Thorne, Claire Nicola; (1997) HIV-1 infected women and their children in Europe: An epidemiological study of health and social care. Doctoral thesis (Ph.D.), University College London (United Kingdom).

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Abstract

This thesis aims to describe the characteristics of HIV-infected women and their children in Europe and to investigate their clinical and psycho-social care. Socio-demographic, clinical and immunological characteristics of 2131 HIV-infected pregnant women, enrolled between 1985 and July 1997 in an on-going multi-centre prospective study, the European Collaborative Study (ECS) are described: two-thirds had a history of injecting drug use (IDU) and heterosexual acquisition of HIV infection had increased significantly over time. Five years after delivery, 14% of mothers will have died and 18% progressed to AIDS. Results from two surveys of 55 centres in 1994 and 1997 to identify obstetric policies for HIV-infected women showed that zidovudine use to reduce vertical transmission has increased significantly since 1994. Of the 1123 children enrolled in the ECS by September 1996, 70% had always been cared for by their parent(s) in the first four years of life, but by age eight, an estimated 60% will have lived in alternative care. Maternal IDU, clinical status and single parenthood were the main reasons necessitating alternative care. The hospitalisation experience of 1189 children is presented, showing that infected children were four times more likely to be admitted to hospital than uninfected children of the same age. The final part of the thesis presents the results of two surveys carried out in 1996/7. A survey of service-providers in 15 paediatric HIV centres was carried out to document the provision and organisation of clinical and psycho-social services for HIV-affected families. Service provision was similar, despite national differences in medical and social infrastructure. A survey of 182 parents and carers of children affected by HIV attending the same centres showed that satisfaction with services varied by centre and according to respondent characteristics. The thesis concludes with a discussion of the implications for service development and future research.

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