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The Brian Shaw Children's Centre looks like any other nursery. Tiny multi-coloured hand prints decorate its glass front door, a giant drawing of Noddy and Big Ears hangs on one wall and toy dinosaurs litter the carpeted play area. The only difference between this nursery and most others in the UK is the make-up of its pupils. Each pupil or a member of his or her family is infected with HIV.

Adults' experience of living with HIV is well documented. But what problems do children with HIV face? What do they have to cope with when their parents, carers or siblings have HIV? And what professional help and support do they need?


In the UK at the end of December 2002, there were 752 children aged up to four diagnosed with HIV, 287 children aged five to nine, 236 aged 10 to 14 and 1,226 aged 15 to 19. For the same period, 371 children aged up to four had developed Aids, 97 five to nine year olds, 57 children aged 10 to 14 years and 91 young people aged 15 to 19.¹

An average of nine children a day attend the nursery at the Brian Shaw Children's Centre. Most have parents with HIV and some are infected themselves. The nursery sits discreetly next to Lighthouse West London, part of the Terrence Higgins Trust national HIV charity. It opened three years ago after Brian Shaw, who died in the former Lighthouse residential unit, left a substantial sum in his will to build a children's centre. Parents who attend Lighthouse use the centre. There is no sign outside to identify it and it has a separate entrance so parents feel comfortable using it.

Secrecy is one of the biggest problems children with HIV face, says Rosemary Turner, children's service co-ordinator at family HIV charity Body and Soul.

"Children feel fear and a strong sense of having to live with a secret. They feel particularly isolated because they can't talk to other children about living with HIV."

Body and Soul's children's service provides education, play and emotional support to children living with HIV from birth to 13. Children aged 10 to 13, with a mixed knowledge about their own or their families' HIV status, attend the Base weekly group. The Base HIV+ group runs monthly sessions for 10 to 12 year olds who know they have HIV, and the Teen Spirit group operates weekly for 13 to 19 years old, who are aware they or someone in their family has the virus.

Turner says clients from Teen Spirit and the Base HIV+ group give talks to each other about their lives: "We believe there is a huge advantage in sharing experiences and learning from each other for young people of different ages."

Beulah Gordon is children and families manager at London-based HIV charity Positively Women, which works with 17 HIV-positive children and 56 children whose siblings or parents are infected by the virus. It provides advocacy work, parenting skills courses, one-to-one therapeutic work for children and their families and a Saturday youth club.

Gordon says children who know they have HIV often worry how their friends will react if they find out and whether or not they will find a partner or have sex. "Having HIV can be very debilitating, both emotionally and physically, for children."

Medication for HIV-positive children is a problem. With no specific medication available for children, they receive the same as adults. Apart from the volume a child has to take every day, side-effects such as diarrhoea and nausea disrupt their schooling and social contact. Difficulties also arise because some children dislike swallowing medication and there is a strict medication schedule that has to be followed.

And on top of this, some parents have not told their children that they have the virus. "Children often don't understand why they are taking the drugs because their parents have not told them about their HIV status. They are trying to protect them from the associated stigma," says Gordon.

Art Ramirez, managing director at Raft Surrey, says that for HIV-positive families when to tell children about their parent's status or to inform the child that they are HIV-positive is a challenge and there are also serious confidentiality issues. The charity, based in north west Surrey, supports four HIV-positive children and 24 children affected by HIV aged under 15, all unaware of their status, and their families.

Sheryl Burton is director of social inclusion at the National Children's Bureau, which has a national policy forum on HIV and children and young people. She says HIV-positive children are often invisible: "Parents express many reasons for not wanting their children to know about HIV in their family, not least because of a fear of discrimination and stigma should the child disclose the information to anyone." She adds that children whose parents have HIV may also become their carers if they fall ill.

Despite it being nearly 21 years since the first person died of Aids in the UK, Ramirez says Raft Surrey still faces "major problems" when working with health and social care professionals as local authority children and families teams sometimes disagree over what constitutes a disability: "They may not consider a child with HIV disabled or ill, nor consider a child at risk so we find these kids fall through the net."

Teachers and schools do not always react appropriately to children with HIV. Turner acted as a facilitator between a client and a school after they excluded him on discovering he had HIV. "It was unbelievable how much ignorance they had about transmission of HIV. They thought it could be caught through sharing cutlery." When one of Gordon's young clients bit a boy in the playground, staff thought it necessary to disinfect the boy's hand with wipes.


So what should social care professionals do to help children living with HIV? Turner says services must address their long-term emotional and psychological needs. She adds: "Sending them on a one-off trip to somewhere like Alton Towers might seem like a good idea at the time but it does not build a foundation to help them cope in the future."

Lighthouse West London regional manager Adam Wilkinson recommends social care professionals update their knowledge and training on HIV. "Yes, social workers have a duty to protect children from harm but they also have to provide them with appropriate support and referrals."

Social care staff should not lose sight of the clients' young age, Gordon says. "Children living with HIV are children first and need to be treated as such. HIV shouldn't make them unique and it shouldn't be what professionals see first."

¹ Aids/HIV Quarterly Surveillance Tables, Public Health Laboratory Service Aids Centre and the Scottish Centre for Infection & Environmental Health, February 2003

Abigail's story

Abigail is a healthy four-month old baby who tested HIV-positive at birth. She is currently being cared for by her maternal grandparents, Cyril and Rose, who are both in their sixties, while her mother Tina is in prison for aggravated theft.

Tina is an intravenous drug user, who had been working as an escort to buy drugs when she became pregnant. She was eight months pregnant when charged and Abigail was born before she was convicted. Tina had not attended any antenatal clinic appointments but received antenatal care in prison, at which time she was diagnosed with HIV. When Tina was imprisoned Rose agreed to take responsibility for her grandchildren rather than have them go into care. The family receive support from Raft Surrey.

Cyril and Rose were initially shocked to discover that both their daughter and granddaughter had HIV. The couple are also caring for Tina's two older children, five-year-old James and seven-year-old Leah, who are both HIV-negative and do not know about their mother and sister's status. Their father, Tina's ex-husband, lives overseas, but Abigail's father is not acknowledged or known by Tina.

Rose stopped working as a clerk to look after her grandchildren but is tired and stressed. Abigail is bottle fed, and rarely sleeps for more than two hours during the night, although she is not currently on any medication. Rose asked her health visitor to find a day nursery for Abigail but the social worker responsible disclosed Abigail's HIV status to every nursery and they refused to accept her. The situation was only resolved after the social services director stepped in.

Cyril and Rose feel they can no longer cope, especially if Abigail becomes seriously ill. They are concerned about their daughter's future and their grandchildren's welfare. Tina has told them she wants her children back when she leaves prison in three months time.

Lighthouse: a beacon of hope

Toby is three years old and has attended the nursery at Lighthouse West London for nearly a year. He lives with his mother Agnes, an asylum seeker from west Africa. She is HIV-positive and Toby's father died a year ago of an Aids-related illness. He does not have HIV and is too young to know about his mother's status and why his father died. Toby is settled at the nursery and really enjoys the company of other children. Agnes says this is because they live in a small room and Toby is often alone with her. She attends a computer course at Lighthouse while Toby spends the day in the nursery. Her course runs for two days a week and she goes to the centre to do her homework on the computers on the other days.

A few months ago the lease ran out on Agnes's flat and the council rehoused them in accommodation five miles away. It was a traumatic move for both. At first, Agnes tried to bring Toby into the nursery on public transport but she was unwell and had to give up her course place and Toby was no longer able to use the nursery. Agnes says she felt isolated and Toby missed the nursery.

When she felt better Agnes was able to bring Toby back to the nursery. At first he was shy but his key worker introduced him to some new faces and Toby was soon playing. Agnes hopes to move back to the area and says because Toby is happy at the nursery she has regained her desire to continue with her course.