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

Abstract

Background: Although human immunodeficiency virus (HIV)-infected children have specific service needs, uninfected children born to HIV-infected mothers are also likely to be profoundly affected by HIV. However, there has been little systematic documentation of services available for families with HIV 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 clinical 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-quarters (138 out of 182) of the families surveyed included at least one HIV-infected child. In most (13 out of 15) clinics a psychosocial professional was routinely available, in addition to paediatricians. Service users reported general satisfaction with clinic organization, such as medical appointment schedules, continuity of in-and out-patient care and coordination of adult and child appointments. The level of information provided was considered satisfactory by most service users, although parents tended to be less satisfied than alternative carers. Sick parents and unemployed respondents had the highest level of service use and three-quarters of service users reported unmet service needs. Conclusion: The range of services provided was remarkably similar across countries, which may reflect the fact that all centres were referral centres. However, the challenge of meeting the outstanding service needs of certain families remains.