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

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%) agreed to take part in the study. Families were contacted up to six times over 6 months between October 1994 and May 1996. Parents were given a diary and asked to note their contacts with all health and social services; this information was collected at monthly intervals. In addition, an anthropologist carried out open ended, loosely structured interviews with parents in their homes. Personal interviews with a qualitative approach were used as the main method of data collection because of the difficult circumstances in which most of the families lived and the sensitivity of the study topics As far as possible, information was collected through naturalistic conversations with parents, which allowed them to define issues in their own terms

Twenty four families kept a “contacts diary” for at least 2 months; and 22 families completed at least one interview on the study topics. A total of 63 face to face interviews were carried out When possible, these were tape recorded and later transcribed. Transcripts and field notes were analysed according to the methods of inductive analysis used in qualitative research.9

Characteristics of the sample

The children were young (median (range) age 5 (1-12) years); 14 were girls. All but one (a Romanian orphan) had been infected through vertical transmission; 12 had been diagnosed with symptomatic HIV infection, 12 with AIDS. In 19 families the mother was black African. In at least six families one or both parents had already died from an AIDS related illness; half the families were headed by a single parent.

Registration, disclosure, and quality of relationship

At the time the study was carried out all the families were registered with a general practitioner, all of whom had been informed of the child's HIV infection. At least two families had not been registered with a local general practitioner at the time the child had been diagnosed, and five families reported considerable tensions in their relationship with their general practitioner around the time of diagnosis. This was most notable in those families in which the child had been the first member to be identified as HIV positive, generally after an extended period of unexplained illness that resulted in an emergency admission to hospital. Three families complained that, before the diagnosis was made, their general practitioner had treated them in an off hand way and had not taken their anxieties seriously; two families were upset by their general practitioner's attitude towards them once the diagnosis had been made and two were angry that their general practitioner had broken confidentiality in divulging the diagnosis to others. At least three families were unwilling to continue with their practice as a result When families were not registered with a local practice or when they wished to change general practitioner, the paediatric HIV team had taken an active role in finding them an interested and supportive practice in their area and in facilitating the disclosure of their child's HIV infection.

General practitioners were often the only individuals locally who knew of the child's HIV infection and, when they expressed concern and offered to help, families greatly valued their support. Whatever their earlier experience, by the time the study was carried out six of the families described their relationship with their general practitioner as “very good” and the rest (with one exception) as at least acceptable

Use of primary care services

The frequency of contact with general practitioners varied according to the stage of the child's disease. Children with symptomatic HIV infection saw their general practitioner a mean of 7.5 times per patient year (median (range) 2.7 (0 to 25.8)), whereas for children with AIDS the figures were 5.8 (2.1 (0 to 18.9)). By contrast, the use of hospital services, especially inpatient care, increased with increasing severity of HIV infection.10

The most common reason parents gave for contacting their general practitioner was to obtain repeat prescriptions for drugs prescribed by the paediatric HIV team. This often did not involve seeing the general practitioner personally. Most parents, however, acknowledged that they also consulted their general practitioner, at least occasionally, for familiar acute symptoms, and even those who looked primarily to the paediatric HIV team for medical care wanted to be in a position to do so should the need arise. The three families who lived outside London were more likely than the others to turn first to their general practitioner for help with acute symptoms.

Constraints on greater involvement with general practitioners

Parents' accounts pointed to three main factors as constraining their use of general practice in caring for their HIV infected children. Firstly, even when children were apparently well and free from symptoms, parents were aware that their health was precarious and could deteriorate quickly. They often felt uncertain about how to distinguish between “normal” childhood symptoms and the effects of the underlying HIV infection or were anxious about how to stop such minor illnesses from developing into anything more serious. In this context, parents preferred to err on the side of caution and to go straight to the specialist paediatric HIV team when their child developed symptoms. This inclination to seek expert advice straight away was implicitly encouraged by the paediatric HIV team through their efforts to make their hospital service as accessible as possible to anxious parents. Whatever its intention, the consequence of open access was to reinforce among parents the notion that they should go straight to the hospital clinic when they became concerned about their child's health. This view was further reinforced by general practitioners themselves, who, like the parents, were often uncertain of the significance of symptoms and routinely referred children to hospital whatever the problem they presented with.

The second theme in the parents' accounts was their observation that general practitioners themselves did not feel competent to treat HIV infected children and thought it was more appropriate for children to be taken straight to the hospital when they became ill In many cases, frequent visits to the hospital had given rise to a close relationship between the family and the paediatric HIV team, and this also acted to exclude the general practitioner from their care. Children themselves were particularly responsive to the sort of personal attention provided by the paediatric HIV team. For many families, the team had taken on the role of primary care providers and neither the parents nor the general practitioner saw any great benefit in complicating matters by involving the general practitioner as well.

The third constraining factor was the parents' concern about preserving confidentiality in a busy general practice. HIV is highly stigmatising, and parents feared that their children would suffer discrimination and rejection if their diagnosis became known. Some parents did not trust their practice to keep the diagnosis private, and indeed those who had changed general practitioner recounted how their previous doctors had disclosed it widely within the practice Others pointed out that each time they attended their surgery, their notes were seen by various individuals, any one of whom could, intentionally or not, divulge their diagnosis. The greater the number of people locally who had access to the diagnosis, the greater the risk that it would become public. Parents thought they could limit this risk by limiting their contact with their general practitioner and going instead to the hospital clinic, which was geographically removed from their local community.

Why are parents reluctant to involve their general practitioner in the care of their HIV infected children?

Previous studies have pointed to patients' worries about maintaining confidentiality in general practice.5 11^–13 In this study, such concerns were closely related to fears that their diagnosis would become known to other people in their community and that they would become subject to stigma and discrimination. These may be particularly difficult anxieties to allay as they derive from the team approach and community involvement that are core features of primary care.

A second factor previously identified was the view that general practitioners lacked knowledge and experience of HIV infection and AIDS11 and that hospital staff were more expert in dealing with the condition.14^–16 This view was also expressed by the families in this study, although they made it clear that their views derived from the attitudes of general practitioners, who routinely referred them to the hospital, and from the actions of the paediatric HIV team, who provided the kind of direct access and personal service more commonly associated with primary care.

A third factor commonly cited—fear of an unsympathetic response to the diagnosis11^–14—was not reported by the families in this study. For a fifth of the families the diagnosis of HIV infection had created difficulties in their relationship and three had changed general practitioner as a result, but by the time of the study all the families were satisfied with their relationship with their general practitioner. This suggests that it may be relatively straightforward to overcome this constraint if efforts are made to match patients with sympathetic and supportive doctors.

A fourth factor, however, has not been reported in the literature before Previous studies have distinguished between problems that are and are not related to HIV infection and have reported a much greater willingness among patients to consult the general practitioner for problems that they perceive as not related to HIV.5 What is distinctive about the families in this study is the parents' accounts of how difficult or inappropriate it is to make such a distinction in relation to children with HIV infection. In the context of such parental uncertainty, it may be more difficult to identify a clear medical remit for the general practitioner.

What is the role of general practitioners?

This does not mean that there is no role for the general practitioner in the care of children with HIV infection. Parents valued their doctors not so much for their medical skill but for the emotional and practical support they provided. As the drug regimens children are prescribed become more complex and demanding to implement, general practitioners may be called on to provide more support of this kind. Any further development of the general practitioners' role, however, will need to build on existing local services and relationships with specialist providers and take account of parents' concerns about the greater involvement of general practitioners in the care of children with HIV infection.