Listening to children and young people affected by parental HIV: Findings from a Scottish study

Abstract

This study, conducted between 1999 and 2002, set out to explore the experiences of children and young people in Scotland with a parent or carer with HIV. The study had three elements: a postal survey of health and social work agencies, interviews with twenty-eight children and young people and a postal survey of schools. The study found little recognition from statutory agencies of the needs of affected children, whether in health, education or social work. Moreover, the children and young people who took part in the study bore a heavy burden in terms of stigma, family disruption and loss. Nevertheless, their greatest wish was to be seen as ‘normal’ children with ‘normal’ parents.

Acknowledgments

With grateful thanks to all those who contributed to this study and to the Community Fund for funding it.

Notes

1. For further information, see Kay et al. (2001a; 2001b; 2002) and Wallace et al. (2001).

2. Methodological issues are discussed further in Cree et al. (2002) and Kay et al. (2003).

3. Although we were told about some minority ethnic families who might be willing to take part, these children had not yet been told about their parent's HIV diagnosis, so we ruled them out of our study, unlike Lewis (2001).

4. Given the ages of the older young people in our study, their parents had lived with HIV without the benefit of HAART.