General practice and the care of children with HIV infection: 6 month prospective interview study.(Statistical Data Included)

Abstract

Objectives To describe the use of primary care services by children infected with HIV and to explore the attitudes of their parents to the role of general practitioners in their children's care.

Design A 6 month prospective study. Quantitative analysis of "contact diaries" kept by parents; qualitative analysis of face to face interviews with parents.

Participants Parents of children receiving care at a regional referral centre in London.

Results Twenty four families (80% response rate) were recruited to the study. In 19 families the mother was black African. Half the children had been diagnosed with symptomatic HIV infection, half with AIDS. All the children were registered with a general practitioner who knew of the child's HIV infection. In five families there had initially been tensions in their relationship with their general practitioner but by the time of the study all but one family had established at least an "acceptable" relationship. Children with symptomatic HIV infection saw their general practitioner a mean of 7.5 times per patient year; for children with AIDS the figure was 5.8. Parents regarded the paediatric HIV team at the hospital as their primary source of medical care. Three factors constrained their use of general practice: their own anxieties about distinguishing "normal" symptoms from those related to HIV infection; their view that their general practitioner did not feel competent to treat HIV infected children; and their concerns about maintaining confidentiality in the surgery.

Conclusions Parents remain oriented towards the paediatric HIV team as their primary source of medical care and use general practice largely for routine prescriptions for their children. Any further development of the general practitioner's role will need to build on existing relationships with specialist providers and take account of parents' concerns.

Introduction

In principle, general practitioners have a potentially important role in the care of people with HIV infection.[1-4] As advances in medical treatments mean that more people are living longer with HIV infection, a greater proportion of their care is expected to be shifted from specialist units based in hospital to the community. The end of "ring fenced" funding for specialist HIV services is likely to fuel this process and support the argument that general practitioners should become more closely involved in the care of their patients with HIV infection.[5]

Although children constitute an important group of patients in general practice, issues in the provision of care to children with HIV infection have remained largely unexplored. By the end of July 1998, 855 children had been identified as HIV positive,[6] and antenatal surveillance programmes suggest that this number is likely to increase.[7] Debate about the appropriate role for the general practitioner requires an understanding of how these children use general practice and the attitudes and concerns of their parents.

Sample and methods

The study was approved by the ethics committee for St Mary's Hospital, London.[8] Between 1 September 1993 and 31 December 1994 the paediatric HIV team at the hospital provided care to 64 children (in 60 families) who tested positive for HIV antibody, of whom 30 children (in 30 families) met the criteria for inclusion in the study: HIV infection confirmed, alive, living in south east England, and living with a carer well enough to be approached for interview.

Twenty four families (80%) …