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

Background: Although human immunodeficiency virus (HIV)-infectedchildren have specific service needs, uninfected children bornto HIV-infected mothers are also likely to be profoundly affectedby HIV. However, there has been little systematic documentationof services available for families with HIV infection in Europeor any investigation into service use by families and theirsatisfaction with current provision. Methods: A two-part surveywas carried out: interviews with service-providers in 15 paediatricHIV centres in Europe were carried out to obtain informationon current provision of clinical and psychosocial services.This was followed by an anonymous, self-completed questionnairesurvey of parents and carers of children attending ten of these15 centres. Results: Most (nine out of 15) centres had weeklycase-loads of more than ten HIV-infected and -affected children.Three-quarters (138 out of 182) of the families surveyed includedat least one HIV-infected child. In most (13 out of 15) clinicsa psychosocial professional was routinely available, in additionto paediatricians. Service users reported general satisfactionwith clinic organization, such as medical appointment schedules,continuity of in-and out-patient care and coordination of adultand child appointments. The level of information provided wasconsidered satisfactory by most service users, although parentstended to be less satisfied than alternative carers. Sick parentsand unemployed respondents had the highest level of serviceuse and three-quarters of service users reported unmet serviceneeds. Conclusion: The range of services provided was remarkablysimilar across countries, which may reflect the fact that allcentres were referral centres. However, the challenge of meetingthe outstanding service needs of certain families remains.