General practice and the care of children with HIV infection: 6 month prospective interview study

Objectives To describe the use of primary care services by children infecte d with HIV and to explore the attitudes of their parents to the role of gen eral practitioners in their children's care. Design A 6 month prospective study. Quantitative analysis of "contact diari es" kept by parents; qualitative analysis of face to face interviews with p arents. Participants Parents of children receiving care at a regional referral cent re in London. Results Twenty four families (80% response rate) were recruited to the stud y. 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 inf ection. In five families there had initially been tensions in their relatio nship with their general practitioner but by the time of the study all but one family had established at least an "acceptable" relationship Children w ith 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: the ir 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 maintain ing confidentiality in the surgery. Conclusions Parents remain oriented towards. the paediatric HIV team as the ir primary source of medical care and use general practice largely for rout ine prescriptions for their children. Any further development of the genera l practitioner's role will need to build on existing relationships with spe cialist providers and take account of parents' concerns.