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

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 children9s 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 child9s 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 practitioner9s role will need to build on existing relationships with specialist providers and take account of parents9 concerns. Key messages With appropriate help from the paediatric HIV team when necessary, all parents were willing to register with a local general practitioner and to disclose their child9s HIV infection Parents remained oriented towards the specialist paediatric HIV team as their main source of medical care and looked to the general practitioner largely for routine prescriptions Parents preferred to go directly to the paediatric HIV team when their child developed new symptoms because of their own uncertainty about how to distinguish between “normal” childhood symptoms and those related to HIV infection Parents were reluctant to consult their general practitioner because they observed that he or she did not feel competent to treat HIV infected children and because they were concerned about the difficulties of maintaining confidentiality in a busy surgery