangladesh is lucky. While the HIV virus arranges seminars with community was first found in the country in 1989, it leaders (Imams, priests, local political still has a comparatively low rate of leaders) and government staff to enthuse HIV/AIDS. According to government them to actively raise awareness of HIV statistics in 2006, only 874 people from a and how to prevent its transmission. This population of 150 million have tested is complemented by other work with positive for HIV. However, this is likely to adolescents and adults to promote underestimate the true scale of the women’s rights and raise their status in problem, and many people point to the society, which will make it easier for fact that Bangladesh is a high-risk country women to have more control over their with an increasing infection rate. The two sexual health. main factors allowing HIV transmission in All of this is having an impact. People, Bangladesh are unsafe sex practice in a especially youth, are more willing to talk growing sex industry and returning about HIV/AIDS, and many are passing on migrant workers who, having acquired the the message to family and friends. virus when working abroad, infect their Attitudes are changing. For example, wives when they return home. when people attend the barber, they are It is within this context that the Church now more willing to buy a new blade than of Bangladesh Social Development use a previously used one as before. Programme (CBSDP) has carried out its Some Imams give speeches in Mosque HIV/AIDS awareness and prevention during ‘Jummabar’ (mosque weekly activities since 2003. People are made service), inspiring people to follow the aware of HIV transmission, prevention rules of religion to prevent HIV workers) their work is important. They and treatment through community transmission. However, cultural attitudes try to ensure as normal a life as possible discussions, video shows and drama to sexual health are deeply ingrained, and for the sufferers, supporting them to live presentations, while brightly coloured will take a lot longer to change. Ironically, at home with their family and providing billboards and posters help keep the topic the fact that the HIV rate is low and very monthly health checks and medical in the public’s mind. CBSDP also arranges few people know an AIDS patient, treatment. Some organisations also have a workshops for groups of people prevents many from appreciating the special focus on children, supporting particularly vulnerable to HIV infection, urgency needed to avert the possible AIDS orphans by providing fees to enable including bus and truck drivers, rickshaw sudden steep increase in HIV infection. them to continue their schooling, pullers, day labourers and people of People with HIV in Bangladesh still face negotiating with village leaders and others transgender (hijra). Special attention is stigma and discrimination. Many people should there be any problems, and also given to children and youth, with think that HIV and AIDS is a punishment providing nutrition support to the some teenagers given special training on that they deserve. Whole families suffer, children and women. Without this how to raise awareness among their becoming stigmatised from society and support, these orphans would probably peers. Visits are also made to schools, can be refused food from shops. Because leave school and face a life of begging. supporting the teachers in using the of this stigma, most HIV-positive people HIV/AIDS material that has recently been It is our prayer that all organisations can do not want to tell of their infection. continue to work together to prevent included in government text books. The CBSDP has links with other NGOs that hope is that no-one can say they are the ravages of HIV/AIDS spreading work with HIV-positive people, providing throughout Bangladesh. ignorant of the risks of HIV. treatment and support for them. While But CBSDP acting alone will not be the numbers are not huge (one enough to change people’s attitudes. organisation has 455 registered HIV- Therefore, to increase understanding and positive members including 134 female, help reduce discrimination of HIV/AIDS 295 male, 24 children and two within the wider community, CBSDP transgender – most of them migrant ARGENTINA

The Siwok Foundation was set up to help many health hazards. In 2006, the theme preserve and promote the cultural, was HIV/AIDS (SIDA in Spanish) and artistic and social values of the indigenous participants wore a T-shirt bearing the peoples of Northern Argentina. One of question in their native language: Hä its concerns is the health of these people lehanej tä SIDA? (Do you know that AIDS who inhabit the great flat scrub forest exists?) Adults and children alike take area known as the Chaco. part and there are prizes for different age The largest group is the Wichi and one ranges. The 2006 marathon was a fun way innovative way of drawing their attention of highlighting a new and very dangerous to health issues is the annual ten-mile threat to the lives of these people. long Wichi Marathon. First held in 2003, this is a major social event with a serious message. Every year the marathon has a special theme, focusing on one of the 6 TRINIDAD AND TOBAGO

adapted for Trinidad and Tobago with the Family Planning Association (Trinidad and Tobago), has been instituted both in schools and churches. CHAMP (Collaborative HIV/AIDS Management Programme for Families) works with parents and teens aged 11 to 14 together, to strengthen family life, educate about HIV/AIDS and encourage teens to make wise choices. Lisa and her daughter Ishara attended a pilot course at All Saints Church, Port of Spain. Lisa works for the Trinidad Guardian and in her (patois) column she spoke of the benefits of the course: Of course, it have alternatives to quarrelling. Me and Miss Thing start taking a workshop the other day. When you there struggling with your child, you does tend to feel you is the only one going through whatever it is. You feel you is the only mother who does get answer back, or can’t get the children to bathe, or who child does come home smelling like cigarette and you don’t know what to do. Jonniebelle is a well-known figure in the relationship. Her husband became openly It interesting to go to it because, as you beautiful Caribbean islands of Trinidad unfaithful to her and she was physically must realise by now, I have a little and Tobago. Her wedding three years ago abusive to him. Her marriage of ten years problem with my temper. The last time in was covered in all of the major ended in divorce. To ease her pain, she the class they ask parents what does newspapers. Her fame stems from her turned to marijuana, alcohol, cigarettes make them trip off, I tell them my wares courage in telling her story of living with and promiscuity. washing story, blushing red red fus HIV, which is still a taboo subject in In 1991, she began to wonder if she had I shame. But when I look around, much of the country. Not many associate cancer. She was losing weight, had sores everybody laughing – not at me, but with the Caribbean with HIV/AIDS but on her body, dizziness, fevers and swollen me. Is because everybody there, man and Jonniebelle's story illustrates the impact glands. Friends told her that she should woman, rich and poor, does go through of HIV on the lives of children throughout be careful about one of the men with thing like that with their children once the these islands. whom she had been having an affair. As children reach a certain age. At the age of nine, Jonniebelle had her her condition worsened, she decided to Two things I realising from this workshop. first sexual encounter. She was raped by have a medical check-up. After various One is that I never miss a parents’ her elder brother, the same one who tests she discovered that she was HIV- support group until I had one; and two is introduced her to a church that he was positive. Jonniebelle’s world crumbled that it good to have more information attending. At the age of 11, her brother underneath her. She was filled with rage and a different perspective on how to be raped her again. Jonniebelle, who had and anger. a better parent. been such an outgoing girl, became a Incest, abuse and family breakdown are prisoner of her emotions. She was rife in these islands and the effects echo In a country where more than 2% of the transformed into a withdrawn, angry down the years. Many voices have begun population is living with HIV and where individual with low self-esteem. to speak out about HIV/AIDS in Trinidad stigma and discrimination are still rife, Her school work suffered and she today. Jonniebelle asked God for a second these are small but crucial steps to finished school without a proper chance and has been given the protecting our children and ensuring a education. opportunity to share her experiences healthy future for our communities. Jonniebelle continued to attend church, with many churches throughout Trinidad going through the motions. At 17, she and Tobago. met a young man, an evangelist, and two Others have been concerned to provide years later they were married. They had programmes for education. Within the five children but the effects of being raped last six years, a programme developed at as a child affected the marriage the University of Illinois in Chicago and GUYANA

HIV/AIDS was first identified in Guyana in infants and young children are: transmission is an integral part of all antenatal 1987; in 1988 five women were among the 34 primary prevention – preventing unwanted clinics. new cases. Statistics now show that women pregnancies and HIV transmission from The impact of this disease on families in are 39% of all cases reported and 600 infants women to their infants; and provision Guyana is overwhelming. The sad fact is that were infected with HIV during pregnancy, of care and support to HIV-infected despite the advertisements promoting safe labour, delivery and breast feeding. women, their children and families. In sex and encouraging young people to abstain Approaches to prevent HIV infection in Guyana, prevention of mother-to-child until marriage and the distribution of free 7 condoms, some of the males believe they affects the poorer class and Guyana has no churches, schools and clubs, and the cannot contract the disease. A large Social Security to assist persons in need, the distribution of hampers – especially to percentage of these men are married and carer has to devise ways of survival. This children who are vulnerable. indulging in extra-marital relationships. This often leads to children begging on the streets, Recently Mothers’ Union members, including reckless behaviour puts the unsuspecting wife prostitution, and sexual abuse, which in turn myself, spent one week in the hinterland area at risk and when she becomes pregnant the can lead to the further spread of the disease. educating and training a group of indigenous child is also at risk. If the couple already have These children are not a part of the school people of Guyana on HIV/AIDS, and also children and, as is the custom, the woman training 12 of them to train others in the leaves it to the last moment to attend a clinic system, leading to illiteracy, a scourge in the past but more recently almost non-existent in future. This is one way of doing God’s work or have the baby at home, there may not be in his beautiful garden and putting our faith Guyana. While the number of vulnerable the opportunity for them to be counselled into action. and possibly tested for HIV. If the parents do children is unknown, in 2002 the estimated carry the virus and become too ill to work or number under 15 who had lost one or both die, there is no one to care for the remaining parents to AIDS was 4,200. child or children. In some cases a The Mothers’ Union continues to work grandmother or even an older sibling may actively in various ways to assist: we are have no choice but to take on the involved in school feeding programmes, responsibility. literacy classes for youths ages 14-30, HIV- Due to the fact that this disease generally awareness talks and workshops to groups in PAPUA NEW GUINEA

son mentioned in school that his mother and father were living with HIV, the attitudes of the son’s classmates changed towards him. The teacher had to intervene by giving the class HIV/AIDS awareness lessons. Children living with HIV are more likely to be excluded from school because students and even teachers are afraid of being infected. They can be traumatised when they care for their ill parents. A young boy cared for his dying mother until she passed away. He was then cared for by relatives but they more or less ignored him and he had to fend for himself. He subsequently found out he was HIV-positive. By the time help was available for him, the infection had progressed to full blown AIDS. It was too late and he died. Children are traumatised Papua New Guinea, with an estimated been reported correctly. Is it possible when they are orphaned or population of almost 5.9 million people, is that there is a high rate of sexual abuse – separated from family and may be the most populous nation in the South we do not know. From 10-14 years, there passed on from relative to relative. Pacific region (UNICEF 2005). It is a are 698 estimated children living with Because of abuse, some of the young population with 40% under 15 HIV. In this age range the main mode of children end up living rough on the years of age. infection is through sexual abuse, sex streets. According to the Human Poverty Index work, sexual behaviour and blood They are sometimes isolated. for 2006, 40.5% of Papua New Guineans transfusion. This is also the main mode of Other parents might tell their live on less than a dollar a day and transmission for those between the ages children not to play with a child according to AusAID estimates, HIV rates of 15-19 years, with 5,553 estimated they know or assume to be living are growing at about 25% per year. children living with HIV. with HIV. This is partly as a result of Within 20 years, 40% of the adult The impact of the HIV /AIDS pandemic fear for their children being infected. Children living with population could be living with HIV and has affected all aspects of PNG society HIV/AIDS are forced to accept AIDS. both in urban and rural settings. It is their situation and survive as best as It is estimated that there are now 10,946 estimated that there are 138,108 children they can. children and young people infected by living in AIDS-affected families and a total HIV, and 1,543 children aged two and of 620,585 children are at risk of They are more likely to live in under are living with HIV. The main mode 1 infection. 1UNICEF: Master Plan of Operation 2003- of infection here is at birth. For those aged between two and nine, the Some of the problems facing children 2007, Programme of Cooperation between estimated number of children infected affected by HIV/AIDS are: Government of Papua New Guinea and UNICEF with HIV is 3,152. It is difficult to state the They are more likely to face stigma (2006) Families and Children Affected by main cause of infection in the age group and discrimination. A mother living HIV/AIDS and Other Vulnerable Children in due to the fact that ages might not have with HIV told me that when her Papua New Guinea 8 families where resources are more parents die, the relatives might not Due to the increase in orphans in the limited. This is because resources be able to absorb the children left behind country, we have set up the orphans and that would have been used for into their own families. vulnerable children’s project in Lae school fees, good food and Intervention Programmes (PNG’s second largest city). We currently generally maintaining a standard The Anglican Church runs a number of have 18 children registered. These of living, would go towards intervention programmes most especially children have lost one or both of their medication, transport to a clinic in remote parts of Papua New Guinea. parents due to HIV/AIDS. We provide and medical bills. Parents who are These are Counselling training and food and clothes, and help the families in working might also lose pay as a training in Home-based Care. The getting medicine. Counselling is provided result of being sick. A lot of majority of the people in Papua New organisations do not have an Guinea live in rural areas. Access to to the children to assist them in dealing HIV/AIDS policy. medical care is often some days’ walk with the trauma of losing their parents. They are more likely to also take up away. Trained home-based carers are now Once a fortnight, the children are adult responsibilities which means able to provide palliative care in their brought together to play games and just that they might not be able to communities. have fellowship with one another. attend school. Some children might An important way of reaching younger A number of them do not attend school have to go out and work to members of the villages is through Peer as their families cannot afford the school augment their family’s income. Due Education Training. This a two-week fees. to lack of available work, sex work course where people are given HIV/AIDS I’ll conclude by quoting from the Anglican might be the option that is available. training to become volunteer Peer Church of PNG, HIV/AIDS policy: “We Educators. The participants then go back Unlike in parts of Africa, we have not yet hope for a future where we can help seen a significant increase in child-headed to their villages and speak to their peers families. This is mainly due to the about HIV/AIDS. The Peer Educators are reverse the spread of the HIV and AIDS: tradition and culture in Papua New given materials by the church such as where there is hope and not despair; love Guinea whereby relatives and family posters, leaflets, exercise books and and not hate and healing not hurt: and members are usually available to foster or writing materials to assist them when where we can live out the call of Jesus to informally adopt children. However, the speaking to their communities. The main love one another as he loves us.” level of care and support within the objective of the Peer Education families that the children receive might be programme is to facilitate behaviour inadequate and, as stated earlier, the change. Knowledge about HIV/AIDS children are sometimes discriminated reduces stigma and discrimination against against and abused. Unless the HIV families living with and affected by pandemic is adequately addressed, as HIV/AIDS. SCOTLAND

positive in their own right. This has continued as the profile of the epidemic in Scotland has shifted, with increasing numbers of people from sub-Saharan Africa being diagnosed, many of whom have children. Waverley Care has also consistently used a holistic approach and there has always been a strong emphasis on the spiritual care of those with whom we work. Since its earliest days, the organisation has employed a chaplain who has always happened to come from an Episcopal background. Speaking to children affected by HIV, shows that children and young people have very clear ideas about what would make lives better for themselves and, indirectly, their parents and families. They include: WAVERLEY CARE emphasis on working with children and the opportunity to talk about Waverley Care has been working in the the “affected family”. (By “affected” we parental HIV openly field of HIV/AIDS since 1989 and because mean that there is a family member, more information about HIV illness of the nature of HIV infections in usually a parent, who is HIV-positive.) We Scotland, especially in the early days when are fortunate that good ante-natal care better support and understanding many intra-venous drug injectors were and screening means that there are very in school diagnosed, there has always been a strong few babies born in Scotland who are HIV- better relationships with social 9 workers and health professionals Scottish Episcopal Church, in direct of secrecy about HIV in the family. Many response to HIV-positive people develop inappropriate roles within the more activities where they can expressing a need for help with day-to- family to try to compensate for parental meet with other children and young day living, and we continue to respond to illness. The Positive Help volunteer 1 people in similar circumstances. that same need. By listening to what befriender gives safe, supported time out HIV is still a relatively new phenomenon people tell us and responding to requests for the child to talk, to be listened to and and we discover new information about it in an uncritical, non-judgmental way (with to feel valued. Uniformly, these children on a monthly basis. Whilst children do absolute clarity about the boundaries of express a need to “belong” and to be not need to be burdened by the detail of our role), we are able to enhance the “ordinary”. Activities such as teaching changes, they do want to know the basic well-being of service users and their them to swim and taking them to the facts in order to make sense of what is ability to manage better within their cinema, enable them to build the happening to their family member. homes and communities; and to support Waverley Care is fortunate that our confidence and skills that can help them a vulnerable, disenfranchised, often Children and Families Worker has been join in. This in turn supports social with the organisation since 1991 and is a unpopular, population to gain control, integration and acceptance by their peers. trusted friend to the many children who dignity and independence within their It is known that the social and behavioural over the last 16 years have come to her. lives. While public perception is that HIV difficulties which manifest themselves is no longer a problem in the UK, within this group of children are greatly Waverley Care’s experience is that it is all especially with treatments being available, too easy for the needs of HIV-affected reduced by their involvement with high numbers of new diagnoses children to be over-looked or to get lost Positive Help. Many families use the within statutory services where they are continue, and care and support becomes project where they are not in touch with not a priority for support. Too often the increasingly complex. Positive Help other services or where others have support comes when the child is currently has almost 1000 service users. failed to sustain contact. The impact on beginning to miss school or misbehave at Children affected by HIV are difficult to the welfare of the entire family is school. Working with affected children at support, mainly because stigma and fear immense, and can help to keep families an early stage can help them and their of discrimination prevents both the together. Our main aim is to try to parents come to terms with HIV in the children and the parents from asking for prevent a further generation of damaged family and move on to deal with all the help; while ill-health, lifestyle and social other issues that face families in everyday adults displaced within society, with disadvantage often make it hard for life. complex mental health needs and parents to keep up with the needs of a 1 dependency problems, and we work to “Listening to children and young people young, well family. Despite treatment now whose parent or carer is HIV positive”, give the children a sense of purpose, being available, many parents are still not Children in Scotland 2002. possibility and fun. consistently well and, sadly, the external Our longest standing “befriending” social circumstances of these families relationship – 13 years –- finally came to an have not changed significantly. Many end this year, with the now grown-up children live with one parent, often in young woman leaving school and complex family units. Many of the service starting out on her adult life. users who contracted the virus through The acknowledgement between the injecting drugs in the 1980s now have “befriender” and the young woman of the second families, bringing some young POSITIVE HELP value of their time together was children to our service. However, loss Positive Help offers practical help to and anticipated loss remain ever present immensely moving but illustrated that if people in Edinburgh living with HIV. It was in their lives. This is especially so now the work has boundaries and is supported, established in 1989, originally through the with increasing numbers of parents co- an ending can happen that is a positive and infected with Hepatitis C, also contracted empowering moment for both young when they were injecting drugs, becoming person and volunteer. When asked what it very ill with advanced liver disease. This was that was most important in their time means long periods of ill-health and together, this young girl said that HIV hospitalisation for the parents and dominated every aspect of her life, but in therefore separation from their children. the “befriender” she had someone who There are also renewed problems with knew about HIV in her family but allowed childcare and foster care, with a fear of her the freedom simply to forget about it separation for the young people and the and go out and have fun and talk. “She parents, not just about the children being made me laugh” was her final remark. taken away, but also about siblings being separated and the fear that this may become permanent. Current and problematic drug use had decreased for most of these young people but some parents are using drugs again to deal with THE NEXT FAMILY the fear and stress of becoming ill and the NETWORK NEWSLETTER possibility of dying. is to be on issues arising from Poverty, deprivation, social exclusion, the recent consultation, held in discrimination, harassment, bullying and Seoul, on aspects of Violence threats of violence are commonplace. The majority of children carry the burden and the Family. 10 CANADA

The Teresa Group was founded in 1989, in cooperation with, but separate from, The Hospital for Sick Children in Toronto. It provides programmes and services for children living with or affected by AIDS and their families. From some five families in the first few years, the Teresa Group now serves over 350 families with 670 children. In the early days, it cared for families with infected children, but as it grew, the needs of affected children began to be addressed. In order to receive service, a family will have one member under the age of 18 and one who is infected by HIV or AIDS. In the early 1990s, many babies who were infected at birth died before the age of five, but with the advent of medications now given to mothers during pregnancy and to the baby for the first weeks of life, there are fewer deaths in early childhood and medication now keeps many children healthy. Some children who the Teresa Group has known for many years are now completing High School and entering post-secondary education. An important programme developed by the Teresa Group is the provision of free infant formula for babies of HIV-infected mothers. Due to the high cost of formula, some mothers were considering breast-feeding their babies, despite the possibility of transmitting HIV to their Two wonderful books, a quilt, masks, The Teresa Group also has a Food Bank children (around 18%). This programme artwork, to name just a few things, have that gives families food that can help with now covers the province of Ontario and been produced by the groups. The results school lunches and with healthy snacks. formula is provided for the babies for the chronicle their own emotional journeys At the start of the school year, a backpack first year of life. and serve as educational tools to other is given to each school-age child with As we better understood the emotional children and youth who perhaps do not pencils, pens and paper. Getting through needs of children in families affected by have access to this type of support schoolwork can be very difficult, so a HIV/AIDS, a group support programme system. During this 2007 Leading the tutor can be provided to help a child started. Leading the Way began in 1995 Way series, the children and youth have through the curriculum. and addresses the loneliness, isolation worked on the creation of a therapeutic and depression so often experienced, as garden. Thanks to the generosity of There are more light-hearted provisions well as the stigma that remains among the Riverdale Farm, the programme has been too, such as gifts for birthdays and other public despite much education. Here the given some land to grow plants. The major events of the year and a big party children may talk openly about living with concepts of being connected to the earth, with music and lots of wonderful food the secrecy and stigma of this disease. renewal and growth will be particularly (donated) that happens towards the end Asked how coming to the group sessions significant to the children who have lost a of the year. helped, one child answered: "Knowing family member to AIDS. Many of the Here in Canada we are fortunate with that other people are like me with my children in the Leading the Way our health care system and with the health issues feels good, because those programme do not have access to excellence of medical care at Toronto's people don't seem different from people gardens, or may not know how their Hospital for Sick Children. Together with that don't have HIV/AIDS, so it tells me contents can restore and heal. We look them the Teresa Group is able to make a that that's the case with me too." forward to getting dirty and watching the real difference in the lives of families The beginning of spring always marks the children and the garden grow and affected by AIDS. Since I retired in 2000, start of another Leading the Way blossom. it has been a real joy to see the continuing programme. Since 1995, the programme Out of this experience, have come other growth and development of the agency has supported children and youth affected supportive groups: for HIV-positive and to watch the children grow. by HIV/AIDS. Throughout the years, the women during their pregnancies; for facilitators have found many innovative mothers with new babies; and for mothers ways to work with the children as they with toddlers. They too can feel very struggle to understand and cope with the lonely as they face the special problems impact of HIV/AIDS on their daily lives. that HIV brings to this time in their lives. 11 USA

Teens in the Valley of the Shadow of from the Children’s National Medical Archbishop of Canterbury's Death Centre and a prevention trainer from Message for World AIDS Day Washington, DC is the nation’s capital. It Planned Parenthood taught the six-hour is also a geographic region with the prevention training workshop to the It is important that we do not allow highest rate of HIV infections in the youth over two Saturdays. Parents ourselves to be paralysed by this challenge; people do not have to die – United States. One in every 20 residents became involved and attended two drugs and treatment are available – the is HIV-positive and one in every 50 people meetings in advance to determine the in the city has AIDS. The disease has scandal is that access is so often contents and scope of the training. Teens limited and it is hard to see where exploded among people who are poor, were taught how HIV spreads and what justice lies in the way resources are have been in prison, are addicted to drugs behaviors put people at increased risk of sometimes distributed... or alcohol and lack health insurance. It infection. Added focus centered on has especially impacted African-American The churches have not always indirect risks like drug use or alcohol that residents. The problem is also increasing challenged as they should the stigma can impair judgment and prompt more that is attached to HIV and AIDS in among people over 50 years of age and risky behaviours. The training included many countries. They have failed to those under 25 years old. say that those living with HIV/AIDS are Trinity Episcopal Church, a predominately the correct use of condoms, given their proven effectiveness as a prevention God's beloved children, with dignity, black congregation including African- liberty and freedom. What is owed to practice. The training also emphasised Americans and people from the them is what is owed to any human Caribbean and Africa, decided that it that teens teaching other teens is the being made in God's image, and the would perform a special role amidst this most effective prevention training. more we are trapped by thoughts and health crisis. Trinity is also a parish that Once the peers were trained, a images about stigma, the less we shall mobilised its members into community workshop was held in late fall to involve be able to respond effectively. actions to reverse the rising rates of other teens in prevention training. Prior www.archbishopofcanterbury.org/ infection of HIV and AIDS in the District to the training workshops, a cookout was releases/071128.htm of Columbia. Trinity sponsored, a year held featuring hot dogs, hamburgers, juice ago, a citywide summit for religious and fruit. The trained teens then leaders to organise the engagement of conducted the prevention training of PRAYER the faith community in combating the other youths in small groups. They wore high level of infections. Last spring, the T-shirts the youth designed themselves ALMIGHTY GOD, government of the District of Columbia’s and that declared: “Peer Health Look in your mercy upon children and Department of Health ventured in a new Advocates Trainers” or PHAT, a term all who suffer from HIV/AIDS – direction and awarded a grant to the meaning “hip” or “cool”. Concurrently, including those who do not know that Trinity Development Corporation to they have become infected; separate prevention workshops were organise a community outreach service held for parents, since parents also Give grace to children and relatives programme to promote treatment and needed to be informed of effective who look after members of their prevention of HIV/AIDS among District prevention practices. Nearly 50 teenagers families who are too unwell to look residents. after themselves, to the detriment of and parents attended the half-day While Trinity’s HIV/AIDS outreach parenting, family income and programme targets the population most prevention training event. Finally, a schooling opportunities; at risk – especially those between 25 and smaller group of teens circulated more than 500 flyers in the community Protect those made orphans and 40 years whose lifestyle increases their strengthen their resilience; chances of being infected – Trinity’s surrounding the church to alert residents rector and pastor insisted that special about the high rates of prevalence of HIV Bless those who give appropriate medical treatment, sexual health services be organised and focused on and AIDS in Washington. At the next day education, pastoral counselling and prevention activity among young people service of worship, the teens were practical support, and be close to under 25 years of age. Youth have the celebrated for their service to their those who, at present, are sadly lowest rate of infection and are also most peers. Now the church is engaged in beyond reach of these; likely to adhere to knowledge and sending out its peer trainers to serve Energise your Church in its ministry practices taught in prevention training. other faith-based and community groups of calm, care and compassion: and in Special workshops were organised for to expand its prevention services among its witness to the generosity of your various populations, and a special teens in the valley and shadow of death. saving love, especially to the young; programme was developed to serve teens in the parish and community. through Jesus Christ, our Lord. A group of a dozen teenagers were Amen recruited and enlisted in a prevention Revd John Bradford training programme to develop the ability to be peer educators. A health specialist

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