Secrets and lies

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.