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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