Silenced by stigma

Social work academics and researchers Viviene
Cree, Helen Kay, Kay Tisdall and Jennifer Wallace report on a study
of Scottish children whose parent or carer is HIV positive, which
has led to recommendations being made to the Scottish
parliament.

An increasing number of children in Scotland
live with parental HIV. As rates of heterosexual transmission of
HIV rise, and as people with HIV live longer, so more children find
themselves having to cope with the reality of living with a parent
or parents with a chronic, debilitating and ultimately fatal
illness.¹

But
what makes this different from any other terminal illness in the
family is that children and young people cannot talk about it with
others. HIV still carries such stigma that children often have to
keep this to themselves, for fear of being ridiculed and
ostracised.

A
three-year study of children and young people in Scotland with a
parent or carer with HIV has just been completed. The research was
funded by the Community Fund and jointly managed by the Children in
Scotland agency and the University of Edinburgh’s social work
department. The aims of the research were threefold:

– To
explore the impact on children and young people of living with a
parent with HIV.

– To
find out what social supports these children and young people draw
on.

– To
examine their perceptions of services they currently use or have
used in the past (through both adult-centred and child-centred
services) to find out what, if anything, has made a positive
difference in their lives.

Following postal surveys of
health boards and social work departments throughout Scotland and
extensive negotiations with HIV agencies and with parents with HIV,
interviews were carried out with 28 children and young people in
Edinburgh, Glasgow and Dundee. We also carried out a survey of 74
secondary schools in the three cities to find out more about HIV
education and support available in schools.

We
found that there was a wide diversity in the perspectives of the
children and young people, although of course they shared some
experiences. All those interviewed say they care deeply about their
parent and worry about their parent’s health. Most have already
experienced the death of one parent to HIV.

Although they insist that their
caring responsibilities are similar to those of their friends, when
parents fall ill, children and young people sometimes assume
responsibilities of adult proportions.

This
might include housework and cooking, checking that the parent is
taking appropriate medication, helping with bathing, helping their
parent in and out of bed, cleaning the bed, caring for younger
siblings and supporting their parent emotionally.

Most
of the children and young people say they appreciate opportunities
to talk about the uncertainties associated with having a parent
with HIV. But they experienced difficulties in finding people to
listen and understand, principally because:

– They
do not like to talk to parents about the illness for fear of
“saying the wrong thing” and upsetting them.

– Most
do not want their school to know about their parent’s illness and
so are unable to talk to their teacher about any worries or
difficulties at home.

– They
are not able to discuss these issues with medical or nursing staff,
because services focused on the patient’s needs are not set up to
cater for the needs of affected children.

– They
are reluctant to talk to friends for fear of name-calling and
bullying, or because their parents have told them to keep HIV a
“family secret”.

Some
children and young people have received support through group
activities and one-to-one relationships with specialist workers in
voluntary organisations such as the Barnardo’s Riverside Project,
the Milestone House hospice and Solas project run by Waverley Care,
where they enjoy meeting and having fun with other children and
young people. Here they learn to enjoy themselves without the fear
of disclosing the family secret and then being abused by their
peers. In this safe environment, children can regain control over
when and who to talk to about their troubles.

When
we asked children and young people to tell us what they wish for
the future, their replies were unequivocal. They wish that their
parent did not have HIV. They wish that a cure could be found. They
also had ideas about what could make their life better:

– The
opportunity to talk about parental HIV.

– The
chance to meet other children living in similar
circumstances.

– More
information about HIV.

–
Better support and understanding in school.

–
Better relationships with social workers and health
professionals.

Our
study has resulted in a number of key recommendations to the
Scottish parliament, social work departments, education departments
and health boards in Scotland. These recommendations are equally
pertinent for practice across the UK, since all sectors (social
work, education and health) have responsibilities towards children
affected by HIV as children in need and children affected by
disabilities, within the Children (Scotland) Act 1995 and the
Children Act 1989.

Our
main recommendations are:

1) All
health boards and social work departments should carry out an audit
of need, to identify the numbers of affected children in their
areas, and the kinds of problems they experience.

2)
Children and young people should be consulted both individually and
collectively in the planning and provision of services for affected
children.

3) New
information on HIV (leaflets, posters and packs) should be
published for children and young people, for parents, and for those
working with young people (most crucially for use in
schools).

4)
Children’s workers (social workers, teachers and youth workers)
should be given training in HIV, while adult agencies (including
health boards and social work departments providing services for
infected people) should look more closely at their own responses to
children affected by parental HIV.

5)
Schools should designate a teacher to play a lead role in HIV
education and children and young people affected by HIV should have
a designated person (teacher or other person) to whom they can
turn.

6) All
agencies should re-examine their policies on secrecy,
confidentiality and information-sharing, and draw up codes of
conduct for work with parents and children.

Essentially, all should recognise
the special circumstances of children and young people affected by
HIV. At the same time, we have argued that HIV services used by
parents should also recognise their children’s needs. Meanwhile, we
have produced a set of good practice guidelines for practitioners
who are working with children and young people affected by parental
HIV.

– A
summary of the interviews with children, and fact sheets on the
surveys and good practice guidelines for practitioners are
available from Jennifer Wallace, research and policy assistant at
Children in Scotland: e-mail jwallace@childreninscotland.org.uk

Viviene Cree is a senior lecturer in
social work at the University of Edinburgh. Helen Kay is research
officer at Children in Scotland. Kay Tisdall is director of policy
and research at Children in Scotland and lecturer at the University
of Edinburgh. Jennifer Wallace is a research and policy assistant
at Children in Scotland.

References

¹ Scottish Council
on Infection and Environmental Health, HIV/Aids Quarterly
Report to 31 December 2001, SCIEH, 2002