Clinical and psychosocial service needs of children and families affected by human immunodeficiency virus in Europe

Background: Although human immunodeficiency virus (HIV)-infected children h ave specific service needs, uninfected children born to HIV-infected mother s are also likely to be profoundly affected by HIV, However, there has been little systematic documentation of services available for families with HI V infection in Europe or any investigation into service use by families and their satisfaction with current provision. Methods: A two-part survey was carried out: interviews with service-providers in 15 paediatric HIV centres in Europe were carried out to obtain information on current provision of c linical and psychosocial services. This was followed by an anonymous, self completed questionnaire survey of parents and carers of children attending ten of these 15 centres, Results: Most (nine out of 15) centres had weekly case-loads of more than ten HIV-infected and -affected children. Three-quar ters (138 out of 182) of the families surveyed included at least one HIV-in fected child. In most (13 out of 15) clinics a psychosocial professional wa s routinely available, in addition to paediatricians. Service users reporte d general satisfaction with clinic organization, such as medical appointmen t schedules, continuity of in- and out-patient care and coordination of adu lt and child appointments. The level of information provided was considered satisfactory by most service users, although parents tended to be less sat isfied than alternative carers. Sick parents and unemployed respondents had the highest level of service use and three-quarters of service users repor ted unmet service needs. Conclusion: The range of services provided was rem arkably similar across countries, which may reflect the fact that all centr es were referral centres, However, the challenge of meeting the outstanding service needs of certain families remains.